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.
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