We've had a rough time since last time I posted. The original pull-thru surgery on the 17th went well, although Landon ended up losing 2/3 of his colon. He only has about a foot left. What is left of his colon looks very different than a typical person's, which looks like an upside down horse-shoe. He only has one side of that horse-shoe like shape left, and so it goes slightly up and the remainder is stretched to his rectum. His bowel function returned earlier than expected and everything related to the surgery itself went super smoothly.
Unfortunately, we ran into some complications. The first complication was respiratory- both of his lungs partially collapsed at the bottoms. No big deal, though, they started having respiratory therapy come and work with him 4x per day and it improved almost immediately. Within a few days it was resolved.
The second, and biggest complication, was that he spiked a high fever on day 2 post-op (Nov. 19th.) They started him on a broad-spectrum antibiotic after they took cultures. Cultures all came back fine, although it was clear Landon wasn't recovering like he should be. He continued on antibiotics but stayed sick with little to no improvement. They ordered a CT scan with contrast, which showed that he had a large abdominal abscess. We thought this was great news to find out the source of the problem, and it sounded like a simple solution- they wanted to go in the next morning and surgically place a drain to drain the abscess. Sounds simple enough, right? Wrong. Once they got in there, it was multiple abscesses close together, rather than a single abscess. The interventional radiologist placed the drain in the largest one, but didn't sound like he had high hopes of it working. And it didn't..
Three days after the drain was placed, it was clear that Landon was taking a rapid downward spiral. He was up screaming "oww" all night long, which should not have been the case 11 days post-op. They had to order Oxycodone for his pain, meanwhile his fever spiked to above 103 and his heartrate was staying in the 190s. He started looking very sick late Friday night (the 28th) and ended up going back into emergency surgery to re-open the abdomen, remove abscesses, and flush out the abdominal cavity. Emergency surgery was a little scary, but he got through it okay. Before he went back, we signed consent for an ileostomy to be placed, should it need to be. If the colon was injured or became injured while removing the abscesses, he would have had to have an ileostomy to give what's left of his colon time to heal. Fortunately, he had a successful surgery, although it ended up being the largest incision that he has had to have for a surgery so far.
We are almost 48 hours past the end of his emergency surgery Friday night. He seems to be recovering well, and his bowel function is already back again. He gets to drink tomorrow, and if all goes well, eat on Tuesday. We are hoping and praying that he heals and fully recovers as smoothly as possible, now that our one planned surgery turned into 3 within 2 weeks.
Please keep Landon in your thoughts and prayers! Like I mentioned before, the actual pull-thru surgery looks very promising so far. We are anxious to see how things go over the next few months, and if and when the Botox that was done along with the surgery wears off, if it makes a big difference and needs to be re-done. We are still in the hospital, starting week 3. We're hoping to get out of here by the end of the week if things keep moving in the right direction. I will update soon on how things go.
Sunday, November 30, 2014
Sunday, November 16, 2014
The day before surgery- and many more updates!
Hello everyone! I have been pathetic at updating on here, but I promise I have had a good reason! We are (for) now a family of 7! In addition to our perfect little princess that is still with us, we became even crazier in early August and took a newborn baby girl. It was not the ideal time, as the call came 4 days before I went back to work for this school year, but our sweet baby girl has been worth every bit of the chaos that it was at first. After the initial adjustment period, we have a nice routine in place and we are all doing great. People always look at us like we're crazy when we're out at public places, but we almost always get compliments on how well behaved all our children are. Now for a long Landon update..
Landon has continued to do awesome since his colostomy re-do late last December, and then the hiccup hospital admission in early January with the round of Cipro. He has grown and developed like a champ! His language is continuing to grow exponentially, although it is still a bit delayed. He keeps up with his brothers and for-now (maybe forever?) sister. He loves our new baby girl. It has brought out an amazing, nurturing side of him. He loves to help with her any way that he can. He always plays with her and gives her kisses.
Last time I updated, the plan was to wait a long time before reversing his colostomy again and doing the re-do pull-thru. AND to follow Dr. Levitt to Nationwide Children's hospital in Columbus, Ohio when we eventually did it. Here are some major factors that changed that decision:
-The colostomy prolapsing constantly. The first time it did it, I freaked out and called the hospital. It was scary having several inches of intestines hanging out of my child's abdomen. It turned out to be okay, but it is a nuisance and it continued to happen all the time. It made us seriously think about the reality of the longer drive to Columbus in the event of an urgent medical situation.
-Insurance. We are blessed to have amazing insurance through John's work. We have already met our maximum out of pocket for the year, and doing the surgery this calendar year will save us thousands of dollars. As much as money shouldn't be a factor, having a child with a rare disease drains you financially. We have also had a struggle getting full insurance coverage of Landon's colostomy supplies this time around. It's been hours on the phone with the insurance company, writing appeal letters, and many, many headaches.
-Potty-training. Landon is making good progress towards being potty-trained. Although he still goes in his pull-up, he urinates in the toilet every time we take him. With his colostomy, he almost constantly involuntarily passes gas loudly. I've been worried about this for when he starts pre-k next August. I'm worried about him getting off to a rough start socially if he has other children making fun of him. I also think that having him completely potty trained is a reasonable goal by next August, although his bowels may or may not cooperate, we can at least have a good handle on things. Doing the pull-thru now is a step in the direction of making that possible.
