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.

Tuesday Evening, 9/18/07

Timeline:
11:30am - Nathan moves to surgery pre-op area
12:30pm - Moved to operating room
2:00pm - Surgery begins
7:30pm - Surgery finishes, Nathan is moved to PICU

Details:
The surgeon came out to talk with us shortly after finishing up. He wasn't able to reattach Nathan's bowels, but that was really a best-case scenario. There was quite a bit of scar tissue on Nathan's intestines, including a large jumble of bowel that needed to be unwrapped and inspected. A small hole was found and repaired near the area where his abdomen catheter was inserted. Small portions of dead intestine were removed at the ostomy and somewhere around 65cm down from his stomach. Both ends of the intestine at this split were finished off with new ostomies (yes, two of them).

Summary:
This was neither a best- nor worst-case scenario. Nathan has enough healthy intestine that he can live a healthy, normal life if he fully recovers. He will have another surgery to remove the ostomies and reconnect everything. There's no timetable on his recovery right now, but it's going to take a while. He's going to be on the TPN and lipids for months to come. They are hoping to get him on some nutrition before long for his intestines and to counter the effects of TPN on his kidneys.

That's about all I have for this evening. I'll add more updates in the days to come as I have time to reflect on anything.

Tuesday Afternoon, 9/18/07

A quick picture of Nathan taken with my phone. This was Tuesday morning before the surgery.

Christa is sitting behind him, one of the physical therapists is to the right.

Tuesday Morning 9/18/07

Today is the big day. We've been impatient waiting for this, and now that it's arrived I'm very nervous. Last night I could feel my defensive mechanisms kick in; I start to prepare for the worst, so that if anything goes wrong I'm ready for it. I even woke to a bad dream this morning... the hospital had called to tell me the surgeon had just died. It seemed so real.

Nathan had another great day yesterday. He was able to stand up by himself in the bed for almost 20 minutes. He's very active now, and he'll need that strength for this surgery. Christa said he had a lot of visitors from the hospital all day... doctors, surgeons, nurses... seemingly everyone that has cared for him during his stay. He has really touched a lot of people's lives. I feel very fortunate that he's been cared for so well. I've seen some bad hospitals before; it's nice to see what a really good hospital is capable of.

The operation is expected to start around 1pm and last anywhere from 2 to 8 hours. I guess it just depends on what they find and can get accomplished. They seem to be optimistic that any blockage can be easily removed and that his ostomy can be reversed (i.e., put his intestines back together). There is a concern about his lungs. It's very important that Nathan is able to function without the breathing tube after his surgery. He was on it way too long after his last surgery, and they want to avoid any further possible damage to his lungs.

If all goes well, I should be reporting late tonight that the surgery went well and he will be going home in a week or so. I don't want to get ahead of myself, so I ask for everyone to please follow the blog and keep phone calls to a minimum. Please do not call our cell phones or the house. We'll update the blog and contact our close family once we have information back from the surgery team.

Everyone buckle in, here we go.

Monday Morning, 9/17/07

Nathan had a good weekend. A couple times he was able to stand in his bed, holding onto the guards (it's basically a large crib). He was very active, getting up on his knees at times. His surgery is tomorrow at 1pm. We don't know what will get done, other than the initial exploratory attempts. We're hopeful that the surgeons are able to reconnect everything so he could be going home soon.

Wednesday Evening, 9/12/07

Thanks to everyone who has been so patient throughout this ordeal. I should have updated the blog sooner, but it's been exhausting keeping up with work and trips to the hospital. I should also mention that Christa has really been a trooper all along. She's been getting up early every morning, getting Alyssa ready and taking her to daycare, and then driving to the hospital and helping get Nathan stronger each day. I know it's important for me to keep a paycheck coming in (especially since it's the only one we have right now), but without her support I don't know what we'd all do.

Nathan's surgery was pushed back another week. It is tentatively scheduled for next Tuesday. The surgeon wants Nathan as strong as possible before he goes back into the OR. I think this will help him towards a faster recovery next time around.

His progress has been slow and steady. He has started to kneel up on his own, and has also started to try and stand. He isn't able to put much weight on his lower legs, but this will come in time. The physical therapist is trying to get Nathan to kneel, then crawl, then walk. He's doing great, but it takes a lot of will and determination (Christa) to get him doing the right things sometimes.

Friday Morning, 9/7/07

Nathan was lethargic on Wednesday. I don't recall if it was a weaning day for him, so I'm not sure if it was due to overexertion on Tuesday or something related to the sedatives. Either way, he slept most of the day and wasn't very interested in therapy or other activities. I came to visit him that evening and he slept the entire time.

Yesterday was a little better. He did his therapy, which now includes playing with toys on a small table. This allows him to stand and play, while giving him something to hold onto. He's had a minor fever off-and-on for a couple days. They took X-rays of his stomach to get a better look at his internals and to help prepare for the upcoming surgery. It sounds like they're planning on taking him into surgery next Tuesday.

We're still waiting on the official results of the "upper GI" X-ray from his surgeon(s). The initial feedback we've received from other doctors is that his intestines and chest look good. I was with him for a few hours last night. He was very warm, peaking with a fever of 102.7. They gave him tylenol, which brought his fever down to 100 degrees before I left for the evening.

There was a bit of good news yesterday. A fairly significant amount of fluid came out of his stoma. This suggests that his intestines are starting to function properly. I don't want to get too optimistic, at least not until the surgery is performed and they have a real idea of where his recovery stands. The fluid itself was very different than the green coming out of his NG tube or the catheter in his abdomen. This stuff had a mocha coloring to it. I mentioned to his nurse that it looked like coffee with creamer. I think I've ruined coffee for her.

Tuesday Morning, 9/4/07

My apologies for the long lapse in new posts. I'd grown weary of the daily updates, particularly with very little changes in Nathan's situation. Today is his one month "anniversary" in the hospital. Acknowledgment of this brings a heavy sense of frustration and sadness, yet there is optimism that this can't last forever.

There has been continued gradual improvement in Nathan's condition over the last week. His voice has completely returned and he's now able to sit up on his own. He usually takes a daily wagon ride over to one of the other wings, although I've yet to see this first-hand. Alyssa has visited him a few times, she's been very good to him. We brought him balloons last week which really made him smile.

We don't have a firm date on when Nathan's next surgery will be. His surgeons have prepared us to expect that it might be little more than exploratory, depending on what they find. They suspect there is some blockage caused by scar tissue. Ideally, they would be able to remove the blockage and reconnect his bowels the way nature intended. Nobody will know until they get in there and examine.

That's all for now. I'll try to keep up the frequency of updates this week. I hope everyone enjoyed their vacation weekend.