Day 2
Yesterday was busy as well, even though we were inpatient still we had several doctors checking on him. We met with speech and ot therapy and behavioral medicine. They both had lots of suggestions and ideas for us and Zach. Speech and OT are mainly trying to get him to take his bottles at meal time and not using them for a pacifier. So we have to limit him from walking around with a bottle all day and give it only to him at meals so he wants it more. Also they want me to make sure he is still touching and feeling all sorts of textures and materials so he doesn't lose the sensations since he can't experience them by eating. They also gave me some ideas at the dinner table to occupy him and give him the social experience he needs. Behavioral medicine (i.e. pychiatrist) was very helpful. She was very nice and told us at this age we are mainly trying to prevent behaviors from happening by making sure he can't get in the situation to have them. That means, for one I have to get a new trash can with a locking lid or put in a place he can't get too. Yes, he gets in the trash can and tries to eat food out of it...resulting in a horrible fit when we take it away. And during meal times, after his 5 minutes of social experience at the table, we are to take turns taking him and doing something else while the other one eats dinner. Also for nightime, a big concern was not being able to hook him up since he wakes up so much and won't stay in his bed. So the suggestion is to move his bed into our room, that way if he wakes up he will be close to me and he doesn't have to get out of bed. This will help with his feeding a lot.
He did gain weight yesterday too, he was about 5 oz more than Monday so yay!!
Day 3
Today was more laid back. The doctors made their rounds about 11 am this morning and went over everything that we had learned and the results from some of the bloodwork. So far the bloodwork looks good, one liver enzyme was slightly elevated...not a big concern and his IGE was elevated and well...duh, he had allergies so we are still waiting on the rest to come in. They have set his daily intake to 1200 calories a day or 40 oz of elecare. That means 18 hours of continuous feeds at 55 ml an hour and then he needs to drink 10 oz by mouth/bottle a day. That will accomplish the goal of 1200 calories a day. He gets a 6 hour window without the pump which is good and we can set the hours anyway we want but he was on the schedule of 3 pm to 9 am of pump then off from 9 am to 3pm then back on. That worked good so far.
The only issue we have noticed is he is having diarrhea again, 4 so far today...has been 1 formed stool a day for the past 8 months or so. They said that is from the elecare (formula) having some sugar in it and therefore he needs to be on sucraid for his sucrose-isomaltase deficiency. Unfortunatly, the sucraid is about $5000 a month, yes...you read it right. And you can only get it from one place so not easily accessible. They are working on it and trying to get insurance to approve it for him.
We got released from the hospital around 12:30 pm with a follow up GI clinic in the morning at 8 am. Dr Franciosi will go over all the plans for Zach and let us know when to come back. He is supposed to get an endoscopy in aobut 4 weeks but we can do that Brenners in Winston and just send the biopsies here to Cincy. And we will meet with the allergist again at the next visit to discuss what to do about foods.
This afternoon we went to the Newport/Cincinnati aquarium and had fun. It was nice after the last couple of days. Zach much needed to get out and run and he enjoyed looking at all the fish.
This week has been very informative and interesting so far so we can't wait to see what tomorrow holds.
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