Yes you read that correctly! We got in the Ronald McDonald House today!
This was such a relief as it was getting so expensive living out of a hotel. It is such a burden off of my back to know that we are down the street from the hospital and have a place to stay.
I will be staying with Jake at the hospital however my parents, Andy and Aidan will be staying here. Andy and I will trade off so I can get a break and spend some much needed Aidan time once in a while.. oh yeah and so I can get a real meal here and there!
Tonight we have to stop Jake's formula at 11pm. He can have pedialyte up to 6am and I am praying it sustains him enough that he is able to sleep. He also will not be getting his meds in the morning so I hope that he is ok without them. I am afraid he will be puffy since he won't have any diuretics.
We have to be at CHOP at 8:30 tomorrow morning for Jacob's cath. He will be pretty out of it tomorrow from the anesthesia and I am sure he will be pretty pissed off as well. Wish me luck!
Please pray that things go well so he can have his Glenn on Wednesday as scheduled. I am very nervous right now but overall I really do think Jake will be ok. He is such a fighter and has proven himself time and time again.
I am also asking all of you to keep a special friend in your prayers. Zoe is one of Jake's very close heart buddies. She has been SATing high and her arch may be narrowing. This is very dangerous as she already has stints in her shunt and a clot in her leg. Please pray that she is ok and does not need any intervention.
Thank you for all of the prayers being sent to Jacob and all of his heart friends.
Love,
The Bakers
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