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.
7 comments:
Ok, I guess my last comment was a little premature. What an experience you are having! I hope your pediatrician is close by! Do you have to go twice a day? I'll just have to call you to get some more details. I love the top photo! So cute!
So happy that you are at home now. The top photo of Gavin is darling. We'll continue to remember you in our prayers!
As everyone else has mentioned, the first picture says it all. He looks like a trooper and so happy. What a good baby! Glad you are home and just in time for conference and Easter comming up. Time for us to count all our blessings.
so happy for you guys to be home finally! gavin is such a handsome boy...and already showing how much strength he has. i absolutely love that picture of him, and the other ones with the kids show how much they love him. what a blessing to have him in your home. we love you guys!
Congratulations! :) I'm glad he's doing so well & that you're all home. Home just feels good. :) It sounds like you'll have a lot to do to take care of him but I'm sure you will do a great job. He's lucky to have such a great family!
So glad your little Gavin was able to come home! I am so amazed at how well you have handled this whole situation. Many more blessings to come your way!
Those two pictures of Gavin smiling are amazing. Even his eyes are smiling. I've seen new born babies smile, but not with those eyes.
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