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.
Tuesday, September 18, 2007
Monday, September 17, 2007
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, September 12, 2007
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.
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, September 7, 2007
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.
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, September 4, 2007
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.
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.
Subscribe to:
Posts (Atom)
