Day 70: Going Home?

At clinic we asked Dr. Sudan what the criteria was for John to go home. She told us that if he can make it through the week without any incidences that next week we can talk about going home and just coming up for clinics every other week. We're excited! The other news from clinic, John has gained almost another pound, he's up to 26 pounds 10 ounces, and he's grown a half centimeter since last week too. His labs are looking great and both his liver and his kidneys are hanging in there. His TPN was turned down from 20 hours to 16 and he's continuing to advance on his g-tube feeds. His JP Wound Drain was taken out and he is feeling better and less ouchy every day. John's blood pressure is not coming back down to normal, will it, only time will tell, but Mark and I are wondering if he would have had a blood pressure problem earlier if he hadn't been so malnourished that his heart rate was down to barely over half of what it should have been.

We had a great visit with Mark. John was so excited to see him that he ran across the last few feet of the distance between them with his hands held up for a hug and squealing 'daddy' clear enough that dad certainly heard his name. John got to show dad his cool magic trick, where he pulls a napkin out of his sleeve after showing you that he doesn't have anything in his hands. He learned to sword fight with plastic knives, and loved getting 'stabbed' so much that if Mark didn't 'stab' him often enough John would 'stab' himself and then clutch his 'wound' and giggle.

Mark is on the way back home now. I must say that as a wife it is certainly hard to say good-bye to the other half of my heart and watch him drive away, but hardest of all is being mom watching a little boy hug and kiss and wave and blow kisses and then miss his daddy. Every so often I see him just thinking and staring and then he will tell me 'daddy working'. Believe me, I am praying that this week passes with no incidences and a little boy gets to go home and see his daddy every day.

Of course before we could finish out the evening one of John's hearing aids is missing, good grief, but at least this incident isn't one that would keep us from going home.

So after all this blabbing I have pictures to share. The first is of John and dad.



This picture is of John with his pumpkin, a gift from one of the cafeteria ladies. Most days John and I eat in the cafeteria 3x a day, so we are very attached to the nice cafeteria ladies and they are quite attached to John as well.



And these are of John receiving a very sweet present and a nice letter from Dr. Rashmi, of Columbia Children's. She sent him a back-up Tiger in case his first one goes missing again and a lovely letter.







It is thanks to the expertise of Dr. Rashmi and the other doctors and staff at Columbia Children's that we are here, and thanks to them that we could get to come home before John's central line comes out. Each day we thank God for these wonderful people.