|Such a sleepy boy! We had to wake him up around 5:30 am|
The rest of the update was no less miraculous. The doctor had to remove Ewan's tricuspid valve because it was over the hole. They put a plastic mesh patch on the hole and stitched it into place, then had to reposition the tricuspid valve at a slightly different angle than it had been. Ewan also has a small hole between his two atriums, and the doctor purposely made the hole a bit larger to act as a "pop off valve" for the heart. He was very worried about the pressure in Ewan's heart after surgery, and hoped that this hole would act as a buffer for the newly repaired heart and that the blood pressure wouldn't be too high in the right ventricle, which feeds blood to the lungs. The big worry is pulmonary hypertension, which they anticipated would skyrocket for a while after surgery. He said in the echo post-surgery that the repaired VSD still had a small leak in it, but only about a millimeter. It would hopefully fill in by itself around the stitches, but if not, it is an inconsequential hole. He said overall that things went well, the surgery was a success, and that we could go see our miracle boy in recovery 30 minutes from when he left. I can't even imagine the crazy miracle that modern medicine is! They stopped my child's heart, fixed it, then got it beating again. I don't think that will ever not amaze me to think about.
We headed to recovery, and I was pleasantly surprised at how great Ewan looked! He was sleeping peacefully with his eyes half open (which he often does). He didn't look puffy. He looked pale, but I was expecting him to look terrible, and instead he looked good!
Ewan became twitchy for about an hour before he woke up. Suddenly he was awake, terrified, and fighting. About 10 nurses and doctors surrounded his bed and held him down while the respiratory therapist removed his breathing tube. I was completely overwhelmed. He was screaming, but no sound was coming out (because of the breathing tube). He had tears flowing from his eyes, and there was nothing I could do to calm him. His heart monitors started beeping like crazy because his heart was going nuts out of fear. The breathing tube finally came out, and he was screaming a terrible visceral scream. He had no idea what was happening to him. He was yelling, "MAMA!!", but he didn't recognize Quin or I. All I could do was lay on him and sob. I was so overwhelmed and full of sorrow for my boy. They gave him morphine, and he quickly fell back asleep.
I made it to the hospital Friday morning and Ewan was grumpy, but he was definitely Ewan! He had been awake nearly the whole night watching movies and coloring. He had had lots to drink and was eating crackers when I showed up. Quin went home to get some sleep, and I took over at the bedside. I ordered him a breakfast of Ramen noodles and scrambled eggs and he gobbled it all up! We knew it was time for more medicine when he would start to get grumpy. The nurse the first day told us the second day would be the worst because the anesthesia would be all out of his system, but the pain would be terrible. It was definitely a long day. Ewan refused to sleep and was extremely grumpy. He was eating well, though, and we entertained ourselves by watching movies, coloring, painting, and playing with toys.
The second night Ewan slept through the night and was in a much better mood Saturday. The nurse had removed several wires the day before, and continued throughout the day to remove gear. Quin sent me a picture on Saturday morning of Ewan walking around the Cardiac Intensive Care Unit, chest tube and oxygen in tow! The physical therapist had shown up to make sure Ewan could sit up. He surprised everyone by walking laps around the CICU! After the third lap, the physical therapist chuckled and noted that he wouldn't need to stop by again. Ha!
Quin spent the night again on Saturday, and it was the plan that my mom would come take over for a few hours while we went to church together since it was the primary program and our other kids were participating. We were all surprised when we were told Ewan would have a sedated Echo that morning. We decided it would be best if Quin stayed with Ewan instead of watching the kids in the program. They also removed his chest tube and bandages.
Sunday was Mid-Autumn Festival in China. That is a big holiday there where they celebrate the harvest, the moon, and family and friends. It reminds me of our Thanksgiving. Since it was our first Chinese holiday together, I thought it would be fun to get some traditional Chinese mooncakes to celebrate. These mooncakes are only available during Mid-Autumn Festival. Quin went to the Chinese market on Saturday to pick some up. Despite the feast above, Ewan had no interest in the mooncakes. I don't know if he doesn't care for them or if he just wasn't in the mood. He got excited to see them, but didn't want to eat them. Maybe we'll make our own mooncakes next year.
Quin decided to go four for four and spent the night again.
I have to post this video of Ewan and the electric piano. This went on for HOURS. Hilarious, annoying, maddening.
I came up early to switch him, but we found out Ewan would be going home soon, so Quin worked from the hospital room while we waited for discharge. Of course it always ends up taking hours and hours longer than anticipated and we didn't get home until about 2:30. It was SO nice to get out of the hospital, though! We were all going stir crazy! Ewan was super grumpy by the end and was throwing a fit when the surgeon came in to say goodbye. I tried to get a picture of the, but this is the best I got. Pathetic.
In the hospital Ewan was pretty dependent on Morphine for about the first three days. They took him off of it and he was doing well alternating Lortab and Motrin. We'd have to stay right on top of the pain meds, though, or he would spiral out of control pretty quickly. He was also on oxygen so his right ventricle wouldn't have to do so much work and would lower the pressure in his lungs. He is taking blood pressure meds to help the left ventricle pump harder as it was being sluggish (which is apparently a common side affect of heart surgery) as well as a diarrhetic to keep the swelling in his heart down. The doctors all told us multiple times that they couldn't believe how well Ewan was doing. We saw the surgeon a few times as well as Ewan's cardiologist. We also saw two fellows regularly and four doctors employed by the hospital. Every single one of them was surprised at how well Ewan was doing. They also expressed surprise that he was even able to have the surgery. It's all so overwhelmingly incredible!
We came home with Ewan on oxygen as well as the medications he was taking in the hospital. It's the hope that at his two week appointment he'll be able to get rid of all of it! I sure hope so, because keeping oxygen in his nose has proved to be a full time job! It's exhausting how many times he rips that out of his nose a day. The first night he needed Lortab, but by Tuesday morning, he was acting completely normal. He said he didn't have owies and didn't need medicine. I gave him Motrin to stay on top of the pain, but he hasn't required Lortab since Tuesday. He blows my mind! Being home has been a breeze for him! He acts like his chest wasn't cracked into just a few days before. Truly the hardest part is keeping him chill. The biggest worry is that he would fall and disrupt the wired-together sternum. He's happy, playful, and eager to show his "owies" to anyone who asks!
I am so beyond thankful for the gift and miracle that is Ewan's life. Thank you all for your prayers and good thoughts. We could feel them all and it was such a comfort to know so many people around the world are rooting for our boy!