Nathan's recovery has been slow and steady. He moved from the ICU to a room in the IMC, and has since been moved to a "regular" room on the pediatric floor. The nurses are back to flirting with him, and he's just as ornery as usual. They turned off his fentanol drip a few days ago, giving him morphine as needed. His pain levels seem to be higher than the last surgery, but he also had a lot more work done to him this time around.
It is so nice not having to worry about ostomy bags anymore. His skin is in good shape, even the incision is healing well. I don't know if he'll be home for Christmas, but at least we can imagine closure in the not-too-distant future.
Tuesday, November 27, 2007
Friday, November 23, 2007
Friday Afternoon, 11/23/07
Nathan's recovery has been pretty smooth so far. They extabated him last night. He experienced some swelling and discomfort in his throat from the breathing tube, which is normal. They've had him on a nebulizer to help with this. Other than that, everything else is fine. It's awesome not having to deal with the ostomy bag changings or leaks.
Tuesday, November 20, 2007
Tuesday Post-Op, 11/20/07
The surgeon finally came up around 20 minutes ago. It was a very long surgery but the results were positive. They ended up reconnecting his intestines in 4 different spots, with some additional minor repairs and cleanup of scar tissue. Nathan will remain on the breathing tube for a couple days, a G tube for feeding, a catheter in his abdomen in case of leaking, and the broviac (central line) he already had, for nutrition and fluids. The incision was stapled up due to the possibility for infection, with the stomas left open and packed (with gauze) to allow them to heal properly.
Christa and I are in the waiting room now, waiting for them to get him situated in the PICU. We'll be heading home once we have a chance to go in and see him. We're hoping to have him home by Christmas, but there's no guarantees. As usual, I'll try to post updates over the next few days as he comes out of sedation and is extabated.
Christa and I are in the waiting room now, waiting for them to get him situated in the PICU. We'll be heading home once we have a chance to go in and see him. We're hoping to have him home by Christmas, but there's no guarantees. As usual, I'll try to post updates over the next few days as he comes out of sedation and is extabated.
Tuesday Op-Update, 11/20/07
We've gotten a few small updates from the hospital staff. A couple hours ago one of the nurses called my cell to let me know that the surgeon incised Nathan around 1:40pm and that he was stable. About 30 minutes ago, the anesthesiologist stopped by to let us know that they had to leave the breathing tube in Nathan, but that everything else was proceeding fine and he was stable. A few minutes ago, a doctor came by and told us that Nathan was doing well. The good news is that it's official; he won't require an ostomy going forward (there was still a small possibility). It also sounds like they had to remove very little of his remaining intestines and that things look positive for a full recovery. He also said that Nathan would still be in surgery for another 3 hours, so we've got a ways to go yet.
Tuesday Pre-Op, 11/20/07
We just got back to Nathan's room after taking him to the pre-operating rooms. It was very uneventful, he was in a good mood. The anesthesiologist did her job very quickly, and off he went. The surgeon told us to expect it will take 6-8 hours. They're probably going to reconnect up to 3 sections and insert a G tube (used to feed directly to the stomach). In a best-case scenario, he could come out of surgery without the breathing tube, but I wouldn't expect it.
Going to grab some lunch, gonna be a long day.
Going to grab some lunch, gonna be a long day.
Monday, November 19, 2007
Monday Evening, 11/19/07
It's been a while since I updated the blog, but the story has been the same. A leaking ostomy bag here, an allergic reaction there, and a very long wait until his next surgery. Wash, rinse, repeat. Finally, we've reached the eve of his last surgery (we hope). Nathan will be going back into the operating room tomorrow to have his intestines reattached and his ostomy removed. With the stomas and ostomy gone, his skin can begin to heal. And with an intact intestine, hopefully he can start to absorb his multivitamins.
For what it's worth, his spirits have remained high. He wants to walk and play whenever his condition will allow. The only thing holding him back has been the bag. He is very chatty with the staff and enjoys spending time with his sister playing games and watching movies. He's even been known to run after her (more of a fast shuffle) when he gets really excited. Everyone in the pediatric hospital is very familiar with Nathan and completely adore him. His chubby little cheeks (due to the extra IV fluids) and long, scruffy hair just add to his appeal. It's amazing what he's been through, and I hope this next procedure starts us down the path to his full recovery.
I will try to update the blog tomorrow as the surgery happens, but there probably won't be any news until after they're done.
For what it's worth, his spirits have remained high. He wants to walk and play whenever his condition will allow. The only thing holding him back has been the bag. He is very chatty with the staff and enjoys spending time with his sister playing games and watching movies. He's even been known to run after her (more of a fast shuffle) when he gets really excited. Everyone in the pediatric hospital is very familiar with Nathan and completely adore him. His chubby little cheeks (due to the extra IV fluids) and long, scruffy hair just add to his appeal. It's amazing what he's been through, and I hope this next procedure starts us down the path to his full recovery.
