It was a decision that was HARD and agonizing and a long time in coming. This thing of getting a nurse in to care for Kierra at night.
My husband strongly encouraged it when he realized how exhausted I was. I guess three years of jumping out of bed countless times at night does that to you.
But it isn’t just the jumping out of bed that gets to you. It’s the constant -ear open- mind ready to kick in high,- brain never resting- thing of listening while you sleep. It’s different then listening for Kobe.
It’s the feeling that if I do NOT wake up a whole number of unpleasant- even life threatening things could happen. Like she could get the blanket over her head and suffocate. Or get wrapped up in her tubing and strangle (though I never heard of this happening. lol! but the thought…) she can get stuck in a position she can’t get out of. Or her MicKey could come out and the hole close too fast and surgery would be in the picture. She could stop breathing or even push her oxygen off and labor away until she’s grey in the face.
And these things really have happened. So you can imagine how ‘restful’ nights are. And yet, i always am amazed how you still learn to sleep through your fears and trust that angels will hover round your child and wake you if your needed.
Having said that wonderful thought, it still doesn’t take away the responsibility that goes hand in hand with us every day. Everywhere.
So after talking to several Moms who have in home nursing, and after realizing that i can’t handle life all by myself sometimes. And after realizing that I’m being an impatient, snappish Momma Bear to my Wee Ones and Pappa Bear way too often, we decided it really was time to get some help.
I still struggled with that thing of not being capable and energetic enough to take care of my own daughter. That thing of knowing that other wonderful Mommys do more then I and survive. That thing of meeting Mommy nurses in the hospital that work night shift so they can be with their kiddos during the day and wondering when they actually sleep!! And thinking i am just ‘not enough’.
But in the end, we decided it was for all our health and well being and quality of life 🙂 that we NEEDED a nurse.( ouch. that kinda hurts to say it .) But. YES! I got it said! 🙂
So yesterday was our first meeting with the agency. The folks were so kind and caring and made me feel like I was making the right choice. It was a long process with tons of information to get down and lots of paperwork! About 4 hours from start to finish. And I was exhausted by the time we were finished. I was signing my home to be opened to ‘strangers’ and my complex daughter to be under their care 8 hours a day.
Our first nurse came last night. She is a homey, sweet, compassionate lady that Kierra took an immediate liking to. I was so excited about sleeping, i could barely sleep:) Then i lay there, in the dark, and realized I could drift off into peaceful la- la land, turn my brain off, shut my ears, and be waken if i was needed.
Turns out Kierra slept well too. Except her oxygen levels kept dropping nearly every hour. She is on a moniter at night, which is a great thing, because she will suddenly drop her levels with no warning. Then we need to bump her up to 3 liters of O2 until she ‘catches up’ again.
We had a very interesting though rather hard Dr. appointment on Tuesday. Kierra has had a low grade fever for about 4 days now, and seems to need increased amounts of O2.
Good Dr. S. informed me of some new research being done on Yoder Dystonia , ‘fresh off the press’. One of the nation’s top scientists is studying the brain of a child affected with Y.D. He is finding some amazing things and he is barely half way done. The back part of the brain loses brain cells as these children grow and age. They do not reproduce more brain cells. This is the part that controls eye movement, spasms, and learning. This makes total sense to me since the older Kierra gets, the more eye flitting and uncontrolled movement she has! I”m sure they are accurate on the learning part too, although I know I can communicate much better with Kierra now, then I could a year ago!
They also took blood from Kierra and I and sent it to their special ‘Y. D. scientist ‘ in the lab. He has discovered how to break down certain cells in the blood and take them apart back to embryo stage. Then he can put them back together again and is hoping he can understand more about this genetic disorder. The same way with urine…he takes a protein in the urine and breaks it down in hopes of finding the leading cause for kidney failure in these children. The kidneys themselves seem to be the problem more then that the body wears the kidneys out.
So having this new exciting information is helpful, but it doesn’t fix anything yet. Next Friday, we plan to meet with him again, and make an extended care plan for Kierra. That won’t be a fun meeting. But it is good to face the true facts of life and I think it’s better to KNOW what to expect then just to have a cloudy fear of ‘what ifs’. And although we won’t really know what the future holds, we can hopefully still get a better handle on what to expect and how to help her.
Right now, she is retaining fluid again somewhat. She could defiantly use some heartfelt prayers that it would decrease and she could also breath better. She seems to forget to take deep breaths, which drives the levels of Carbon Dioxide up in her body. That’s not a good thing.
Thankfully, she has had happy moments through the day and is still moving all over and smiling and she even giggled yesterday!
So although she could go into kidney failure next week, she could also rebound and live for many happy years! That’s our prayer and hope! Meanwhile, we are enjoying the end of summer and celebrating the amazing Gift of life!