After two weeks of nearly perfect healing, Kyrie woke yesterday morning with a tiny red spot just under her Mic-key button. We didn’t worry because her follow-up from surgery was already scheduled for later, so they gave her some silver nitrate on the spot while we were there.
Or so we thought.
This morning she woke up fine, almost nothing there except for some gray skin where the silver nitrate had been applied.
But after nap today, she woke up with this:
That bump under her button is granulation tissue. It’s so frustrating! It wasn’t even there before her nap! It came on so fast! We have been so careful to keep it clean and dry, and now have begun the battle every other gtube parent has fought.
Granulation tissue in and of itself is a normal thing. It’s just gross and in the way and unpleasant. It leaks a lot of mucus, and can grow really bad really fast. We have to be careful to not let it get infected, so it really has to stay under control.
All it is, though, is her body’s hard work of trying to heal. It’s the tissue trying to close the hole they just put in her, the hole we call a stoma, except it can’t close because the gtube is in the way. So the new tissue gets pushed up and out, creating the extra ring bubble over where the hole in her belly is, as if it were try to close by growing up and around the tube itself.
Now we have a special ointment we have to keep on it to burn it off, and they will continue to use silver nitrate every couple of days, which means more doctors appointments and more holding her down, which she hates (as she should) and which is why we got the gtube instead of the ng tube.
It’s a normal experience for after a gtube, but unpleasant and frustrating. We need it to heal up quickly, and are following instructions, and she is not messing with it or making it worse. But we would sure appreciate your prayers in helping it go away!
The supplies we had ready when we came home from the hospital are quickly being used up. We set up a Wish List on Amazon for those who are able to help with items not covered by insurance. We especially need Nourish (on the Wish List), which is the formula we give her through the tube. The list also has the split sponges and creams we use (for example, we keep Aquaphor on the good skin around the tube, so the harsh creams for the granulation tissue won’t hurt her good skin). We also frequently need Q-tips and Apple Juice and sensitive skin baby wipes, but for some reason it wouldn’t let us add those to the list (it kept adding it to our grocery list instead).
We are so grateful for those who have sent us the protective gtube pads that help prevent this from being worse than it is by keeping her stoma nice and dry between cleanings! I know there are so many sites online that sell them. You can just search “gtube pads” and find lots of options. They are really cute! Some people have searched and found patterns and are sewing us some by hand! Thank you!
In the meantime, we have spent this week trying to keep up with book orders since Kirk’s book CP and Me was released this week. That led other people to finding the other books, and it’s been busy! We also started the G-Tube book, and began recruiting editors for the marriage book we have been working on for the last year. In the middle of all that, the children asked for a “puberty song” video, and so we got that filmed and now just have to finish editing it so that can drop tomorrow. It also led us to the realization the children need a body book, too! I began illustrations, sent the text to Nathan for editing, and we will start putting it together in the next month.
That’s all our writing projects besides our actual paying jobs and homeschooling the children.
Oh, and waiting for our Book of Mormon commentaries, Plain and Precious, to come out online. They have been available directly through us in ebook format, but the kindle and ibook and all those versions drop on iTunes and Amazon any day now – at least the first two volumes. We keep checking to see if they are showing up yet! What a crazy year it has been!
We are also making progress with Kyrie’s Kids, even though that seems quiet and behind the scenes right now. It’s a lot of work, as it turns out, to open a group home, much less four all at once! But this week we got brochures edited and approved, business cards printed, and budgets finalized and approved. We are starting construction plans, writing staff trainings, and finalizing contracts. It’s so much work, but it is super exciting. I’m relieved we are getting closer to having things going “in real life” after so much talking it for so long.
We had originally only wanted to open up a medically fragile group home because those children have almost no place to go at all, besides stay in the hospital. But then as other facilities closed around the state and contracts became available, we bid for them to help adolescents and foster children also. What we could offer as a team snowballed into a brilliant match for what our area needs, what our investors were willing to do, and what it seemed our communities could accomplish together. It is all happening so fast! Here’s the inside of our new brochure:
Except that we have worked on this for more than two years! That’s a long time to work on something before you are ever paid for anything, and a lot of kids still waiting only because we don’t have the doors open yet. The four adolescent group homes will open first, and then the medically fragile home later because of the needs in our state, but the overall project is really unfolding! One step at a time! It is a huge undertaking for us, but I don’t know how else to help more children and adolescents, use the gifts we have to offer, give both me and Nathan work in the same state, and be able to have our children with us together most of the time.
It is going so well, and our “Hope & Vision” programming is getting lots of good feedback, with other facilities across the country asking about incorporating it into their programs as the old coercion programs prove to be unhelpful long-term. If you know the Sanctuary or other trauma-informed programs that have been on trend, this trauma-responsive kind of programming is what is the very latest thing and more effective long-term. We are so excited to be able to help so many!
I even have to talk about it in Utah this fall, in front of the other chaplains and that crew, so that made me gulp for air. A community chaplain, they call me. A mess is more like it, maybe.
Know who else was gulping for air? Nathan, when he unzipped Kyrie after her nap and saw that granulation tissue. Did you know this week was his birthday? My present to him was guaranteeing no child threw up on him or pooped on him, which is what his birthday presents were for the last four years. Mucus, though? He didn’t say he didn’t want mucus for his birthday. Happy granulated birthday, Nathan!