We escaped the 6th Floor... for a little while.

Post-Fontan Day 13

Not to much to report today. Jake's chest x-ray looked a little hazier then yesterdays so they added a one time dose of a diuretic that tends to get that extra fluid off. They also switched him to oral Lasix and increased that. He has been peeing a lot so I am PRAYING that the x-ray looks better tomorrow. His eyes looked a bit sunken in today after all of the diuretics so I have been trying to get him to eat and drink as much as possible. They are looking better tonight.

Hematology decided he will go home on the Lovenox injections. I will touch base with Cincinnati to see when they want to see him for follow up with that. Most likely we can just do bloodwork at home once a month to check and make sure he stays at a theraputic level.

If the x-ray looks good tomorrow then hopefully we can discuss going home on Thursday. So please pray it looks good!

The attending gave Jacob privileges to be off of his telemetry box and go anywhere he wants in the hospital. Most of the time you are not allowed off of the unit but since his telemetry has been stable and we are just waiting around to make sure the fluid doesn't come back they said he can go off the floor and try to have some fun. Once the order went through we decided to take him down to the Atrium. It just so happened that they were having a big Music Therapy Session down there.

Breaking free of the 6th floor... for a little bit.

 

This only happens for one hour once a month. All of the music therapists get together and bring a ton of instruments for all of the kids to play. What luck we would go down there just then. The music therapist that knew Jake from a session up in our playroom came over and gave the boys a drum and some tambourines. Jake and Aidan had a blast. Then Jake ran over to be part of the drumming circle and jumped up onto the chair. He loved getting to play all of the instruments. What a great mini get a way. He was able to just be a normal 3 year old for a little while, no leads, no doctors just a boy having fun! Aidan was also excited because he isn't allowed in the playroom up on the cardiac floor. This way he was able to participate and have fun with his brother.

I am super tired because it is impossible to sleep in this place. That being said I am super grateful that Jake is doing so well. As much as I want to go home I also know how blessed we are. Jake is happy and running around, laughing and playing. There are so many people who are here watching their children fight with no hope of going home in sight. I am glad they are being extra cautious. We need to make sure the fluid goes away completely.

Hope to have more news tomorrow!