Answer me why...

2010-08-10T21:48:00.002-04:00

Again, long time, no post. I just spend most of my time busy with work and the kids, it seems, and feel like I have little time for much else.

The summer has come and nearly gone, with Ian starting Kindergarten in a week. That's strange to me that he is already five and ready to go to school. He is very excited, yet apprehensive at the same time. As I look back to the last two years that we've had in Charleston, it amazes me to see how much he has changed. He has been through speech therapy to address a stuttering problem and is now working on saying his 's' correctly. He's done well with that and I'm very proud of him. The school schedule is something we'll have to work out as we get into it, but right now it appears I'll be dropping him off most days on my way to work to delay him taking his Prograf as long as possible and getting as close to 8 a.m. as we can. He's excited to ride the bus home. I'm curious to see how long that lasts. I was never big on riding the bus, even when growing up in Utah and the only time we rode the bus was to go on a field trip.

Livia is quite the busy little person. She still climbs everything (Mountain Goat), and is still running and, now, jumping all over the place. She's starting to talk quite a bit, and is at least as opinionated as her mother. Easily as stubborn, too. :) HAHAHAHA She took off on me yesterday while we were downstairs (just she and I) and by the time I turned around, she was already all the way up the stairs. I heard her on the stairs and sprinted to and up the stairs. She was at the top, looked at me with a big smile, and said "Ta-DA!!!" I scolded her for going up the stairs, but also had to apologize for not putting up the gate. I knew I should have done that...

Elaine stays busy with her church calling and taking care of the kids. I know she needs a break, it is just a question of getting her to actually schedule it and go. As tired as she is, I cannot think of a time when she doesn't pull her own weight and then some. Her days are long as my commute keeps me away from the house a lot.

We're now about 20 months removed from Ian's liver transplant, and he continues to thrive. I thank my Heavenly Father every day for that blessing and that we are able to grow and learn together as a family.

2010-02-02T23:33:00.004-05:00

Yep, pretty much I'm a slacker as far as keeping up with the blog goes. Been about 9 months since my last post. That's pathetic (no comments required from the peanut gallery, however).

Part of my own complacency comes from Elaine starting Ian's blog, which you can see here. That being out there now, that's a pathetic excuse (again, comment not required) for not keeping up here, so that a father's perspective can be given. Perhaps it could be useful to someone else.

So, where have we been since April '09? Much has happened, most of it good. Work has been busy, I've traveled to Florida a few times for work, and I've learned a lot. I wouldn't mind ditching the safety responsibilities that I have, but that's not possible at the moment. I am grateful to have a good job that I do, overall, enjoy.

I've watched the political scene in the United States boil over as the country becomes more polarized. I have caught myself getting too caught up in this before, and have tried to remove myself some, with the understanding that I am committed to my own viewpoints. That doesn't mean that someone else cannot have theirs, and we should be mindful that they are, likely, equally committed. That effort to maintain respect has led to some great conversations. While I don't believe anyone on either side was persuaded from his/her view, it did create, I believe, better mutual understanding. I watch and listen now more objectively to the different sides of different policies and it is fun to watch, especially spirited but respectful debate.

Livia passed her first birthday by making an absolute mess out of her cake. That was a lot of fun to watch. I believe Elaine has pictures on facebook as well as her blog. She is into everything. She started walking at 10 months and was running a couple weeks later. She still hasn't stopped. She's a climber, too, which Ian never was, so that's been a new experience. Her nickname is "Mountain Goat" when we find her up on something she shouldn't be. It is matter of time, I fear, until she finds a way around the cabinet locks in the kitchen. She keeps us on our feet at all times, except when she has her needed afternoon nap.

As for Ian, he has truly done well, for the most part. Several months ago he had a sustained fever and the fear then was that he had contracted a nasty flu. It turned out to 'only' be a respiratory infection that was quickly hammered back. We passed his year mark with a Liver Day celebration. Elaine and I spent much time reflecting on the year that had passed and how much our little man had grown and developed during that year. He is, without a doubt, a different boy now than he was pre-transplant. His energy is through the roof, he eats a lot more (and I mean a lot more). His mind has an extra edge to it, which may have more to do with his age than the transplant. He is loads of fun, that's for sure. We had a visit with the transplant center in September and his visits were pushed out to six months. That's the longest we've ever gone between visits.

Ian's blog details, to some degree, the events of the last few days. He had a lowgrade fever on and off starting Saturday. Monday evening, it spiked to 102.6. Anything over 102 is an automatic trip to the ER. Of course, by the time we got to the ER, it was down to 100.6, but we were accepted and they started a battery of tests. They tried to place an IV, but took a nasal swab at the same time. Ian was doing great up to the swab. That's when he flinched a little, crimping the IV. It was useless. They tried to place another with no success, and by this point Ian is already tentative about it because it hurts. He does great with labs, but that's a much smaller needle. He cried through the second, with me basically pinning his arm in place. They tried again for a third after his x-rays, and while they were able to get the blood they needed, the IV failed (big bruise from that one). This one was especially bad because I had him pretzeled up so I could hold him still while they placed it. All these tests came back negative. The ER was busy, and the doctor had become a bit wide-eyed when I told him Ian was a liver transplant recipient. I believe, but have no proof, that he was eager to pass us off. He did not consult the transplant team about steps to take, in spite of my request to do so. So, they started paperwork to transfer us to MUSC. They came back in and said they needed to get an IV in before transfer. I said, "No offense, but no, you won't. They can do it at MUSC if it is needed." Ian was given shots of antibiotics, one in each leg. That didn't go well either. I was holding him down as he pleaded with me to make them stop. I had to keep whispering to him that it was needed and to be tough. Turns out this antibiotic was not and would not have been approved by the transplant team. Not too happy about that, as might be expected. Over two hours later, we were finally on an ambulance being transported to MUSC (they didn't want me to drive him, though I'm not sure why). So instead of being there in 30 minutes or less to MUSC, we sat around the ER while we waited for paperwork to be filed and for people to make/receive phone calls. Ridiculous. At 1 AM we finally arrived at MUSC, and Ian finally went to sleep at 1:30. My night was not done, as questions had to be asked and answered. I slept where I could between interruptions, but these crappy couches are not intended to be comfortable, but torturous. Whoever set out with that evil design gets kudos for succeeding.

So, here I am, second night at MUSC. I'm going to sleep soon with hopes of really sleeping tonight (curse the couch!!!). We hope Ian will be able to go home tomorrow, but it just depends what they find/don't find in the tests. Only time will tell...

Similarly, only time will tell if my newfound commitment to this blog will last...

2009-04-29T23:01:00.003-04:00

Too little too late, I think, as Elaine has already posted most of our happenings for April. It was quite the busy month.

Easter was an adventure with Ian. He returned to church, but told us a week or two before that while we were at church on Easter that he would be thinking about his eggs at home (we had just stated during family home evening that we should think about Jesus during Easter and the wonderful sacrifice that he performed for us). I like to think that Ian got it, but mostly I'm convinced that it was all about the candy for him.

Like I wrote in a previous post, we saw the Braves play six innings of baseball, but left early to avoid freezing the remainder of our tushes off.

Ian continues to do very well with his recovery. Livy keeps growing like a weed. Elaine does a great job keeping up with both, and I just try not to get in the way of any of the three.

I'm approaching my first goal with my exercise efforts. I may not reach the goal I had in mind, but I've made significant progress. I'm down about 15 pounds at this point and my weight has dropped below 240 lbs for the first time in over four years, though I'm still hoping to reach my goal of 230 by May 9 (that's a lot of weight in a short amount of time). I'm pretty happy with the habit development both on the exercise front as well as the eating battle. I've been able to shift my food intake to less and overall healthier. Naturally, I do cheat every so often. I'd go nuts without the occasional chocolate bar, and I still crave Troy's Philly Cheesesteaks (haven't found a comparable one here in Chucktown yet). I have not allowed myself to return to non-diet soda, since I'm fairly sure I would have a hard time giving it back up. This is my hardest challenge, to be truthful, since I LOVE Mountain Dew's Livewire and Voltage flavors.

Why, as humans, is it so hard to overcome the psychological aspects of some things (see: Mt. Dew Livewire)?

2009-04-19T21:00:00.004-04:00

Well, we had another trip to Atlanta this past week. It was good, I think, except for the trip to and from and everything in between those driving periods. No, just kidding. CHOA partners some with the Braves (or vice versa), and the Braves provide tickets to the game, dinner, and pictures with some of the players. It was fun. We got the stadium around 4 or so, walked around outside (see Elaine's blog or Facebook page), and then got out of the wind for a while before heading into the stadium around 5:20. Dinner was a ballpark dinner, which was fine. Two players, Matt Diaz and Blaine Boyer, came up. Ian did pictures with Diaz, but wasn't interested in Boyer (really wasn't interested in Diaz, but we convinced him to go ahead). Chipper was busy getting ready for the game, we suspect. :) The wind blowing across the stadium was sharp and quite chilly, so we got cold pretty fast. Livy didn't make it to the first inning and she was ready to go, so Elaine and Livy left for the car to wait on Elaine's sister to come get them. Ian and I got a blanket from the car, courtesy of Elaine, and made it a bit longer. We got some cotton candy for Ian around the end of the 4th, and he said that was worth staying for. But he got cold trying to eat it, so around the end of the 6th inning we called it quits and headed for the car. We stopped at the restroom (that's an important detail for everyone, isn't it?) and finally cleared the stadium around the 7th inning stretch. Ian is interested in doing it again next year, I think.

The visit at the hospital went well. They are pleased with how Ian is doing, and we got some tips for dealing with 'Evil Ian'. He gets pretty bad at times in terms of sassing and poppin' off. Some of his meds contribute to that. He has done well the last few days, especially.

The drive home was pretty rough. Livy cried...no, Livy screamed a lot. Elaine climbed into the back seat between the two car seats in the Corolla and sat back there. She has a nice bruise to show for it. The Corolla is officially done taking all of us places. Its just too dang small. We also determined that Livy is done travelling to Atlanta for a bit. Six hours in a car seat is not fun for her, and therefore not fun for us either.

I have not blogged much on my weight loss efforts much, but I'm pretty pleased overall. Since February, I've dropped close to 15 pounds, so I'm down from around 255 to around 240. I still have a ways to go, but I credit the Wii Fit for most of the progress. Not only does it help me to exercise, but now whenever I even think about eating something, I have to also consider what it is going to do to those scales later. Thus, my eating and drinking habits have changed considerably. I eat better and less, and soda is pretty much an unthinkable now. I do love the Vitamin Water, though, especially the Energy flavor. I'm not too certain that the weight loss is visible yet, but I feel better, which helps with the motivation to keep going.

Not much else for now...

2009-03-07T23:07:00.002-05:00

So it has been a while, again, since my last post. That should be an indicator to all that things with Ian are going well.

He and I went to Atlanta for a follow-up last week, and it was good. We got into Atlanta late Tuesday night and stayed in a hotel. It was kind of fun to get out with just Ian and go, but we also missed Elaine and Livy (though even a king-size bed would have been crowded with that many people). Ian is now on a month schedule, meaning he needs to return to Atlanta only once a month. He's doing fantastic!

Until today. We're in the car out running errands, all of us, when Ian tells us his nose hurts. We look, and sure enough, his nose is running like the New River after a heavy rainstorm. As we start to probe, he readily admits to us that he has shoved a raisin up his nose. Great. Just what we needed. We get home, and we try to get it out any way we can. He blows his nose. We use a bulb syringe (aka snot sucker), all to no avail. We cannot even see the thing, but Ian is insistent that its in there. We call his doctor, and they tell us to find either a nearby urgent care place or go to the emergency room. It is already 7:00 PM, mind you, and this is certainly not how I had planned to spend my Saturday evening.

Off to the ER we go, Ian and I. We get there, get checked in, and in just a couple minutes, we are taken back to a room. Ian and I dig into some snacks that Elaine sent with us. Soon after, in comes the physician's assistant (PA). She cannot see it either, but she explains what we're going to try after Ian unsuccessfully tries to blow it out again (he's quite good at blowing his nose, btw). So, we get in position (an orderly or nurse comes in to help), and she holds his left nostril closed (the raisin is in his right nostril), and I basically give him a puff of air through his mouth ala mouth-to-mouth. I failed to anticipate the mess that would come out of his nose. My left cheek is now coated in Ian's snot. All I can do is start laughing so I don't throw up. The raisin did not come out (WTF!!!?? (where F=Freak)). The PA is laughing with me (probably so she doesn't throw up). She looks, and she still cannot see the raisin. Out she goes to consult the doctor. I console Ian, because he sure didn't like me blowing all that air into his mouth and is now crying rather fiercely. I sign some papers so that our visit can get filed with insurance.

Soon, here comes the doctor and the PA. They ask me if I'm sure he shoved a raisin into his nose. I assure them that Ian would not lie to me about this, since our idea of fun does not include a trip to the ER. I get a skeptical look, but they look amused, too. The doctor cannot see the raisin. We agree to try the puff of air again. Yours truly is again the puffer/billows. This time, at least I'm ready for the snot-blow that is going to hit my face, but this time they tell me we're going to do both nostrils. They close the left nostril. I puff and catch it all on my cheek again. No raisin. They ask if I want to wipe off. I don't see much point in this since we are going to do it again. They close the right nostril. I puff. Same amount of snot comes out of that nostril, again, coating my cheek. Still no raisin. They don't believe me at this point that its still in there because they still cannot see it. I handle a volley of questions, including about his runny nose. Now, Ian has had a cold for a bit, so there was some runniness there already, but since the raisin has gone in, the flow has increased greatly, and he says it hurts. I do not doubt my son.

The doctor determines to refer it to the ENT and we can go on Monday to see them. Fine, whatever, as I finally have a chance to wipe off my face. I use soap and water. Ian's face needs wiped, so I wipe it and have him blow his nose one more time. He really lets the nose-blow fly, and something hits me in the chest, and rolls down my shirt. There's that blasted raisin! I call the doctor back in (they were still walking away consulting). They come in to make sure he got it all, and sure enough it is a whole raisin. I'll post pics on Facebook tomorrow. Of the raisin, not me with snot on my face. There are no pics of that, thank goodness. I asked for a jar to keep the raisin.

2009-02-14T11:04:00.003-05:00

Three and a half weeks home now. I had not intended to have this much time between posts, but its been a busy time.

Elaine, Ian, and Livy went back to Atlanta a week after they got back to go to clinic, and Ian has had his Prograf adjusted back up a bit. He is doing well, however, and we just found out yesterday that he is now once a week for labs. His next clinic visit will be February 25. We are planning, right now, to have his PICC line pulled at that time and he'll just get poked once a week after that. He's a champ at doing that, so it shouldn't be a problem.

