This week has been insanely full of appointments. The school needed Alex to have a new autism note from the doctor, and Kyrie had her pre-op checkup, the girls needed well-child visits that had been rescheduled from when Kyrie was in the hospital last time, and there were IEP advocates and attorneys and group home meetings and today was Kyrie’s GI surgery follow-up for her first g-tube change.
A gazabillion thanks to Nathan’s parents, for whom we are so grateful especially this week. Because of their help, we somehow managed to accomplish all the extra appointments while maintaining the regular appointments of all things therapy.
So much therapy.
I think the only meeting we missed was Mary’s IEP meeting, which we got notice of last night after I was already at work and which was scheduled for today – at the school in Tulsa. That didn’t make any sense, and there was nothing we could do about it for Kyrie’s surgery appointment. I emailed them back this morning to say we could not meet them today and would not meet them in Tulsa, but would be glad to reschedule for Owasso.
It’s been a week since school started, and they still haven’t let Mary in class. They have posted notice for an interpreter job in Owasso, so that gave us some hope. We even suggested they use TSHA right away for substitute interpreters while they try to find one to hire – but they have not responded to us on that, though everyone else who talked to us said that was good Owasso was working it out. But I guess they haven’t, and Mary still waits.
Today, though, she got to play chess with Grandad after her homeschool work was finished! This is a special memory for her, as it was a huge part of her biological grandfather’s life and something passed on to her. She has been learning and studying chess for about a year, and slowly realizing there is some strategy involved. Grandad is an excellent tutor!
Or, in Kyrie world, another day to play at the “doctor playground”.
Who gets a new tube?
You get a new tube!
We talked about taking her tube out and putting a new one in, and prepared her as best we could.
It doesn’t hurt her, so much as it is one more time she is having to lay there while other people do things to her body. She protests that, and I am respect that – am even glad, maybe. It means she still has fight left, even when she is so good as to lay very still while we get it done as quickly as possible.
Here is how we do that (skip the rest of this blog if you are too squeamish)…
First, the tube has to come out. We do that by using a syringe on the side of her tube, which is a different hole than where we put her food in, to draw out the water from the balloon that holds the tube in place. This makes it easy peasy to slip right out.
This also gave us a good look at her stoma without the tube in the way. It looks great! The circle around the hole is where granulation tissue has healed and doesn’t need medicine anymore, and the tiny bit of granulation right by the hole got new silver nitrate today. Some say it burns, but it doesn’t seem to bother her at all. I am relieved about that!
Next, we check the new tube before putting it in her. We want to be sure the balloon works and isn’t defective. Here’s a great picture we got of it, so you can see the top part that is on the outside of her belly, and the tube that goes through her stoma, and the balloon that holds it in place against her abdominal wall.
We were so nervous going in, but it was super easy! We both did it in the office with the doctor, so now we both can do it if there is an emergency or something goes wrong and it ever comes out. She was very proud of her new tube!
I have no good explanation for that.
But she was also wearing two pairs of sunglasses, if that makes up for it, because she thought she deserved one for taking the old tube out and one for putting the new tube in. Smart girl!
Many thanks again to Nathan’s parents, who shuffled children for us, and got three kids though therapies this morning and half of them back to school while we played g-tube. Not only that, but the parents stayed long enough for Nathan and I to go on a date! We got to use a gift card to go out to lunch, and enjoyed a hot meal without children. It’s been ages! We are so grateful! We really appreciate the support and help of his parents.
I left for work while Nathan was passing out popsicles to the gathering crowd of children, but not before Nathan laid a blessing on my head promising help and rest and comfort.
I drove to work singing along to hymns he has recorded for me without instrumentation (easier for my cochlear implants to understand the words so I can learn them).
When I arrived, one of the security officers I work with often brought me money from their office to help for Kyrie. Then we got news someone has arranged to fix our cars (our van is overheating easily and the car I drive to work has no air conditioning). Then a physician I work with ran into me in the hallway (literally) and said our book (I am assuming Keeping Kyrie) was amazing, and here are some gift cards for lunch on the road for our trip. By the time I got up to my office, I had an email on my phone that Medicaid approved the contract for Cincinnati so her hospitalization will be covered, and we had enough from fundraising to pay the difference. I also had an email on my work computer that my FMLA had been approved for the entire month since documentation showed she would be in recovery and then back for more procedures. I couldn’t believe it! I won’t be paid for all that time off, but they will pay me for two of the weeks through the leave sharing program. All of this was such good news and such relief to me! I was so grateful!
We have used the last of the fundraising money to get Kyrie’s immediate supplies, so that is done. We will be staying with a ward family once we get to Cincinnati (the Ronald McDonald House only can house families of four, not eight), so we have a safe place to be. Our van will be safe to drive to get there. The two weeks I will be paid for being gone is just enough to cover the mortgage. These are huge blessings, and much relief. Miracles to us!
Now we just need gas and hotel money to get there and back. We are so close! We leave a week from tomorrow.
Kyrie needs her hearing aid fixed, and I need to pack the children, and we need to exchange oxygen canisters. But other than that, we are almost ready!
At least, as far as the physical piece of getting us there and back again.
Emotionally, that’s different.
Except we have hope for an easy peasy visit, getting in and out of there quickly.
She’s as healthy as she’s ever been, right?
And as fiesty as ever, for sure.
So we’re golden.
We have to be.
Instead of being afraid, what I think about is how the atonement is like my spiritual g-tube.
And how the Holy Spirit is like the water filled balloon that keeps me in place.
And how the love of my Heavenly Father is the water carried inside.
And how sacred ordinances in holy temples are like that extension set that connects me to the nourishment of covenants.
And how prayer and scripture study are like the tube formula that keeps her strong and full of life.
I teach her this, and hope that it means something someday, somehow sinking in like a flood of truth through one more hard thing.
And maybe hoping there is time enough for the layers to sink in as she grows in wisdom and in stature (Luke 2:52).