-Cincinnati Children's is AWESOME. (So is STL Children's, I just need to plug in!) The resources here are amazing. This is a comfortable place to stay for weeks at a time- we already know that. Going to a new hospital is scary. We know Cincinnati. We know what hotel to stay in, what there is to do here, and there are many discounts available through the hospital which make it affordable to bring our whole family and make a fun mini-vacation out of the trip when we are here for Landon to do anything outpatient.
So.... back a couple months ago I scheduled a phone appointment with Dr. Helmrath in Cincinnati. He is highly recommended, and has actually participated in Landon's care before when Dr. Levitt consulted with him. He specializes in complicated cases of Hirschsprung's disease, like Landon's. I loved him. I loved his plan. It just felt right. He felt it was better for Landon's long-term outcome to do the surgery early in his life. He wants to be super cautious and proactive about preventing enterocolitis by doing botox with the surgery, and keeping him on Rifaxamin for 3 months following the surgery. He made me feel safe about doing it now. We moved forward with scheduling, and planned it around Thanksgiving break for my job so that I'm missing less.
That leads to right now. Here we are in the hospital doing bowel prep for surgery tomorrow morning. He is having a colostomy closure/pull-thru/partial colectomy (again, they are removing a bit more.) Please keep Landon in your prayers that everything goes well, and this proves to be successful over the next few months. This has the potential to be his last surgery if it works. While we are here in the hospital I have some time on my hands where I will be able to update how things go over the next week. I will update with how surgery and recovery goes later this week.
Landon has continued to do awesome since his colostomy re-do late last December, and then the hiccup hospital admission in early January with the round of Cipro. He has grown and developed like a champ! His language is continuing to grow exponentially, although it is still a bit delayed. He keeps up with his brothers and for-now (maybe forever?) sister. He loves our new baby girl. It has brought out an amazing, nurturing side of him. He loves to help with her any way that he can. He always plays with her and gives her kisses.
Last time I updated, the plan was to wait a long time before reversing his colostomy again and doing the re-do pull-thru. AND to follow Dr. Levitt to Nationwide Children's hospital in Columbus, Ohio when we eventually did it. Here are some major factors that changed that decision:
-The colostomy prolapsing constantly. The first time it did it, I freaked out and called the hospital. It was scary having several inches of intestines hanging out of my child's abdomen. It turned out to be okay, but it is a nuisance and it continued to happen all the time. It made us seriously think about the reality of the longer drive to Columbus in the event of an urgent medical situation.
-Insurance. We are blessed to have amazing insurance through John's work. We have already met our maximum out of pocket for the year, and doing the surgery this calendar year will save us thousands of dollars. As much as money shouldn't be a factor, having a child with a rare disease drains you financially. We have also had a struggle getting full insurance coverage of Landon's colostomy supplies this time around. It's been hours on the phone with the insurance company, writing appeal letters, and many, many headaches.
-Potty-training. Landon is making good progress towards being potty-trained. Although he still goes in his pull-up, he urinates in the toilet every time we take him. With his colostomy, he almost constantly involuntarily passes gas loudly. I've been worried about this for when he starts pre-k next August. I'm worried about him getting off to a rough start socially if he has other children making fun of him. I also think that having him completely potty trained is a reasonable goal by next August, although his bowels may or may not cooperate, we can at least have a good handle on things. Doing the pull-thru now is a step in the direction of making that possible.
-Cincinnati Children's is AWESOME. (So is STL Children's, I just need to plug in!) The resources here are amazing. This is a comfortable place to stay for weeks at a time- we already know that. Going to a new hospital is scary. We know Cincinnati. We know what hotel to stay in, what there is to do here, and there are many discounts available through the hospital which make it affordable to bring our whole family and make a fun mini-vacation out of the trip when we are here for Landon to do anything outpatient.
So.... back a couple months ago I scheduled a phone appointment with Dr. Helmrath in Cincinnati. He is highly recommended, and has actually participated in Landon's care before when Dr. Levitt consulted with him. He specializes in complicated cases of Hirschsprung's disease, like Landon's. I loved him. I loved his plan. It just felt right. He felt it was better for Landon's long-term outcome to do the surgery early in his life. He wants to be super cautious and proactive about preventing enterocolitis by doing botox with the surgery, and keeping him on Rifaxamin for 3 months following the surgery. He made me feel safe about doing it now. We moved forward with scheduling, and planned it around Thanksgiving break for my job so that I'm missing less.
That leads to right now. Here we are in the hospital doing bowel prep for surgery tomorrow morning. He is having a colostomy closure/pull-thru/partial colectomy (again, they are removing a bit more.) Please keep Landon in your prayers that everything goes well, and this proves to be successful over the next few months. This has the potential to be his last surgery if it works. While we are here in the hospital I have some time on my hands where I will be able to update how things go over the next week. I will update with how surgery and recovery goes later this week.
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