Monday, Getty and I went to her sleep study at the Kaiser sleep lab. Mark was staying home to look after Cooper.
It was a routine overnight sleep study to monitor Getty’s breathing and other things while she slept. They would measure all kinds of things, but the biggest issue was whether her bipap settings would change based upon the sleep study. Apparently, the monitoring equipment in the sleep lab is better for a full sleep study than the equipment used to set her bipap up in the PICU.
We established the January sleep lab appointment right before Getty’s surgery last November. We have been eagerly waiting to get this study done so we could learn more.
The appointment started at 7 p.m. About two hours earlier, Mark and I started packing for the one-night stay.
Now let me start by saying that although it is just a one-night stay, one night for an SMA family means so much more than you might think. I am going to make an assumption that for most parents, overnight packing for a child might include clothes, food, diapers, wipes, perhaps medicine, and some toys. I am sure I am forgetting something, but in my mind that sounds like a reasonable amount of “equipment” to get a little bugger through the night. Also, be aware that the sleep lab is not equipped like a PICU with all kinds of things; it’s basically just a bedroom with motoring devices in it.
So the packing began. We loaded up the suction machine, oral suction catheters, olive tip nasal suction catheters, suction power cord, suction carrying case, pulse oximeter, pulse ox power cord, pulse ox probes, Kangaroo Joey feeding pump, feeding bags, decompression tubes, feeding pump power cord, venting tube, Farrell bags, Trilogy 100 bipap machine, bipap mask, bipap power cord, humidifier, bipap tubing, cough assist machine, cough assist tubing, cough assist masks, cough assist power cord, stethoscope, Neosporin, Q-tips, thermometer, Tylenol, Miralax, feeding bottles, formula, PJs, t-shirts, pants, socks, blankets, toys, stuffed animals, books, iPad, musical seahorse, and baby wipes.
I stood in Getty’s room after what seemed like an hour and a half of packing and scanned the room. We have packed everything to protect her lungs, we have provided for her tummy, and we have packed toys comfort her. Have I missed anything?
Then I saw them. I had forgotten Getty’s diapers. Oh yeah … diapers!
I just stood there and cried. I was just overcome by how tired I was, I think. At that moment, I just wanted to be a “regular” mom who got to just fill a diaper bag with the bare necessities to get through a night. I felt envious of mothers who didn’t have to constantly think about whether their child’s sats would suddenly drop. There must be such comfort in not even thinking that could even happen. I wanted to be able to stress about just diapers out of concern whether she might wet herself, not forget to pack diapers because I was so concerned about whether her lungs were clear.
We packed up the car, we put Getty in her car bed, and we were off for a girls only slumber party. We got to Kaiser and Mark and I unloaded the goods. We set Getty up with a few episodes of Fish Hooks and she was snug as a bug. Once Mark left, the two of us hung out and got to sleep in the same bed. Quality snuggle time I tell you. The sleep study lady came in and put all kinds of probes on Getty’s body. Getty looked on in amazement as each probe connected to her body. Some were blue, some were green, and some were red. Some has adhesive backing, while others were pastey and gooey.
And like you would of guessed, Getty just rolled with it. She loved the attention. Bedtime was earlier than usual that night. We were in bed by 9 p.m. and asleep by 10. We got the wake up call around 4:30 a.m. and Mark was back to get us by 5 a.m.
We packed up our stuff and headed home. We got Getty back in her own bed as quickly as we could. We then started the process of disinfecting EVERYTHING.
We should hear soon how the sleep study went. More sleep studies to come.