Quick update on cady as i know a lot of folks are asking, which means a ton to us.
Unfortunately, after three days she is worse than when she came in. She is on her 11th different drug to help her relieve pain and release her very extreme and constant muscle spasm, myokomia and ataxia. She is responsive but her pulse remains tachecardic due to the spasms. Her bladder is spasming which is causing some concern with her CK levels over 4000 -- normal is 500. Runners can spike with the flu at 200,000 so it really is about age and conditioning. We continue to take urine samples to ensure no kidney damage. Her white cells are elevated meaning likelihood that an undetected virus is the trigger, but no treatment for that except fluids and rest. Her ankles are turned in, legs stiff as a board, hands are locked up with her right hand clinched over her thumb and her left bent fully downward perpendicular to her wrist. Try doing that yourself as hard as you can and hold for 5 minutes. Now imagine that for 72 hours. Poor thing.
We continue to wait and be hopeful. I think breaking the virus will cure a lot and get her home, but shows the potential dangers of getting strep throat (which her sister is recovering from), or the flu or chicken pox or lyme disease.
We have a call out to Edward Cooper at Baylor, the foremost researcher of KCNQ2 and expect a direct call in the coming days. We hope.
March 10th, 2018:
She is finally getting past her acute episodes with much needed release of her myokomia and rigidity. Her muscles are like jelly and will need many days or weeks of rehabilitation to get back to normal, if she can get back to normal. Her hands and feet are swollen from the extreme physical impacts of her prolonged 72 hour spasms. She cant walk nor use her hands but i suspect that will change in the days ahead.
We continue to treat her with valium for pain and rigidity and are working with some field experts to balance her meds. She needs to eat, but having a hard time doing so. Since september, she has lost 20 percent of her body weight and now at 7, weighs what she did when she was 4. We undoubtably are concerned about this and are working through options to reverse this trend, but the reality remains that her spasms likely exert so much energy that she couldn't possibly eat enough to counter the calorie loss.
We dont know when we will go home. Addy is noticeably shaken and misses her family, cady most of all. And we miss her terribly. I cant wait for us to be together again -- laughing, playing and just being us.
We know there will be a next time. Our hearts ache knowing this. Cadys pain, addys pain, our pain, our extended family's pain. We will not cease in scraping the ends of this earth to find answers and better treatments. No child should ever be put through what cady just went through.
Good night all. My lack of sleep is catching of to me.
March 12th, 2018:
March 12th, 2018:
Today was a good day. Cady woke up feeling rather spry and in good spirits. She still wasn't that hungry but I convinced her to eat some fruit loops with milk. The cocktail of medicines have done a number on her taste buds making most foods pretty tasteless and unappetizing -- but she did what anyone 6 year old should do and listened to her father.
Most impressive was the progression throughout the day of not being able to stand to walking without assistance about 20 feet. Gingerly moving along with wobbly knees, but the leaps she is making encourages both Erin and I that we will be home soon.
We did have a concerning night prior due to her low blood pressure -- dystolic (what comes out of your heart and to your body) was around 42. This hypotension can be rather dangerous for the heart so the doctors were monitoring closely. Thankfully, through improvements in stamina and appetite, she is back to normal. One more night of steady pressure and we've checked another concern off the list.
Cady has been in and out of rather distressing emotional displays, but we try to support her by saying those are real feelings and she has every right to express them. To us, to visitors and to doctors. She broke down earlier for about 30 minutes just repeating "I just want to go home" in a sobbing voice. I think that's justified. We do too.
On a more upbeat note, I found the chance to run home and see the dogs, see Addy at school, talk with school staff and have a quick beer with some friends before trekking back to the hospital. Addy was noticeably sad, but she is such a trooper that understands deeply the severity of Cady's condition and the need for her parents to be at the hospital to support her. We try to ensure that Addy knows this isn't by choice and we want nothing more than to bring our family back together.
I picked up some very thoughtful and rather cute / witty cards that Cady's classmates made. When I brought them back to the room, she read each one with a smile and handed them to Erin who hung them on the wall. Such a sweet group of kids who really care for one another. To boot, both the school nurse (Kym) and Cady's teacher (Beth) came to the hospital this afternoon to see Cady, toting a build-a-bear (named Cassie) that they made minutes before at the mall. A wonderful gesture for sure. I cannot speak more highly of those two. They give me hope for the future of education in Lisbon. I think we are starting to change our tune about wanting to move.
So here we sit, another night in the hospital, waiting for further improvement. The Nor'easter could stymie our chances of going home tomorrow, but if I have my way, we'll make the journey. The road is long with this one, many decisions to make, along with the certainty that Cady will we back. The lingering uncertainty is just how bad it will be the next time? This one was bad, real bad. She's lucky to be recovering.
Thank you to all our friends, family, colleagues, and even distant connections that have reached out to show their support for Cady in a variety of ways. You never really get a sense of the network you carry until you go through something that requires you to lean on it. We appreciate all you have done from the bottom of our hearts.
Good night.
March 13th, 2018:
After a good day yesterday, we are not having a good day today. Cady woke up in high spirits, but she has since relapsed into a full on acute episode of rigidity and dystonia. She is in massive pain and hard to watch.
Here we go again.
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