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!

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...

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.

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.

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.

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...

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?

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.

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.

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...

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.

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...

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!

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.

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. :)

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...

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.