Cinncinnati Days 2-4

Friday was Raul's third birthday! That morning we were able to have a bit of a slower start, which was nice. Raul wore his special birthday shirt, and a birthday pin so everyone at the hospital would know it was his birthday! We played a while at the hotel, then headed to the hotel. The shuttle, again, was double booked, so the hotel got us a taxi. We got stuck in horrible traffic due to an accident on the bridge, but luckily got there in plenty of time. We checked in on the surgical floor, and went right back to a room. We met briefly with the doctors, residents, and nurses while waiting. Child Life brought Raul a big car for his birthday, which he was super excited about! He also got a dog through a program started by an older boy with EB, which was super soft, and some birthday stickers. He was fine waiting until  I had to get him out of his stroller to get him in a gown, and then he was mad. They decided to give him some versed before walking back to the OR. It made him a bit goofy, but mostly just made him have trouble staying upright.

When we walked to the OR they greeted him by singing a ling of Happy Birthday, and we said he was going to his birthday party (good thing he has a real party in a week!). They gave him another stuffed animal in the OR. They flavored the gas with strawberry for him, and he didn't fight it as much as he has in the past. I gave him a kiss, made sure they would keep his lovey with him, then was walked out to the waiting area. I ran downstairs to get an early lunch then ate it in the waiting room and watched a show on my laptop.

After about 40 minutes the ENT came out. He said it had taken forever to get an IV in, but luckily Raul was asleep so didn't have to deal with the pokes! Raul did NOT have a notable amount of inflammation or blisters in his upper airway, which is great. They did find a "deep notch"/mild laryngo-tracheal cleft, but said it was very minor. It can make it more likely for him to aspirate, but they think he will be able to swallow better with his esophagus fixed, so did not think it needed to be surgically repaired.

Went back to the waiting room for a bit longer, and then the surgeon came out. He said that they found a stricture that had his esophagus 99% closed. On top of that he had a mucus plug about his airway and esophagus about the size of a quarter that they had removed, meaning he was essentially completed obstructed. The mucus plug alone could have been fatal if inhaled, and they said his stricture was so severe that it was considered life threatening as well. They could not get the guide wire with the balloon through the stricture from the top, so instead they went through his g-tube stoma and went up. Once through they were able to dilate to 16 mm, which is great! Before his esophagus had been smaller than a coffee stirrer!

Went back to waiting, and then was finally called back to see him. He was still totally asleep. Eventually they cleared us to go up to the floor as he was reactive to touch, though still not awake. He didn't end up waking until 4:30! We got set up in our room, and met the doctors up there. They decided to do an iron infusion to see if it would help Raul's anemia, as he was not yet low enough to need a blood transfusion. They let us go walk around the hospital for a while, which was nice, and we both liked getting out of the room!

While Raul was still sleeping, I got a visit from a few other EB moms whose children are at Cincinnati Children's right now! It was so nice to have visitors, and to have other EB moms to talk to! They were so kind, and brought us presents and balloons for Raul's birthday. I was not able to visit their kids, but keep them in your thoughts as they are having a hard time right now. We also got another present from Child Life, and balloons and a present from my parents! Raul ended up with a TON of balloons, which he thought was really fun.

Overnight was uneventful, but the nurses were loud, and his pumps kept beeping, so we didn't get much sleep. By morning he was ready for discharge, but it took until 1 to get everything done and his prescription filled. He will be on steroids for about a week due to the dilatation. They use them to slow the healing process so that the area they dilated won't just scar over and make another stricture. We went back to the hotel, balloons in tow, and settled back into our room. Raul had napped early at the hospital, so we just played and rested the rest of the day, and went to bed early.

Next day was our day to travel home, but we spent most of the day in Cincinnati. We played, and I packed, until 1 when we had to check out. Then we hung out in the lobby until our airport shuttle at 2:30. On the way to the airport we got pulled over in the shuttle for making an illegal u-turn! That slowed us down a bit, so our plane was already boarding when we got there. They stopped boarding for a minute so I could get Raul on. We had a lot of carry ons, and it is so hard to get the bags and Raul on while also having to leave/fold his stroller outside the plane! This time we had to sit next to someone else, and of course, Raul didn't sleep like on the way out. He screamed a bunch in the beginning, but did okay during the flight as long as he could use the DVD player.

Luckily it was a short flight, and it was so nice to be home! We spent the night at my parent's house after having dinner with my grandparents and sister, as it was late and we didn't want to have to drive back to our apartment. Raul went to bed late after not napping, so was a bit crazy at bedtime, but then slept well through the night, which was really nice!