Tuesday, March 24, 2009
Day 11 Post Op-Going Home!
Wow. Two weeks to the day we were admitted, Gavin was actually discharged today!
His discharge was almost prolonged a week longer because of the fact that the special blood pressure machine I need at home is not available. The hospital is scouring the country for one for us to rent, but in the meantime, I asked if I could possibly go the pediatrician each day. So that is now the plan! Gavin will need his BP taken twice a day for one to six months, so a daily visit to the doc would not be a realistic plan long term--needless to say I'm grateful insurance had agreed to pay for the special equipment so I can do this at home.
You might wonder why this machine is so hard to come by? Simply because babies just don't usually have blood pressure issues--Children's Hospital only has about 5 patients a year who need one. Even transplant and open heart surgeries have less impact on blood pressure than "coarc" surgeries because it impacts the flow of blood through the arteries so severely.
Gavin is on two blood pressure mediations--five doses total at different times throughout the day. As his kidneys adjust to his fixed aorta and his blood pressure lowers, I will keep the kidney and cardiology docs informed weekly, and his meds will gradually be decreased, so that we don't allow his BP get too low. The significant role I have in this process is a bit humbling!
Coming home was wonderful! Leaving the hospital was an indescribable feeling. I felt like any moment someone would stop me before I could sneak out! I was so grateful that Sister Dickerson and her son dropped by for a visit right when I was discharged--they were so willing to help me load up all my things. I know this was not just a coincidence, but an answer to all the prayers so many of you have offered in our behalf!
Grandma Conway was here the the kids today and they had made a welcome home poster and cake for Gavin and I. I LOVED the bedtime time I had with them this evening. All the kids have been so brave, but I know they've been scared. I know, because I know how scared they were for Mia. Tonight I told Spencer about how when I was a kid, I thought my brother, John, might die. He was VERY sick with scarlet fever. I was an avid reader, and I knew that this used to be deadly. My parents didn't seem to be too afraid, but I still wasn't so sure. I think I quietly shed tears with this nagging fear, and it was really upsetting to see my brother so ill. Needless to say, John made it! Spencer seemed to like this story.
Here are some pictures from earlier in the hospital stay.