Eye problems and bone pain and baby drama have kept me from writing as much as I like, but so has just being a mom, which is always worth it. That’s what has happened to us: we are a family. It’s crazy. I have a thousand things to share, though.
Starting with the superficial: the state of Oklahoma is making me crazy with the budget crisis. The first thing the governor did that directly impacted us was to limit how many hours a week I could bill, which was less than part time. Now as of this week, they have limited what we can bill, regardless of level of care. So, for example, when I am seeing someone more often to try and keep them outpatient instead of having to be hospitalized, I see them more frequently; now it doesn’t matter if clinically they need to be seen more often – I can only see them once a week.
I don’t know what the ethics are on that: do I hospitalize the higher level of care people because that’s what can help them now? Or do I see them as often as I always did, but just not get paid for it? The one thing I cannot do is what the state says we must do: just not see them. That doesn’t help anyone, not even the budget cuts.
The other surprise with our summer plans was that my niece, who had moved in with us to help me this summer, decided it our kids really were hard work after all, and it was more fun to move closer to her fiance. She has already come and gone! We had a lovely visit with her the week she was here, though, and I wouldn’t trade it for anything.
The baby, who is now a full-on toddler, has been our other surprise. She continues to have sudden and unexpected desats, or stopping breathing all together, except we are more and more often getting blue lips – which means the problem is central (heart/brain) rather than just peripheral (oxygenated blood not getting to her hands and feet. She has thus far been struggling, but her body compensated by neglecting her hands and feet in favor of protecting her brain and heart and organs. This change means that she isn’t able to do that anymore, and even 2 or 3 or 4 liters of oxygen isn’t enough to meet her needs.
Two weeks ago the doctor said she was actively dying, and it was one of the scariest experiences thus far. She didn’t eat for four days, and appeared to have given up. She was running out of energy to keep fighting to survive. We had to put her back on the ng tube temporarily, just to keep her weight from dropping further, and watched her and she continued to slip away from us. It was very scary, even after four weeks of her sleeping 20-22 hours a day.
She has bounced back a little since her name blessing, which promised she could finish her mission on earth despite her short life. Every blessing she has had said she would have a short life, but my mother’s life was short and she lived until 63, right? She is eating again, and a few days after we pulled her ng tube out, then all the other kids were sick with some kind of bug. We think she had whatever they got, but it was just too much for her. She has no reserves left, and no strength or energy left to fight normal things we find uncomfortable but can conquer in a day or two.
That said, when she is awake, she is a very busy toddler most of the time! She is saying two word phrases, signing everything, and making all of her animal sounds. She has learned to kick balls, is working on stepping in and out of things, and likes to pinch her brothers and sisters – so we are also working on having gentle hands!
We are grateful she is doing better, but she is not doing well. The early intervention team is very concerned, and is working to help us get all the doctors and specialists on the same page about pushing for a trach. They tell us a trach could save her life, and that she wouldn’t need feeding tubes if she got the trach. Connecting all the doctors has been in the works for two weeks and still hasn’t happened. It’s one thing if they tell us this is just her baseline, and so we need to deal with her as she is and expect this to be her life as long as she has any living left, but it’s another thing for all of them to keep saying she needs a trach but no one doing it. They are all afraid of her airway, and no one wants to touch it, but a trach bypasses the airway, so I don’t know why they are still scared about it. I am not the doctor, though, just the mom, so we ride these waves with her as all the appointments spin us in circles.
In the meantime, we are officially doing our book! Her story is what finally sealed the deal after years of going back and forth with publishers and editors about what story they wanted. It’s not just a story about Kyrie, but all of our experiences told through her story. I hope it works. We have four chapters back from the editors and approved, another four this week, and the rest is written and just waiting approval and more edits. We are excited to get through this, but rewriting a thousand times has been very intense and is so time consuming. It’s also very emotional to relive it all, and makes us more grateful for every moment together. We have worked very, very hard on the book, so I hope it is helpful in some way and testifies in some way and moves people to make some changes in healthcare for foster kids in some ways. Maybe that is too great and noble to think we could make a difference, but we have to try, and words are the skill set we have to offer. So, we are trying. Really hard.
The children are doing very well in our summer routine, and I am really proud of how far they have come. We took a great deal to heart from Stake Conference, always needing to improve our parenting, and include ourselves in the behavior chart we do with the children. The only child dramas we have had so far have been who mixed leaves in the dog water, who drank out of someone else’s outside water bottle, and everyone wanting on the new spinner swing at once – we will have to order another one when it works its way into the budget! They really love it!
This is the first time in ages I had a free moment to sit and type, besides the book, and I needed to even if I just had to spit everything out very quickly. Words build up in me, and there is so much to share, and everything is interrupted by the baby in crisis or on hold because of the book or set aside for the children. Sometimes I think I might burst, with so many things waiting in my fingers to write.