Hi Friends (:
Sorry to leave you hanging yesterday. My heart is so heavy for the MacDonald family it was hard for me to consider writing about anything else.
To catch you up on Evie. The reason she didn't have her ABR today is that she has croup, a nasty upper respiratory bug that makes anesthesia out of the question. It would be unsafe to intubate Evie unless she is in tip top shape, so we will pray for that up to July 5th when she is rescheduled to have the test. On Sunday morning she woke up feeling great, we went to church and lunch and all was well. When she woke up from her nap we noticed her breathing loudly, and by evening she was really struggling. We took her to the ER where she had an episode where she couldn't catch her breath, so they did an epinephrine breathing treatment and admitted her for the night for observation. I'm really glad we took her in, if she had the episode at home we would have most likely had to call the ambulance.
It was funny driving to the hospital Sunday, I shed a few tears and caught myself feeling ashamed. Driving to the hospital last year would have been second nature, but this time I was crying! I feel like I've gone soft and my Emergency Training of Evie's first year of life has gotten weak, but it's also refreshing to realize that a trip to the ER isn't necessarily normal, and I am allowed to be upset.
Also along those lines, last Friday we went to walk around the College World Series opening day with my sister and her son. We were walking around with Evie and her cousin in the double stroller and they were poking each other (a little too much like siblings!) and Evie was getting visibly upset. I bent down to comfort her and noticed her front lower TOOTH was GONE! The older kids who have HPP have been known to lose their teeth early, but I guess I assumed since she was on the clinical trial she wouldn't lose her teeth, but she did. I called her dentist (my dad) who said he'd like to take a look at the tooth so we spent a few minutes looking before realizing that every piece of popcorn, chip and sunflower seed looked like a tooth (: Oh well, we'll catch the next one.
Lastly, we got the results of her sleep study back, and it's confirmed that she has Sleep Apnea. Her pulmonologist explained the two types of apnea: obstructive (something is in the way) and central: where one just doesn't make an effort to breathe. Evie has "central" apnea, meaning that while she's sleeping at times she just doesn't make an effort to breathe. Comforting right!? Since we keep her on O2 all night anyway that should be sufficient for now, and I am supposed to talk to her other physicians to see if central apnea is common with HPP. It is likely that as her brain matures she will grow out of it.
So we see the pediatrician tomorrow to make sure that we are keeping her croup under control, and pray that she feels better soon. I think she is making improvements each day.
Thanks for praying for us, today was the FIRST day in weeks that we've had nothing on the calendar. It was so wonderful. There was a crazy storm that went through Omaha last night, knocking over our one and only tree, so the girls and I spent a few hours chopping it down and getting rid of it, but it felt good to be outside and under no pressure of a schedule. I really needed that.
Continued prayers for the MacDonald family would be appreciated. Thanks for loving us friends, and I promise pictures soon! I have a whole batch waiting to be uploaded (: