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...

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.

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?

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...

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...

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).

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!

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.

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!

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.

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.

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!

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.

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...

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.

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

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!).

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.

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.

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.

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).

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.

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...

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.

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...

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...

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.