Hi everyone! It's time for me to catch everyone up with a long overdue update. Thanks to a couple of snow days we have had this week I've been catching up on my to-do list and this was right up there at the top.
We are officially a month (plus almost a week) post-op from Landon's second colostomy surgery and everything is going really well. He finished the 10-day course of Cipro, and since then it has been smooth sailing. This is the first time in his 19 months that he has been able to experience a normal life free of antibiotics and irrigations. Plus it's wonderful for everyone else in our family because without the irrigations we have an additional 2-3 hours of time in our day. It's an extra hour to sleep in every morning (getting up at 4:45 was no good.. I am NOT a morning person) and an extra hour at night to catch up on chores or enjoy quiet time with the boys all put to bed.
The colostomy care is still a night and day difference from last time- in a good way. I'm still able to get 4 days out of each bag before we have to do a change. During the week I only let it go 3 days to reduce the risk of having a leak while I'm at work, so we only go through 2 bags in a full week. The only issue we have had so far is gas. Sometimes his bag will fill with gas every hour or two and I have to open the pouch and let the air out. I'm sure this is related to diet and could be better managed with some dietary changes if I monitored it closely enough, but I hate to place dietary restrictions on him again when for once in his life he can eat anything he wants...
Which brings me to the next piece of good news. He has turned into such a good eater since his surgery. If anyone is considering making their own baby food, I highly recommend it! It may be a coincidence, but Landon is such a good veggie eater compared to his brothers. They would only eat baby food veggies and still barely touch vegetables without bribery of some sort. I decided to make Landon's baby food to give us more options since he used to have so many dietary limitations and organic baby food is so limited in choices anyway there was next to nothing available for him to eat. Everything that he ate pureed he also accepts in its original form- peas, green beans, carrots, spinach, etc. He has been eating so well I've cut his Pediasure intake down from 3 bottles per day to 1.5. I mix it 50/50 with coconut milk. He goes on the 17th for a well check with his pediatrician and if his weight looks good we will try transitioning to 100% coconut milk. He still takes Klaire labs therbiotic complete, 2 capsules of S. Boulardaii, 3 drops of grapefruit seed extract, and a multi-vitamin with iron daily.
As some may know, Landon's surgeon, Dr. Levitt, is moving to Nationwide Children's Hospital in Columbus, Ohio in April. It's only an hour and a half further away than Cincinnati, but at 6.5 hours each way I don't see it being feasible to do one day round trips for clinic appointments and so this will be a bit of a challenge. We have the option of staying at Cincinnati Children's and going with another surgeon, and they all have a wealth of experience compared to anyone available locally (and by locally I mean St. Louis 2 hours away), but it would be hard to make it this far and then compromise after everything we have been through to get Landon to the best colorectal surgeon in the world. We are most likely only looking at one more surgery to resect another segment of his colon, and after already having 8 surgeries it makes no sense not to follow Dr. Levitt and have him do number 9.
Dr. Levitt said that we could do the second pull-thru at least 3 months after his colostomy surgery up until as late as we choose to wait. He recommended that we potty train Landon to urinate in the toilet before going in and doing the surgery, so I have started on that. I have just been putting him on the potty during diaper changes when we're home and he has already peed in the potty 3 times! I plan to wait until this summer around his second birthday when I'm home all day with him to really start hitting potty training hard. His brothers potty trained at 26 and 25 months, and so fingers crossed he will be in big boy undies when I go back to work next fall. Even though life can be very unpredictable (as we have learned the hard way numerous times!) if everything stays semi-on-track I'm looking at June of 2015 for his next surgery. That way we could avoid sending him to school with a colostomy if he starts pre-k after his third birthday.
Everything is going so well I'm in no hurry to rock the boat again, but I'm also unsure of what it would be like for him to need extra care while he was in school and how his peers would react to him being different. We have already dealt with disgusted looks from adults when I change him in public, but fortunately this has not affected him in any way. It would be a different story if he goes to school and other children are negative about it because pre-k will be his first social experience with kids his age. I don't want him to be remembered in high school as the kid that had the "poop bag" when he was young. At the same time, we finally have a working system with the colostomy diverting away from the hypertrophic segment and it is expected that removing the additional section and reconnecting will be successful. The colostomy is free-flowing, though, meaning that Landon has no control on his output- when it reaches the site it is expelled from his body. Once we reconnect to his rectum we may have to deal with his anal sphincter acting up again- he might need more Botox treatments, we might run into him voluntarily withholding or the biggest fear of them all- incontinence. With half of his colon gone once it's all said and done, obtaining bowel control won't be easy for him. The colon absorbs water (and some nutrients) from stool as it passes through, so the less you have= less water that gets absorbed= less formed your stool is. Less colon also means less tract for it to pass through which equals less warning that it is coming. If you have a total colectomy, or the entire colon removed, your stool would be the consistency of water- pure liquid. With half gone, about the best we can hope for is about a pudding consistency and we are really going to have to push the fiber to get that because right now his ostomy output is very loose. I try not to worry though, he has already shown so much strength and resilience there is no doubt that he will conquer whatever comes his way.
No comments:
Post a Comment