We got a Wii for Christmas, and I've been using the Wii Fit for the last week. I've had the weigh fluctuate a bit, but overall its down nearly two pounds. I won't call it a trend yet, but at least it is promising to see signs of potential progress. I overdid it a bit last night, so the next few days will have to be a bit lighter, but I should be okay again after that.

Work is good. I've assumed some of the Environmental, Health, and Safety duties for our site. My boss still intends for it to be temporary, but we'll have to see how things play out with the economy being as bad as it is and no real signs that it is going to turn.

That leads me to my next rant. Why in the world would Congress pass a bill in the name of economic stimulus that has so little to do with economic stimulus? There are so many things in there that have little to do with creating jobs or kickstarting the economy. We have history to learn from. When you put in socialist programs, like they tried under Franklin Delano Roosevelt with the New Deal, it does not work. FDR's own Treasury Secretary went on record saying it didn't work. It is also not temporary. We are still dealing with Social Security, and it has been morphed into something it was never intended to be. Under Reagan, taxes were cut and defense spending increased. The economy turned, and it did it rather quickly considering where it had been under the Carter administration. Now, Obama comes in, using the same fear tactics he criticized George W. Bush for, in order to pass some of the most socialist legislation ever in the name of economic stimulus. Now, if it works, I'll certainly admit, on here, that I was wrong and he was right, but history suggests otherwise...

Phew! Got that off my chest. I will try to refrain from posting political commentary going forward, but that issue has basically consumed my attention for a couple weeks now, all the time I have been getting more and more angry.

Well, it is nearly lunchtime, so I'm going to wrap this up. As always, we appreciate the prayers for Ian and us and I'll try to do a better job keeping people posted on what is happening with him and us.

2009-01-28T21:39:00.002-05:00

Recovery Day 42...

and Ian, Elaine, and Livy are are their way home! Because of this, this entry will be VERY short.

Elaine called today and they let them come home. Ian's Prograf might need adjusted, but they can do that from anywhere. I'll be taking him to MUSC tomorrow for labs to be drawn. Should be interesting, since I need to have him there by 8 am in order to meet the 12 hour trough requirement for Prograf. Traffic into downtown sucks, to put it mildly. But, for my kids or wife, there's nothing I won't do.

Until later...

2009-01-27T21:40:00.003-05:00

Recovery Day 41...

was kind of 'blah', for lack of a better word. I don't feel like I did much at work, though looking back that's not true. I made progress, some, on two different projects. I'm working on a database to track information and then I'm also working on a means of better storage for some of our equipment parts.

Upon returning home, I spent time working on the house. I was able to get the bathrooms scrubbed (after I purchased a toilet brush with disposable heads). It looks better, but I'll still need to do some organizing and clean the floors tomorrow. Shouldn't take more than a few hours to finish the house. Time permitting, I may try to tackle the garage to a small degree. I want to get the Christmas totes down so that we can put away decorations after we have Santa Claus make his special visit after Elaine, Ian, and Livy return home.

Ian has labs and then clinic tomorrow. We'll know more about everything at that point.

Now I'm very tired. I'm going to bed.

I did, however, promise to provide updates on my weight loss efforts. I have done reasonably well with eating. It takes some effort, but I figure if I can keep fat content and overall calories down, I should drop the weight. I've finally started exercising as well. I 'inherited' my brother's Dance Dance Revolution and the mat that goes with it for the PlayStation 2. It is interesting, and let's just say I'm glad I can do that in the privacy of my living room. :) It is not a pretty picture, I'm sure, but I'm usually sweating after just a few minutes on the mat, and I usually go about 30 minutes total. I'll need to work on adding more things to my exercise regiment, but I am glad I have started.

2009-01-26T22:26:00.003-05:00

Recovery Days 39 and 40...

means I missed a day. My bad. On the other hand, I don't know that there is really enough to do a daily update. I'll probalby do it daily or near daily until the crew come home, then I'll go to weekly or bi-weekly updates.

Yesterday is a bit of a blur. We spent the day mostly at 'home' at the Ronald McDonald House. This was fine with me because it gave me time with my family before I flew back last night. The flight back was full, and I was all the way in the very back row of the plane, but I made it home and was able to get a few things done last night, so it was just fine. Besides, when you fly stand by, you have to take what you get.

Today started slowly. I woke up a few minutes late (not too bad, only about 10 minutes late), and got out the door to work. Work was largely uneventful. We have some training being scheduled for next week that I'll be conducting (safety training).

Ian's labs were good today except his Prograf levels. He's running about a 4, and they target the teens somewhere. They didn't raise his dose yet, but I believe they will on Wednesday. That being said, Ian has not been discharged from the area yet. They want labs done on Wednesday and to see him in clinic that day. At this point, I'm guessing it will be next week or in two weeks before he comes home, since I believe they'll want his Prograf levels stable first.

Tied to all this, a few things happened that made me very angry. I don't want to go into details because I'm trying very hard not to dwell on the issue. I am angry at the issue, not anyone in particular. It has forced me this evening to reflect on whether or not I'm being too harsh and too strict right now. It is possible. I think I'm going to spend a fair amount of tonight thinking and pondering this topic... so much for sleep, but that's the way my mind works. Sleep is overrated anyway, right? Okay, okay... I don't believe that either.

Why do we find ourselves, occasionally, at least, being so hard-nosed about certain topics?

2009-01-24T22:08:00.004-05:00

Recovery Day 38...

was about right as far as activity goes. We spent the morning kind of lazily, which I think we all needed.

We all took baths/showers and then off we went to Picture People at Perimeter Mall to have our pictures taken. It was good. The kids cooperated nicely, and I think we came away with a good family picture and a good picture of the kids together. We have the option of buying more within 60 days, so we'll have some decisions to make at some point.

We then went and got dinner. Ian wanted chicken nuggets, so we made a stop at McDonald's. Elaine wanted Chipotle Grill, so we stopped there. I tried to get a shake when we went to McDonald's, but the machine was down so we couldn't. Not the end of the world. I probably don't need it.

Now we're ready for bed. Its been a short trip this time. I am very hopeful that my family will come home next week...

2009-01-23T23:47:00.002-05:00

Recovery Day 37...

and I have returned to Atlanta for a couple days. I flew, this time, and I'm trying really hard to resist a bad joke.

Elaine, Ian, and Livy picked me up at the airport and we drove back to the Ronald McDonald House. Livy screamed most of the way, and Ian was asleep when they got there and slept all the way here. I helped him get ready for bed, and he's sleeping now. So is Livy, for the moment.

Things are still looking possible for them to come back to Charleston next week. We are hopeful.

I am working on Elaine's laptop as I write this. I may have found the problem (spyware) slowing it down. Hopefully...

I'm wiped out and nearly to the point where I can just let this thing run. We're going to have a family picture taken tomorrow. I'll scan and post it after that. I'm looking forward to people being able to see how much Ian has changed.

Nothing else for tonight...

2009-01-22T21:57:00.002-05:00

Recovery Day 36...

and no, I still don't have a better name for the day. I'll probably end up just waiting until they get home.

Work was good again today. I have the procedure for the Philadelphia area terminal done to a point, I'm just waiting on feedback from the terminal manager at this point. I should get that in the next few days.

Looks like I'm flying to Atlanta tomorrow. I'm not disappointed about that, though I am concerned that Elaine won't get everything into her car to bring it back. I think she underestimates how much there is there. We'll see...

Not much else to report. I'm working hard to get the house cleaned and ready for them to arrive next week (hopefully).

2009-01-21T21:52:00.002-05:00

Recovery Day 35...

and it is Wednesday, so clinic was today. It went well. Ian continues to do well, and the doctors have told us now that he may be able to come home next week. Now, to be clear, just because he comes home doesn't mean we are home free. He'll still be watched closely, and he'll need to have labs drawn frequently still. He may also have to return to Atlanta on very short notice to go back into the hospital. This, my friends, becomes our new normal. It isn't normal yet, but I imagine it will be at some point.

Work was good again today. I met with the regional EHS manager (she was the one I was traveling with in Philladelphia when the call for the transplant came). I'm picking up some things to do at the Berkeley site here that will take some burden off her back. We've been moved into a new region again (third time since I started). It is going to be interesting to see what happens with her and what happens as far as how I am used in the region now. Time will tell...

Not much else to mention at this point, and it is bedtime, so I'm off!

2009-01-20T21:30:00.003-05:00

Recovery Day 34...

was a good day of work, but it was colder than I would've thought here. There were actually flurries here in Charleston. It was kind of fun to see people panic. Significantly more panic than in VA. I was going to go run some errands, but decided I was better of staying off the roads with all the nuts out there rushing to get home.

I spoke with Elaine a little bit a while ago, but nothing of note to report. Ian also spoke some. He gets very excited on the phone. It is pretty funny, but also difficult to understand. Mostly, he just likes to talk on the phone... I don't think it matters to whom, though he does prefer family. Maybe next time a telemarketer calls, I'll give him the phone. :)

Tomorrow should be fairly busy. I got one estimate on my Explorer, tomorrow I'm going to go try to get another.

Not much else to report here... things a bit on the dull side with everyone else in Atlanta.

2009-01-19T21:59:00.004-05:00

Recovery Day 33...

and still no ideas for what to title these posts. I'm open to suggestions.

The drive back to Charleston was uneventful, which is usually a good thing as far as drives go. I made it from Atlanta in about 4.5 hours today. The traffic in Augusta is not so friendly as they are doing construction on I-20 through there. The speed limit is 45, but the lanes are both very narrow, so that's probably appropriate. I also came through there right at rush hour. Nice. Real nice.

I went to Circuit City after I got back (went straight there, actually). More than anything, I was scouting the goods. So far, the only things I'm even interested in are just 10% off... which is not much. You can get the same thing at 10% off at Best Buy just by watching for sales, so no need to rush into buying something.

Tomorrow is shaping up to be a hectic day. I have work, of course, but then I need to make it to the dealership to get a quote on fixing the paint on my Explorer. It is flaking from the roof, and there are some spots that appear to be developing rust. Need to resolve that now before it gets to be a big problem. That doesn't sound like much, but I have until 5 pm to get to the dealer before they close, and I leave work at 4. Still doesn't sound bad, but the drive is going to be at least 30 minutes with traffic.

It was not easy to leave my family again. I sure do miss having them around here at home. It was fun to play with Ian and Livy, and good to see Elaine and spend a little time with her. We are planning a family picture next weekend at some point, so for those who are asking for pictures, hold your horses until that point. :)

Well, I need to find some dinner and get my sorry self to bed!

2009-01-19T09:42:00.002-05:00

Recovery Day 32 (at the start of day 33)...

means I should probably start to call the days something other than Recovery Day. I'll work on that. But we're through the first month all the way now, and Ian is doing great! He has turned the corner on the medicines and is quite the champ at taking them now. He is also great about letting us flush his PICC line, but he wasn't ever really bad at that.

It also means that my long weekend is almost over. I am leaving this afternoon to return to Charleston. Ian looked at me this morning and told me he wants me to stay with him, Livy, and Momma. How do you explain to a 3-year-old that you have to leave? I did my best, explaining that I have to be at home to make money so we can have a house and insurance and be able to occasionally buy him engines. That, somehow, seemed to do the trick.

Dad and Jenn are also leaving today to return. It was nice to have them here yesterday, as they like taking turns holding kids and helping out with things.

Here at the Ronald McDonald House, there are different groups that bring in food in the evenings for dinner for the residents of hte house. Last night's dinner was... well, it was odd. They had briskett with yams, spinach or crab quiche, rolls, salad, green bean casserole, and some brownies for dessert. Almost no one at the yams, but the briskett was gone. The quiche was hardly touched. The other items were eaten pretty well. We couldn't even get any of the crab quiche for Ian since he shouldn't have shellfish right now.

We went to the temple yesterday just to walk around a bit and get away from the House here. It was a nice trip and got us some fresh air and a bit of exercise.

I have a cracked knuckle on my hand. Every time I put Germ-X on it, it stings like the fury of a thousand hells. Just in case anyone wanted to know...

Dad and Jenn brought Ian some books and some new Thomas engines. He got Diesel 10, Farmer McColl's chicken cars, Bertie the Bus, and the sea aquarium cars. He's pretty stoked about that. That is very generous of Dad and Jenn. We certainly appreciate it. Ian is starting to have quite the collection now.

Well, I'll post more tonight after I get back to Charleston.

2009-01-18T08:18:00.003-05:00

Recovery Day 31...

means its been one month to the day. How quickly can 31 days pass?

It was nice to be back in Atlanta with my family. Ian was hilarious, as usual, and has really turned into a fantastic medicine taker. He doesn't complain anymore. Elaine has started using M&M's to help him take his meds well. It helps a lot because he is able to eat them and get rid of the taste in his mouth from the meds.

My dad and Jenn came into town today. We spent the late afternoon and evening with them, but we did knock off the evening early since everyone was yawning and ready to go to bed. We went out to eat, going to a place called Athens Pizza. It was okay. I had baked lamb, which was a little dry but otherwise okay. The slovak restaurant I had planned to go to appears to be out of business. I called, and the number is disconnected. We didn't go over there since its in Marietta and the round trip for a closed restaurant isn't worth it.

Elaine and I finally got to sit down and talk about a lot of things. This is something we normally do every Sunday, but haven't done now in over a month. It typically covers general planning and things of that nature, so it is pretty important for us to be able to do that regularly.

2009-01-16T23:22:00.003-05:00

Recovery Day 30...

means making the drive back to Atlanta, where I am now. It is nice to see the wife and kids. It seems like I was gone for ages, though it has only been a week.

Work was good today. Not too much going on, but it was cold for Charleston as the high got all the way up to 38. It is 25 right now here in Atlanta. I don't care where you are, that's cold.

So, although the drive wasn't horrible and was largely uneventful, I still think I may have to try to fly next time. I'm way tired. Doesn't help that I was trying to get stuff packed up last night for a long time (finding stuff was a problem). We'll just have to see what next week brings.

My dad and Jenn are coming in tomorrow to see everyone. It should be fun to see them. We are planning to go to the Slovak restaurant here in Atlanta, assuming its still open. I need to call tomorrow to find out. I would be very sad if it is no longer there. I don't know where else to get halusky.

We'll, I'm wiped after the week and the drive, so I'm off to bed. Tomorrow is going to be a good day!

2009-01-15T23:08:00.003-05:00

Recovery Day 29...

means I see my family tomorrow. Its been a bit lonely here in Chucktown. I'm almost caught up on the all the TV show recordings, but whoop-de-doo. I'd rather play with Ian.

So, I don't know what the report is for today, honestly. That is usually a good thing. :) I'm sure I'll get a full report when I get to Atlanta tomorrow night. I did spend a good bit of time on the phone with Elaine while I was packing a few things. That was an adventure. She has a picture of where things are and what she wants, but for her to explain it to me in a method I understand is another story. I described one thing as pink. She asked if it was pink or rose. My response was that I'm a guy. I don't know which shade of pink is rose and which is pink: they are just pink to me. Back me up fellas! Not only do we not know, we don't particularly care that we don't know (but we do know that we don't know).

Anyway, not much else going on here at the moment.

2009-01-14T21:44:00.005-05:00

Recovery Day 28...

and I'm half way through the week. I'm more than a little bit anxious to see my family again. After 20 days straight of Ian, I sure do miss the little guy now that I'm almost a week of no Ian. Same goes for Elaine and Livy, of course. I got to see lots of them over those days in the hospital (Livy is huge now!).

Another productive day at work. I should wrap up a phase of one project tomorrow.

I spoke with Ian a bit tonight and got a good report on medicine taking. He and his mother told me there was not even one instance of the 'Sand People noise'. When Ian is protesting, his fake little cry sounds like the Sand People (Tuscan Raiders) on Star Wars. Its pretty funny, actually. If I get a chance to record it this weekend, I will. So, in other words, he is getting pretty much back to normal. He's always been one to adjust to medicine taking pretty well, even as a baby.

Back to the Sand People... I don't think Ian even knows what they are, since he hasn't watched Star Wars yet (he watched a bit of Revenge of the Sith with me). It will be interesting to see how he reacts the first time he sees them and hears them. Perhaps very soon on that, especially since he could probably handle Phantom Menace or A New Hope... I'll have to talk to Elaine. I could get in trouble if I just show it to him without asking. :)

The same day we watched a bit of Revenge of the Sith, I told Ian we were watching Star Wars. He later told his mother that we were watching Starburst (he loves them) before correcting himself and saying Star Wars. We thought that was pretty funny. Hopefully, you do too. :)

Anyway, not much else going on here. I am very tired.

Okay, enough procrastinating (thanks anyway, Melinda). I'm going to cover the resolutions one by one. A big goal I have is to lose a fairly large amount of weight. But how am I going to do that? Well, my first resolution is to work hard at eating healthy, even when I'm not home. So, to that end, I did start today. I had a bowl of cereal for breakfast, a couple granola bars for morning snack. For lunch, I ate a grilled cheese with a very small amount of potato chips (ok, so those aren't so good) and clam chowder (love the stuff since the Qualtrax Users Conference in 2007). For dinner, I had rice and chicken enchiladas (not fast food... I bought a frozen dinner to help me eat a bit better - don't be angry, Elaine). I've had one Vitamin Water and lots of plain water to drink. So far, so good today. Oops! For afternoon snack, I had a two small handfuls of the mountain trail mix from Wal Mart (its quite tasty). I figure with the nuts and other things there, it is filling enough to take the edge off without eating large amounts of it. I also chewed gum, but it was sugarless (Extra), so it doesn't count. Besides, it helps take the edge off the hunger when I'm not really hungry, just in the mood to chew.

Tomorrow is a new day, so we'll see how successful I am at starting another of my resolutions...

2009-01-13T22:04:00.002-05:00

Recovery Day 27...

was a productive day at work, overall. I got the procedure about 75% done that I was in PA for when we got the call for Ian's transplant. I also got my expense report turned in, and called the healthcare providers from yesterday and worked some things out on the insurance front. All in all, not too shabby a day.

I got to talk to Ian on the phone (and Elaine as well), and they told me about their day. I think Ian had his first day 'out and about' today, which I'm sure he needed. He's been very patient with the process. Quite the amazing kid. Livy even chimed in on what they did, calling from the background. It was nice to hear from all of them.

I came home and my dad called. We found him and Jenn a hotel for this weekend while they're in Atlanta with us. They are coming to see Ian and Livy, mostly, and Elaine and me too, I suppose. I'm looking forward to seeing everyone. With Martin Luther King Day on Monday, it also gives me an extra day with my family before I return to Charleston for a four day work week.

Other than that, not too much going on. No, I'm still not ready to address the resolutions/goals. Perhaps tomorrow. Yes, I'm procrastinating.

2009-01-12T23:06:00.003-05:00

Recovery Day 26...

is actually day one back on the job for me. I got a good report from Elaine on medicines and labs today. Additionally, we did not get a call from the team at all regarding Ian, which is a good sign.

Work was good today... I think. I spent the whole day just trying to catch up on some things and figure out where I'm at for tomorrow. It looks like it will be a productive week once I get rolling tomorrow. I still need to file my expense report for the trip I was on when we got the call nearly a month ago.

Wow. It has been almost one month. Does it seem like it? It doesn't to me most of the time. That may change by the time I actually return to Atlanta and even more so by the time my family gets to come home.

So I got a couple of letters from different healthcare providers today. One thinks we have two different insurances for Ian. They keep trying to file it with the wrong one. I don't even know how they got that number, because we didn't provide it. That's a question for me to ask tomorrow. The other provider had a bill that they told us not to pay since it was pending with the insurance company (the correct company, at least), but now they have it in their collections department. Those should be fun calls tomorrow. I figure it is going to be at least six calls of an undetermined length. Two to each provider, and two to the insurance company trying to figure out why they haven't paid the providers. Elaine usually does this thing while I'm working, but when we talked about it earlier, she let me take it. She sounds very tired. With two kids and her mother around, she doesn't need this to deal with.

I also had the pleasure of completing the task of returning all our phone messages (well, almost all of them). One was the insurance company wanting to speak with Elaine about her pregnancy. Another was the insurance company wanting to follow up with Ian to see how he is doing after his discharge from the hospital. Another was healthcare provider one from above trying to figure out the insurance mess they somehow created. The list goes on and on. Overall, I had about 10 calls to return, and that's after I deleted a bunch of the messages and wrote them off as garbage. I figure those groups will call back if they really want to speak with us.

So, the moral of the story is: never be gone from home for a month. And if you do have to be gone, turn off your answering machine. :)

I realize I haven't completed my thought from yesterday's post regarding resolutions and goals, but that's because I didn't have time today to work on any of them. What an awesome, rip-roaring start to the New Year! :) :D

2009-01-11T22:30:00.003-05:00

Recovery Day 25...

and Ian continues to have soft bowel movements, per Elaine. That's not a concern to me since the indication I got Friday suggested it will take time for that to clear up. He's not going as often, but it is still soft, apparently.

I went to church today here in Charleston, back to our ward here. Since it is a ward with a Navy base in the boundaries, the turnover is pretty high. There were a few new families in that I didn't know, and I didn't meet them all today. No worries. There will be more in a month when we are all back.

Other than that, it was a pretty uneventful day for me. I slept in a bit, spent some time relaxing this evening, and that pretty well sums it up.

I'm looking forward to returning to work tomorrow. I have lots to do to catch up, and it should be an entertaining week back. I'm also curious to see if my truck starts when I get there tomorrow. It has been parked for a while now. It should be good to get back into a normal groove here, even if the weekends will not be normal.

It is also time, starting tomorrow, to begin work on a few of my goals for this year. I will get into those with tomorrow's post. Right now, I need to go to sleep as it is already later than I wanted it to be for bedtime (dang Star Wars!).

2009-01-10T19:42:00.005-05:00

Recovery Day 24...

but I'm back home in Charleston. I have no idea what happened, except that I read Elaine's blog. :) Good source of information.

It was a busy day for me. I did sleep in a bit, mind you, but couldn't sleep too terribly late since there is lots to do. I went and go the oil changed in my Explorer. It was a truly beautiful day outside... over 70 degrees and sunny with a light breeze. I just waited outside on a bench and rubbed in the weather to my younger sister, Amanda, who lives in Syracuse, NY, and is buried under probably fourteen feet of snow right now.

After the oil change, I came back home and got bill somewhat caught up. Our neighbor brought the rest of our mail by a bit later and I went through most of it. Figured out what I needed to look at and what could wait and what was trash, and sorted accordingly. After nearly a month, that took some time. I also opened the package that my sister, Reina, sent. She made a blanket for Livy, which is very nice and nicely done, and sent a sports water bottle for Ian. I'll take that back to Atlanta this coming weekend, as well as the blanket.

Once that was all done, I scoured the yard outside (just wanted the fresh air and sunshine) for downed palm fronds, found a few, took care of them, and scooted off to the grocery store. Let me just say: I hate Wal Mart. It is the great and spacious building. It took me forever to find what I needed. Unfortunately, its also cheap, and cheap is good. I finally got out of there with some damage to the wallet (I certainly appreciate my wife's thriftiness when it comes to grocery shopping), and went to Little Caesar's for dinner, then to Walgreen's to pick up a photo I'm not supposed to look at.

Came back home, ate and caught up bills some more. Have I mentioned that music is my therapy? I appreciate having it on in the background to keep me moving along at tasks. I'm looking forward to church tomorrow including*, perhaps, of answering the same question 400 times (How is Ian doing?), but I am as prepared as possible. Church is now at 1 pm, so that is a shift... its been a long time since I've had to go at that time.

From Elaine's blog, it appears she has found some things to help Ian take his meds better. This is good... she's very good with him, as anyone who has seen her knows. She'll get that side of things straightened out faster than I could.

Not much else now... just back to the rigamaroll of life here...

*modified two hours after the original post time to reflect, accurately, how I feel about the question "How is Ian doing?". The prior version of this post sounded like I was complaining about being asked that. It is quite the opposite. Though Elaine and I are tired, exhausted even (who wouldn't be?), we appreciate the concern and the thoughts and prayers (thousands of them) that go up to Heavenly Father on Ian's behalf. It is amazing to us that a three year old boy can pull people together for a common purpose like this.

2009-01-09T23:28:00.004-05:00

Recovery Day 23...

is done now. No, that's not a bad thing. It just means I'm way tired. Ian's labs this morning were good, but one number stayed up a bit. All that meant is that he and I returned to the hospital around lunch time for him to get some fluids via IV. It took about an hour or so, and we ate Taco Bell and watched Thomas the Train. It was nice to get that time with him again for just the two of us.

We went to see some of the team after that to get a copy of his labs and say hi, and they told us to reduce his Prograf levels as they are a bit high in his body right now. As I have mentioned before, this will be an ongoing process until the right dose for Ian is found.

He was great today otherwise. He took his medicines pretty well (we used candy to bribe him). He was a great listener all around. He slept really well last night, waking twice, I think, to go potty. His body functions are nearly normal again.

After all this, I got Elaine's laptop ready and I left Atlanta to return home. I have some things to do here over the weekend, and I will return to work on Monday, barring any issues. I plan to return to Atlanta most weekends so my wife and kids don't forget who I am. ;)

Livia is growing like a weed! She's also quite the talker, and not afraid to let us know when she's not happy with the current status quo... and she keeps screaming until she gets her way. Definitely a strong personality, that one.

We are planning a new family picture sometime after Ian has more time to clean the bilirubin out of his body (he'll be pink at that point, not yellow). Livy has also changed enough that it is necessary to update her picture as well. Pretty exciting stuff to see your family growing up right in front of you!

Other than that, I think I have a very busy day in front of me tomorrow. Updates on Ian are now going to be secondhand since I'm not there to personally witness his shenanigans.

2009-01-08T22:39:00.003-05:00

Recovery Day 22...

and we didn't go back to the hospital to be admitted. We did finally hear back from the transplant team, and they said everything was looking pretty good except one number, which indicated that Ian might still be a bit on the dehydrated side. Not too much of a surprise to me since he threw up once last night and then slept straight through the night. We are trying to push him to drink as much as possible tonight, but worst case he may need some IV fluids at some point tomorrow. Not a huge deal. In other words, he's pretty much clear of trouble for the time being.

He kept everything down today, no issues with that. His bowel movements still aren't quite normal for appearance, but the timing between has become normalized, and his final one tonight was moving more towards normal. All good signs.

Tomorrow, I am set to return to Charleston. The plan is for me to go back, have the weekend to accomplish some things, then return to work on Monday. Work has been more than patient, and at this point, we should be into the easier parts of waiting. Elaine's mom will come to the Ronald McDonald House and help her out, and I'll return to Atlanta on the weekends, we think. I'll probable use some days off over the next bit to get some extra time in here with my family. I think we need that a lot... just some time to re-establish a routine and start life moving towards some yet-to-be-defined state of normal.

Meds are still going pretty well, overall, but we're going to try some things to get it to the point that its great. Elaine has some good ideas to try, so we'll have to see how things go. Overall, I have to say that Ian's been a real trooper through all of this, as has Elaine. Livy won't remember it, thankfully, but she is needing routine pretty badly. I am hopeful that we have, again, turned another corner and we're headed in the right direction again.

2009-01-07T22:20:00.004-05:00

Recovery Day 21...

is three weeks since the transplant. I continue to be grateful for the wonders of modern medicine and those who have the education and wisdom to help others with their knowledge. Last night was bad, as I mentioned. Ian continued to throw up until 3 AM and he had the runs through the night. The vomit stopped finally, but the runs were also an all day thing. We went and had labs drawn, and the numbers weren't too good. They believe it was largely due to dehyrdation. The poor kid drank and drank to keep up, but he vomited water twice (at least). Makes it dang near impossible to meet your body's needs when that happens.

So at clinic, they first advised us that we were going to be readmitted to the hospital. They hooked Ian up to an IV (through his PICC line) and started giving him fluids. This helped enough by the time they were nearly done that they decided to cancel admitting him and let us take him back to the Ronald McDonald House. He got his staples removed, and received some medicine before this to make it easier to get the staples out. The stuff makes him loopy, so its pretty funny overall. They replaced the staples with SteriStrips, and 'home' we came. He ate pretty well, not surprisingly, but after meds he decided he wasn't going to have any of that and threw it up again (the Prograf was long since absorbed). That's always fun. He seems fine overall, though, and ate a string cheese, drank a ton of water, and went to sleep. Thinking about it now, I think the last time he had the loopy medicine, he threw up then, too. Oh well. If he isn't better hydrated tomorrow, I expect to be readmitted at that time (and if his numbers don't show improvement). In other words, I expect to be readmitted.

For those wondering, I've decided to take the pessimist approach to this whole thing as it helps when things don't go like we hope. At least this way, the only surprises are good ones. I guess its an optimists approach to being pessimist? Is that an oxymoron?

Well, I'm beat. I've had about three hours of sleep over the last 40 hours or so, so it is much needed at this point (last night was a very long night).

