So, today was eventful to say the least. This morning was our first GI clinic visit at 8 am. We met Dr Franciosi, who is great, and he talked to us about Zach...he already had his records so he knew a little. We told him all of his history, from birth til now..all the struggles with feeding, foods and our concerns. I am pretty sure he was a little overwhelmed a how bad Zach's case is so he called Dr Putnam who is the other GI doctor. When he got back from talking to the other doctor, he explained to us that the major concern was his calorie intake. He isn't getting enough calories to grow and gain weight like normal kids and for him he had lots to make up so his calorie intake is very important. He wants some major goals accomplished at this visit. He was supposed to do an endoscopy on Zach later in the afternoon but canceled that..for one, he just had major surgery aobut 4 weeks ago and two, he doesn't feel that is the most important issue right now. So instead he decided to admit Zach into the hospital to do a feeding study and meet with other doctors.
His major goals for this visit are...
-increase calorie intake
-start sucraid for the CSID
-try to unravel his extensive medical history
-figure out if there is some underlying cause for all his problems
We were admited around 11:30 am and brought to room A615...which this is by far the biggest hospital we have been in and it is very confusing. They got of his vitals and weight, which is 22.7, down from last week so a little sad. Then we had a slew of doctors coming in and out. We met with another GI doctor, speech and ocupational therapy, allergy, and a dietician. He also got lots of blood drawn to check for various underlying conditions from mitochondrial to celiac. The allergy doctor, Dr Von Thiel is so awesome...he was so sympathetic and agreed his biggest goal is to gain weight before we start foods. He believes Zach has primary EE which cannot be controlled with medicine only dietary. He also is ordering a whole workup of blood, checking his immune system from HIV to parasites..trying to see if something else shows up. He said he could have a slew of various conditions that could be making his system go crazy. He also told us Zach might not be able to eat for several years, but that would be worst thing and hopefully not the case.
He meets with speech and occupational therapy again tomorrow so maybe they can bring some insight to help with feeding. They want him to keep using the botte to drink out of if they can get him to drink more out of it. He uses it mostly as a pacifier now so that is a challenge. We also should be meeting with behavioral medicine sometime this week too, to help with the emotional and pychological issues Zach is beginning to have.
We like all the doctors so far and we have already learned a lot. Today was interesting and crazy with all of the change of plans and doctor visits. I miss my hotel room tonight, I am staying with Zach at the hospital. Hopefully tomorrow will bring some answers and a plan.