Friday Evening, 10/5/2007

Nathan has walked the hallways twice today without any assistance. Christa took him down the B wing from his room, through the lobby, into the C wing and back. I arrived while they were gone; it was quite a surprise to see him walking back in, holding nothing but a leash attached to a rolling dinosaur toy. It really tuckered him out though, he fell asleep on my lap for a couple hours afterwards.

I took him back out for more walking this evening, through the A and C wings. He did great and got plenty of attention from the nurses. We're back in the room again watching Kiki's Delivery Service. I also emptied his ostomy bag and gave him a Lovenox shot tonight. Now nobody (Christa) can accuse me of never having done either. ;-)

One item of disappointment... they've been giving Nathan small amounts of formula, but his body hasn't been processing much, if any. He's passing basically everything he's taking in, which means he's going to have to rely on TPN for his nutrition. We were really hoping he'd be able to drink more formula, but it's not looking like it's going to happen. The surgeon stopped in today and mentioned that worst case, they would do his next surgery on November 20. But that's only if they must perform surgery early... they would rather hold off longer to let his intestines heal as much as possible.

The holiday seasons are going to be difficult this year. Oh well, gotta keep on keepin' on.

Thursday Morning, 10/4/2007

The allergist stopped by yesterday to test Nathan for allergies related to his hives/swelling last week. Nothing showed any reaction except for histamines (the test control substance). There is a chance that the Zantac in his TPNs are affecting the test results, but they feel comfortable substituting safflower oil for his lipids. They're going to start it soon, no schedule yet.

Christa has been working with Nathan to slowly build up his strength and maneuverability. He's able to walk short distances on his own, and has been getting plenty of "exercise". We expect he'll be home in a couple weeks, but nothing is certain yet. He still needs to start absorbing more nuitrition and put on some weight.

I grabbed a few pictures with my iPhone over the last week. Enjoy.

Tuesday Morning, 10/2/2007

Sorry for the lack of updates recently. If you've been following closely, you probably know this means things are moving forward in a positive manner, slowly. Updates are much more frequent when there is bad news and I need to get stuff off my chest.

I started a new project at a customer site last week, where I have no access to the Internet. This means that I have less time to post blog entries, since I'm at work all day and with Nathan in the evening. I appreciate your patience while I try to bring you more news on his recovery.

In short, not much has changed over the last week. He's walking with assistance and generally in a good mood. His favorite movie seems to be Kiki's Delivery Service. If you like other movies by Miyazaki (Spirited Away, Princess Mononoke, Howl's Moving Castle), you'll definitely like this one. The plot is less heavy than some of his other stories, and is more of a young child's anime. Even though it seems like a girl's movie (about a young witch finding her purpose), it's really good for all ages, boy or girl.

The doctors are hoping Nathan can be home in a couple weeks. No promises, it all depends on Nathan. Gotta run.

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...