Saturday, November 23, 2013

Hoden's Health Update Part 2: The Good News

After realizing that Hoden really should not have to be dealing with me changing his bum so many times a day. We decided to take him back to his surgeon to see how we can help him long term. Our surgeon reviewed his records and decided that Hoden definitely has no compounding conditions. No Hirschsprungs disease or anything like that. He explained that because Hoden was born with a very tiny rectum in addition to it not connecting to the colon, he essentially is more like Imperforate Anus patients and they too have problems for the first few years post pull through.

The surgeon then ordered an x-ray of Hoden's bowels and since that was done in office he reviewed them right away. We were incredibly shocked to hear that Hoden even though he had pooped 20 times only two days before was massively and concerning constipated. He explained that Hoden was suffering from pseudo incontinence where bowel blockages cause alternating constipation and diarrhea. Which explained perfectly why he had been having so many bowel movements for days at time then would be constipated for a few, then normal and then back to the tons of bowel movements all over again.

The surgeon  went on to explain that Hoden's next health goal is to get on a bowel schedule so that he only has 1-2 bowel movements a day. It was so relieving to hear that. We went home with an incredible amount of hope. We were able to start him on a laxative that night.

TMI warning:
Not knowing what to expect in the morning we put Hoden in a disposable with a cloth diaper cover on top (he sometimes sleeps in disposables if we have been out and about the night before as his overnight diapers are pretty big for a diaper bag). Boy was it the best call ever. That poor diaper did not know what had happened. It would have been a blow out for sure without that cover's tight elastic. It was obvious that he truly had been "backed up" for quite awhile.

Even while changing this epic diaper of all diapers Hoden was the happiest we have ever seen him in his life. He was literally bouncing of the walls. He was giggling, laughing and dancing around. He must have felt so much better. I felt so relieved as his mom to know that he wasn't uncomfortable anymore. It was so relieving to know that we were no longer going to have to deal with constant diaper changes and rashes.

Long term prognosis wise he may have to continue with a type of bowel management program but supposedly by potty training age he should be able to achieve full bowel control. Knowing that this is a short term problem is such an incredible blessing. Thank you all so much for your support.

Saturday, November 9, 2013

Hoden's Health Update

I had the full intention of sitting down and catching up on blogging about our cruise, halloween and other fun things but just can seem to do it. My mind keeps drifting off to the adorable Hoden and everything we have gone through with him. He is growing like a weed and is ahead in every physical milestone and according to Dr.'s he is incredibly healthy. For all that we are indescribably thankful. Our stint in the NICU and the one time we had to take him up to Primary Children's hospital certainly helped us be fully aware of just how bad things could actually be.

However, for Hoden "healthy" is a little different than most kiddos. At birth he was deemed perfectly healthy. Nothing was amiss that any doctor could see. He nursed like a champ right after birth then fell asleep and cuddled like the perfect newborn should. Quickly he went from perfect to needing emergency surgery to attach his colon to his bowels, which failed and he ended up with a colostomy. Once again he was back to "healthy" and aside from the super scary aspect of needing the colostomy sight redone because the stoma (where the poop comes out) had died, we were in clear.  We changed his colostomy bags instead of diapers but Hoden was happy and healthy and we couldn't ask for more. The only time is stressed us out was when we didn't know how to put them on, when he had the flu (although any kid having the stomach flu at 4 months is scary, and when the bags stopped working.  But other than that we were golden. Nobody believed us when we told them how well every thing was going they though we must just be putting on a face.

Even when he had his take down surgery to get him pooping like normal we handled it with grace. The surgery went well and he went home in a miraculous 4 days. Hoden also never experienced any of the dangerous complications like infections or bowel blockage. He simply pooped all the time but we had been warned and we were prepared. We changed his diaper all the time, kept it slathered in creams and ointments and kept on going never letting it get us down.

That was in early March of this year and since then Hoden appeared to be close to a normal kiddo only have a few bowel movements a day. We adjusted to this "new normal" and it was such a relief not to have to change diapers 24/7 and deal with bleeding rashes. But it didn't last. . . As always Hoden is healthy but not quite normal even by medical standards.  Just like his Atresia (where his colon stopped connecting to anything) was in an incredibly rare location, his intestines don't have enough nerve cells to be considered normal but don't such a lack of them to be considered as having Hirsprungs disease (a condition affecting the functioning of nerve cells in the intestines).

So Hoden is somewhere between normal and having a complex medical condition and its getting frustrating. While we are so happy that he isn't actually "sick" nobody knows why our little boy is still POOPING UP TO 20 TIMES A DAY sometimes for days at a time. But he doesn't act sick and is gaining weight well and so the Dr's are not concerned and really have not reason to be. While we are happy that nothing is dangerously wrong it is still really really annoying to CHANGE 20 FREAKING DIAPERS on some days :(

I feel like my happy face I have worn since his birth is wearing off and I find myself crying about it from time to time. I am so tired of wiping bleeding rashes while my son screams in pain at the top of his lungs. My heart breaks for him. I want to know if he really is just taking forever to heal from surgery or if something else really is wrong with him long term. I wish that I could just magically make him normal or heck I sometimes just wish that he had a clear diagnosis of something wrong just so we could blame everything on it or better know what to do. In the meantime we are stuck in limbo and I need to remind myself that being in limbo with a kid that is happy and "healthy" is still something to be thankful for, and we are. We are so unbelievably thankful for our beautiful, smart, funny, adventurous, silly and adorable baby Hoden.