After last weeks chaos medically we have finally regrouped and are working towards a solution. Here is what we learned. The C-diff is still active so we must go back on the vancomycin for a month this time 4 times a day. Afterward we will taper or pulse dose. With the feeding issue that had disappeared returning GI wants to push the timeline up on the surgeries so he can do a scope in the O.R. and try to figure out what is going on in there. This could be as early as the end of this month.
One possibility is that Elias needs another esophageal dilatation because the stricture has tightened. It has been quite some time since his last one. There could also be a fungal/yeast colonization in his digestive tract from all the heavy and constant antibiotics Elias has been on through his brief life. In the meantime we have also added Zofran to the growing list of medications. Zofran is used to prevent nausea and vomiting caused by cancer chemotherapy, radiation therapy and surgery. it is in a class of medications called 5-HT3 receptor antagonists. It works by blocking the action of serotonin, a natural substance that may cause nausea and vomiting. So far it has worked as a temporary fix until the scopes provide more information. We are getting ready to add the Bactrim back for his kidney reflux. Urology did not want to wait until his upcoming renal ultrasound unprotected. We are going to see if the same symptoms appear and if so then we will have to go back to furndantin. Another issue with all these medications has been the effects on the liver, while not alarming they are elevated to a point where the FA doctors want to act on them. We added an extra 100 mLs of water to his daily intake. Since we were having blood drawn GI asked for a renal panel as well with their interest being in the BUN which reflects the work load of the kidneys. Elias’ has been trending up. 17 is the high for normal, his are at 25. So we are adding an additional 80-120 mLs of pedialyte as well. This is kind of disappointing because it means more time on the feeding pump and less time to run and play. While it may not sound like much additional fluid, for Elias and the volume he can tolerate 120 mLs could take 45 min to push inside. he is too small to carry the backpack for the feeding pump so we have to contain him in his playpen for feedings. We are going to have to sit down tonight and really look at his schedule and make some tough adjustments to balance this all. The extra pedialyte is hopefully temporary and a check of his BUN at his next IVIG will tell us if this is helping or not. We were due for this, we were getting comfortable with the schedule we have Hahaha! Hopefully, we have spaced all these changes and additions out this week to keep things clear as to what is causing what issues, if any at all. That would be the preference.
On top of all this we managed to have a productive meeting with the school system about Elias and preschool. There was a panel of 9 therapists, teachers, psychologists and counselors in attendance in addition to Elias lead therapist for early intervention. They are able to begin him with services in the fall that are developmental in nature. We will be leaving the cognitive and social components out for now. With all the confusion from the left hand not knowing what the right is doing we have until may 1st to write and Individualized Education Plan (IEP). There must also be a few assessments before the meeting as well as observations. All this has to be done in 2 weeks! Our already tight schedule just got PACKED! We learned that had Elias been approved for the intensive level evaluation it would have made the process much easier and more beneficial. However, because of that denial we will be busting our tails to complete a process we tried to be proactive with, but were led to be convinced wasn’t the best option. We felt very good walking out of the meeting with the potential that his offers for Elias. He will be homebound of course. Pulmonary says no to being out in public still. We will update more on this in the coming weeks as we begin to learn more, but feel this is a positive and beneficial step for Elias!