2009-01-06T22:33:00.004-05:00

Recovery Day 20...

meant spending the day in the Ronald McDonald House. It started normally, but ended poorly. We stayed in pretty much all day. Ian was fine this morning, but shortly after lunch he started to complain about feeling cold. He spent the rest of the day either feeling cold or doing normal things. We went to Boston Market for dinner, and then the real shenanigans started. He threw up once, but there wasn't much in his stomach. He came back to the table, ate a little bread, took his Prograf, ate a little more and drank a lot of water. He took the rest of his medicines 30 minutes after the Prograf (which absorbs in about 15 minutes). So, we knew he was good on the Prograf. We got him ready for bed. He was complaining about not feeling well. I called the transplant team and ran through a series of questions with them. Right now, the theory is that he ate something new that didn't agree with him. There is no fever and he's okay for the most part (other body functions are normal). Keep in mind (this is as much for myself as for the readers) that absence of fever does not mean absence of infection. So we wait. I'm getting him to sleep and he starts to complain a lot about his stomach hurting. I tried to comfort him, which worked until he threw up everywhere. By this point it had been an hour since the remainder of his medicines, and those move through the stomach fairly quickly as well, so he should have absorbed everything. We did not need to re-dose.

After the second ralphing, he felt better. Still no fever. He's asleep now, and when we've checked on him he's said his stomach doesn't hurt. He's also drinking lots of water. So, the signs are pretty good that he just ate something that didn't sit well (he had lots of new things today, so we are going to pull back to normal foods and then reintroduce things). Could happen to any of us. We'll know more tomorrow (he has labs in the morning and then clinic at 1:00).

Mostly, I just felt bad for him. He generally likes chicken, but he felt so yucky that he didn't really try the Boston Market (which is quite good). Not only that, I personally don't care to throw up, and I wouldn't wish it on my worst enemy. He seems better now, like I said, so we'll see tomorrow... and tonight. I doubt I'll sleep much.

Speaking of sleep, my eyes are closing on me as I type this. That's usually a good sign that bedtime is here.

Lots of people have been asking us what they can send, and the truth is that we really don't need much here. Usually if we need something, we need it urgently enough that we go buy it. So, that being said, I suppose what we would ask people to do, in lieu of sending something to us here in Atlanta or home to Charleston, is to donate money to Ian's COTA fund instead. The link is here. Also, his medicines are quite expensive. The first cocktail he's on, without insurance, is upwards of $2,000 for one month supply (I don't know how much it is with insurance, but at least two of the drugs are for sure tier 3 drugs and are very expensive). Donations can be anonymous, I believe, and we will never know how much you donated. The most we can learn is that you did donate some.

2009-01-05T22:15:00.002-05:00

Recovery Day 19...

and we are out of the hospital and into the Ronald McDonald House. I've never been more thankful for Chicken McNuggets and Big Macs... not even when I was in Europe as a missionary.

Ian was very excited to leave the hospital, and so was his daddy. :) I even got to take a trip to Target by myself to get some things we needed. Then we discovered we need a few more things. Its all good. Target is only a few minutes away.

Ian's Prograf levels dropped below 20, so his dose has been upped again a bit. Not a lot. It will take some trial and error to get the dose so that it maintains the levels they are seeking. Due to each person's individual body chemistry, there is not set generic dose that will satisfy everyone. Instead, like I have said before, they watch his blood to see if the therapeutic levels they seek are being met. The real kicker is that that therapeutic level is also different for each person. Fun stuff!

So, this means we are right into Phase 2 now (see yesterday's post). It should be interesting to see how the days go now. More tomorrow...

2009-01-04T23:40:00.004-05:00

Recovery Day 18...

means that we spent our second Sunday in the hospital. It was a good day. Ian's Prograf levels are down now where the doctors are comfortable. We are now at the point of being highly probable to be discharged tomorrow. I'm looking forward to it. I'll probably return to Charleston for a day or so to get some things done there (bills, etc.), then return for the weekend.

Ian is a trooper. He's eating well and his water intake is on the rise, which is great. He's back to being fully potty-trained (thank goodness). He takes his medicines well, overall, though I think he'll be glad to get rid of some of them when we get to the three months out point. He is climbing around and doing all the normal things. He keeps picking at his staples, which is the only thing I have to complain about at this point.

At the risk of somehow jinxing this, I think we can call Phase 1 of the transplant a success. The liver is functioning. Blood flow through is good. Ian is significantly less yellow (his bilirubin pre-transplant was ~14.8, it was at 0.8 today). He should get completely pink in time and look fully normal.

So, some people have asked what Phase 2 is as well as what other phases there may be. The phases, btw, are simply my perception of the phases. There is no actual phase given to us by the doctors.

Phase 2 begins upon discharge. We stay local, as they'll be drawing blood from Ian three times a week at the start. As they get comfortable with where things are with Prograf and liver function, they'll gradually scale that back to two times a week then to once a week. Phase 2 ends when we are able to all return to Charleston. Phase 2 typically lasts at least two weeks, and a month is more like what we should expect. Things we'll have to watch out for right now are primarily infection as that is our biggest enemy. As a result, it is actually helpful to keep Ian away from home since there would be people who wanted to come and visit him. He'll get stronger as time goes by, thus enabling him to resist infections. His immune system will still function, overall, it will just take him longer to get over a cold, for example, than it would take me or Elaine. So, Elaine, Livy, and Ian will be in Atlanta for at least two more weeks, and probably a month or more.

Phase 3 to me starts when we go back to Charleston and continues until we reach three months from transplant. At that point, Ian will still be having labs drawn frequently, but not so frequently that we'll need to stay in Atlanta. We'll keep him fairly isolated, meaning he probably will not attend church. We will be able to go out with him and do things, but large pressing crowds are a bad idea. Phase 3 in my mind ends when we reach that three month mark and Ian's medicines start to taper down to fewer.

Phase 4 starts immediately and continues until we are a year out from transplant. Rejection is most common in the first year, and infection will remain a concern. It is possible that we'll have to return to the hospital for testing periodically (perhaps even for days at a time) during this year (and even beyond, for that matter). Once we reach a year out, Ian's long-term prognosis takes a jump in the right direction (odds of success are already over 90%).

Phase 5 is the rest of Ian's life. He'll take Prograf forever. He will not be able to play contact sports such as football and hockey (basketball even might be a bit iffy). Education as he gets older will be critical for when he leaves home to be on his own. Many transplant recipients stop taking their Prograf when they leave to college because they feel well and don't think they need it. That cannot happen, or this whole process starts over because the body rejects the liver and re-transplantation is needed.

I hope this provides some information regarding what Ian is (and we are, as well) facing going forward. It will take some time for us to adjust to a new norm, as I've said. It is also likely that we'll have to look at other life decisions as we move forward. Its going to be an interesting challenge, and I'm looking forward to it, sort of. I don't know that we were yet completely comfortable with our new lives in Charleston, but I do believe that God doesn't give us anything we are not able to handle. The timing was right. We need to grow more now, and there's never a good time for a new test to come our way.

I'll try to post more tomorrow after we are successfully discharged, but I'm unsure of internet access at the Ronald McDonald House.

2009-01-03T21:46:00.005-05:00

Recovery Day 17...

and we are still in the hospital. We'll be here at least until Monday. They are still working to get Ian's Prograf levels correct, and he received two boluses of fluids by IV today. Note to the general public: chocolate milk may not be enough to hydrate you by itself. :) Thankfully and amazingly, Ian may be about chocolate milked out. Never thought I'd see that day. He still drinks it some, but seems to be losing interest. His interest in water has increased, which is good, since that's what he needs most right now.

So, there was, I suppose, a little disappointment that we didn't leave the hospital, but at the same time, I had planned on it actually be Monday at the earliest anyway, so I wasn't expecting to leave, just hoping. Ian was okay with staying, too, it seems. He was great today. Anyway, I'd rather stay in the hospital a bit longer and decrease our chances of needing to come back. Regardless, when we do leave, I need a few days of freedom from these walls to re-establish my sanity. :)

Ian did very well with his meds today (the threat to call Santa Claus about it continues to be effective) and he was also awesome for his ultrasound this morning, even though we didn't know the technician (we've seen most of them by now). He laid still and was fantastic. When we came back upstairs, we ordered his breakfast (waffles replaced pancakes today) and then snuggled together on my bed until his breakfast arrived. Elaine and her mother came shortly after he started breakfast (and Livy, of course), so I got a little more rest. They stayed a couple hours then left, returning later in the day. When they returned, Ian had been asleep next to me for about an hour and half after lunch, just resting nicely. My family will be tickled to know that Ian sweats a lot when he sleeps, just like I used to. The nurse came and took his vitals and disconnected the first IV bolus and mentioned that he seemed sweaty in spite of not being covered. I assured her that this was normal for him. We just spent the day playing, mostly, or relaxing in my case (I get some downtime typically when Elaine and Grandma are here).

Hmm... the nap may not have been good for Ian. It is nearly 10 pm now and he's still awake. Go to sleep, buglet!

Nonetheless, I am grateful to be going through this now. I still have to pinch myself every once in a while to make sure this is all actually happening. Though we had prepared for it, it doesn't necessarily mean we can believe it is happening. We look forward to this next phase in our lives...

2009-01-02T21:25:00.003-05:00

Recovery Day 16...

and we did not get discharged. There is a lot of hurry up and wait here. The same seems true for getting out. :)

That sounds like I'm complaining, but I'm not. Ian's Prograf levels are a bit higher than the doctors would like to see, so we stayed put. I'm okay with that. When we leave, I'd like there to be as low a chance of coming back as possible. Even if we come back, that won't be the end of the world. Ian did well with staying put. He got Knapford Station from his maternal grandparents, and was very excited about that. He played with it for a good chunk of the day. We also walked downstairs, just the two of us, to see the fish and to look at the friggin' huge TV they have with sea life on it on the wall of honor (for monetary donors). Overall, Ian's health continues to improve.

I woke up this morning with all the symptoms (for me) of exhaustion (blast that Orange Bowl game!). Elaine came in and let me sleep for a bit (twice) thankfully, so I was able to get past that.

We went over all the medications and protocols for post-discharge care for Ian. It was a fair bit of information, but not a whole lot that we didn't know or hadn't at least guessed. The team here as confidence that Elaine and I get it and will give the proper care to Ian. I take some comfort in that. We both love Ian and Livy very much and only want the best for them. As I wrote in a previous post, we are entering a new phase. Our old model of normal is now broken, never to return. We must work now, as a family of four, to establish a new mold of normal. I figure it will take at least a year. It sure does create an opportunity for us to grow closer as a family and overcome some challenges. It should be a lot of fun.

Not much else to write that I can think of...

2009-01-02T00:27:00.002-05:00

Recovery Day 15...

went pretty well. It helped that I resumed some sort of normal schedule by getting up a bit earlier than I have been, and I had ample help today, as well. It was good to see Ian also resume more of a normal schedule.

He didn't do quite as well with the ultrasound today, in part because of some decisions that Elaine and I made when all of this started... namely, that one of us should receive all information then filter what others receive. That is important for a couple reasons. First, it gives an accurate and controlled message. Second, it prevents panic by some who may not be quite sure how to deal with the information they receive. Some people may not agree with that philosophy, but that's the decision that was made by the people with the right to make the decision. I think it is the right decision and it protects my son the most, so I'll stand by it 100%.

I may have thrown Ian's schedule off a bit this evening as I was watching the Orange Bowl. I can hardly believe that Virginia Tech actually won a Bowl!!! They never win bowls...

Ian's Prograf levels have been adjusted down slightly today as the doctors try to work his levels to the point they should be at. Nothing to be concerned over, just the normal work they do to try to get it to the therapeutic levels they look for. They draw blood around 6:30 am every morning to check the levels, then he gets his next dose at 7 am. That time may be adjusted for convenience for Elaine and me, but we'll see what we determine to be the best time for us and for him. I'm against the idea of waking him up to take his medicine every night. But too early in the morning isn't good because we need to have labs drawn right before he takes a dose (he'll get a dose every 12 hours). Time will tell. Just one of those things we'll need to figure out over the next while. Thus our new search for a new state of normal.

2008-12-31T21:56:00.003-05:00

Recovery Day 14...

means a full two weeks since the transplant. Ian is doing well. He walked to and from the ultrasound again this morning and was a pretty good sleeper last night. Perhaps a little too good as he pooped into his pants again. :( We did get a bit of good news today. It is possible that we'll be discharged on Friday (we'll need to stay local still). We'll know for sure on Friday. :) At this point, we would be grateful to get out next Monday, but the doctors said today there is nothing that he needs here that he cannot get through outpatient visits. That's great news to us. Ian would get his staples out in one week upon a return for clinic visits. The only real question for us will be how to handle things with me going back to Charleston to work at some point soon. I guess that's something for us to decide on very soon.

Ian had the IV from his left arm removed today, and it was replaced with a PICC line. The central line in his neck will be removed either tomorrow or Friday. He was very good for most of this, and it didn't hurt that he was given some medicine. It made him pretty loopy, which was pretty funny for a good chunk of the afternoon. Then the medicine started to wear off. They had warned us that it could make him a bit grumpy as he came off, but I don't think anyone expected that side of Ian to ever show up. It was classic evil-spirit-type possession. I kept expecting his head to spin around 360 degrees a few times. Hopefully that side of him never returns. It was pretty miserable. I kept trying to get him to sleep it off, but that wasn't to be. He is sleeping now, at least.

As I reflect back on this year, it has been quite full for my little family. We looked for and finally found a new job. We moved to Charleston. Livia was conceived and born. Ian received his transplant. I think we accomplished most of what we thought we would as a family, but some of my personal goals didn't quite get met. I think the same holds true for Elaine, but that's for her to ultimately determine. About this time last year, we began to realize that the waiting and all of that was the 'normal' way of life for us. We had finally adjusted. Now we have to adjust to a new way of life again. We aren't waiting anymore. We will now be in the thick of helping Ian to get through the critical first year. I am excited for that new challenge. It is intriguing to me that every time we reach a comfort zone, we are pulled from it by a new challenge. It is exciting and frightening all at the same time. There are times I wonder if I'm strong enough to get through it all. Elaine has expressed the same line of thinking. Then I look at my kids, and I know that there is nothing I wouldn't do for them. I believe that a very large majority of parents feel the same way.

Happy New Year to everyone, and I pray this finds you well and that perhaps some of my experiences can be of some help to you as you go through life. Remember that there are no challenges, just opportunities to grow and achieve new strengths!

