Monday, January 28, 2013

December and January

Wow. Things have been busy. Taleah has been involved in so much.. which has resulted in a few fevers. Not my favorite and trying to decide if it is worth it.

We had a trp to PCMC in December. Let's just say that it was a failure in a lot of ways. The angel flights were canceled... had to buy 2 one-way tickets (long story). It was our first time with the two of us at clinic. I am a wimp and sedation was extra rough. They were unable to get the LP after 7 attempts/pokes. She was sedated and they had to keep giving her more to keep her from remembering. I was in tears, they were frustrated and we didn't even get it. Therefor, she didn't get her intrathecal chemo this trip. They assured me that it wasn't a big deal but as a mom I worry (and still do). She had so much sedation that she threw up for almost 12 hours. These hours included driving a rental car, dropping it off, going through the airport and attempting lunch, going through security, having a delayed flight. It was heartbreaking. I hated EVERY second of it.

 She seriously couldn't walk for 2 days. Sitting on the toilet was so painful and she would cry out. And she hates sedation anyways so this confirmed her feelings and how she never wanted to go again. I tried to explain to her that this is supposed to save her life, but she is 3. It took a long week of steroids and pain but we made it through. She was anxious to get back into the swing of things. She hates missing out.

Fevers. Freakin fevers. I hate them. Somehow we have ended up with a few. The nose swab has been a winner for finding a cause but Taleah HATES it. I don't blame her. She has ended up with RSV, Adenovirus, and one other. She has fought them fairly well but fevers mean hospital visits. Extra blood draws, vitals and long stays at the hospital. Luckily, her counts have been high enough that we haven't been admitted but it's still not fun. Often times it ruins the plans we have or are doing.

Weekly starburst wrapping. It gets old but anything to get this medicine in her. She has just recently found out about the actual pills inside. This entire time I have been doing it in secret. Her new found knowledge has been helpful.