Day 6: A Great Visit and a Relaxing Day

Happy Labor Day!

We've spent most of this day hanging out together watching the John Wayne movie marathon on AMC. This morning we had a pleasant surprise, Dr. Srivastava and her husband Matthew came by to check on John and visit for a little bit. It was great to meet him, see her and she was thrilled to see how well John is doing. She has impeccable timing and was here in time for rounds and got to meet the whole team of docs that are taking care of John now.

While John is looking much better with each passing day, he was kinda under the weather today and they stopped his tube feeds for the day just to give him some time to rest up. He started the morning by puking up snot, but hopefully now that he's been put back on his Zrytec that issue will go away and all will be better.

Tomorrow is coming the test that I've been dreading the most. John is scheduled for a barium enema in the morning, we've not told him yet, as it just doesn't seem like something that he should have to worry about ahead of time. He's had this test once before when he was a little baby and it was traumatic to say the least, this time he has to be tied down, policy that I can't get around believe me I've tried, and I don't think that is going to help one bit with how bad the test is going to feel to him. He will be strapped to a board, arms over his head, straps around head and arms, and across the hips, legs and feet so that no matter how much he screams and struggles he won't be able to move so that the pictures will be steady. The thought of the test makes me sick, the thought of explaining to him what is going to happen breaks my heart. We have worked very hard to make sure that John understood that medical professionals weren't hurting him, that sometimes to take care of him they had to do tests and things that hurt but that they weren't hurting him because they were mean or liked it. Evidently this has sunk in with him as one of his favorite people in Columbia is Kim on the IV team and she has had to put more IV's in the child than anyone else ever has and he still loves her and likes to wave and blow kisses to her. The only thing we have figured for this test tomorrow is to let him walk there on his own if he wants, and then spend the couple hours after the test going and doing things that he likes to do, hoping that the incentive of getting to go and walk and such will be enough to help him endure the test. A very long time ago John was able to just shut down, to look off into the corner and pretend like the world didn't exist, that wasn't good and we don't want it to come back.

Thank you for your prayers all along, and please pray for a little guy who has a very hard test to go through tomorrow, one in which he must be fully awake and cannot be sedated for. On a much more positive note, we should know tomorrow when we will be discharged and where we are going. I'm sorry I haven't posted that address yet, but rumor has it that John will be discharged tomorrow and then it will be changing.

For tonight the sweet boy is cuddled up next to dad watching yet another western!