2008-12-30T23:10:00.004-05:00

Recovery Day 13...

and going strong! Ian got his JP drain removed today. He went to sleep for a nap, and while he was asleep, he got some medicine to help him sleep a bit and forget anything he might wake up for. Apparently, when that tube is pulled, it runs right across some of the main pain fibers for the belly, so it has the potential to be quite painful. Ian hardly moved when it was pulled. He seemed excited to have it gone when he did wake up, as it enables him to move about a bit more freely. He played trains on the floor to celebrate (yes, on a blanket!).

We also learned that he'll get a PIC line tomorrow, and when that happens, it will replace the one in his left arm and the central line in his neck can come out. He'll be down to just one tube, and that can come out when it is not needed so much anymore. It will enable him to have labs drawn without pain and, if needed, to receive medicine. After that, it'll be just a matter of a few days before we are discharged from the hospital.

I think the current plan is to leave the Mason Guest House, where Elaine, Peggy, and Livy are staying and move into the Ronald McDonald House, where we'll have a transplant suite. We didn't use the Ronald McDonald House before because it was possible that we would have had to pack everything up every day since our same spot wouldn't be guaranteed. That's not the case when we move into a transplant suite. It does mean, however, that no more than four people can stay there at a time, which will limit overnight visitors (not necessarily a bad thing). It will just take careful planning and good communication.

Ian is still awake at 11:15 pm, as I'm posting this, btw...

Ian walked all the way to his ultrasound this morning! By far the furthest he's walked since the operation. He even ran a bit, which surprised me. On the potty front, I think we made a little progress as he's decided the potty is okay again. He is laughing more and more, and he loves to tease... especially me! It makes it easy for me to stay with him when I am patient with him and he with me and we get along very well. He did decide to barf his medicines this evening after he received his first dose of bactrim. We got another round and he handled it well as we worked to disguise the bactrim. We used chocolate milk and Sprite, and tomorrow we'll try root beer and yogurt. He seemed encouraged that he was able to get and keep everything down. He got to love on his sister again lots today, who he has missed very much. It is interesting to see their bond already after just two months on earth.

As I think of more that happened today, I'll post or add to this post...

2008-12-29T22:38:00.002-05:00

Recovery Day 12...

means almost two weeks. We moved from PICU to the transplant recovery area on the sixth floor today. It is nice to be out of PICU, but it was a lot quieter there. I'll trade the lack of quiet for the fact that Ian is doing well enough to be out of PICU.

We thought we were leaving PICU this morning, but it was late afternoon by the time we actually got the orders to transfer. Ian got to see his sister, Livia, for the first time in nearly two weeks. He was pretty excited about that, and she seemed to enjoy seeing him again, too. I didn't realize it was possible for a two month old to recognize a sibling so well so early. We have some pretty good pictures of them together, but mostly on our cell phones. We got pizza tonight, but the nearest Little Caesar's was quite a ways away, so we got Papa John's instead. It was good, and Ian ate it well (nearly two slices). He also ate a Rice Krispies Treat, 1/4 cup of grapes, and some chocolate milk (of course).

Everyone on the 6th floor was surprised that he does not have an NG tube. That doesn't happen often, but Ian is eating well and taking his meds with only a small protest, which is easily overcome by the thought of me calling Santa Claus about him not being a good medicine-taker. Cheap, but effective. I'll continue to use that as long as it works.

The goals for the next few days are targeted heavily towards getting Ian physically active again. I miss having him chase me or just wrestling with him, and I'm looking forward to carrying him on my shoulders again, which I probably won't do until after the staples are out for fear of scratching my scalp (no hair to pull, so we're good there).

Not much else to mention right now, but the move (or at least the waiting for the move) engulfed most of our day.

2008-12-28T22:29:00.003-05:00

Recovery Day 11...

makes me glad I decided not to let hopes get ahead of reality. We remain in PICU. Ian had a slight fever last night, so they decided to leave him on his meds just to be sure. The fever broke shortly after it started last night and immediately after I gave Ian a blessing. All the tests have come back negative (no sign of problems), thankfully. The tentative plan is, again, to have him come off the PGE tomorrow around 5 am, take an ultrasound, and if it looks fine, then we'll move to the next floor. I am hopeful, but not counting on it. There is more freedom on the next floor, including visitors and the ever important food.

We may be dealing with some slight regression (which we were warned about), but its also very selective. Ian has started to poop his britches, but only when I'm the only one here. Otherwise, he's fine to go on the potty. Why is he torturing me? I'm trying bribes now to break it. Threats are the next step, but those are never effective, so I'll probably be working the bribe scene until I find something that works.

We took another walk today, this one right before nap, and Ian was great with it. He also was down and around the room a bit to play with trains. I believe he's enjoying the freedoms of playing again, and what kid wouldn't? He's also more interested in food as time goes by, which is a product of the steroids (not the kind that can 'Pump you up'). We're slowly working in a greater variety, and he even told me today that he'd try a hamburger or cheeseburger when I have one next time (that's right, he's never eaten one... no interest). We'll see if that holds true.

That's it for now, but more will follow tomorrow.

2008-12-27T20:49:00.002-05:00

Recovery Day 10...

brings a wow! Are we truly 1o days out from the transplant now? It has gone fast, yet excruciatingly slow. It is one of those times where as you are going through something, it drags on and on, but then later it seems like it flew on by.

Ian took a good long walk today in the PICU halls. It was nice to have him walking next to me holding my hand. He seemed to like being up and about. We're going to try again tomorrow. More and more of his normal personality is coming out. He gets tired pretty quickly, but who doesn't after a major surgery?

The doctors told us today that he may be able to leave PICU tomorrow. I'm still just hoping for Monday, but tomorrow would be nice. They also again reiterated that his overall stay in the hospital is likely to be on the shorter side. That would be nice, but again, we are refusing to count our chickens before they hatch.

We let Elaine's parents come in to see Ian, which he seemed to enjoy. I think the next time they see him will be when he moves to the next floor, though. It was a lot of juggling to get everyone in and out, and for the few minutes, I'm just not sure it was worth all the effort.

We very much appreciate the prayers and support we have from everywhere. It is uplifting every time we see a comment on one of our blogs or on Facebook. We certainly appreciate it, and we also appreciate that everyone seems to understand that we just cannot possibly respond to everyone.

2008-12-26T21:56:00.002-05:00

Recovery Day 9...

the day after Christmas. It was a mostly uneventful day. That's not a complaint. The way days tend to run around here, a few without incident are welcome.

Ian's labs continue to show improvement in liver function and overall health. The doctors have decided to leave us in PICU at least through Monday. With the antibiotics Ian is on and the overall progress, it won't hurt a thing for us to be here two days more. They also told us that his stay upstairs may be shorter than normal if his progress continues. Perhaps he'll get to leave the hospital for local living shortly after New Year's, but again, I'm trying my hardest not to get too far ahead of things. I am confident they'll keep him here until the staples and JP drain are removed.

Ian's overall demeanor is back to its old self. He likes to tease us a bit, says funny things, and giggles at himself quite a lot. It keeps life interesting. He's also up to his old habits for eating and for meds. The latter is great, but the former... well, we were hoping that would change. Two hours for dinner is a lot on the ridiculous side. Something to work on, I suppose.

Well, this emotional roller coaster has left me without energy...

2008-12-25T20:39:00.003-05:00

Recovery Day 8...

and a Merry Christmas to all! It was a very interesting day today.

It started where yesterday ended... with Ian awake for no reason. He originally woke up around 4 am and thought it was time to go. I convinced him that it was still much too early to be up since we couldn't even order his breakfast. He slept on and off for the next four hours. Once they came in for the ultrasound, sleep was done (they do an ultrasound every morning right now). We ordered his breakfast and got much of the hospital type stuff out of the way. Dr. Heffron came by, and told us his white blood cell count was a bit elevated, but probably no concern. He added another IV antibiotic to combat any problem that might be there, but Ian is having no issues with infection that they can tell.

Before Dr. Heffron came, we received a visit from Santa Claus, who brought a teddy bear to Ian that had been left in the sleigh. There was apparently some issues with sleigh oversight as Santa brought lots of bears... enough for the hospital. We took a picture. As Santa was making his way down the hall toward Ian's room, Ian could hear the jingle bells on his boots. He was a great medicine taker, because I told him if he wasn't, Santa might take back the toys that had been left the night before. He had them gone in just a few minutes. That might not be the best means of getting Ian to take medicine, but it worked well. Dr. Heffron was also pleased, and told Ian that he could have his NG tube removed today! This was awesome news since I had, even last blog, anticipated it wouldn't come out earlier than New Year's. Tomorrow or Saturday, Ian should finish up some other medicines that require he be here in PICU, and allow him to move off PICU either Saturday or Sunday. This is great news. He has requested checkerboard pizza for a meal when he moves.

Elaine showed up a bit later, and Christmas morning commenced. We got Ian onto the floor and let him rifle through his stocking, then we moved on to gifts. As I mentioned, I think, last post we had a special bag of stuff from Santa dropped last night. It was truly wonderful. It was full of Thomas the Train stuff and a few games and things of that nature. We also get to take the bag itself with us as it was hand made and is quite nice. Good stuff.

Elaine and I gave Ian a bunch more engines for Thomas the Train and a carrying case for the engines. It was a big hit. Ian played with the engines for some time, then he got tired. He got back up on the bed and ate some lunch, half-way asleep throughout. During lunch, Thrash (the mascot) from the Atlanta Thrashers showed up with gifts. Ian was a bit freaked out by this very large, mean-looking bird, but he accepted the gift. When we opened it, it was a jersey, a collectible statue of the goalie, and a few other odds and ends. I think I was more excited about it than he was. Shortly thereafter, and still during lunch, another family arrived with a wagon full of stuffed animals for the kids. I don't know who the family is, but one of their children was in the PICU here and now they do this every year, bringing stuffed animals to those onthe floor during Christmas. Ian selected a Curious George... not because it was Curious George, but because he wanted a monkey. Well, by this time, sleep is gone from Ian, which is in some ways good because he was wiped by bed time. Yet another item arrived about an hour later, this time a bok of portable games, including Candyland, which is one of Ian's favorites.

Elaine came back later in the afternoon and I slipped out to eat. When I came back, the floor had had another visitor, which I had missed and I was very disappointed. I'm a huge baseball fan, and I appreciate what the players do with the physical gifts they have. This particular visitor is a member of the Atlanta Braves pitching staff, and I've always appreciated him as a player, even from his days in an Oakland A's uniform. As I was walking back to Ian's room, I passed this guy, and thought, that guy sure does look like Tim Hudson... and with good cause. It was Tim Hudson. I didn't want to run out and talk to him, because he was talking to some other people at the time. I was sad I had missed him, but he and his family had left a toy with Ian. Shortly thereafter, Ian's nurse came back leading none other than Tim Hudson (she and I had talked earlier about baseball a bit, so she knew I was very interested in meeting players). He is a truly nice guy. We talked a bit about his rehab and Ian's surgery, and I told him we'd watch for when he was returning to the rotation so we could come and watch him pitch. He gave us autographs, personalizing one for Ian, and shook my hand again. Not only do I appreciate the physical gifts of athletes, I also appreciate how they are able to walk into a room and lift the spirits of those in the room because of what they do. In that respect, I am still very much a boy at heart. I truly appreciate those athletes that go out of their way to use their position and, of course, the money they make, to help brighten the day of those around them. Why wouldn't you do that as an athlete??

That got me thinking a bit more... you don't have to be an athlete to help brighten the day of kids in a hospital on Christmas. Tim Hudson's visit was a bigger deal to me than it was to Ian, probably mostly because of me being old enough to appreciate and love baseball (though I expect Ian will become a Braves fan, which is fine with me). The bigger deals to him were seeing people come and bring him something, even though he had never seen them before and may never see them again. We don't know their names, but they have the wonderful reward of doing a great service for sick children. Can there be a better feeling?

2008-12-24T23:16:00.004-05:00

Recovery Day 7...

brings Christmas Eve and a full one week since the actual transplant. Ian is doing great! He got out of bed today and spent some time playing on the floor (yes, that was okay with the surgeon). He had the legs of a newborn gazelle, but got his legs under him a bit more this evening. It will be even better tomorrow when he sees that Santa Claus has paid a visit.

He has also improved, again, with the meds. One of his pain medications is gone. The doctors replaced the bitter prednisone with a more pallatable oral version. He is also becoming more irritated by the NG tube, which plays to our advantage in getting it gone. I'm trying not to get too far ahead though, so I'm still just hoping he can get it gone by New Year's.

So now I'm here waiting for Ian to fall asleep so Santa can come and so I can go get something to eat downstairs (I've had one meal today so far and tomorrow isn't going to be much better... I cannot order food in PICU, only Ian can). I have time to reflect on Christmas and the true meaning. How much deeper that meaning is this year!! How powerful is the love of our Heavenly Father!!?? I cannot claim to have the perspective he has with us in regards to his Son, but I do feel I got a bit of a glimpse of it over the last week or so. It is exceptionally difficult to send your child off to do something painful that will benefit them or even others in so many ways. I look at my wife now and what she's gone through the last week, and I not only admire her but I also feel a stronger bond with her, even though we've had virtually no time together since this all started. I look at my tiny daughter, Livia, and I notice how quickly she grows, especially since I don't see much of her right now. I also miss the little look of recognition that she used to give me so easily... it still comes, just not as quickly. It has been a bit of fiery week for us, but I can already see us all coming out stronger. Ian's personality hasn't changed, but his resolve seems even more firm... though I cannot put a finger on why I think/feel this way. Elaine has grown much. Livy is growing a lot... and it is important that she not remember this time. I think of how much harder this would have been for her if this was two years from now.

The wonderful outpouring of support and love continues. I see my family growing in many ways, and my love for them grows as well. I see others, especially family, sacrificing so that we can do some things... this is truly the Spirit of Christmas, and even more specifically, it is the true love of Christ that each of us possesses. How blessed are we to go through this type of a trial at this time in our lives!? How wonderful it is to have this experience to appreciate the Christmases of the future at home!? And again, I ask, just how much does our Heavenly Father love us!!!??? There are no limits. It truly is infinite. While that concept remains largely incomprehensible to us, it is times like these where our Father blesses us with the smallest of glimpses.

2008-12-23T23:58:00.003-05:00

Recovery Day 6...

means its been a full week (plus) since we received the call from CHOA to come to the hospital for Ian's new liver. Elaine and I were talking about how today a week ago went... how hectic and exciting and stressful it was. I'm relieved we've been able to keep blogs in order to preserve a history of this. Its a perfect little journal.

