Friday, October 26, 2007
Tuesday, October 16, 2007
Tuesday Evening, 10/16/07
The last few days have slowly gotten better. They've managed to get an ostomy bag to stay and his skin has gotten much better. He went into the PICU yesterday while they started him on lipids again. They wanted to keep an eye on him in case he had a reaction. Everything went fine, and he's starting to cycle the times he's hooked up to TPN and lipids. Last night he was unplugged for 4 hours, tonight he's off for 6 hours. They expect him to have 8 hours off each day by the time he comes home. They've also put him on Zantac again, which has helped his stomach.
Now that he's feeling better, we've been able to get Nathan up and walking again. He's probably spending more time walking than he is sitting or lying down. He's getting around quite well. His favorite activity is to walk out to the atrium, take the glass elevator down to the ground floor, and throw coins in the water fountain. He also got to see Bailey, a friendly Dalmation that the owner brings out to the pediatric unit once in a while. He was a little shy, but went up with me to pet the dog and feed him a treat. One of the ladies from Child Life took a polaroid of him with the Bailey. Child Life is a department in the hospital that helps tend to the more personal and emotional aspects of the kids and their families. They're very nice people and have always been very helpful and caring.
The doctors told Christa today that they're shooting to have him home by next Tuesday. We were hoping for this week, but I think the whole safflower oil episode put the kibosh on those plans. We'll just be very thankful to have him home.
Now that he's feeling better, we've been able to get Nathan up and walking again. He's probably spending more time walking than he is sitting or lying down. He's getting around quite well. His favorite activity is to walk out to the atrium, take the glass elevator down to the ground floor, and throw coins in the water fountain. He also got to see Bailey, a friendly Dalmation that the owner brings out to the pediatric unit once in a while. He was a little shy, but went up with me to pet the dog and feed him a treat. One of the ladies from Child Life took a polaroid of him with the Bailey. Child Life is a department in the hospital that helps tend to the more personal and emotional aspects of the kids and their families. They're very nice people and have always been very helpful and caring.
The doctors told Christa today that they're shooting to have him home by next Tuesday. We were hoping for this week, but I think the whole safflower oil episode put the kibosh on those plans. We'll just be very thankful to have him home.
Saturday, October 13, 2007
Saturday Morning, 10/13/07
I forgot to mention last night that due to Nathan's vomiting, they re-inserted a NG tube to help pull the stuff out of his stomach. Apparently this has been helping; they said he had a very peaceful night last night, and the bag didn't leak at all. We're hoping they can remove the NG tube today. Alyssa and Christa are headed over after cheerleading practice this morning. I'll be heading over this afternoon and will stay until bedtime.
Friday, October 12, 2007
Friday Evening, 10/12/2007
The last few days have been frustrating (par for the course). Because Nathan had a reaction to some of his treatments, they discontinued lipids a while back. Unfortunately, the lipids are his only source of fats, so he hasn't been putting on any weight. They think they've isolated his reaction down to multivitamins in the original TPN, so they're going to try starting him on lipids again on Monday.
In the meantime, they got creative with replacements. One of the allergists came back with the idea of putting him on safflower oil. Not as a drip, but to be taken orally as well as topically. Yes, you read that right, they wanted to rub him down with safflower oil, expecting that some of it would absorb into his skin.
Uh...
Yeah, the idea was as stupid/bad/ridiculous as it sounds. I hate to beat up on the doctor since I know she meant well, but the whole thing borders on quackery. The oil they had Nathan swallow has made him sick for the last couple of days. He's been throwing up every hour, mostly saliva with a small amount of oil. On top of that, the oil on his skin made it even more difficult for the ostomy bag to adhere, as if we weren't having enough problems with it.
We're getting anxious with the theoretical goal of Nathan's departure from the hospital coming up next week. His surgeon has been on vacation for a week and was supposed to return on Thursday, but we haven't seen or heard from him. It just feels like everyone is disconnected. I know he's still getting great care, but it's very frustrating. Especially when we're supposedly so close to taking him home.
In the meantime, they got creative with replacements. One of the allergists came back with the idea of putting him on safflower oil. Not as a drip, but to be taken orally as well as topically. Yes, you read that right, they wanted to rub him down with safflower oil, expecting that some of it would absorb into his skin.
Uh...
Yeah, the idea was as stupid/bad/ridiculous as it sounds. I hate to beat up on the doctor since I know she meant well, but the whole thing borders on quackery. The oil they had Nathan swallow has made him sick for the last couple of days. He's been throwing up every hour, mostly saliva with a small amount of oil. On top of that, the oil on his skin made it even more difficult for the ostomy bag to adhere, as if we weren't having enough problems with it.
We're getting anxious with the theoretical goal of Nathan's departure from the hospital coming up next week. His surgeon has been on vacation for a week and was supposed to return on Thursday, but we haven't seen or heard from him. It just feels like everyone is disconnected. I know he's still getting great care, but it's very frustrating. Especially when we're supposedly so close to taking him home.
Tuesday, October 9, 2007
Tuesday Morning, 10/9/2007
This whole experience has seemingly twisted the fabric of time and space. Nathan has been in the hospital for 2 months, but it feels like 10 years. We used to look forward to weekends with our little family. Now weekends just mean a lean hospital staff and long hours of enduring. Our boy is slowly getting better, but it's taking a heavy toll on the rest of us.
Like I said, he's doing well. Regardless, they've had a real problem with his ostomy bags. His stomas are arranged in such a way that small, child-sized bags won't fit, and adult bags are simply too large to adhere to his skin properly. Yesterday alone, I think they had to replace his bag four times. This is having a very bad effect, where either the adhesives pull his skin when the bags are removed, or the acidic bile eats away at his skin the rest of the time. Amazingly, he continues with high spirits. He's miserable when they're working on the bags, often times they have to hold him still. As a parent, it's very painful to watch.
We just want to come home. And yet, the ostomy bag problems loom large on the horizon. My reservoir of hope and patience is running low. I hope he's smiling when I visit tonight.
Like I said, he's doing well. Regardless, they've had a real problem with his ostomy bags. His stomas are arranged in such a way that small, child-sized bags won't fit, and adult bags are simply too large to adhere to his skin properly. Yesterday alone, I think they had to replace his bag four times. This is having a very bad effect, where either the adhesives pull his skin when the bags are removed, or the acidic bile eats away at his skin the rest of the time. Amazingly, he continues with high spirits. He's miserable when they're working on the bags, often times they have to hold him still. As a parent, it's very painful to watch.
We just want to come home. And yet, the ostomy bag problems loom large on the horizon. My reservoir of hope and patience is running low. I hope he's smiling when I visit tonight.
Friday, October 5, 2007
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, October 4, 2007
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.
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, October 2, 2007
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.
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.
Subscribe to:
Posts (Atom)
