Alex and Maddy

Alex and Maddy

Thursday, August 14, 2008

So much for our "easy" trip to Houston this time! It looks like we could be setting up shop for a little while. Our plan yesterday was to start with sugar water through Alex's Gtube at a very slow rate and slowly bump up every 2-3 hours. We started at 11:15 yesterday and did well with our first 2 rates which were laughably slow (less then an ounce an hour). At 4:30 we went up to 50 cc/hr which is a about an ounce and a half an hour. At 7:30, Alex's cheeks were starting to look flushed and he felt warm, but his temp wasn't too high yet. At 8:30, he had spiked a fever and was complaining of his belly hurting. So we are back down to 20 cc/hour and waiting to hear what the next plan is.

We are waiting to see Alex;s immunologis​t. We saw her resident yesterday adn are pretty sure we are going to be doing an IVIG infusion. This is replacement immunoglobu​lin to try and help his immune system. Alex's immunoglobu​lins remain low and since he is having trouble fighting this infection it looks like this will be needed.

We are supposed to see both GI and Surgery today. They are trying to decide if we should just do the fundo (reflux surgery) or if he will also need another procedure at the same time called a pyloroplast​y. That helps things move faster from stomach to intestines. We are hoping to schedule the surgery sometime in September.

I​n good news...Alex feels pretty good. he is charming all the nurses and doctors. He loves going to the playroom and seeing his girls from child life. Child life (responsibl​e for making hospital visits as easy as possible) fell in love with Alex our first visit here in February and have been wonderful to us ever since. They are so sweet to Alex and bring him everything he wants. We are also happy to have Jen and Landon in the hospital with us. Landon had his muscle biopsy the same day as Alex and Jen and I have been friendly ever since. Landon has the same rare complex III mito disorder. Right now the boys are not allowed to see each other because Dr. K doesn't want them to get each other sick. There are a LOT of similaritie​s between the boys although Landon is sicker then Alex. Jen and I have been sneaking downstairs to get coffee, lunch and dinner together every day.

Jen and another friend Melody brought me take out and cupcakes last night for my birthday. It was fun to sit "at the park" in the hospital and have real food and chat with friends. Aunt JennJenn, Uncle Jimmy and Skye Skye sent me and Alex balloons. Child life brought me a balloon, card and flowers. So I got to at least have a little "celebration​" on my birthday. THANK YOU GIRLS FOR MAKING MY BIRTHDAY SPECIAL!

We had a good appointment with Dr. Koenig. Alex loves all his doctors, but asks all day for Dr. Koenig. She "tried" to explain some of the genetics to me. Genetics is the most confusing stuff ever so I won't even try and explain what I got of that. She is a little concerned about Alex's amount of sleep increasing so much over the last few months. When we come back in October we are going to do a sleep study. But we think it is just progression of the disease. We will also see pulmonology and Cardiology in October for routine yearly checkups. (We are NOT concerned about heart or lungs). The "blinking episodes" we were seeing she thinks are seizures, but they have subsided for now and were not the type to cause any damage so we will keep an eye on it, but are not planning on treating. That was pretty much all of the highlights.​
Once I see our ped team and Dr. Koenig this morning I will try and update and let you know where we stand.

To all of those that called....I am so sorry i didn't get to call you all back. All of the calls and emails are appreciated.​
Love,

Ali

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