Makily + Sleep Study + C-PAP = NIGHT FROM HELL

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)

Whirlwind...

This week has been crazy!

Allen had to have a sleep study on Monday night. He snores like a freight train. So bad that at times I end up getting up in the middle of the night move to the couch.



I figure hey, he has to sleep in a truck during the week for work, I can sleep on the couch when he is home so he can have a bed.

It's a fair trade right?

It's gotten much worse the last couple of years. I half jokingly have been telling him that he dies several times a night. I watch him sleep and have noticed that often he tries to take a breath in three or four times, then usually he will gasp, yell in some strange language (this part usually makes me giggle) and then go back to snoring. I will admit though I have thought of putting my pillow over his head to shut him up (not really people come on now!). He can't help it but really at 3 am when I am desperately trying to sleep all I can hear is his insane SNORE and I start to get mad.

Finally after my nagging him to death for the last three years...he decided to go see a Pulmonologist whom immediately gave him a c-pap just from hearing the description of what Allen does in his sleep. So here is the incredibly sexy mask my man gets to wear at night. (by the way this is not Allen, if I posted pictures of him with his mask on I may have to come live with you).



I know it's hot right?

Imagine this contraption on his face PLUS an even cooler chin strap around his head to keep his mouth closed. When Allen told me about having to possibly wear a chin strap we both hysterically laughed. I mean is it possible to make my poor husband look anymore ridiculous in his sleep? We have lovingly dubbed him "Chinstrap Caldwell".



The FIRST night Allen had the cpap I was totally amazed, he didn't snore...or gasp one time. So he had the sleep study Monday night and his appointment to go over it Tuesday. The Pulmonologist told us Allen has SEVERE obstructive sleep apnea. He had 150+ apnea episodes and desatts down to 73%. Scary. During the sleep study they did try the chin strap on him because he kept opening his mouth in his sleep. The woke him up a little later to say the chinstrap was not working and Allen was STILL opening his mouth. Allen says "that chin strap just got in my way". I'm still calling him "Chinstrap Caldwell" though, it just has a nice ring to it.

Yesterday we took Makily to Sea World. It was a total blast and because our niece is an employee we got in free. All of Allen's family went and we really had a great time. The dolphin show seemed to be Makily's favorite this time. That and of course the "Oddysea" show. She laughed like a maniac through that one as always.

Still working on our fostering license. I have officially stopped holding my breath on that. Seems like we get EVERYTHING done and they come up with something else we need or some other piece of paper work they want. I just do whatever they tell me as quickly as I can (usually THE DAY they tell me) and hope that the next call will say we are licensed. This week we had to answer FIFTY more questions about our lives and childhood (50 for each of us by the way so really 100). The questions were all things we have answered before. To say it annoyed me to do it all over again for the 5th time is an understatement but give me a hoop, I'll jump through it. Then I had to send them our renewed car insurance cards, and get ANOTHER reference. THANKS DANA, I love you girl for doing that on such short notice.

I heard back about Makily's small bowel follow through.

It's normal.

*sigh*

I know I should be happy but really I am not. This poor kid has chronic constipation or diarrhea and retches at least 2-3 times a day. I was convinced that her intestines were not moving like they should. I was wrong. The test says they are fine.

HOW IS IT THAT HER INTESTINES MOVE NORMALLY BUT SHE IS EITHER CONSTIPATED OR HAS WATER DIARRHEA!?

I don't know.

We see gastro in two weeks and I am sure he will go over it then. The retching really just breaks my heart. She looks so scared and out of control. I can't do anything about it when it's happening except say "It's okay Makily, breathe baby, catch your breath". Usually it just makes me cry.

Gee what a lot of help I am.

Makily goes back to Pulmonology next month for a second sleep study for HER sleep apnea. They are going to try her on c-pap to see how she tolerates it. She hates things on her head or face so I am not sure how this is gonna work. She surprised me in the hospital in December when she wore the mask then so maybe she will do it now!?

I can't believe I am going to be living in a house with two "Masked Avenger's".