Wow, it has been nearly three weeks since we last updated. It has been pretty busy and we are still focusing on the major decision about Preschool in addition to transitioning to a different therapy program since he ages out of early intervention on May 1st. We have also had some medical changes that have led us to the all too familiar corner trying to determine if the chicken or the egg came first. Several issues presenting after a few changes that all could be contributing factors.
To condense the insanity we will cover this like the end of a Scooby Doo episode, where they recap the clues that ultimately led them to capturing the bad guy. The vancomycin is done last week which was treating the chronic c-diff. We completed the Diflucan course (been on since Dec.) about 2 weeks ago which was treating the feeding issues (retching/vomiting at end of feeds). The FA doctors noticed his liver levels trending up. It is believed to be caused by the diflucan and they order extra daily fluid, via GI. It took GI a week to finally respond despite push from both us and the FA team. An appropriate level of extra daily fluid is now being given. Urology also decided to switch from the furindantin to Bactrim for his UTI prophylaxis. Despite Bactrim being a marrow suppressant, the FA doctors are alright with the use for now and will monitor his counts. All of this takes place in about a 2 week period. Then the problems start occurring. Typically, after 48-72 hours the c-diff returns beginning with increased stool output and diarrhea so we are always watching for that. Bactrim is rough on the stomach so when we see the “1st signs” of c-diff we hold off because it is probably the Bactrim causing this. Elias has trouble with fluids going in rapidly, it makes his retch and vomit, but so does this specific yeast-type colonization (inside no doubt so you can’t see for sure). Which was what the diflucan treats. We are pushing an extra 30 ml of fluid at the end of each feed, diflucan has been off for 2 weeks – now he starts retching and vomiting again with his feeds. could be the fluid, could be he needs diflucan. Are you beginning to see where this is going? All the changes so close together resurfacing symptoms we were just treating, but could also be caused by the new additions has us pulling our hair out to determine what came first the chicken or the egg. Elias has been off the past two weeks with extreme highs and lows in his energy. At first we contributed to the adjustment of the new antibiotic. After a week though this should be improving. If GI would have contacted us in a more timely manner everything would not have been happening at once and the picture might be a little clearer, but now we are having to go through this trial and error phase that will take us months to work through before we are able to determine the root of the problem and fix it. The feeding issue started in July, but it too until December before treatment began, because you could blame the symptoms on other things. Oh what fun it can be.
As we said Elias has had highs and lows. He just doesn’t have much energy, it goes quickly and at times during the day he just lays there without moving. Somewhat concerning of course. His Therapies the past week have all been washes because of how he has felt. He has been grouchy at time – understandably and his stomach is bothering him we are pretty certain. Yesterday we noticed his colostomy stoma is inflamed – likely due to the increased diarrhea. We have posted a few videos and some photos during his good moments. Other than all those things going on Elias seems to be doing well. We will be having another round of surgeries soon. We are gathering all the interested parties to coordinate a date.
The only other thing going on has been the transition from early intervention into other therapy systems and the decision for pre-school which Elias is slated to start this year. We have a meeting next week with the schools and are hoping to get some clarity on some concerns we have based on information presented to us. We will update on this more next week. There are too many variables at this point and Elias would be “home-bound” and not approved by his doctors to attend school. This may very well be the way it is for years. We are looking forward to this meeting and getting answers from the people directly involved rather than indirectly, which is how we have received information up to now.