Avery is such a mystery. I sure wish he could tell us what is bothering him. It's a constant guessing game. Yesterday morning he had a low grade fever so I immediately assumed he had an aspiration pneumonia. I called the pallative team and they were going to deliver an antibiotic (isn't that wonderful). Great thing about having them on board (we can avoid the germ infested ER). Anyway, no fever the rest of the day but tons of gagging throughout the day. So we did not start the abx b/c I sure don't want the c-diff to return as this is the longest in over a yr we have gone without it.

On Friday, i convinced the GI dr. to up his reflux meds but it actually seems to be having the opposite affect which is increased gagging, nausea and upset stomach. Ugh, we can't win. Poor kid is hiccupping, pale and vomits at times.

I will be going in on Tues to have his j tube changed which we are hoping this will solve alot of issues but I highly doubt it b/c I know it is not displaced. We are also meeting with the pallative team to come up with a plan for Avery. As me not doing a fundo is off the table, we are left with very few options. We have to maximize his meds so we are not constantly running into aspiration pneum. which are so dangerous for him. I am also questioning on whether we should do a ph probe and endoscopy b/c I am concerned he could have a ulcer which the symptoms are pretty similar.

Isaiah's motility issues have seemed to get alot better b/c of slowing his feeds. Yay. So one big problem fixed without surgery.

Janessa has been out and about all weekend catching up with friends where we used to live. One of our friends we have not sen in awhile. The girls are only 3 weeks apart and my friend and I have been friends since the first day of college so it is nice to see the girls whispering to each other like we used to so many yrs ago. They are little us and so grown.


So other than that things are going well. Please pray that we get some things figured out with Avery and make him more comfortable.

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