An email from Stacey:
I met with Jonathan's GI doctor and dietician this morning and both feel that we've reached a point where more aggressive action needs to be taken as Jonathan is gaining so slowly (weight & height), even with all of the calories he is getting.
There are a couple of things that we'll be doing over the next few weeks. First, the GI doctor thinks that something might be going on with Jonathan's intestines, so they are going to do another stool sample that will check to see if there are signs of inflammation...we've done stool testing before, but haven't done this particular test. Second, the GI doctor wants us to meet with 2 other specialists, one that's a motility specialist and the other specializes more on the intestines. Depending on what their thoughts are with Jonathan will determine what course we will take. She strongly feels that his intestines aren't functioning properly and therefore, not absorbing the proper nutrients.
We will be doing an upper endoscopy at Memorial Hospital tentatively scheduled for September 13th. Hopefully I'll be able to meet with the 2 specialists before then as we may do a colonoscopy at the same time depending on what they think.
We are also adding a supplement to Jonathan's formula that will increase his caloric intake greatly. We're doing a 4 day trial to see how he responds and will go from there.
The GI doctor is also going to speak with the intensive feeding therapy clinic in Denver to see if we can possibly get Jonathan moved up on the waiting list. Right now, there's about a 6 month wait.
The last thing we discussed was the possibly of having a central line put in Jonathan for IV feeding for a couple of weeks. This would possibly done if everything comes back normal on the above tests. It would also be done at home, so there would be no hospital stay. If he made great improvement over the few weeks of the IV feeding, we would possibly look at something a little more permanent to really help with the weight & height gain. But that would be down the road and addressed in further detail if it came to that.
Anyway, that's the update and where we are at this point in time.
Love, Stacey