I will try to update the blog tomorrow as the surgery happens, but there probably won't be any news until after they're done.
Tuesday, November 6, 2007
Tuesday Evening, 11/6/07
Nathan had another reaction to something last night. They think it's some sort of preservative in the vitamins, but there's not sure. I spent the day at the hospital today to check in on him and to speak with his doctors. He had a very good day, but it looks like he's not coming home for quite some time.
They're going to move him back to the ICU for a day to start some desensitization training (sounds like something George Bush authorized in private). The allergists think they can build up his immunity to the allergens in the vitamins. With his surgery coming up in two weeks, and these repeated allergic reactions, they simply don't feel comfortable sending him home. Adding it up, that means another two weeks waiting for surgery and another (minimum of) two weeks for post-operation recovery. This means that Nathan will be home at the earliest after four months of hospital stay.
That's all I have to say for now.
They're going to move him back to the ICU for a day to start some desensitization training (sounds like something George Bush authorized in private). The allergists think they can build up his immunity to the allergens in the vitamins. With his surgery coming up in two weeks, and these repeated allergic reactions, they simply don't feel comfortable sending him home. Adding it up, that means another two weeks waiting for surgery and another (minimum of) two weeks for post-operation recovery. This means that Nathan will be home at the earliest after four months of hospital stay.
That's all I have to say for now.
Thursday, November 1, 2007
Thursday Morning, 11/1/2007
Just a quick update to get everyone up to speed. I'll try to post more details this evening.
Nathan was released last Friday and went home with us. He was very lethargic all weekend. By Monday they recommended we bring him back to the ER at UMMS. His blood pressure was very low, heart rate was very high, and he just wanted to sleep. They admitted him and moved him up to the PICU, after taking a quick CT scan of his brain (everything appeared normal). They immediately drew labs and began to cultivate his cultures. He also began taking dopamine and norepinephrine for his blood pressure, and was put on the breathing tube late Tuesday as a precaution.
The doctors and surgeons were perplexed by his condition. He didn't have a fever, but showed the symptoms of an infection. After much research, his surgeon came back with the possibility that he's depleted of vitamins. Because of his allergic reaction after the 2nd surgery, they had discontinued multivitamins in his TPN. In its place, the nutritionist suggested vitamins by mouth. In hindsight, he's been unable to absorb most anything taken orally, so he's basically been living off of vitamin stores for the last month or so. Apparently he finally ran out and his body went into a "low gear", so to speak.
They immediately began him on thiamine and other vitamins yesterday morning and it showed very quick results. As of last night, he was extibated (removed the breathing tube) and had all fluids removed except his general IV. We watched Toy Story 2 together until he fell asleep.
I called the hospital this morning and he is doing great. They are going to remove his foley and arterial lines soon, and he's being moved to a room in the IMC (step down from the ICU, step up from the regular wings). Christa is on her way now, and I'll be going in tomorrow night to see him. I'd love to see him released tomorrow, but I suspect it may be as late as Monday. I don't think they'll release him on the weekend, and they will probably be hesitant to do it as quickly as tomorrow.
Nathan was released last Friday and went home with us. He was very lethargic all weekend. By Monday they recommended we bring him back to the ER at UMMS. His blood pressure was very low, heart rate was very high, and he just wanted to sleep. They admitted him and moved him up to the PICU, after taking a quick CT scan of his brain (everything appeared normal). They immediately drew labs and began to cultivate his cultures. He also began taking dopamine and norepinephrine for his blood pressure, and was put on the breathing tube late Tuesday as a precaution.
The doctors and surgeons were perplexed by his condition. He didn't have a fever, but showed the symptoms of an infection. After much research, his surgeon came back with the possibility that he's depleted of vitamins. Because of his allergic reaction after the 2nd surgery, they had discontinued multivitamins in his TPN. In its place, the nutritionist suggested vitamins by mouth. In hindsight, he's been unable to absorb most anything taken orally, so he's basically been living off of vitamin stores for the last month or so. Apparently he finally ran out and his body went into a "low gear", so to speak.
They immediately began him on thiamine and other vitamins yesterday morning and it showed very quick results. As of last night, he was extibated (removed the breathing tube) and had all fluids removed except his general IV. We watched Toy Story 2 together until he fell asleep.
I called the hospital this morning and he is doing great. They are going to remove his foley and arterial lines soon, and he's being moved to a room in the IMC (step down from the ICU, step up from the regular wings). Christa is on her way now, and I'll be going in tomorrow night to see him. I'd love to see him released tomorrow, but I suspect it may be as late as Monday. I don't think they'll release him on the weekend, and they will probably be hesitant to do it as quickly as tomorrow.
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