So I was thinking it was in the neighborhood of 9:15 am when she called, but that's not the case. She called me at 8:42. Again, for the record, I was working in Fairless Hills, PA (just north of Philadelphia). At the time of the call, I was standing on a very large cargo ship observing the unloading of steel slabs. I did not hear my phone, but i felt it ring. I have, btw, since confirmed that my phone does vibrate normally when it rings, but before this moment, I didn't notice it. When Elaine told me we'd just been called to go to Atlanta, a lot of thoughts went through my head. The most prominent one that seemed precede and follow every other possible concrete thought was "OH CRAP!!!" because of my location. We had planned for Ian and me to fly to Atlanta and for Elaine and Livy to be able to come along later at a more leisurely and convenient time. Those plans were out the window, because Elaine was going to have to get Ian to Atlanta. I could hear a calm panic in her voice (and so could Ian because I could hear him crying in the background a bit). I could feel the adrenaline rising in me, knowing I had to get from Philadelphia to Atlanta as quickly as possible. I wanted to be sure I got there prior to Ian heading back into surgery (turns out we had plenty of time, but we didn't know it then).

Now here we are today. Ian is back to his old eating habits, which is both frustrating and yet somehow calming. He still takes FOREVER to eat dinner, but he will eat everything eventually. I think he actually chews too much, if that's possible. He didn't do too well with the meds tonight, but he did eventually take them by mouth. He and I talked a bit after and I'm hoping he'll do better tomorrow. Ian is pretty amazing sometimes how much he comprehends on things like this. I'd like to see that NG tube removed, but if it needs to stay in, so be it. The current prognosis is still the same from yesterday... he'll leave PICU potentially Friday or Saturday. He did get another IV removed tonight (from his right hand), and he seems overall pretty happy with it out. He would have ripped it out while sleeping anyway.

Another example of how amazing he is: yesterday, while we were talking to the doctors, he piped up and asked if he was going to get his new liver. We all laughed a bit and told him he already had it. That seemed to satisfy him. We pointed to the Dr. Heffron and told Ian that it was he who did the surgery on Ian's tummy. He smiled. It was nice to see.

Oh yeah... Mr. Puppy was a smashing success last night. Kudos to Peggy Meldrum for her idea on getting Mr. Puppy next to Ian. He'd been afraid of getting Mr. Puppy dirty ever since one of his IVs popped from his left arm and he bled on one of his favorite blankets (it washed out). So to combat that, my mother-in-law suggested getting a hospital gown for Mr. Puppy. It worked. Ian slept like at home. Even the nurse commented on how well he'd slept. She did all her stuff without him waking up once. Keep your fingers crossed that he'll do a repeat tonight... I still need it.

2008-12-22T22:25:00.002-05:00

Recovery Day 5...

is in the books. Ian is doing fantastic. The surgeon and doctors told us today he is pretty much home free now as far as liver function goes. It is running and firing on all cylinders. Very exciting. That let us focus more on the road, which looks a little something like this:

Friday or Saturday, Ian will be moved from PICU up to the transplant floor (sixth floor, I believe) so long as things stay on the path they are on now. He will stay there for 2 to 4 weeks, depending on how he's doing. In another two weeks or so, he'll have the staples in his stomach and his JP drain (it is a tube that has a suction bulb on one end and the other end is located inside his tummy to pull fluids and stuff from the site... it is quite simple in concept but incredibly effective) removed. A short while after that, he will start to become eligible to be discharged.

We will plan on him, Elaine, and Livy all staying here in the area another month at least after that as they'll be monitoring his Prograf levels to keep him at a certain point. He'll take Prograf the rest of his life (it keeps him from rejecting his liver).

Ian also has an NG tube (runs into his nose and down to his stomach) through which they pass all the medicines and calories as needed. Dr. Heffron told Ian that as soon as he learns to take his medicines orally and keeps up his nutrition, he can have that removed. We are using that as incentive to get him to take his meds by mouth. He has always been a champ at taking meds, and he hates the tube, so we think we can get rid of the tube shortly after New Year's and maybe even a bit before. He's taken most of his meds since then by mouth instead of through the tube, and his appetite is finally returning as we swing him to his old schedule. We're keeping fingers crossed. I think it is possible that we may want it gone more than he does. :)

He got to get down from his bed twice today. The first time, he curled up on me and took about an hour and a half nap. I also snoozed a bit (hard not to do with a warm little body snuggled that close). The second time, he didn't want to eat dinner unless he could sit in one of our laps. We let him, and he was a champ at eating.

Not much else to report today... OH - I got Mr. Puppy for him to snuggle tonight, hoping that helsp solve some of the sleep issues that he is (and therefore I am) having. I'll try to mention how that goes. Mr. Puppy, for those who may not know, is a stuffed dalmation that I picked up in Boise, ID, quite some time ago. Ian has laid claim to it, and it is his version of a Teddy Bear. I have no issues with it. He's also not as attached to it as I feared he might be, but it is also a definite source of comfort for him.

More on the morrow...

2008-12-21T16:47:00.002-05:00

Recovery Day 4 is going very well. Last night was much better than the night before. Ian and I had to have a very late night chat, but I managed to convince him that it was best for both of us if he'd let me get at least a little sleep. I think it also helped that he hadn't been asleep the whole day. :) We both managed to get to sleep and stay asleep.

I'm still behind on sleep, but I got a couple more hours when Elaine came today. I awoke to find my sister-in-law and another familiar voice in the room. When I rolled over, I discovered that my friend Mark Duncan had stopped by to check on us. It was very nice to see him, and a big surprise. We talked for a few minutes, then he left as he was on his way back home to MS.

Ian got to eat today! He was very excited when Dr. Heffron told us he could resume a normal diet. He didn't even have to step up from one thing to another. It was a big help that Ian's Kasai was done well, because Dr. Heffron said he could use the same connection that was created then. Pretty cool. They are also further convinced that Ian's liver has turned the corner. We are still not out of the woods, but things seem to be going well on his end. He's still yellow, but his bilirubin has peaked and appears to now be falling. His spirits are up significantly. He is also urinating like a champ into the little portable urinal they provided. It'll be interesting to see how he does when the next bowel movement comes.

Not much else to mention for now, but if there are any big developments this evening, I'll post them later today.

2008-12-20T21:46:00.003-05:00

Things appear to be swinging in the right direction. The last few sets of labs have shown an overall improvement in liver function. Ian has also shown an overall improvement in function.

BTW, last night absolutely sucked. Ian would not sleep unless I was standing right next to him holding his hand. As long as I did that, he slept okay. But he'd wake up a few minutes after I left his side and cried a lot. I finally figured out how to keep him asleep around 3 am after neither of us had slept much. Seemed pointless to me for him to not sleep when it was in my power to help him rest, so I pulled up a chair and did what I could to sleep next to him while holding his hand. He did okay sleeping from that point on. I didn't. I figure I got about 30 minutes of sleep the rest of the night. I figured that out by adding up the minutes between times on the clock for periods I know I was asleep. Yes, I did have that much time on my hands.

Elaine came over today and got to spend a fair amount of time with Ian. This was very good because I know she feels like she's not doing enough, but with her being the only one available to feed Livy, she's got her hands full there. While she was here, I managed to crash for about 3 hours. That was huge. Livy was even cooperative in the waiting room with Grandma Meldrum. Yet another example of how Heavenly Father's hand is evident.

Ian has, to date, had about half of his tubes and other connections removed. He still has a few to get rid of, but all things in time. Like I said, overall, I'm pretty pleased with his continued progress. More tomorrow...

2008-12-19T23:19:00.003-05:00

It was a long day, but an okay day.

Ian's liver is not responding as fast as they'd hoped, but it appears to be responding. The next couple of days and labs will be crucial to showing how well things are adapting.

Ian spent most of the day awake and alert, which was nice. We watched a lot of Thomas the Train and Bob the Builder, with a couple Christmas movies thrown in for good measure. He is doing well, and is back to talking and showing lots of interest in doing his normal things. He asked multiple times today to get down and play with trains on the floor. I gently told him no and explained why each time, and he seemed to be okay with things as long as he got an explanation.

He also had a bowel movement today (TMI, anyone?)! I missed it because I left for a few minutes to get some dinner. Anyway, signs point to recovery, but we are not out of the woods!

2008-12-18T21:11:00.000-05:00

Recovery Day 1 is almost over. Ian is asleep now. Hoping he sleeps through the night, but not counting on that. He is doing well. He is quite alert when he is awake, and calms more quickly each time. Some of the drugs he is on cause some confusion as he awakens and doesn't know for sure where he is. He's been quite the trooper though, and I have no reason to doubt that will continue. As a good sign, he's already asking to eat, drink, and go to the potty (I believe there won't be a regression from potty training).

This particular post is mostly about thanking the literally thousands upon thousands who have been praying for my son. Please keep the prayers coming, as we have multiple hurdles still to jump in the next few days.

2008-12-18T13:58:00.000-05:00

So, with surgery yesterday, today is Recovery Day 1.

Ian had the breathing tube removed around 8:00 AM and he has been awake quite a bit, but is still doing a lot of sleeping. He is, naturally, not overly comfortable, but they are leaving some of his medicine on for pain relief that works nicely to help him sleep. As I write this, he is sleeping. He's been a champ. They've let him have water to drink (though they are sucking it back out through his NG tube), but it helps to soothe his throat and it helps him feel lots better. He actually wants to sit up and move around a lot already, which is great.

I spoke with the doctors earlier, and they reminded me that although things are looking great, this is like an airplane ride. Smooth right now, but leave the seat belt on just in case. As a point of reference, one of the numbers they watch went up a bit this morning, so they are adjusting medication accordingly. The next set of labs will tell us more, but it shouldn't be a big deal.

Elaine continues also to be a trooper, perhaps moreso than I. She is in the process of getting home to get some things taken care of and to get her car. She'll return to Atlanta tomorrow. I believe her parents are planning to assist with the return here, but we have asked that they not come see Ian while he is in PICU. For one reason, only two people may be in his room at a time. For the second reason, with all the tubes and connections he has right now, I just don't want people to remember him that way. I'd rather they remember him after he leaves PICU with far fewer tubes and I don't think its fair to Ian either. I suppose I could always change my mind, but probably not. :)

2008-12-17T23:56:00.000-05:00

Ian is out of surgery!!! He was finished at around 7 pm, so this post is obviously quite dated, but our priority was to get in to where he was, not to blog about it. So sorry! ;)

We got to speak with Dr. Heffron, the surgeon, around 7 pm. He told us that it went extremely well. On a scale of 1 to 10, he gave it a 9.9. Some very minor things to take care of from Ian's Kasai that extended the time of the procedure, but he said there was no drama in the operating room, which is exactly how he likes it. Drama usually means trouble. He said they started the actual transplant around 2 (first incision was around 1 pm). It went rather quickly because Ian has good sized arteries and blood vessels, so the connections there were not difficult to do. His old liver was quite hard and he was, from that, moving rather quickly towards needing it badly, so the timing turned out to be perfect. We may be able to get pictures in the near future. He also told us the new liver was a perfect size match. This is great because they don't have to use Gore-Tex (something used to hold the liver in place) and Ian is completely sealed up, meaning he should heal rather quickly.

We finally got to see him around 8:10. His nurses are fantastic. We were told last night that the first few nights they give the transplant kids nurses with more advanced training. We are grateful for that. He has lots of tubes of various types in him right now and is sedated to expedite healing, but he actually looks fantastic to me. For those wondering, no, he is not pink yet. That usually takes a few days, so he's still our little yellow fellow for a brief bit longer.

This is not the end of the road for him. It is merely the beginning of a new road, and this new road could have lots of bumps and potholes to contend with. I just think back to a certain special blessing that Ian received in April 2007, where he was promised a full recovery. Most people are not aware of that blessing, and it was the type of experience that shouldn't be discussed much publicly due to the special spiritual nature of it.

I also want to comment on the outpouring of love and support that has come our way. I've heard from people I consider friends but haven't heard much from for some time... even years in some cases. It is amazing to me how powerful prayer is and how powerful love for one of our Heavenly Father's littlest ones can be.

I'm also, again, amazed by my wife. She is truly a strong and special woman. I've seen her, over the course of the last two days, handle a situation that was unexpected with great class and a greater calm than would have been expected of her even five years ago. She's been able to drive a car she's not completely comfortable in through Atlanta traffic (another discomfort for her) and, allegedly, she drove very fast at some points. She has handled her own temporary physical maladies without complaint and with tremendous determination. She has also been at my side or at Ian's side or at Livy's side for two days straight with no break. Being that close to me for that long should be enough for anyone to claim sainthood. :)

All kidding aside, I've come to realize just how much my family means to me. There is no "Why?" this time, just the realization that, for all of them You are my sunshine, my only sunshine. You make me happy, when skies are gray. You'll never know dears, how much I love you. Please don't take my sunshine away!

I now appreciate, even more, that my dad sang that song to us as kids...

2008-12-17T13:54:00.000-05:00

The time has finally come! Ian is, as I type this, in the process of getting his transplant here in Atlanta. He was anxious, as might be imagined, and we share those feelings as his parents. It is a difficult thing to let your child, one you have cared for for so long for so hard, out of your control, even if it is to the surgeons who have the skill to save his life.

The call was, to say the least, a surprise. Ian's PELD was still fairly low. We had anticipated that we still had a few years before that call would come. I was working out of state in Fairless Hills, PA (just north of Philadelphia). I was actually observing the unloading of a slab ship so I can complete the writing of a procedure on the work. I felt my phone vibrate, but didn't hear it ring. It has not vibrated during a ring before or since, and the volume was not turned down. I looked down at the phone and noticed it was Elaine, so I picked it up (of course). I was expecting a normal type of phone call. Instead, she said "We just got the call for Ian's liver." I had to have her clarify, and then my adrenaline kicked straight into high gear. The only thing I could say was "I'm standing on a cargo ship north of Philadelphia, and I'm close to 1/2 mile from the offices." We agreed I needed to get to the Philadelphia airport as quickly as possible. I sprinted the distance back to the office, pausing only to return my visitor's passes. If you've ever seen a fat man run that far, it can draw some attention (especially when he's wearing steel-toed boots and a reflective vest, hardhat, and safety glasses... not a pretty picture, is it?).

When I got back to the office, I was out of breath, but managed to tell my colleague with whom I had travelled what was going on. We left quickly after she assisted in getting my ticket changed. I left Philadelphia on an 11:31 flight direct to Atlanta. I landed at 1:45 or so. In the meantime, wather prevented Elaine from being able to fly to Atlanta from Charleston, so she drove (very fast, I might add - she allegedly hit 100 mph more than once). We met just off the exit at I-85 and drove into the hospital together (Elaine's sister and brother-in-law picked me up at the airport).

