We passed our test of full feeds for a whole twenty-four hours!
And, once we could do it on our own without nurses, Kyrie stopped the fussing and started helping and relaxed considerably for her feeds. We have it down, now!
We spent our time waiting for discharge by playing hide and seek.
Except she kept hiding in the same place, so the seeking part was never too hard.
We finally got her discharge papers, and we were relieved they came in the morning so the children could come home in the afternoon after a long week of being shuffled around.
Her discharge diagnoses:
- Pierre Robin Sequence
- Failure to Thrive, Endogenous, secondary to medical condition
- Gastronomy Tube Dependent
- Oropharyngeal Dysphagia
- Ventricular Septal Defect, Recently Resolved
- Cleft Palate, partially repaired (revisions scheduled)
- Allergy to Baby Wipes
We have four follow-up appointments to keep: the pediatrician, the pulmonologist, the GI doctor, and always the ENT who continues working on the wonky mess of a structure of her throat.
We are also being sheduled back in Cincinnati, allegedly in October, but dates aren’t finalized yet because so many tests and doctors have to be coordinated there, but we will know soon.
In the meantime, she should be nearly perfect until the next procedures.
We are very excited to have a little girl who can breathe and eat for a while!
She was so excited to see her wagon ride ended at our car!
And then she was asleep before we even finished loading up her toys and puzzles and art supplies!
Her seat belt connects right at the corner where her gtube is, so we had to cover it to be sure she didn’t wiggle enough to pull on it. Tucking her bear in just with a leg and an arm seemed to work in a way that didn’t bother her or compromise safety too much.
We were thrilled to pick up the other children, and they were so excited to see Kyrie!
We are so grateful to the families who took turns caring for the children this week! They had so much fun! They were so spoiled! They also got special time with Nathan’s parents for part of each day, and that was good for everybody! We missed the grandparents while they were away in Utah visiting Aunt Clarissa’s animal baby farm house and Aunt Alicia’s new little boy.
Once we got all the children to bed, after a very very very long supper full stories about all the adventures the children had this week, it was time to set up our emergency kit.
This has the tubes, tapes, and syringes we might need if her gtube ever comes out accidentally (or gets pulled out by little toddler hands).
It’s actually a big deal, because her stoma (the hole in her stomach) is so small it’s likely to close within fifteen minutes they said.
So we have to be ready, just in case, with a backup mic-key button, and even a ng tube we could throw in there if nothing else worked, until we could get her to the ER to have it replaced.
But if the hole closes, we would have to have surgery all over again.
So we have to be ready.
We pulled these emergency supplies together as instructed, and put them in the top part of a lunchbox we have. Then we can fit her formula and current supplies in the regular part of the lunch bag to stay chilled when we leave the home. That bag, and her own backpack to carry the pump when she needs to, will go with her anytime she leaves the house so that we have what we need if something happens or if it’s time for a feeding while are out and about.
It’s like diaper bag 2.0, and means we still load our van with four machines and three backpacks of supplies anytime she leaves the house.
The progress, though, is that some of it just to be near her. We don’t have to take it all inside everywhere with us all the time anymore, which is progress, I guess, but also just part of life with a complex little one.
Nathan and I also cleaned her stoma site again last night, for the first time by ourselves. It was not hard, but we were anxious and Kyrie was not happy! Cleaning under the tube doesn’t hurt, but she does have stitches under there so those area are tender and we don’t want to catch on them. Plus it is still taped down. It’s so tricksy!
We put her pajamas on backwards so that (maybe) she wouldn’t be able to get to it or mess with it in the night. Hoping on that, Nathan and I both went to sleep and slept all night. I feel so much better this morning! I’m also stealing the children away today so Nathan can get some real rest after this hard week.
This weekend is my weekend off, thank goodness, so I get to go to meet my brother in Arkansas for the day. My father’s mother’s family is having a reunion. But get this: it’s a genealogy event! How cool is that?
It will give us practice taking Kyrie out and doing her feeds on the go, which we are supposed to practice and know how to do before her follow-up appointment.
But then I don’t have to go back to work on Monday, I guess? I got to work last night, exhausted, and the time clock said I was not an employee! I panicked that maybe I was fired for being off work (a fear you have after being let go via text message while you are in the hospital with your daughter once before), but knew my boss knew what was going on. So I went up to my office and tried to clock in on my computer, but could not get to Cerner or Kronos. I had to call the company number, and they told me my FMLA was approved after all! I will not get paid, but I cannot go back to work until the 24th and will not have any computer access until that day. They told me to just go home and take care of my daughter!
I cried. I was so exhausted, and so relieved, and so glad to still have a job! All my tears from the whole intense week just came pouring out of me. I cried all the way home, and cried when I walked in the house and surprised Nathan and the children, and cried as the children jumped up cheering.
We really needed this.
I don’t know how we will do the time without pay.
But we are ready with everything we needed for Kyrie to come home.
And know why we were ready?
Heavenly Father most often cares for people through other people, and people with big hearts and generous spirits helped us get through the last week.
Because our children were safe and busy and happy (and stuffed full of treats) while we were in the hospital all week.
Because people were kind enough to share our fundraiser link, or share a few dollars, or donate sterile supplies they had extra, so that every single thing we needed for Kyrie to come home had arrived by last night – plus a new travel concentrator on its way tomorrow.
I cried about that, too, that experience of walking Kyrie into the house and everything being here ready to care for her.
We are grateful, so grateful, for all the ways people helped (even the meal we got Thursday night so the grandparents had a bit of relief one evening).
Thank you. Really. Thank you so much.
Because sometimes what you need in an emergency, and to prevent an worse-er emergency, is just plain good people and simple tools to help you care for good people.
And sometimes, what you need is no more emergencies.
Like having a little girl who can breathe.
Like having a little girl who has a way to eat.
Like having a community of angels who help a family endure a crisis (or four years of crises).
Like having friends who give you you hope and courage and strength beyond what you could muster on your own.
Thank you for your help, and thank you for your prayers, and thank you for loving a little girl and her brothers and sisters. And her parents, too.
Just thank you.