The build up to Ella's surgery was intense and now it's over. What a relief. Last week's trip to Chicago seemed like it lasted a month. So much waiting around and stressing.
We arrived in Chicago on Tueday night. After a pricy cab ride, we arrived at the Ronald McDonald House. Words cannot fully explain this amazing dwelling. It is an old mansion of sorts that is renovated into a large "house" designed to make kids that are undergoing treatment at local hospitals comfortable and provide a "home away from home". There are several sitting areas (with and without televisions), a large kitchen (more like 4 kitchens), a playroom, a library, a chapel, a game room, guest bedrooms and even a secret room that can be accessed from a hidden staircase inside a wardrobe. It was truly awe inspiring. Thankfully, every night that we were there (except Saturday night), there were volunteers that came in and cooked for the guests at the house. It was great!!! We also could cook whatever we wanted and they even had a pantry we could help ourselves to (donated food).
We headed to the Shriners hospital on Wednesday morning. Ella was very nervous and so were we. We had no idea what to expect and how we were going to keep Ella amused for the entire day (her surgery was not scheduled until Thursday). The staff at the hospital were amazing. They got Ella into her room (she had a room mate, but she was in ICU until Wednesday evening) and made her as comfortable as possible. They gave her food and drinks anytime she wanted, which made Ella very happy. Ella played in the playroom and outside on the playground.
Wednesday went pretty smooth. We saw many specialists that went over her health, what to expect after surgery and what her diet was going to be like. They were very attentive and thorough. I ended up having to lay next to Ella in the bed in order to get her to sleep so I didn't get a whole lot of sleep that night. (Those hospital beds were not very comfy at all.) She was allowed to eat until midnight and drink until 5am (although she did not want to wake up just before 5am to take a quick drink). Her surgery was supposed to be at 10am. It was a chore keeping her amused until it was time to be taken upstairs, especially because she kept saying she was hungry and thirsty. They finally called us upstairs and fear set in for all of us. Standing next to her in pre-op I was shaking and trying not to tear up. They gave her some medicine to help her relax and it totally knocked her loopy! She was completely punch drunk! It was funny and sad at the same time. They were not going to hook up any IVs until she was completly out cold, so that helped some. After they took her away to the OR, the only thing I could do is stand there and cry. I was scared of something going wrong. I was scared of what she would look like when she came out. I was scared of her being in pain. It took twenty minutes to stop crying. We then had a anxiety filled wait ahead of us. The surgery was scheduled to take three hours, but they would come out at the two hour mark and tell us how she was doing. We went downstairs to try and eat something, but it was hard to eat with everything on our minds. After we ate, we headed up to the surgical waiting area. I tried to pass the time by working on color guard stuff, but concentration was impossible. Two hours passed. No word. As we approached three hours, I started to panic. Why weren't they coming out to tell us how she was doing? Had something gone wrong? A thousand things began running through our minds. After three and a half hours, someone FINALLY came out and called us. They said Ella was screaming for Mama. I bolted down the hall, into the room and up onto the bed next to her. Thankfully at that moment, my Mommy Mode kicked in. I was no longer scared. I could only concentrate on taking care of her and helping her to stop crying.
After she settled down into a light sleep, I started to look her over. I felt sorry for her and wished she didn't have to go through this. She had blood on her face from her nose and mouth, her cheeks and upper lip were pretty swollen, she had arm restraints on both arms (to keep her from touching her mouth) and she had this string taped to her face! I sat there trying to figure out what it was. When she started crying, I was able to see that it LOOKED like it was tied around her tongue. Hmmm. That was interesting. It was not until she swallowed a couple mouthfuls of water (and cleared the blood in her mouth) that I realized it was NOT wrapped around her tongue. It was threaded THROUGH her tongue!!! I tried not to make a big deal over it, but it completely grossed me out. It seemed so inhumane. There would be no amount of consoling that would soothe her with that thing through her tongue. I sat in the chair with her (and the many wires she had hooked to her) across my lap for hours. I brushed her hair back over and over and rubbed her cheek. She would fuss every twenty minutes or so, but fell back asleep rather quickly. She wouldn't let me get up, even to go potty. She would completely melt down if I even mentioned it. Since I was in the ICU, I couldn't eat or drink either. It felt like an eternity sitting there with her. Over several hours, she continued to come out of the anesthetia. She kept asking for water right away (and juice) and made the nurse bring in a little potty for her (rather than having an accident in her pull-up). Eventually, I convinced Ella to let me put her up on the bed so I could lay next to her. I got a small window of opportunity to run to the restroom, even though she cried while I was gone.
That night was a long one as well. Ella fussed the entire night and I certainly couldn't get comfortable next to her on the bed. She would really fuss every four hours when the pain medicine wore off, unfortunately the nurses weren't bringing her medicine until they actually heard her screaming. I felt so bad for poor Ella. I cannot even imagine what was going through her mind. The next morning, they came in and took the string out of her tongue. That HAD to feel better. After the surgeon came in to check on her, they transferred her back down to her room (no more wires!). They told us that since she was drinking and going potty they would release her that evening IF we felt comfortable. We were only going back to the Ronald McDonald House so if there were complications, we could get her back to the hospital quickly. We wanted to wait to see if she was going to continue to take liquids and take a good nap.
Rob's Great Aunt Betty came to see us after we got back into the room downstairs. Ella was still really cranky and didn't seem at all interested in the stuffed green frog that Aunt Betty brought her. It was so nice to finally meet her! We had talked via email for years, but I had not met her. Rob had not seen her for many years so it was a nice visit. We gave Ella a bath and took her down to the cafeteria for lunch. She promptly passed out on the bench after eating a little jello, a little smoothie and some apple juice. She was (finally) released about 4:30 and we headed to the Ronald McDonald House.
The evening was pretty uneventful, which was GOOD! Ella wasn't drinking a lot, but she was drinking some. At bedtime, I laid her on the bed and she was out by the time her head hit the pillow. She was very restless throughout the night. Saturday we hung out at the house. We watched movies, played in the playroom and Ella took a good nap. It was nice to spend a casual day AWAY from the hospital.
The flight home was pretty uneventful too. Ella fell asleep just before we borded and woke up as we pulled up to the gate in Denver. The airport was an absolute ZOO because of the Democratic National Convention. We were glad to get out of that place!!!
Since the surgery, she has already starting making sounds that she had not been able to make before. Her voice is also different now. It's hard to explain. We are very excited to see what she can say once everything is all healed up!
I will post pictures on a separate post.
