Last night Autumn had her sleep study. I guess the night was good but not really sure how the results will look to her doctors. I should hopefully get a call from them in the next week to hear results. They had her on no breathrate all night. She is suppose to be at a 14 but we have been weaning her ourselves since she wakes up with too much breathrate and we have found she likes to stay between 6-10 breathrate. The breathrate is how many times a minute the vent takes a breath for her. It's irritating to her so she takes her vent off because it gives those extra breaths and blows pressure. Anyways, she did have some apnea episodes (which was expected). One time her oxygen saturations went into the 50's but she recovered on her own. The tech said she was dreaming at the time & it was not a severe looking apnea, just mild. I think she desatted about 8-10 times throughout the night. It may seem like a lot but without any breathrate, it's pretty good. At home, we would of already had a breathrate of 6 or 8 on her to keep her sats up. I do know she said her CO2 levels were good all throughout the night so that is really good. We will see what the drs think & recommend.
I picked Autumn & daddy up at 5am this morning. As soon as I got her home, I gave her a bath to get all that goop out of her hair...had to wash it 3 times & then finally comb it out. We left the house again at 8:30 to head BACK to Baylor to do her swallow study. I was so anxious about this appt. First off, I had no clue where to go because it was in the big hospital part & I am use to the other hospitals. I do not do well with the unknown. I also had my day nurse with me instead of my SIL & she is not quite as helpful. Jen just knows my thoughts before I even speak them & knows exactly what needs to be done without me telling. I asked for prayers & they were answered. My nurse did awesome meeting Autumn's needs while I go us registered & holding my ipad so Autumn could watch Elmo during the swallow study. The speech therapist was awesome as well. She let me do the feeding since I felt Autumn would respond better to me. She first had honey consistency & aspirated. We then tried nectar and she did fine. We tried pudding and she did fine with that as well. Lastly, we tried thin liquid and she aspirated again. Honey is between nectar and pudding so for her to aspirate it was strange. The therapist said they see the first bite aspirated the majority of the time so she think that is why she aspirated the honey. So, she is recommending we work on any consistency from nectar-pudding in feeding therapy & also recommending her for vital stimulation, which is electrical stimulation to help with swallowing. It can be helpful in strengthening, restoring function, and help remap the brain to swalllow. There can be issue with seizures though so tomorrow at her neurology follow-up I will ask her dr. if it will be safe for her. I think it may be really beneficial to her so we will see. ;)
So, I survived the 2 appts I was dreading this week & they ended up being better than I anticipated. Tomorrow during PT, Autumn is being fitted for a wrap thing that will help with her core strength in sitting. She also has a neuro follow-up & then we will be done with appts this week. Tuesday she has SB clinic which will be interesting I'm sure. Well, this momma is exhausted & it's time to relax & wind down for bed. Goodnight.
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