Alex and Maddy

Alex and Maddy

Friday, April 28, 2017

Setbacks

Yesterday was definitely a day of ups and downs. Alex woke up feeling a bit better and was a lot less anxious. Unfortunately those positive vibes didn't last too long. Alex started to feel pretty cruddy again and by 7:30 his temp was up over 102. With the fever also came some anxiety about knowing that another surgery is upcoming in the near future.

The morning also brought with it more testing. We went down stairs for both an ultrasound of his liver, kidneys, spleen, and stomach. Then they took us over to echo to look at his heart. Once again child life came through in a huge way. They shuttled Maddy off to the playroom so I could go with Alex and Maddy would not be bored sitting in tests.

We got settled back in the room and waited for Mimi! Mom got here shortly before 3. Alex and I were both so excited to see her. Maddy was still napping, but we let Mimi wake her up. Maddy quickly shuttled Mimi downstairs for a medical play activity.

I was a little surprised when I got a knock on the door around 3:30 and a second visit of the day from our hospitalist. We stepped into the hall. (Alex who has always been an incredible advocate for himself, has asked that I not speak to the dr's in the room because it is "freaking him out"). Dr. H let me know that they had some results from the earlier tests. Thankfully his abdomen looked good. They did not see anything that looked questionable. It was also good in that they feel like they got enough images to say that. Alex's GI system is FULL of gas which makes it nearly impossible to see anything on ultrasound. Unfortunately the news on the echo was not as positive. They see what "may" be a pocket of yeast at the opening of the heart. They tried to go back to old echo's and see if they could confirm if it is something new or just part of Alex. They were not able to see an exact image where they felt like they can rule it out. The plan right now is that we will repeat the echo on Monday to see if they still see it. If they do, he will be sedated and they will do a transesophogeal echo. The treatment would be the same, but if he has endocarditis we would treat much longer. I was caught off guard. I will hopefully be able to ask more questions today.

Our GI also came by yesterday. We all wish there was more we could do to help his GI system so we wouldn't wind up in situations like this. We just don't have a whole lot of options at this point.

Our last visit of the day was from the ophthalmologist to look for yeast in Alex's eyes. He did not see anything concerning. This sweet man was about to leave and asked if it would be ok to pray with us. He was so kind and caring and we will gratefully pray with anyone!

Alex did spike another temp last night, but his vital signs looked much better then with previous fevers.

I had what I thought was allergies. But as the day went on I felt worse and worse. Weeks like this are brutal on a Mama's heart and I think my body is calling uncle! I have a nice little cold and no voice at this point. But I did take nyquil last night, so at least I slept.

A special thanks to my Mom who dropped everything to be here to help. I am so lucky to have been raised by a woman who continues to love completely selflessly no matter how old I am.

We are feeling so incredibly grateful for all the support. We feel the love and prayers. I wish I could recognize all of the people who have stepped up to help in so many different ways. We are so blessed by all of you!

Ali

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