It is a couple days after Christmas and I am sitting in the dark of our hotel hospital room while Everly sleeps. So, all you problem solvers out there probably picked up on the fact that means, yes, we did spend the holidays in here.
While it would have been nice to have our annual Christmas Eve appetizer and dessert buffet at our house, we were and still are glad that we have our Sweet Pea...no matter where we are!
So, since we couldn't go to our Christmas festivities, the Christmas festivities came to her! That actually began with our visit from Santa just a couple days before this present hospitalization.
Yup, THE Santa!
One of Santa's elves contacted me in mid-December because they knew that it was not a possibility for us to take Everly into the mall to visit Santa. Our bubble has to be our home so we arranged a visit to the house. I told the kids he was heading our way and Kendan literally was unable to control his excitement! He paced back and forth at the front door, just waiting.
Wearing our fancy dresses during Christmas time!
Our visit with Santa was nothing short of pure MAGIC! From his warm disposition with the kids to his bringing and then playing the nose flute with the boys. I think Santa was as smitten with our sweet angel as we are! He held her, held her AND held her! She was just as smitten with him as she continued to stare at him with such intrigue. Santa told stories about various aspects of keeping the reindeer in "off season" and gave Everly an elf name. I thought Santa had to hurry home to finish working in the toy shop but, much to our surprise, he said he wasn't in any hurry. As he sat there just looking at Everly, she stared back at him and then just fell asleep in his arms. He stayed there and held that baby up in his arms while she slept for well over an hour without the slightest movement. The most special part of the visit was when Santa prayed in earnest over Everly.
While still inpatient, my mom single-handedly orchestrated Christmas Eve tradition in the hospital! We had egg nog, cookies and appetizers in the room. (Thanks, Nana, for setting up the whole buffet in the room. I know it was a lot of STUFF to bring in just to turn around and lug it back home.) The boys watched A Christmas Story while we chatted and nibbled the evening away!
Christmas Day began with the boys and daddy toting all that Santa had left them at our house here to the hospital room. Nana and Papa met over here as well and we all shared in Everly's FIRST Christmas Day! She just sat back in her therapy chair in the center of the room and took in the chaos! She was very good this year because she received exactly what she asked for: Mary Jane style socks, a therapy exercise peanut in PINK and baby nail polish! Good job, E! The boys were also good because they each received the three things they asked for from Santa and a few extras!
Now for the medical update part...
The last update I gave ended with the switch last Sunday from Bipap down to high flow oxygen and then later in the day to room air while awake. (12/21)
That next day it was suggested that a sleep study be completed while inpatient so we could see if she had apnea which would answer the high CO2 retention (part of it anyway). So, that night she had a sleep study. On Monday, the pulmonologist came in early evening to tell us that she had over 100 apneic episodes during the course of the study. She most definitely could use and benefit from the CPAP. It could be life-saving with that number of spells happening!
So, in my naïveté, I thought that the CPAP machine was ordered and then delivered wham bam! Umm. Let me fix that misconception now.
No, it isn't ordered in one day.
No, it certainly isn't delivered it on one day.
The truth is that it is COMPLICATED. The machine is actually considered a ventilator and is treated as such. We won't be having it in that mode as we'll be doing CPT as well.
Because it is considered a life-saving device, it is NOT something that can be acquired through our hospice contract since hospice is comfort care at the end only.
So, that's pretty much where we are now. It has not been ordered as of yet due to a few other issues that will need to be addressed Monday. The approximate time frame we were given from the DME company we'll be using is a week at best to get the machine to us in the hospital. The biggest issue is that the insurance won't pay hospice for care AND also a DME for another piece of equipment since hospice is everything. Therefore, in order to get this machine, we will have to sever ties from hospice. I will, however, check on Monday to see if there's ANY other way around this but I've spoken to two case workers here who have experience in this situation. So, basically what this means is that we would have to give back ALL her machines, tanks of oxygen and who knows what else and depend on an outside company to supply Everly. I am hopeful that the transition that we are now forced to make will be for Everly's benefit.
Everly herself is still sick. Well enough to go home but sick enough still that we will need to be extra vigilant. She is still very congested and has tons of drainage. The drainage is good except that it makes it hard for her to sleep and rest during he day. She is now on CPAP at night and that has given her better rest then. The mask and the pressure input are certainly new sensations that aren't necessarily pleasant and will take some getting use to, especially since the home one will be different anyway. I must say that her sleep the last few nights with the CPAP on her has been definitely helped her. Some hiccups with the mask placement and seal that keep coming up due to head position (babies move) and her NG tube leaving a tiny crack in the seal around her nose.
We are both ready to come home and the boys are ready for us to be there, too. This lack of routine and consistency among other things wears on you. However, again I am reminded that we must stay so that she can get what she needs. I forgot to mention that the company must go through our house first for some inspection. Then when the machine is ready it needs to be brought to the hospital so that we can fix the settings and it can be monitored here for a night of sleep at least. So, those two components also add to our ability to take Everly home.
If you're keeping track, we've spent my birthday (Feb for her birth), Thanksgiving, Christmas Eve, Christmas, and now New Year's Eve and New Year's Day all in the hospital. Thankfully we are surrounded by lots of fun, caring and helpful peeps working here to keep us motivated! We can do this! We're almost there!! Well/non-sick visitors are welcome, meals are also welcome.
We are so reminded all the time about the blessings we seek and how God cares for each of His children. Now is no exception!
With love and appreciation,
Crystal
P.S. Prayers please for our Trisomy 18 friend Elisabeth as she was admitted into the PICU in Texas now as well. This congestion/cold no matter how small is very serious! She is resting comfortably now and we pray that she keeps that up so she can give it her all! Thank you all!
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