Once we arrived, we were able to get checked in and then we just had to wait on the organ to arrive. It came this morning, but with Ian already checked in, he and I slept here at the hospital. Ian has been a champ, as he usually has with things, and Livy is thankfully to young to have any shot at remembering this. Elaine's sister is helping out a lot with Livy. Elaine has spent last night with her sister and will likely spend tonight there as well before returning to Charleston tomorrow.

Not much else happening right now except a lot of waiting. I'll post more over the next few days to keep those interested in progress up to date.

2008-10-23T21:03:00.000-04:00

I posted two videos of Ian, one with Livia as well, to my facebook page...

The golf video is also here, while the video of Ian and Livia is here...

2008-10-17T20:11:00.000-04:00

Needless to say, it has been quite some time since I last made a post. Lots has happened (no, Ian has not had his transplant).

No telling whether or not this will work, but its worth a shot... Elaine and I have had a little girl, Livia Janene Herbst, join our family. Pictures are available on my Facebook profile. She is cute as a button. She has my nose, Elaine's chin, and Elaine's fingers and toes. I think she looks like Elaine (yay for Livia), but there are some who think she looks like me (which would be a shame).

The new job is going well. I'm learning a lot, and keeping pretty busy with that and some of the projects I'm working on. My current big project is creating a forecasting model that will assist in getting loads of scrap metal picked up from around the facility and transferred to one of two locations. I'm searching through freeware now to see if I can find something that will work. The catch is that work blocks the download of freeware, even if it could potentially be something of benefit to the job... that's a bit frustrating, but I understand why they do that. It means that much of my searching is done from home. With the arrival noted above of Livia, that means that the search is going slowly.

We are pretty well settled in Goose Creek (Charleston area) now... and we should be since we have been here for three months now.

I took Ian to the driving range this past Wednesday. It was entertaining for both of us, but for different reasons. I'm going to get a video of him posted to YouTube. Once that happens, I'll update this post or add another very short post providing the link. A very nice lady gave him a ball marker from the golf club we were at. She and her husband and daughter were impressed that he was out there at the tender age of 3. He had fun, and that is the most important thing. I want it to be something he enjoys, not something he feels obligated to do.

The blessing for Livy is set for next week. We should still have a decent showing by family, but not as much as for Ian's (we live further away from people and gas is much higher than it was three years ago).

I got yelled at by a friend who saw a picture of me about my weight, then by my doctor telling me I should look to shed a few pounds. I've started working on my diet already, and will be adding exercise in regularly next week. I've determined to blog on my efforts to lose weight in hopes that it may help someone else and also to make myself accountable to myself. I think and hope it will help. Why is it so hard to perform lifestyle changes?

Keep an eye out for that YouTube link to Ian swinging his clubs at the driving range... it really was lots of fun for both of us...

2008-07-20T00:32:00.000-04:00

Yeah, time to post, I think.... though last I checked, I'm doing better than my buddy Mark. His last post, last time I looked, is nearly 1.5 years old at this point. :)

So, we have moved. I accepted a job with Kinder Morgan and we completed the move to the Charleston, SC, area on June 30. I just today got our computer up and running as we had to purchase a new desk (craigslist is awesome, btw). We live just outside Charleston, in Goose Creek, and we seem to be about 20 minutes from everything... except work. Takes me about 30 - 35 minutes to get in every morning, depending on traffic at Ashley Phosphate and a couple other spots. Not too bad.

The whole move process was pretty amazing. Our house in Radford sold in about a day. We found a house down here on our first trip. Everything really fell into place nicely. It is amazing what our Heavenly Father will do for us when we trust Him and leave things in His hands.

Ian continues to do well, and has finally started potty training!!! He got going yesterday a little bit, but he was very nervous about going potty in the potty the first time. Took a lot of coaxing. Today was better (but not perfect). He went three times in the potty and had three 'accidents', but one of those was with a pull-up on. None of the three mishaps were disastrous, as he caught himself going each time and told us. We promised him a Thomas the Tank Engine train table when we completes the potty training task, and for starting, we went to Target last night and bought Molly, the yellow engine (he chose it).

We visited Atlanta this past Wednesday to see the group at CHOA. Ian truly doesn't mind going there, except having labs drawn. But then, most kids don't like needles. The staff is good there and Ian does pretty well with things overall. Bribery is also effective (jelly beans and chocolate during the drawing of labs). His labs came back and his score is a 7, meaning he stays low on the list. This is a plus, especially right now.

Elaine is expecting!!! I don't remember if I put this out there before or not, but we will have a little girl join us in October. Ian is... well... let's call it cautiously excited. I don't think he has much of a feel for what is happening yet there, except that Momma cannot pick him up anymore and has to have him climb up to hold him. I do think that after the first round of green eyed monster passes, he'll be a great helper and great brother. We are calling this baby 'Pat' until she is born and gets a real name. We are pretty close to decided on that name, but won't reveal that until she's born. Pat was chosen as the temporary name when we didn't still know whether the baby was a boy or girl, so it could have gone to Patrick or Patricia. For informational purposes, we called Ian 'Sam' until a couple days after he was born (Samuel or Samantha).

So, why do we try to pile as much as possible into short time periods (move, baby, etc in 2008 for us)?

2008-05-27T16:48:00.000-04:00

Time to end the suspense about the pickle, I suppose.

So I was offered the opportunity to switch positions with my current employer. It was an attractive thing in a way because it would get me away from some elements of my job that I really didn't want to be a part of any longer (see: regulatory compliance). On the other hand, I realized at the time that my career path was leading me away from my current employer. On top of that, with Ian's liver disease, it is a huge need for my family to move south in order to get closer to Atlanta for purposes of travel and the future follow-ups. I had, at the time, felt like I was going to leave someone somewhere in a lurch. So I had to choose between different interested parties, or so it seemed. Thankfully, it has all worked out well. The position I was offered was filled by someone quite competent, and now that I am leaving the New River Valley, time has been allotted to attempt to fill my roles within the company. I still hate those blasted dill pickles, and at the time this was all happening, this was a dilled dill pickle.

I am grateful to my employer here for all they did for me, my wife, and my son during our trials.

So, where are we off to? I have a job in Charleston, South Carolina, so we are moving there in June. Our house here in Radford was listed this past Friday and sold the next day, Saturday. Pretty incredible. Very exciting for us and especially for me, because it means Elaine and Ian will come down much sooner than we had originally thought.

Ian continues to do extremely well. His PELD is currently a 14 (his last labs were done here in this area). In about three months, he'll get a new score, and based on the last trends, his score will go down.

I believe that is all for now... Okay, so I know the pickle wasn't nearly as bad as it may have seemed at the time, but things were a bit stressful there for a while. I'm just glad I didn't have to try to eat that pickle...

2008-02-06T10:14:00.000-05:00

Pickles... the only kind I like are the edible 'sweet' variety. Otherwise, you can keep them. Yet, I find myself in a metaphorical pickle now (see definition #4). What to do?

Ian is doing exceptionally well, which is great for everyone. His current PELD is a 6, leaving him pretty close to the bottom of ye ol' list in Atlanta. Not a bad thing, just extends the wait, that's all. But waiting is what we do the most of. Yes, this does add to the pickle I referenced above, but is not the sole factor involved.

Well, I don't have anything else at the moment. I'll give further details on the above mentioned pickle at a later date in time.

2007-12-12T10:24:00.000-05:00

Just a quick update on Ian for this posting. He is doing very well... too well, if you want to look at it that way (we try not to). His PELD was a 4 after our last trip to Atlanta, leading us to develop a theory, which I'll get to in a minute. He just had labs drawn again yesterday, and his score would be a 10, further supporting our theory (not yet, next paragraph). This is down a point, still, from two months ago when he was an 11. We continue to see a downward trend in his PELD score, which corresponds to an improvement in his overall health. This is not where we thought we'd be. During the fundraising campaign, we believed Ian would get his transplant that summer (summer of '06). Now we sincerely believe we'll be waiting a few more years, though that could change, of course.

So, our theory: McDonald's chicken nuggets are full of protein and are very good for Ian. Every time we go to Atlanta, that's what Ian has for dinner the night before we are there. Each time we have had his labs drawn there, his albumin levels have been in the normal range. This was supported by yesterday's labs because he has not had nuggets for some time. So, kids, when your mom or dad tells you to eat chicken nuggets because they are good for you, here is some supporting evidence. And if they tell you not to eat them because they are not good for you, again, here is some evidence in your favor.

2007-11-12T12:34:00.000-05:00

Its been a while since my last post... nearly three months. Things have been pretty busy at work and at home. We did our last bit of 'winterizing' this past Saturday, raking leaves and fertilizing the yard. We put chairs away from outside and some other cleaning type work around the house (mostly outside). A few more small items to take care of and it'll be all set for winter.

Ian is doing exceptionally well. His PELD score is now an 11, which is the lowest its ever been. it appeared to us that we'll be waiting for a while, and the specialist in Roanoke confirmed that, saying he wouldn't be surprised to see us wait another two years. Ah, the ol' Catch 22 strikes again! We'll see what the transplant hospital tells us next time we are there. It puts us in a position of needing to make some life decisions for our family, so Elaine and I have spent considerable time praying about some questions we need answeres to over the last little bit. Why is life so consistently complicated? At least it keeps things interesting...

2007-08-24T15:27:00.001-04:00

We had another visit with the transplant center last week, and our little son Ian continues to defy the odds. His PELD is a 13 (though he is officially a 16 since he doesn't need rescored yet). We have been told there is not a medical explanation for how well he is doing. I am grateful for his growth and progress. It is not an easy thing to deal with for Elaine and me, but we welcome the opportunity to get to know our little son better each day and watch him grow. After seeing the story of another little boy, Carter Heckman, it makes me even more grateful. It is my belief that little ones like Carter, Ian, and others with biliary atresia, have an eternal bond and knew each other well in their life before this one. These little ones and the families involved volunteered to have this trial in their lives. Why we volunteered, I do not yet know, but I have had this confirmed to me several times by things others have said and by answers to prayers. It does not make it any less painful when things do not go well, and my heart goes out to Carter's parents even now, several months after their loss. I do not know why Ian thrives while others, like Carter, do not. I have nearly reached the point where I no longer ask God why... nearly, but not quite...

2007-08-24T11:48:00.000-04:00

While in Atlanta for a transplant checkup, I had the wonderful opportunity to go to see the Giants and Braves play. The Braves took 2 of 3, which was disappointing but expected. The Giants have not played well this year, and are cellar-dwellers. I did get to see Bonds hit #759, though I thought Andruw Jones was going to get it. On Thursday, Mark came up and we went golfing at the North Fulton Golf Course and then to the game that night. It was HOT golfing... helps me better understand why they call it HOTlanta. In the first inning that evening, Bengie Molina hit a 3-run homer that came to our section, nearly right to us. It hit a row in front of us and about 4 people over from where we were sitting. The guy who caught it made a very good barehanded catch. I've never been that close to a home run or a foul ball before, but I hope to have many more chances. I would have gone for that ball, but there were small children in front of us that we would have had to trample to get to the ball... not worth hurting a child for a souvenir.

2007-08-08T00:29:00.000-04:00

I have noticed that it takes an event to get me to enter something in my blog. Today's event: 756. That's the career home run total for Barry Bonds, and he did it in San Francisco. Not a cheapie, and I certainly appreciate that the Nationals pitched to him instead of around him. I've enjoyed watching baseball, especially the Giants, over the last few days while he approached and then broke the record. Given that they stink (the Giants), I don't expect I'll see much more of the Giants on tv.

I am looking forward to going to see the Giants play next week. Again, I'm going to attend all three games. This time, my friend Mark will be joining me for the third game. I will enjoy seeing them play live... there's nothing else like it.

Tied to that trip, Ian has a checkup with the transplant center. His score continues to jump around (cue House of Pain), with nothing indicating he'll receive his transplant anytime soon. We just continue to wait. Overall, life is pretty good, I think (part of that is the euphoria from seeing that home run). And if it isn't the euphoria, why not? Life is short. We should enjoy it.

2007-07-10T00:06:00.000-04:00

So the All-Star break is upon us in baseball, marking the half way mark of the season (though it is actually a bit past the half-way mark), and my Giants are looking a bit... well, out of it. But, baseball is in season, and its a great thing to watch. I am watching the Home Run Derby as I write this, and there's just something majestic about seeing a baseball fly that far.

Ian continues to do well. He is no longer first on the list, but he's due for labs here in two days, so we'll see how that goes. We'd love nothing more than to see this waiting stage end and move on to the next stage. We still don't understand why this has been given to use to handle, but we trust that Heavenly Father has plans for us, and we are humbled that he trusts us enough with Ian to give us a trial like this. That's a bit difficult to explain to some people, but it is finally something that I no longer have to ask "Why?" about.

I'm looking forward at this point to my sister's wedding in August for a couple of reasons. First, her husband to be is a good guy, and I think he and Amy are good for each other. Second, my brother will be home from Kosovo. While we talk fairly frequently, I have not seen him now in person for about nine months. Tough when you think about the fact that he is one of my best friends as well as my brother. He's going to come spend a couple days here and we are going to go golfing. He bought a set of clubs and has become more interested in it since he and I went almost a year ago. This is also around the time the Giants will be in Atlanta, and I'm going to go to see the games again this year. Bonds will probably have already passed Aaron by then, but I look forward to being able to watch Major League Baseball. Still working on having someone to go with me, but that will sort out as it gets closer.

If you are interested in a different perspective, check out Elaine's blog. There is a link to the right.

2007-06-18T18:37:00.000-04:00

A regular post... but I ask myself, "Self, why do that?" And I answer myself, "I dunno." But I do it anyway. Yes, on occasion, I talk to myself. Everyone does it, some of us just don't tell the truth about it.

We had an overall good visit with the transplant center last week. They did quite a few transplants in May, moving Ian up the list by attrition. His PELD did rise a bit to 19, but from a 17 that's a pretty small increase. In spite of that small climb, it was enough to get him up to the top of the list for his size. The doctors believe he will get his transplant some time this summer. We are excited, anxious, and nervous all at the same time. Basically, our little one goes from healthy to the brink and then is brought back. Kind of a strange way to think about it, but seemingly true to us. Most people never pay attention to organs until one isn't working quite right. Thankfully, Ian will never know differently.

Work continues to be very busy. Not much else to say about that.

Short post this week, but I think that will do for this time. Out for now.

2007-06-04T18:39:00.000-04:00

Long time, no blog. My bad. Things have been busy, to say the least. At work, we are trying to get the release of Qualtrax 4.0 completed, which has proven a hefty task. On top of that, project seem to constantly boil up and require attention. I am typically at work shortly after 8 in the morning and return home whenever I finish for the day. Kind of depressing, actually. We should work to live, not live to work. Why can we not get that through our heads sometimes?

