Wednesday Morning, 9/26/07

It's amazing what a difference a couple of days can make. Last weekend was a little depressing. Nathan was having problems with his ostomy bag. The nurses were having a hard time getting anything to fit him properly, which resulted in leaks and was causing his skin to get irritated. On top of that, he was spitting up quite a bit, which was also irritating his throat and skin. They don't have anyone on staff for the weekends that specializes in ostomies for kids, so we had to wait for Monday.

They still had some difficulties getting an ostomy bag fitting well, even through Tuesday, but it seems to be better now. He isn't leaking much, and they're making sure to empty it more frequently. His intestines seem to be working great after this surgery. His weaning schedule is almost done, and his spirits have been up (probably since I haven't been around to hassle him). Christa has been working with the physical therapist, and they've been able to get Nathan standing up and walking around with assistance. She plans to take him for a walk down the hall today.

They're going to try and replace his pic line today. He'll be going down to the Radiology department for the procedure. If that doesn't work, he might have to go to the Operating Room. We're optimistic that everything will go fine in Radiology, but this experience has taught us that bad things often follow good times, so we're patient.

Some very cool news from yesterday. Christa IM'd me (instant message) around 3:30 in the afternoon to ask me if I've ever heard of "Bryan Roberts". Admittedly, I'm not near the MLB fan that I used to be, but I've been to an Orioles game this year and drive right by Camden Yards every time I go to the hospital. So I knew immediately that she was talking about the O's 2nd baseman, Brian Roberts (who happens to be having another good year at the plate). It turns out that Brian stopped by the hospital to see the kids in the Children's Hospital. He visited Nathan, bringing a t-shirt, autograph, an O's cap, and a toy car. Nathan's really too young to know who he is, but I hear that Brian was able to get a smile out of him. According to Christa, Brian had heart surgery when he was five years old. I don't know if he does this because a) he's a great guy, b) he can sympathize with the kids due to his own past, or c) the O's marketing department made him. Either way, it made my day. I'm not an O's fan, but I'll never forget this gesture. If Brian or anyone from the O's staff ever gets to read this, please know that this is a wonderful thing you do... not just for the kids, but for the parents too. Thank you very much for the time that Brian got to spend with our son.

And here I am, wiping away the tears. I'm such a wuss. :)

Sunday Morning, 9/23/07

The last few days have been mostly uneventful. Nathan has continued to recover slowly. His stomas are working great; the one leading from his stomach is passing his fluids perfectly, while the one leading to the closed end isn't really doing anything, but has a very healthy color. He's been vomiting clear liquid (no bile) the last couple of days. This is normal, but makes him uncomfortable. That, along with the hourly vitals checks, mean he doesn't get much good sleep.

I said that it's been uneventful, but that's not completely true. Yesterday was a little weird. His pic(?) line came out yesterday. This is the line that they use for his TPN and lipids, as well as for drawing blood. They don't have anyone available over the weekend to replace it, so they had to insert an IV in his other arm. A pediatric specialist will be available tomorrow to fix him up with a new pic line.

We had our own version of the Jerry Springer show yesterday afternoon. The parents of the child next door were fighting, and they actually had to call up hospital security to escort them out. The child was due to be released anyways, so it's not like they were in danger.

Anyways, things are proceeding slowly. We have no updates on a timetable for his release or the next surgery. I'm hanging out today while Christa takes Alyssa to some sort of butterfly event. Seriously. All I know is that they're releasing butterflies or something. I'm sure it's a great time... if you're a girl. :)

Boys day out at the hospital...

Thursday Morning, 9/20/07

Christa arrived at the hospital early this morning. Nathan's swelling has not increased since yesterday. He had a minor fever last night which was relieved with Tylenol. They are still planning to extubate him sometime this morning. The surgeon visited already and commented on how great Nathan looks and how well he's doing. They're going to put an ostomy bag over the two stomas today.

That's all for now...

Wednesday Evening, 9/19/07

The nurses are focused on controlling Nathan's pain levels today. He seems to be doing well, although I noticed some swelling in his face and neck by early afternoon. The rest of his body looks fine, and his stomas appear healthy. I left around 3:30pm to pick up Alyssa from daycare. Shortly thereafter, Christa emailed me to let me know that his stoma is doing very well. The one attached to the section coming from his stomach is already leaking fluid. This is a very good sign that things are starting to work properly.

P.S. I added a post below with an image from yesterday (pre-surgery).

Wednesday Morning, 9/19/07

Nathan is surprisingly alert this morning. He's lying in bed right now eyes partly open, holding Christa's hands and watching a movie on her laptop. He even waved to me once, and is mouthing words and able to respond with nodding and shaking his head. I wouldn't normally want to expose him to this much stimuli this soon after surgery, but watching movies tends to make him sleepy. His vitals are good, with a moderately high heart rate. Everything else looks good, including his breathing. There's a chance he will be extubated (have the breathing tube removed) sometime tomorrow. Within a few days after that (or sooner), he could be back to one of the regular wings.

It's hard to assimilate that Nathan really is in better shape than yesterday morning, when he was sitting up playing with toys and chatting. But really, he is. The surgeon did a lot of work to repair "adhesions" (scar tissue, I think) and jumbled-up intestines. It was a lot more work than any of us expected still needed to be done, but we're looking at it pragmatically; we're just grateful that they were able to get it all repaired (sans reconnection).

There are going to be quite a few adjustments for our family in the near future. We're pulling Nathan out of daycare; they've been holding his spot at a reduced tuitiion rate for the last 6 weeks. I think they're going to continue to hold his spot through his security deposit, but we won't have to pay his weekly discounted rate. Alyssa will still be there, so hopefully they'll be back together at daycare before too long.

All in all, I'm not too depressed. We're not where we hoped to be, but it could definitely be worse. It helps to keep an even keel throughout this experience. I took some pictures of Nathan when he was playing on the mat yesterday morning. I'll try to put something up this afternoon as time permits.