This week definitely did not go as well as I had hoped. It all started Monday when before bed Audrey was complaining on leg pain. I gave her Motrin but since it was before bed I didn't want to give her the whole "pain cocktail" with the caffeine and all. By 130am she was awake crying in pain. Two hours later she was finally back to sleep but 5 am seemed to come very early.
On Tuesday Audrey had her altitude test scheduled. I did not really know what this test would be like or how it was done. Basically I held her on my lap while they put a pulse ox and special nasal cannula on which measured her CO2 levels. She wasn't thrilled with this as she was still tired from her interrupted sleep the night before, however, some crayons and a Hello Kitty color book did the trick in distracting her. They measured her baseline for 20 minutes. Then they put on a face mask and gave a mixture of oxygen and nitrogen mixed to simulate being at 5000ft altitude. This was where the trouble really started. 2 years don't like face masks. Tired, crabby 2-year-olds really don't like anything so she screamed for the next 15 minutes. Stiff, and red, and screaming her head off. Finally after 15 minutes she fell asleep. Then they changed the oxygen mixture again until it simulated 8000ft. Being in the medical field I watched as her oxygen saturation slowly fell, her Co2 levels slowly went up and her respiratory rate stayed the same. After 20 minutes they said we were done and we woke up my screaming, tired two-year-old. In my head I knew what I saw but I had to wait for the doctor to tell us what the results were. The rest of the day Audrey had a headache. She fell asleep by 3pm and didn't wake up until 6am the next day when I got her up for school. This much sleeping was something she hadn't done since she started her mito cocktail but she had a rough couple days so maybe she was just tired.
Wednesday, Audrey did ok. She woke up with muscle pain again and was tired but otherwise ok. I spent the day at work on this "retreat." I was supposed to learn about "being here now" and learning to appreciate people in my life. It was a very long day in which none of my work in the office was completed. On the drive home I was able to reflect on this message and apply it to what was going on. "Being here now" is something I need to focus on for Audrey's sake. I can't worry about what may or may not happen. I need to live in the moment and enjoy what I can. Maybe it was not such a wasted day...
Thursday I met with Audrey's pulmonologist. Since I work with her every Thursday, I luckily did not have to wait until her next appointment in December to get results! As I had known on Tuesday, the results were really abnormal. There seems to be a disconnect between Audrey's brain which says your oxygen is low breathe faster and deeper and her respiratory muscles which also seem weak. Not only did her oxygen go low during the study but her Co2 went up and her respiratory rate never went over 20 (which is a normal rate at rest but not under stress). This means that anytime Audrey is in over 5000ft elevation she needs to be on oxygen around the clock. It also confirms that when she plays a lot she has to wear oxygen because for some reason her body doesn't know "when I run I must breathe faster." I took the news well. I continued my long day and wrapped things up at work. When I got home and I told my husband the results, I broke down. I work in the medical field, I know what this means. If she were to get worse she would lose her drive to breathe at all, even during rest. After realizing my fears out loud I was able to "be here now" and rationalize that for now it's ok. She doesn't mind wearing the oxygen and it doesn't seem to limit how she plays or enjoys life. We don't know what she will face in the future but we have to deal with that when it happens, this reality is certainly not what we would have predicted a year ago.
And now it's Friday. It's 3 am and I'm already awake which is already a bad sign. Audrey begins her feeding therapy today, so even though it's my day off, we have to go back to the hospital to start that. After that we have to run home to catch her oxygen delivery and let her nap and then it's off to the cub scout meeting with Jacob. It's another long busy day but I will keep thinking of the "be here now" motto and hope things get better.