Saturday, February 15, 2014

Much Overdue Lily Medical Update

I have been meaning to sit down and give an update on Lily's surgery and progress since it happened last Monday, and I just haven't found the time! And it has taken me three different occasions to finish this post. So here goes:

Monday we woke up bright and early and headed up to All Children's with Lily. We got her all checked in and were quickly called back to the pre-op area. We had a quick visit with the RN, anesthesiologist, OR team, and Dr. Ruas. Then we waited for our turn. And we waited. And we waited some more. Turns out our surgeon works faster than the hospital's sterilization machine so they bumped a few surgeries in front of us while they waited for the machine to finish. Lily was a trooper, even though she wasn't allowed to eat since the night before. It helped that Brian found these mobile stairs they use for rehab and let her climb up and down them over and over again. Finally it was our turn and they took her back.

She always cries when we hand her off to the nurses, then they take her down the hall and use the mask to make her sleepy. Then they put in her IV and start the surgery. This surgery was a rather quick procedure (the lip and gum line repair will be much longer) so we waited in Dr. Ruas's conference room. He came out about 20-30 minutes later to let us know that everything had gone well. Then we had to wait another 30 minutes or so while Lily was in recovery so we decided to head down to the cafeteria to get some food. All Children's has these beepers like you'd get in a restaurant that they use to tell you your child is out of recovery. Ours went off right after we went back upstairs to the surgery waiting room. We were led back to the post-op area and found our sweet Lily asleep in a nurse's arms. She handed her off to me and I just sat and held her while they monitored her. Apparently she was super mad when she woke up and nothing would calm her down so they gave her some morphine.

After her vitals were registering consistently for about 10 minutes it was time for us to head up to our room for the night. Since Lily was still asleep I was able to carry her up instead of putting her back on the stretcher. We continued our peaceful cuddling time for another half hour or so, and then little miss Lily woke up! At first she was pretty groggy and just kept looking at us sleepily. Unfortunately this was quickly replaced with lots of screaming when she realized that her arms were restrained with no-no's. For those of you unfamiliar with these lovely things, they are hard plastic tubes covered in fabric that Velcro around her arms and attached together with a strap behind her shoulders and back. Considering how much she hates her carseat and ergo carrier, I knew we were going to be in trouble with these things.
The next several hours are kind of a blur. They were filled with lots of screaming, lots of crying, us trying every trick in the book to calm Lily down, and finally ended with some additional morphine. She finally was able to settle down and sleep a bit longer, but not much. We finally realized that maybe she was hungry and needed to eat something. We had asked Dr. Ruas immediately after the surgery if she needed to eat anything different, and he told us that we shouldn't have to change her diet too much. Then the nutritionist came in and told us that Lily would need to be on a full liquid diet until her next surgery. That pretty much left us with options of oatmeal and chicken broth for a month. Have you seen this girl eat? I don't think so! The SLP said soft foods, and the nurses were on team liquids. Thankfully our nurse realized that Lily was much older than most CLP kids, and since she had done well drinking water she got us some pudding to try. Lily really enjoyed that chocolate pudding, and started to act more like herself. It was also at this point that we decided to take her no-no's off. The combination worked, and she was finally playing and smiling again! She was definitely still more clingy than normal and I was anticipating a long night with her sleeping on me.
Brian snuck off the cafeteria to get us some dinner, and we took turns eating across the room from her so that she wouldn't get upset about not being able to share our pizza. I was pretty exhausted from holding a screaming toddler most of the day, so around 7:30 I lay down on my "bed" for a few minutes to rest before I had to hold Lily and sleep. The next thing I knew it was midnight, Lily was asleep in her crib, and Brian was asleep on the couch. Score! Lily was stirring because it was time for her next dose of pain medicine so we called the nurse in. She took it well, but then wanted to snuggle with me. She slept on me for about 30 minutes and then I put her back in the crib. The pattern repeated every 4 hours when her pain medicine wore off. A much better outcome than I expected!
Since we would be discharged in the morning, Brian left early to go to work so he wouldn't have to miss a surgery day. I was excited because I planned to get up with him around 6:30 and then have an hour to myself before Lily woke up. As he was about to walk out the door, the resident who works with Dr. Ruas came in to check on Lily. Much to my dismay, she flipped on all the lights and then went over and opened Lily's mouth. So much for some alone time. Lily was mad, and nothing I could do would calm her down. She was awake too early, tired, hungry, still with an IV in her foot, and in a strange place. Finally I decided to take her down to the playroom on the floor. She wouldn't leave my lap, but at least she wasn't crying. She played on me for about 15 minutes and then ventured away. She discovered a shopping cart and disappeared into the hallway. I knew that a shift change was about to happen and I wanted to let the nurse know that we wanted to be discharged ASAP so I coaxed Lily and the shopping cart down the hall back to our room. Sure enough the nurses were in there, and after reporting what the resident told me said that we could be discharged sometime this morning.

We went back to the playroom until it was time for Lily's next dose of pain medicine. Then it was all I could do to keep her entertained while we waited to be discharged. And waited. And waited. Thankfully she found it great fun to climb in and out of the stroller they had brought us and fasten the seatbelt. Finally at 11:00 they told us we could leave! They took Lily's IV out, had our prescription ready at the pharmacy, and off we went. Lily was obviously exhausted, and any time she is even a tiny bit tired or hungry in the car she cries. So I knew this was going to be a fun ride. Sure enough, she was not happy to be strapped in, especially with her no-no's. She started crying in the garage and didn't stop. And lucky me, there were two accidents on the Skyway so it was bumper to bumper traffic literally from the toll plaza to the base of the steep incline. A 35 minute trip took over an hour, with her screaming almost the entire way. I had to stop by Rowlett first to get the minivan from my dad, then head straight over to the preschool to get Matthew and Caroline. We finally made it home around 1:30. Hallelujah!

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