I like to call this one "Bad Hair Day"
So last night Makily and I drove to Orlando for her sleep study with C-PAP trial.
It sucked.
I knew it would not be enjoyable but didn't realize there would be times I would want to start crying myself.
Thankfully we got the same guy we get every time we go so he remembered Makily (she IS unforgettable you know!?). He has a special needs daughter too so that always is a plus.
He put all the stuff on her for the sleep study part. This includes LITERALLY 30+ wires from her head to her toes and three belts strapped to her chest/abdomen. Plus of course she was hooked up to the feeding pump for her overnight feed. To say she was tethered down is an understatement.
She was very cooperative with the "wiring" part until we got to her face area and everything went downhill from there. She cried and cried.
Then we had to get the c-pap mask on her.
OH JOY, OH BLISS!
The tech and I agreed that the best thing to use was a full mask covering her nose and mouth because Makily is such a mouth breather at night. So that's what we started with. SHE WAS PISSED! It took several tries to get it adjusted just right. I had to assist the guy and hold Makily down at the same time.
I felt like I was wrestling an alligator. This kid sure can wiggle out of things and fight when she wants to. I am almost 100% positive she kicked the guy in the nards at least once maybe twice actually. I apologized and then giggled on the inside to myself.
We finally get the mask on right and he turned the C-PAP on.
MAKILY FLIPPED OUT!
She panicked and was SCREEEECHING while trying to pull it off. She had such a scared look on her face and kept reaching towards me and crying. I really wanted to cry for her. I couldn't even pick her up because she is connected to all these wires, wires that if they get pulled off have to be put back on and I didn't want to go there again. She was so upset. The tech told me it was normal and that once she realized she could breathe with the machine she would be okay....I wasn't convinced. What sucks is she had no idea what was going on and I am sure it really was scaring her with this huge thing on her face blowing air on her.
He turned off the light and left the room while I laid in the bed with her and sang "My Kily" (My Bonny lies over the ocean....except I put in My Kily, she thinks this is great). She cried for about 20 minutes and then all the sudden got really still and quiet. Her eyes were still open though and it freaked me out. I was afraid to move for fear she would freak again but on the other hand I was worried that she just all the sudden chilled out. I got up to get the tech and she started freaking out again. The tech came in and said she was fine, I told him I had gotten concerned and he said that there was no seizure activity and that she was okay.
So we went through another 20 minutes of crying and fighting until she calmed again. She would fall asleep for a few minutes and then wake up crying.
We took the full mask off after about an hour and put on just the nasal mask. She HATED this too but tolerated it much better than the full face mask and actually closed her mouth while she slept which really surprised me. I tried getting out of the bed a few times and she WOULD NOT allow me to leave her side. It made me feel good.
The tech came back in about 4:30 am and said he had enough of a reading for the doctor to review. He said that Makily is a tricky kid and that he had a hard time getting just the right settings for her during each stage of sleep. He said he didn't find one particular setting that is perfect for her but that the doctor who reviews the study will go over it all and decide where to go from here.
I am so tired but am so awake I can't even sleep. I slept maybe two hours when we got home and have been up ever since.
I need a Margarita.
I'll leave you with these pictures from the last several days.
This morning before her bath after her sleep study:
Her lovely hair
Splashing the water
Yes I successfully taped my glasses "nerd-style". It took some doing but Allen and I got it done. I wore them for the drive to Orlando last night. I was sure to take them off before I went in for the sleep study for fear they would think I lost my mind....and I have.
It's sexy right?
My sweet girl in all of her BLUE EYED BLONDE HAIR glory! ;-)
**Michele recognize the outfit?**
Sleeping on the couch now.....(the red spots on her face are left from the electrodes stuck on her head)
So last night Makily and I drove to Orlando for her sleep study with C-PAP trial.
It sucked.
I knew it would not be enjoyable but didn't realize there would be times I would want to start crying myself.
Thankfully we got the same guy we get every time we go so he remembered Makily (she IS unforgettable you know!?). He has a special needs daughter too so that always is a plus.
He put all the stuff on her for the sleep study part. This includes LITERALLY 30+ wires from her head to her toes and three belts strapped to her chest/abdomen. Plus of course she was hooked up to the feeding pump for her overnight feed. To say she was tethered down is an understatement.
She was very cooperative with the "wiring" part until we got to her face area and everything went downhill from there. She cried and cried.
Then we had to get the c-pap mask on her.
OH JOY, OH BLISS!
The tech and I agreed that the best thing to use was a full mask covering her nose and mouth because Makily is such a mouth breather at night. So that's what we started with. SHE WAS PISSED! It took several tries to get it adjusted just right. I had to assist the guy and hold Makily down at the same time.
I felt like I was wrestling an alligator. This kid sure can wiggle out of things and fight when she wants to. I am almost 100% positive she kicked the guy in the nards at least once maybe twice actually. I apologized and then giggled on the inside to myself.
We finally get the mask on right and he turned the C-PAP on.
MAKILY FLIPPED OUT!
She panicked and was SCREEEECHING while trying to pull it off. She had such a scared look on her face and kept reaching towards me and crying. I really wanted to cry for her. I couldn't even pick her up because she is connected to all these wires, wires that if they get pulled off have to be put back on and I didn't want to go there again. She was so upset. The tech told me it was normal and that once she realized she could breathe with the machine she would be okay....I wasn't convinced. What sucks is she had no idea what was going on and I am sure it really was scaring her with this huge thing on her face blowing air on her.
He turned off the light and left the room while I laid in the bed with her and sang "My Kily" (My Bonny lies over the ocean....except I put in My Kily, she thinks this is great). She cried for about 20 minutes and then all the sudden got really still and quiet. Her eyes were still open though and it freaked me out. I was afraid to move for fear she would freak again but on the other hand I was worried that she just all the sudden chilled out. I got up to get the tech and she started freaking out again. The tech came in and said she was fine, I told him I had gotten concerned and he said that there was no seizure activity and that she was okay.
So we went through another 20 minutes of crying and fighting until she calmed again. She would fall asleep for a few minutes and then wake up crying.
We took the full mask off after about an hour and put on just the nasal mask. She HATED this too but tolerated it much better than the full face mask and actually closed her mouth while she slept which really surprised me. I tried getting out of the bed a few times and she WOULD NOT allow me to leave her side. It made me feel good.
The tech came back in about 4:30 am and said he had enough of a reading for the doctor to review. He said that Makily is a tricky kid and that he had a hard time getting just the right settings for her during each stage of sleep. He said he didn't find one particular setting that is perfect for her but that the doctor who reviews the study will go over it all and decide where to go from here.
I am so tired but am so awake I can't even sleep. I slept maybe two hours when we got home and have been up ever since.
I need a Margarita.
I'll leave you with these pictures from the last several days.
This morning before her bath after her sleep study:
Her lovely hair
Splashing the water
Yes I successfully taped my glasses "nerd-style". It took some doing but Allen and I got it done. I wore them for the drive to Orlando last night. I was sure to take them off before I went in for the sleep study for fear they would think I lost my mind....and I have.
It's sexy right?
My sweet girl in all of her BLUE EYED BLONDE HAIR glory! ;-)
**Michele recognize the outfit?**
Sleeping on the couch now.....(the red spots on her face are left from the electrodes stuck on her head)
