Monday, November 29, 2010 words can't describe the joy in our hearts when we were told we could bring Owen home. Most people don't know but on Sunday our resident came into the room where we were staying with Owen and told us that she was going to recommend Owen have another procedure to insert a G-Tube for feeding before he went home. She was worried he wasn't eating enough and wasn't gaining weight consistently. We were disappointed but still hopeful because we knew that the attending doctor, Dr. Burchfield, had said only a week ago that he didn't feel Owen needed that procedure. The resident informed us that Dr. Burchfield was going off duty and wouldn't be there on Monday and once again we were crushed. Part of the problem with having a child in the NICU is that his doctors are always changing. Owen had new residents every week and a half and the attendings changed every month or maybe every 3 weeks. Dr. Burchfield had been the attending on duty when Owen came into the NICU and he had watched Owen go from the very critical child in heart failure to the stable "kindergartner" with a problem eating. He had been advocating for Owen to go home and we felt he would let him - if he was there.
Imagine our surprise when we got a knock on the door at about 8 am and Dr. Burchfield came in. He was going off duty so we didn't expect to see him but it was his last day and his first order of business was letting us know we would be discharged. He had told the nurse to have us out by noon because we had a long drive home. He reassured us and told us that we would know what to look for. It's important that we monitor how much Owen eats each day and it's been scary even being home watching him eat well one day and not so well the next. From my limited access to information on children with the Vein of Galen I saw a common thread that most of the children have problems gaining weight. Owen takes two diuretics twice a day so that only makes it harder for him to gain weight. I worry about it more than I probably should as anyone who sees him comments on what a chunk he is. I pray everyday that he eats good. We were warned by our resident and by one of our core nurses that if he came home and didn't eat well he would be deemed as "failure to thrive" a diagnoses that breaks my heart but we were assured too that the procedure could still be done down the road if it were deemed necessary. I have to believe that Owen will be fine. I do push him and I count every milliliter he eats just to be sure I'm keeping up with it. For now his pediatrician is having us bring him in once a week to weigh him (more for my peace of mind than anything I think).
Owen has adjusted to being home quite nicely. And Ed and I have adjusted to it as well, though it will be a whole new adjustment when Ed goes back to work next week. Owen loves being held now that we can do it all the time with no wires connected to him and he also loves being in his swing. He hates baths and just one of his many medicines. He sleeps really well, he usually gets up in the middle of the night once and then wakes up between 8-9 (I know how lucky I am). I don't think I even believed we were really taking him home that day even with everything going on. We got our discharge papers around 11:45 that morning, then we fed him & packed up the truck, even leaving the hospital there was too much to do for it to sink in but in a quiet moment sitting outside of the Ronald McDonald House with just me and Owen in the truck the tears swelled up and I cried for I knew what all was behind us and I knew my baby was on his way home. On that last day in the hospital Dr. Burchfield said something I will never forget as long as I live. He told us that "this child had zero chance of making it without [us] as his parents." In that moment all I could think of were all the prayer warriors who were lifting us all up every day and night because I knew we had zero chance of making it without God and those answered prayers.
Thank you for allowing me to share with you.
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