Both times we have left Primary Children's, we leave with tools that help us keep her out of the hospital for longer periods of time. They are blessings in disguise. Last time we left with the bi-pap. This time we are leaving with the g-j tube.
Here's how we hope the g-j will increase Sophie's quality and longevity. She has had aspiration pnemonia 6 times in 10 months. (twice she's been hospitalized). So, here's how that happens:
1. She gets the common cold
2. She has a soft gag reflex on account of never eating orally. This causes her to retch, from the post nasal drip, or when she coughs.
3. The retching causes her to throw up.
4. She then breathes IN her throw up (that's aspiration)... because her suck, swallow, breathe reflex is underdeveloped (which is the reason she's tube fed).
5. Then she gets aspiration pnemonia :-(
NOW she has a feeding tube that has TWO options. We can feed her stomach ... OR if she gets sick and begins retching, we can bypass her stomach and feed straight to her intestine. Leaving her stomach empty so that she cannot throw up and aspirate on formula.
This special type of tube, call the GJ tube, has to be placed in the radiology department at Primary's. And it has to be re-placed every 4 months.
In St. George we'd always been told she would need to be put under for this, as she needs to lie very still. So we've never done it, bc with her small brainstem, she has a higher chance of not coming out of anesthesia. we didn't want to take that risk three times a year.
BUT!!! There was an experienced radiology tech there, who said that HE could do it without putting her under! We are so excited and grateful for another blessing in disguise.
It is hard being in the hospital for 9 days. But there is so much to be grateful for. The Ronald McDonald House is a lovely place to stay. Jason brought Michael and Sarah up on Friday and we've been finding fun things to do every day, in between visiting Sophie ;-)
Probably the hardest thing has been missing Max who stayed with Grandma and Grandpa. But we're very hopeful that this g-j tube will keep her healthy for longer periods of time, so in a roundabout way it's benefiting him as well.
Church at the Primary Children's Branch was affirming. Just being around other special needs parents. And parents of terminally ill children. The truths we cling to are simple. The Lord has a plan for each of us. There is life after this. We will be together again. It is only separation. We just have to trust Him.
Sophie feeling better...
toured the conference center ...
the planetarium...
View from the hospital breezway...
Smiling that Dad is here...
The zoo...
Hanging at the Ronald McDonald House...
Visitors...
(to my in-laws I apologize that I didn't take your picture!)
Michael and Sarah when they arrived
On our way home now!!
Big thank you to Mom and Steve for taking Max for 9 days.
Thank you Ben and Kaila for having us over for a family dinner, your timing was perfect.
Thank you Holly for coming over and trying to visit. I'm so sorry I'm such a space cadet 😆
Thank you everyone for all the texts and offering to help. It's so nice to know we have people that are there for us. Even when we tried to downplay how serious it was ;-)
