Alex and Maddy

Alex and Maddy

Saturday, February 4, 2017

Home, Sweet Home!

Well this week didn't exactly go as planned!

On Tuesday, both kids had GI appointments. For Maddy, the discussion centered around her slow growth and nutrition. For Alex, we discussed the increased pain he has been experiencing for the past 2.5 weeks. Dr. O didn't want to make any changes with Alex until seeing if he could find a cause for the pain.

On Wednesday, We had to be at the hospital at 5:30 as Alex was scheduled for an endoscopy and some dental work. Dr. O didn't see anything visually. He scoped both his upper GI and also took a look around his Jejunum through his J-tube Stoma. He took biopsies and we don't have the results of those yet. The dentist did a deep cleaning and had planned on removing 3 baby teeth. When she got in there she found 9 baby teeth that needed to come out! We had an excellent anesthesiologist and Alex did pretty well. We were home around lunchtime and he just took it easy as he wasn't feeling great.

He woke me up at 4:30 Thursday morning saying he didn't feel well. We took his temperature which was 103.5. Bruce was at a sales meeting in Austin so for the second day in a  row I quickly packed up both kids and headed to the hospital. We arrived in the ER and were rushed into a room. Alex is always at a high risk for rapidly declining because of his mitochondrial disease and Adrenal insufficiency. Our ER does an excellent job of quickly responding to keep him stable. The initial assessment focused on his central line.  He was complaining of a really bad sore throat and had started to cough a little bit so i asked about testing for Flu and Strep. We were all shocked when he came back positive for both Flu A and Strep.  He was admitted. He feels pretty cruddy, but stayed pretty stable. I convinced the doctor to let us come home today. Some of his labs were trending in the wrong direction so we are keeping a close eye on him and will need to follow-up with several people this week. I am just happy to be home!

We are so grateful to our awesome neighbors who took care of the dogs Thursday morning when I had to rush out and one of Alex's nurses who came and picked up Maddy from the hospital and kept her the majority of the day so I could focus on Alex. Maddy's hematologist called in Tamiflu for her and we are hoping she doesn't come down with the Flu as well.

Thanks for everyone who offered to help.

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