We actually received her protocol letter last Thursday (they are QUICK over there!)...and wow. It certainly drives home the seriousness of the condition. In case you don't know, a protocol letter is a letter we take with us in emergent situations so time is not lost when she is in need of medical supports, such as IV fluids. It is a fast pass through the ER waiting room and into a treatment room, and I can see why! It says things like, "any person with a mitochondrial disorder can go from walking and talking to intubated and in the ICU in a very brief time period" and "There is no specific treatment for mitochondrial disease and the disease is often, but not always, fatal." and "Any change in KayTar's condition should be taken seriously as she can quickly become fatally ill." Nothing quite like seeing your worst fear typed up in official black and white on a medical document as a likely outcome! Frightening realities aside, we are thankful to have the letter in hand. In fact, last Saturday when she crashed at camp, we should have taken her to the hospital...but at that point, I didn't know which hospital to take her to or what to even tell them. At least now, we know where to go and what to tell people so that she will get the care she needs as quickly as possible. It was a rough recovery and she missed a week of school, but she went back yesterday and is doing pretty well considering!
Mostly for my own future reference, I want to discuss what exactly happened at camp and why we were so concerned. KayTar was sick and struggling, she kept spiking a fever, she wasn't tolerating her normal feeds (puked ALL over herself and the camp clinic at one point)...but she pressed on and pushed herself to have fun at camp. We usually discourage this because we know how it will end...but it was camp and she never gets these opportunities, so we let it slide. She had fun all day and then at dinner, she passed out mid-sentence. We call it "emergency shutdown mode", but she basically powers down and aside from those automatic brain functions (breathing, pulse, ect.), she is out. We moved her from the cafeteria to her cabin, from her wheelchair to her bed, changed her clothes, discovered she had lost control of her bladder (bad sign), and put her to bed...without so much as a stir from her. Then when we decided it was time to go, we packed her up, picked her up, rode to the clinic in a golf cart, put her on a sofa in the clinic, moved her to the car...all without any response. We drove home for 2 hours...no response. My anxiety was building this entire time and I just knew we would need to drop the boys at home and go straight to the hospital...but a minute away from our house, 5 hours after she powered down, she opened her eyes and said, "Are we going home?" WHEW! We were still worried, but not unconscious-child worried, which is a different class of worry altogether. Like I said, it was a rough recovery...she had bladder/bowel control issues for a few days, was on nearly continuous feeds, requiring 24 hour oxygen, and was really, really run down...but now we are *almost* back to normal! And for the record, she asserts that camp was 100% worth it all...and I happen to agree with her!
Wow- this is HUGE! So glad you are finally getting somewhere. And yes, that protocol letter is intense- I cried when I read it for the first time, because I had no idea it was coming. But, it's great that we have something that will hopefully make everyone take us seriously when our kids need help. I truly hope K doesn't have to have another biopsy- yuck. Praying the Transgenomics test comes back proving what we already know and that can be the end of your diagnostic journey!
AWESOME! ...and YIKES!
Thumbs up for finally, finally having some ANSWERS, though.
So glad you're finally getting some answers.
How frightening the ride home from camp must have been!
She is such a cool kid, it is so hard to believe how sick she can get. You guys are an inspiration.
Hoping your Transgenomic test results show something and K will not have to go through anymore. I'm happy you are finally getting some answers. No matter how frightening they may be - at least they're answers :-)
I was curious that you mentioned a prescription for CoQ10. Is there a version that is not an on the shelf supplement? Here in Canada it is commonly taken for heart disease among other things but is just in the vitamin section at the grocery store.
S.E.- Yes, CoQ10 is available over the counter, but at the dose she needs and as a liquid to go through her tube, the prescription is helpful in *maybe* getting it covered by insurance...it is expensive in that form and quantity!
Kyla, Kohls has cute sock monkey sheets on sale!
Love the picture.
Hope KayTar is feeling better!
I am so glad she recovered from her illness at camp - what a horrible time to get sick. I really hope the test results come back and help confirm a diagnosis - it is nice to have a "name," even if the name doesn't really change the course of treatment.
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