Biggest news of Sunday – We’re OFF OXYGEN!!! She is now breathing completely on her own and moving air and oxygen through her lungs and blood with her own abilities. Her heartrate is much more normal, she is sleeping, and the best part? She smiled at us again today. THAT’s how I know we’re almost home…It’s been almost a week since I’ve seen her smile – that is so sad to me. But i am so glad to see it back.
So, here’s what I know today.
She seems to be resolving the RSV/pneumonia. That was her most acute/short term issue that HAD to be resolved. She is definitely a much healther child. Still a horrible cough, and still going through breathing treatments and “chest physiotherapy” every three hours for a half hour. We have to wean her down to 6 hours or more between treatment because they can’t send her home with orders for me to nebulize her that often. So we just hope that she builds up her strength in these good naps she is now taking to be able to last 4, then 5, then 6 hours without needing the nebulizer medicine to re-open her airways.
The GI (gastroenterology/stomach) doctor came in today to review her case. His recommendation is going to be a few more days of NG tube feeding so we can analyze EXACTLY how many calories are going in, monitor then how much is coming out related to the input, and if she is STILL not gaining weight, then we know we have a metabolic disorder somewhere in the middle. Luckily enough, this is also what the neurologist is trying to pinpoint, so hopefully it all comes together nicely soon. Most of her bloodwork requires a few days to fully run the tests which is why we don’t have any solid answers on that yet.
To my knowledge, they are not looking at keeping her here while we wait for results. One more big test that she has to make it through is the MRI. She has to be sedated for that, and its a much easier procedure to perform when she’s an inpatient than to try to get scheduled as an outpatient. I think today Dr. A will want to discuss the benefits of keeping her for one more day in order to run that test so we have some more definite answers, plus it will give her just one more leg up on full recovery to be here for another day. I don’t know, just trying to organize my thoughts and the massive amount of medical info that gets thrown at us every day.
So besides the RSV we are looking at:
Hypotonia – this is a generic diagnosis meaning she has low muscle tone. The neuro team is trying to assess WHY she is hypotonic. She will be recommended for physical therapy on a pretty aggressive basis to resolve this, and they are testing her blood for a slew of disorders that present with hypotonia to hopefully get a narrowed down view of what we can start expecting for her real diagnosis. Dr. A thinks that the hypotonia is really the key to everything (lung issues, heart issues and digestive issues), so we’re in a holding pattern right now till we get the MRI and bloodwork back on that. They haven’t said the words “muscular dystrophy” or anything – i think simply because her symptoms could just as easily be something innocent and benign as they could be something life-altering. She is really throwing them for a loop on this one!
PDA – Patent Ductus Arteriosus – Basically an extra valve/opening in her heart that is TOTALLY normal – for a fetus. It helps the baby not waste energy in utero by redirecting blood flow AWAY from the lungs (since babies in mommy’s tummy don’t breathe air/use their lungs), and back into their bloodstream. In Kendall’s case, hers never closed, so her bloodflow is off. They haven’t put her through a bunch of testing on this yet because Dr. A thinks that the defect is because of her hypotonia, not the reason FOR it. They feel like if we can get her muscles to all work right, her heart muscle will close this opening and problem will be solved. This is probably the only area that doesn’t seem quite right to me, because my gut says – “hey! we finally found a part of the cycle that we CAN control, let’s stop it and see if we can’t get some resolution!” But I also realize that i have no medical degree so i keep my mouth mostly shut. We’ll see how long that lasts today during rounds…
And speak of the devil! In he walks…
So after rounds here’s where we stand.
He DOES think the PDA could be a bigger problem, but also feels that giving her muscles time to recuperate on their own with all the physical therapy plus nutritional fortification will hopefully make a better improvement than jumping right into heart surgery. Valid point, doctor.
We are doing her MRI tomorrow to either FIND or ELIMINATE any neurological issues affecting the hypotonia/muscle tone issues. I am kind of scared about this. She has to be sedated. I know worse things happen in the world every day, but hello – i barely handled my girls’ ear tube surgery with sedation (the two surgeries combined lasted less than half an hour!), so i do’nt know how i will not panic having them take my BABY, peanut little sickly baby, sedate her, and have her gone for an hour. I will need serious distraction techniques. It’s at 8 am monday morning, so if any of you are up and reading this before then – send me funny texts or something!!!
And then we wait and see.
The doctor is again greatly encouraged by today’s progress, getting off the oxygen and such. She just overall LOOKS so much improved. She has, in spite of a continuous feeding of 140 ounces, gained only .3 ounces, but they are willing to look at it in the course of a few days vs. day to day at this point. I WISH i had a metabolism that burned up 99.997% of everything i ate. Chocolate cake for every meal! woot! But – i feel like i stopped making sense with this post a few paragraphs back.
So i’ll stop making it worse, try again tomorrow when we have more info, and instead leave you with a few pictures. We’ll go with happy kendall, since that’s how she was most of today.
Thank you all SO MUCH for your prayers and thoughts and the wonderful words you leave us in your comments. I cannot tell you how much it all means to me, to know how lifted up and supported we are by your love.