This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

Merry Christmas! -- Originally Published December 26, 2007

Thursday, July 22, 2010

MERRY CHRISTMAS! Michael has had a great Christmas, but first we'll finish the story of the hospital.

One interesting thing about the oxygen monitor in the hospital -- once we were in the ward, it seemed to go nuts. It kept sounding off, and we couldn't get his O2 levels up. In the PACU we were holding him upright with his head on our shoulder so the blood would drain out, not back. In the ward, though, he seemed to breathe better on the bed. Even the resident came in and checked out Michael to make sure he was okay. This made no sense that it changed, and if it didn't fix itself, we weren't leaving on Friday ... so Mom did something she didn't have the nerve to do the last time we were in the hospital. She pulled off the O2 monitor, reversed it, put it back on, and put on a sock. Suddenly the O2 levels increased by at least 5 points and we didn't have a problem for the rest of the night.

Long story short, the night was long and hard. At 6 AM, Michael woke up from a short nap and seemed happier. He was thinking of grinning, and he even managed a small smile when Mommy tickled him. As one of Mommy's old friends said, "the tide always changes." For Michael, the tide changed at 6, and he began to improve from there. We were elegible for discharge by 8 AM, when Dr. Plastic Surgeon came by to take a look. We hung around because the doctor wrote an order for us to see the GI doc so we could be sure to get our feeding pump. (Unfortunately, the order was not specific, (written as a "consult") and the GI doc didn't know what we needed and it took a long time (5.5 hours) to get resolved. We ended the scenario by telling the social worker we were leaving and she had ten minutes to explain to us the consequences of our decision to take Michael out of the hospital without the discharge paperwork. Fortunately, they agreed and had everything wrapped up and the doctor over in ten minutes.) The pump was ordered and arrived the following Monday. In the meantime, we fed Michael over an hour by gravity. Now he gets his food over an hour by pump. (Oddly enough, the only two pukes he has had since surgery have been after pump feedings. Huh?)

Now, about Christmas -- Michael had a great time. He slept through most of the presents because we got a later start than he wanted, but he sure had a great time opening the gifts. The paper was a big hit, and he could rip it even with the arm restraints. When the fun got too much, the Bunnytown bunnies were there to help (thanks to a made from tv DVD that was a Christmas present from his cousin!) (Thank you!!!!!!)

We had the good fortune of Christmas lasting several days -- Saturday we exchanged presents with an aunt, uncle and some cousins, and on Christmas day with another uncle, and a grandma and a grandpa (and we had some fun gifts from the great-aunts and uncles and great-grandma, too!)

wanted to take a few lines to express our deepest thanks to everyone for your thoughts, prayers, and well-wishes during this hopeful yet difficult time. It seemed that every time we stumbled, there was a helping hand, and this has been going on for months. The past week has been a challenge, but there have been so many people on deck to make it easier. We had food from neighbors, and cooking from family, and company from the church, and blessings from everywhere. We could not ask for more in our wildest dreams. Special thanks to Michael's grandparents and to Pastor H___ for staying with us in the waiting room while the surgeons cut into our son (again). Special thanks to each of you for your notes on this carepage. And, perhaps most poignantly of all, special thanks to the parents of other children who have had this surgery -- all across the country -- who have counseled us and encouraged us and prepared us. We cannot imagine how to be prepared without you.


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