Ian has been doing well, overall... kind of. His PELD remains consistent with where it has been for several months now, but he has moved up the list a bit since the center has done several transplants recently. This is great news for everyone, really, since it means kids are getting another chance at life and Ian is also getting a chance to continue to grow and develop.

Growth and development took something of a sidestep two weeks ago. Ian was in the nursery at church when an accident occurred and he was on the wrong end of a broken leg. He had what is called a buckle fracture, meaning the break was not completely through, requiring nothing along the lines of setting the bone. He has had an aircast on his leg for two weeks straight, and we've discouraged him from walking or even standing on his leg. Today he was given the green light to resume 'somewhat normal' activity. No jungle gyms, but he can walk if it is comfortable and from what Elaine tells me, he has taken full advantage.

2007-04-20T18:52:00.000-04:00

We had a visit to CHOA again this past Wednesday, and, as usual, it was a good visit. They continue to be pleased with Ian's growth and development. He showed good weight gain, which we were concerned about since he has stopped drinking milk (more on that in a moment). Ian was a great traveller, but he's certainly eaten better (more on that, too, in a moment). He is typically exhausted when we come out of our appointments because it is right smack dab in the middle of his naptime. He fell asleep about five minutes after we got on I-85, and slept until Gaffney, SC (which is over two hours driving time).

More on the milk situation. We have taken away the bottle, finally, and that was how he was drinking milk. Since that moment, he will not drink milk no matter what we try. The doctors have said that it is a matter of time before he gives in, but I'm not so sure at times. He has his mother's stubbornness (because I am obviously completely innocent of being stubborn). He loves yogurt and cheese, however... so much so that we cannot use those words in front of him. To offset this small problem, we use the czech word for cheese (syr - pronounces 'sear'), and have to substitute goy for yogurt because the czech word is the same as english.

Most times Ian is a pretty good eater. For example, last night he ate two full pieces of cheese pizza (see, the cheese strikes again!). He does not, however, do well in restaurants. On the way home, we stopped at the Arby's in Gaffney and got him a junior roast beef sandwich. The little stink ate the top bun, but wouldn't touch the roast beef. Why is that people tend to leave behind the best stuff at times?

We live in the southwest part of Virginia, about 15 minutes from Virginia Tech (my wife and I both completed degrees at Tech). We are saddened by the events that transpired this past Monday. Our prayers go to the victims, survivors, and families. My father-in-law is a professor at Tech and Elaine and I both know many people associated with the school. This is one of those things that is incomprehensible to me, and when it is in your backyard and at a place familiar to you, it becomes surreal and almost dreamlike. Again, our prayers of faith and for healing go to all those affected by this tragedy.

2007-03-30T10:47:00.000-04:00

So we've been home from vacation now since Sunday. Hilton Head Island was great, as usual. Good golf, nice beaches, and quiet this time of year. Ian did very well during our stay there, although we had to let him sleep between us while we were there since he hated his playpen as a crib (and hates it in general). That made the first few nights back home miserable, but last night he was back to his normal sleeping habits.

I played four rounds (72 holes) of golf, and my last round was, of course, my best. I had a few bad shots, as usual, but nothing too terrible. All in all for the four rounds, I was minus eight on golf balls... meaning I used up all my remaining old balls and two brand new ones. I lost both of the new ones on the same friggin' hole! :) That's okay, it was fun, and that's what matters.

Now we are back to the ol' grind here at home. Why is it that you always feel tired after vacation, though you go on vacation to rest? Oh well, at least it is a different type of tired.

2007-03-21T22:12:00.000-04:00

And so Wednesday has come in this week of vacation. Ian has reacted badly to the plethorous amounts of pollen and has caught a cold on top of that. When he was diagnosed with RSV in November 2005, they told us this could happen. Makes it tough on him to sleep... which in turn makes it tough in us to sleep.

The time to golf is good for me. I've been able to get out each of the last three days and play 18 holes each day. I'll put more information out on that next week. One problem I'm having is that I keep offering up all my golf balls to the water gods (the ones who live in the hazards and attract the flight of your ball so that no matter where you aim, your ball hits right in the middle of the hazard). I would have thought I would have appeased them by now, but thats not the case, apparently. I have three of my old balls left... something tells me they won't make it out of here...

Golf is one of those things where perfection is elusive (and for some of us only an abstract idea). One shot is a perfect, down the center, right-where-you-wanted-it drive, the next is a nasty squib shot off to the right because you toed the blasted ball. Those sweet down the center shots keep me coming back, but after the way I played hole 18 today, I have to ask... WHY!!!???

2007-03-18T22:48:00.000-04:00

At long last, vacation! Elaine and I are ecstatic to be away from work and able to just relax. She'll do some shopping, I'll be playing exactly four rounds of golf. Ian is a bit out of whack, but overall handles things pretty well, I think. Ah! How we love him!

At church, our bishop was released from his calling as bishop and a new person was called. He is a close friend of ours, and we are excited that we don't have to go through the ordeal of explaining the ins and outs of Ian's liver disease and how that affects us... Jack already knows (perhaps better than most) pretty much everything there is to know. He and his wife, Jaime, ran the campaign to raise funds for Ian's transplant.

So, I realize I should probably explain that we belong to the Church of Jesus Christ of Latter-day Saints (LDS), commonly referred to as "the Mormons". Our church has a lay ministry, meaning no one gets paid for the work they do for the church. Members attend a specific unit, usually defined by geographic location. Out of the congregation, various people are called to fill different positions within the ward or branch. Hopefully, this helps provide a little light on how Jack, a friend of ours, became the bishop of our ward. Callings are given through revelation, meaning there are not applications or campaigns or anything of the sort. One day, for example, Jack would have received a call from the Stake President (wards and branches are organized into larger units called stakes), and the Stake President would issue that call to Jack.

That pretty well sums things up in a few brief sentences. If you want to know why we do things the way we do them, feel free to visit the church website for information on organization, or feel free to submit a question to me via comment, or just ask your Mormon neighbor.

2007-03-03T20:18:00.000-05:00

Spring is in the air... uh, sort of. It is warmer than February and very windy. I think that counts.

Okay, okay. So it has been quite some time since I entered anything here. Why rush things? :)

Ian continues to do well. We had a visit to the tranplant center in early February, and the doctors are still pleased with his health. They certainly understand our frustration in having to wait, but the system exists for a reason. Ian's PELD was a 12 from these labs. We have noticed some apparent variation in the different labs. Whenever labs are done here at home, his score climbs. Whenever labs are drawn in Atlanta, his score falls. Coincidence? Not after this many times! Coincidence is not usually consistent as well.

Work is absolutely chaotic. We are still completing the move of the Envirosealed division from Chattanooga, TN, to Christiansburg, VA. On top of that, we have a customer coming to audit the processes (which are not yet completed due to the transition). Add in that we are currently doing feature specific testing for the Qualtrax 4.o release, and I am busy enough that my wife doesn't see much of me. Yeah, don't ask her how she really feels about that. You'd get an earful. :)

Speaking of Elaine, she and three friends took a much-deserved road trip for the weekend down into North Carolina. This is her first real getaway since Ian was born 20 months ago, and she is just plum tuckered (I always wanted to use that - in honor of you, Mark). I have heard from her, so I know she's okay, but she is doing what she is supposed to and being away. I anticipate a much relaxed wife when she returns.

Our family vacation is coming up later this month. I think all three of us are looking forward to this (can a 20 month old look forward to something that he has no concept of?).

I went golfing with a friend today, possibly for the last time. He has accepted a position with his employer and is moving to Hagerstown, MD on Monday. It was a little on the windy side. That always makes the game... how shall I put it... more interesting? But seriously, golf is golf, wind or no wind. We enjoyed ourselves, which is the main point. I also ran into someone I worked with six years ago. We spent a few minutes catching up and reminiscing, as well as updating each other on where people are now and what they are doing.

Hmm... you would think I would have much more to say, but such is not the case.

2007-01-09T17:05:00.000-05:00

Boy, does time fly? Christmas blew past us, but was a lot of fun for my wife and me as Ian got into things a bit more this year, though next year should be even more fun. Elaine's parents joined us at our house along with her 'aunt' (a family friend who is practically and aunt). It was a good morning for everyone. Ian had no clue anything was really different, so he got up as normal and then we went into our basement after breakfast (family tradition). He got riled up at that point. He could, we think, sense our excitement and fed off that. He emptied his stocking, all the while basically running in circles with excitement. We just let him play for a while, and then sat down near the tree to open gifts. Elaine's family does things one gift at a time, and so Ian had some time between gifts. He made it maybe half way, and was so tired, that we let him take a nap in his crib. This happened at 10:30, two hours earlier than normal. The rest of us finished up while he slept, then he finished later after he awoke.

Much of the rest of the time has been a blur. Recently, we had a visit with the specialist nearby in Roanoke, Va. All was well, and Ian is still doing remarkably well. Then we got the lab results. His PELD has climbed from 19 to 27, which is a bit odd. His clot time (for his blood) was way up, meaning a Vitamin K deficiency. So, today, we went for a Vitamin K shot and he'll have labs again tomorrow to see what that does. I spoke with the transplant center yesterday, and they said with a 27, keep bags packed (which we already do) and make sure we have spare batteries for the pager on hand (which we do). Adrenaline has climbed a bit since that call...

Elaine and I have both spent much time in prayer asking why this is happening to us (which we look forward to learning someday), but mostly we are grateful for our little son and the joy he brings us.

2006-12-19T09:19:00.000-05:00

A little late posting the new information on Ian. We had the transplant center visit two weeks ago (almost). My wife fell ill, so it was just Ian and me going to Atlanta. He did very well on the flight down and all the running about. We borrowed my brother-in-law's little pickup to run to the hospital, and Ian got a real kick out of being able to see so well. Normally, he is in the back seat and cannot see much of anything, so to be able to see right out onto the road, he giggled for about 10 minutes before he finally fell asleep for the rest of the drive. It was very entertaining for me, as well, to see him so tickled about something so simple. The doctors are very pleased with his progress and development, and they were excited to see him walking around. They took labs and Ian's PELD works out to about a 19. That is a 5 point increase over last time, but it always goes up a bit at the labs in Atlanta. We'll visit Dr. Cordle in January and have labs drawn again, so we'll see what they are then.

We left the transplant center at 3:30 and drove like mad back to the airport trying to catch a 4:58 flight. Problem: anytime after 3:00 is rush hour in Atlanta. We didn't make it. This turned out to be a good thing because Ian had had an issue with his diaper, and that would have been a very unpleasant flight for all (him, me, and the other passengers). The whole problem started earlier, though, when we landed. AFter we touched down in Atlanta, Ian and I found a restroom and changed his diaper. Then we went to the baggage claim to get his carseat, which I had checked. They had told us that all items would be at carousel two. I got there, looked around, didn't see anything, so I asked an employee if his carseat should be there and provided my flight number. He said yes, and it just must not be out yet. Twenty minutes go by. No carseat. I looked to the far end of the hall, and see something that looks ironically like his carseat, so we took a little walk. Sure enough, it was down there. This led to us being late getting to the hospital, and then late leaving, and thus missing the ideal flight. A tip: oversize items come to a different carousel. Why didn't this other employee know this?

My sister-in-law came and picked us up so we didn't have to wait at the airport, which was very nice. After a few hours in Newnan, she returned Ian and me to the airport, and we made the 9:50 flight easily. Ian was exhausted by this point, having slept a broken 45 minutes total that day (he is accustomed to a couple hours). While taxiing for take-off, he fell asleep on my lap and did not wake up until we were getting off the plane in Roanoke. He was probably a better traveller than I was.

2006-11-30T15:59:00.000-05:00

Last night when I returned home from work, I had a most exciting surprise waiting for me. My wife was quick to get Ian to show off his newest skill... walking!!!! At last!!! 17 months and 2 days old! He had taken a few independent steps before, but had never put it together like he did last night. Elaine and I were about five feet apart from each each other, and Ian went back and forth between us about 10 times or so. He, of course, is most pleased with himself as well, and clapped and cheered nearly as loud as we did.

This was obviously slower than the majority of children walk, but still within what is considered normal. The doctors had warned us that he might develop a little bit slower physically because of the biliary atresia, but he continues to grow and develop and make us proud parents every day. I should be able to post again next week some time after our follow up with the transplant center on Wednesday.

My question for this post: Why have my Giants not signed any free agents yet?

2006-11-02T10:00:00.000-05:00

Well, we received news last week that Ian's PELD score fell from 18 to 14, meaning he likely also fell on the "priority" list at the transplant center. Doctors have suggested to us at this point that our little family is in it for the long haul, and we could be waiting years. We are taking the positive side of this, in that Ian is doing better and developing nicely. Why not enjoy the time we have with him healthy and not inhibited by concerns about getting sick?

2006-10-19T17:37:00.000-04:00

Well, its been a full month since my original post. Not much to update on Ian. His PELD remains an 18, and he is getting so big! He is cruising on anything and everything, and will soon be walking, we hope (sort of). My dad reminds me that everyone always wants their kids to talk and walk until they do... then they just want them to sit down and be quiet! Isn't life so much fun?

Work is preparing for their ISO surveillance audit, and there are about 20 other projects ongoing at the same time. It keeps things hopping and life moving along.

We have a golf tournament scheduled for tomorrow. Why do we get so much enjoyment at a game that is so maddening?

2006-09-19T11:25:00.000-04:00

Ah! At long last, my first blog post. I set this up several weeks ago, but haven't done anything with it. Things are so chaotic with work and home that I have not had time to ponder what to put up. I have been making many trips down to Chattanooga, TN where one division is (for a few months longer) to get them ready for ISO 9000:2001 registration in November. I enjoy the occasional business trip, as it gives me a chance to get out and be somewhere different for a while. The timing, however, is not necessarily the best.

My son, Ian, is almost 15 months old now and is awaiting a liver transplant for biliary atresia, which can be found at webMD.com, for those interested. A group of friends has pulled together for us and been raising money for Ian to pay for medical bills and other associated expenses. Ian is listed for transplant at Children's Healthcare of Atlanta (CHOA), and has now been listed for nearly a year. His condition with his current liver is stable, and he is the happiest little boy, which helps my wife, Elaine, and I cope better. I intend to post details here when we do finally get the call to go for the transplant regarding progress, Ian's status, etc.

In the meantime, the band who has caught my attention most lately is Shinedown. They have triggered my thought to ponder for this post: Why is the hardest question to answer why?