Clare had a rough night last night. We are still in the hotel in Philadelphia, and she has had a LONG three days. She has had tons of fun, but everyone has been going to bed late and waking up early, so every night, Clare misses out on about 3-4 hours of sleep. She stopped napping over a year ago so she just goes, goes, goes all day and is like a little wilted, droopy flower by the end of the day. (She was the only child who did not sleep at all on the 7-hour car ride down here - even Jamie took a nap.)
The past two days have been in the 90's. We were not prepared for this heat wave and are not at home. Yesterday was my niece's Baptism. During church, Clare's face was flushed and you could tell she was feeling the heat. She has never been good in extremely hot or cold weather. Her body has a hard time adapting to temperatures, so if she becomes overheated, it is very difficult for her to cool down. The heat can also dehydrate Clare quickly, so we always have to be extra-diligent at getting fluids into Clare whenever it is hot. Thankfully, my sister Christina had filled up the kids' sippy cups with ice water prior to going to church, so Clare was able to drink that. Once we arrived at the air-conditioned restaurant for lunch after the Baptism, Clare cooled off and quickly regained her energy and charmed everyone there.
Once we got back to the hotel, Shawn took Jamie and Clare swimming (they had been begging all day), so come bedtime, Clare was exhausted. She also does not eat well when she is out of her home environment. Despite all our coaxing, I think she only ate two slices of cheese and some M&M's all day. Tired and hungry, Clare refused to even eat the offered pop tart at bedtime (one of the only things we had to eat in our hotel room at 9pm that Clare could actually manage) and melted down instead. She finally feel asleep exhausted, but woke up continuously in the night crying. Part of the time, she was not even awake, so Shawn and I alternately rubbed her back until she fell asleep again. One time, she was awake and that is when she told me that her left arm hurt. She had her pajama sleeve pushed up past her elbow on that arm (she does not like her sleeves pushed up, so this is unusual behavior for her) and kept complaining that it hurt. I felt her fistula and it was thrumming rapidly. I did not know what else to do, so I gave her some Tylenol and sat with her for a long time, stroking her head, until she eventually settled down and fell asleep again. I think that was around 2am. Now it is almost 7am, and she is still sleeping.
After that initial phone call on Thursday to schedule Clare's procedure, we have not heard back from Children's Hospital yet with more information on what the "procedure" entails. We are journeying home today, so I am planning on calling the nurse tomorrow who we dealt with while we were down there a couple weeks ago and demand some answers!