CHD didn't stop this princess!!!
Our brave little princess warrior fought her battle, and she won! We busted out of that hospital today, and we could not be happier!!!
It turned out to be an extremely long day, and right down to the last minute we weren't sure if we were actually going to be discharged. This morning everything was going according to plan. First Presley had her final echo.
Dr. Marx even came in as it was going on which was perfect timing. He was able to pretty much tell us right then and there that it looked like a wonderful repair! He said it was looking really good, but we would get the final results later after he reviewed it all more thoroughly. It was also decided that Presley should have the scope down her throat to check on her vocal cords. David held her on his lap, and although it was uncomfortable for her it was over pretty quick.
The ENT doctor was able to tell right away that Presley's left vocal cord is not functioning as it should. It is not completely paralyzed, but it is sluggish. This just helps us to understand why her full volume has not yet returned and also why it is still difficult for her to swallow thin liquids. For now we will keep on thickening her liquids and just give it time. If it does not improve, then we may need to investigate further. Finally, Presley needed a final blood draw to check on her blood cell count. She handled it so well even when it took both arms to get enough blood! We knew it would probably not be until at least early afternoon before we were discharged, so we took a final walk around the hospital. Before we left we took some last pictures in front of our room 805 on the cardiac floor, 8 East.
We explored the hospital for the last time, and we found some really fun musical steps which Presley loved!
We ventured out to the playground since we had been denied the day before. Presley was getting pretty tired, so we didn't stay too long. But it was so nice to be outside!
We had some pizza for lunch, and then we headed back to our room to wait for discharge. That was at about 1:00 p.m. And then we waited . . . and waited . . . and waited! We checked in a couple of times with the nurse, but still no update. We finally found out that everything looked great on the echo, and we should be receiving our discharge papers any time! Then at 6:00 we received news that Presley's blood work showed a very low number of platelets. We were surprised because we had already been told that everything was fine. When the discharge doctor rechecked, she was concerned about the low number. However, it didn't make sense, and there was no reason to think that the low number was accurate. However, we had to redo the blood test just to confirm. Ugh! This meant two more pokes for our sweet, patient girl with no luck! Finally, a very experienced nurse came in and drew the blood out of Presley's one remaining IV. Success! Praise the Lord! We were so thankful that this IV hadn't already been removed.
Our girl was so happy! She put on her backpack and was ready to go! And then we waited . . . again! Her platelet levels were fine, and we were good to go! We knew God was and always is in control! We signed our final papers, and at about 8:00 p.m. we walked right out of those hospital doors! It was the best anniversary present David and I could have ever hoped to receive!
Thank you, Lord Jesus, for healing our Presley! This has been an amazing journey, and we can hardly put into words how grateful we are to our incredible team at Boston Children's Hospital! Now we can't wait to get home and hug each one of our precious kiddos! We miss them all so, so much, and what a sweet reunion that will be!
