One 5:00 am wake-up call + 2 hours in pre-op + 4 hours in the OR waiting room + 1 hour in recovery + 22 hours in a hospital room = 1 VERY LONG SHOWER!
We headed to Cincinnati last Wednesday. We wanted to get there a day early so that we all could get rested up before the surgery. We decided to drive this time, and Joe and I are so glad we did. The drive there only took about 9 hours and that included a stop at Cracker Barrel for dinner. It was much easier than we anticipated and the scenery was beautiful! West Virginia is one of the prettiest states I’ve ever driven through.
Thursday was relaxing day. We didn’t do much of anything other than eat and go see a movie.
Friday was the big day. We had to be at the hospital by 6:30 am, so we woke up at 5 just to make sure we had everything we needed. We let Ella sleep and just took her to the hospital in her pajamas. She kept asking where we were going, so we told her that we were going to see our friends. She was definitely confused that we let her stay in her pajamas. She knows that we don’t wear our jammies outside of the house. Ella has great intuition, and she knew from the start that something was going on.
When we arrived at the hospital they immediately got us checked in and took us back to the room to prepare for surgery. Immediately Ella said, “Wait a minute! These aren’t our friends…these are DOCTORS!” We then launched into a discussion about how doctors ARE our friends and how they just want to help us.
Each doctor took as much time as needed to meet with us and talk about what was going to happen. We were able to ask any questions and felt comfortable with the whole process. It was comforting to get there and they knew exactly how to prepare everything for a kid with EB. They had a special packet of Mepilex, Mepitel and Mepitac. I realize this means nothing to most of you, but for us that was major! The fact that they even had that stuff in the hospital was huge. In fact, I had packed all of those supplies in my purse to make sure they were using the right stuff. They even have special kits for intubation that are only used on EB patients. They have figured out the best way to intubate them with the least amount of damage.
The nurses let Joe carry Ella down to the operating room, he laid her down on the operating table and we kissed her sweet face. They put the mask on and soon she was sound asleep…snoring and everything. The walk back to the waiting room was the hardest walk of my life. We both cried the whole way. Within about 35 minutes the surgeon, Dr. A, came out to tell us how his portion of the surgery went.
He gave us this great photo to help show what had been done.
The photo on the right is Ella’s throat before the dilatation. You can see that it narrows in the middle. He said it was about 50% closed, which is better than the 70% he originally thought. The photo on the left is after the dilatation. Ahhh, nice and open. Hopefully this will be one step in helping Ella eat more.
As glad as we were to have that portion of the surgery done, the dilatation was the easy part. Next came the dental work. That took the next 3 hours. The surgical staff was great and would call every hour and give us an update on how things looked and where they were in the process. When the surgery was complete the dentist came out and gave us a complete rundown on the state of her mouth. In the end she needed 2 caps and several cavities filled. When we got back to the recovery room her poor mouth was so swollen she looked like a little chipmunk. She kept trying to tell me that she had something in her cheek and would open her mouth so I could see. It was so sweet. They gave her Tylenol for the pain and as soon as that kicked in she was back asleep. She slept through being transported to her room and slept through being moved from one bed to another. She even slept through Joe and I chowing down on Chipotle (which was good since she still couldn’t eat for 6 hours after surgery).
She woke up at 4:30 and the first words out of her mouth were “I’m hungry!” We had to distract her for the next hour and 15 minutes (thank you Tangled) until her food ban was lifted. At exactly 5:45 pm Ella started eating. She polished off a scrambled egg, 2 hard boiled eggs, chocolate pudding, a Nutragrain bar, a chocolate doughnut, 4 pieces of bread with butter and 2 juice boxes. Yeah, she was pretty hungry. Once the food was in her and she started feeling more perky, she was ready to get out of that bed! Joe and I were completely exhausted, but Ella had slept all day so she was ready to get moving. She and Joe walked all around our floor looking at all the pictures on the wall and talking to the nurses.
That night all 3 of us stayed in Ella’s room. Neither Joe nor I were going to leave that hospital room. Joe laid with Ella in her bed for awhile, but she only liked that for a little bit, then said, “Daddy, you’re making me hot. Please go away.” That meant that Joe and I shared the pull out bed…yes, it was a twin size… no, I didn’t get any sleep. Ella woke up at 4 am, so I went and slept with her for a little bit, then she kicked me out too. At 5:30 Joe woke up ready to face the day, so he headed downstairs to the cafeteria to read the paper, and I got in a solid 2 hours of sleep. Ella ate another large breakfast of 2 bowls of cereal and a scrambled egg, then we were discharged. The hotel had never looked so good! I took the longest shower of my life and loved every minute of it!
Ella’s recovery has been great! Her mouth was sore for the next few days, but as long as we gave her Tylenol she was able to eat fine. Ella had very minimal damage. There was one little spot next to her right eye, and of course her lips were pretty banged up, but that’s it. While she was in the hospital she got an iron infusion (to help with her chronic anemia…common in EB) and both Joe and I think that has helped her a lot. She is quite the little trooper and has bounced back better than I expected.