My Poor Poor Boy

So after a fun visit at grandma's on Sunday where Caleb was kind of off, we went home where he was very clingy and only wanted to be held. His nurse came and after about in hour she told me he was desating so I went up stairs to check on him and his O2 was going between 82 and 90. So I woke him up and they went up to about 96. As soon as he would go back to sleep he would go back down so we started out for the hospital. We ended up needing to stop and call an ambulance because his O2 went down to 77 and his lovely nurse grabbed an empty can! Lets just say she will no longer be working at Casa de Joines.

Anyway to make a long story short Caleb is back at CHKD as a resident and the drs both here and in Boston are pushing for him to stay here until Tuesday, a week from today and then be medically transported to Boston Children's, which I am starting to agree with because what if something happens on the road??? We wont be able to find a hospital fast so better safe than sorry.

He is currently still running a temp of 102 without Tylenol. With Tylenol he goes to back to normal. His flu and RSV test came back negative so that's a plus. His chest xray show no signs of aspiration or pneumonia WHICH IS FANTASTICO!

He is sleeping peacefully, I have been with him and he LOVES to wake up just as I am falling a asleep.

I cannot wait until this is all over and his repair is done! Its funny his surgery nurse practitioner stopped by and tried to convince me not to take him to Boston but instead wait and allow his current surgeon to do his operation which she doesn't want to do for 6-12 months and from what my research says the wait and see approach never works and the esophagus never growns enough for surgery to be done without (a)using a piece of the colon (b) without it being under too much tension or (c) it completely falls and the stomach has to be moved up into his chest! I cannot say what Heavenly Father has in store for use but none of those sound very good to me SO I nicely told her WE would be going to Boston for the operation. She then told me that Caleb will be unable to be seen in their surgery practice to which I said, "thats fine." Did she really think that would make me change my mind???

T minus 6 days and we are otta here!

Caleb says hello and thanks for all your prayer!