I hate when I have something super important scheduled for the early morning because you can never the sleep the night before. I usually set 2 alarms but invariably I wake up every hour look at the clock and do a mental count down how many hours of sleep I have left. Today I had to wake up at 4 am because we had to be at UCLA for Tiara’s MRI by 6am. So all night long I dreamed of missing the appointment and constantly woke up to do the countdown. I woke up on time only to realize I then had to make the drive.
I am not sure if I have mentioned this but I have serious issues with driving in the dark, in the carpool lane, over bridges, over really long overpasses and up mountains. Lot of issues with driving, nevertheless I still drive everywhere despite my anxieties. I just do a lot of deep breathing and talking out loud. Tiara thinks it is really funny and is always laughing at me. I am not afraid to drive in the dark, I just see halo lights and all the lights on the cars and the reflectors start to blend together and I freak out. I have noticed that if I am not wearing my contacts the problem is not as severe so today I decided I would put my contacts in after we arrived. Good move. Luckily, we made it in record time and there was no traffic so I did not have to enter the carpool lane in the dark. Phew!
TT was in a good mood because I let her listen to the theme song from “Titanic” the whole ride. We never listened to another song the whole hour. You may think this would drive me crazy, but just the opposite. If I can find something she likes and she behaves good, I just go without. It allows me to be in my own little world without constantly having to answer her questions or threaten her to stay in her seat.
The good vibes continued once we arrived and saw the anesthesiologist from her first brain surgery. We saw the sweet GI doctor who put in her first G-tube and my favorite cafeteria lady was working the Starbucks counter. For two and half months I spent most every morning chatting with this nice lady. I actually miss all the doctors, nurses, social workers, child life specialists and cafeteria workers that I saw everyday for 75 days. I feel rather at home at UCLA Medical Center, strange but true.
Because I am only on week 4 of my journey with Tiara, many of you don’t know that last year Tiara had brain surgery on April 28. Things went as planned in the surgery room but Tiara had several complications during recovery that normally in most people would not be a big deal but they became catastrophic for her. She was in the ICU for 2 months and then stayed on the regular floor for 2 additional weeks, followed by a 2 week stay in a rehabilitation home. I lived at UCLA with her and only left a few days during the entire 3 months so that is why it feels like my second home. I will go into more detail in the future about this horrifying experience.
Once again it took the anesthesiologist 4 tries to get in the IV but she finally got it so Tiara was able to get her MRI. During the MRI I sat in the waiting room with another mother and her 9 year old son. This cute kid was waiting to get an MRI of his stomach and they were trying to make him drink 2 huge bottles of Barium. He kept coughing and saying it was burning his throat and stomach. His mom was getting mad because if he didn’t drink the barium they couldn’t do the test and he had been so sick she was really worried about him. I felt so bad for him and I just kept thinking if he was dying they would figure out a way to look at his stomach without him drinking all that crap. There has been so many times in this journey with Tiara that doctors have been unable to test her or perform certain procedures on her because she just can’t or won’t comply. It used to be so frustrating but I now know it is what it is. If she can’t do the crazy test they will have to figure it out another way. Luckily this poor mom hadn’t endured enough medical problems with her son to have this frame of mind so I felt compelled to give her a few pointers. I told her I doubted he had to drink both bottles for the test to work. He was a really little kid and I suggested she say a few certain words to the tech and she may change her mind. Fortunately when I left they had agreed the radiologist would perform the test after he drank only one bottle of Barium because of his size. I hope it worked and they find out what was wrong with the little kiddo.
And so Tiara had the MRI and we met with her neurosurgeon 3 hours later. UGH. Love sitting in the Prius in the parking lot for hours, but at least we had her music, photo albums and coloring. Of course he was sad to report he did not have any more tricks up his sleeve for Tiara. She is returning to a state similar to before her brain surgery and no one seems to have any more options to present. He suggested I email a specific doctor who is a known expert on Tuberous Sclerosis, and see if she had any ideas that he or all the neurologists at UCLA have yet to discover. He didn’t seem hopeful but it was a suggestion and you never know. So that will be my project for this week along with meeting her Regional Center team tomorrow to discuss her behaviors. So happy today is over. Time for wine!
Happy Tuesday Everyone…
