Wednesday.

I am sorry this post is so late. It’s going to be a looonnnggg nite around here. I am sure I have something of more value to blog about later this week – but for now, i just wanted to put out a little update on what is going on. And i hope hope hope that this turns out to be nothing, but since you guys are so good at praying for her, and for us, i thought i’d update first, pray hard, and hopefully eat my words of worry later.

HOPEFULLY what we are seeing tonite is just the end result of the last three days of greatness that Kendall has taken advantage of. As much as that would suck to realize that being halfway normal, and being able to be outside for a total of 10 hours over three days, could have THESE drastic of consequences – the alternative right now would suck even worse.

So HOPEFULLY we are dealing with just some “autonomic craziness”. and not a line infection. We aren’t even going to breathe life into that one right now. But right now, she is having lots of bad apneas. Basically she is not breathing (probably holding her breath due to pain) until the alarm goes off on her oxygen monitor because her oxygen is dipping into not great numbers. I’ve already adjusted this once tonite, and will probably have to adjust it again before i go “recline”, since I probably won’t be sleeping a whole lot! Because she isn’t taking good breaths, her heartrate is pretty high for her normal, and this means essentially that she isn’t getting great sleep. It is probably also elevated due to pain, presumably from her stomach. It’s been giving her a lot more problems over the past few days, and tonite is showing signs of definitely not wanting to cooperate with life. We’ll just say that her gut is working very hard to rid itself of any and everything that has been put into it over the past couple days. It’s not pretty.

Adding to the respiratory issues is the fact that Kendall is refluxing MUCH worse over the past few weeks due to a current shortage of her IV reflux medication. We have had problems trying to keep her comfortable without that medication (they are trying to have us substitute a different kind of medication), but the alternative right now is to go on a whole separate infusion to try to control the acid production in her stomach, and we do NOT want or need to add any more craziness into the situation! It is probably becoming an inevitability though if we continue to have issues like she is having tonite. So the reflux is irritating her airway, making her cough very harshly, which further irritates the airway, which makes it hard for her to breathe super effectively either. How many issues is that now, 4? Pain, reflux, coughing like a TB patient, oxygen/HR issues. And diarrhea equal to roughly two weeks worth of poop in one day. Annnndddddd the piece de resistance –

now she’s puking. I cannot even describe to you the horror of watching a child try to puke when their stomach is wrapped around their esophagus in order to PREVENT {all of the above crap i just listed}. yes its as bad as you are imagining. It wipes her out. Luckily we have a pretty good stash of zofran on hand – but the hard thing will be to get it INTO her, see paragraph 3 above – stomach does not want anything in it. Poor kiddo is definitely worn out. our only silver lining right now is that her temp is actually LOW. Typically with “that word which i am not breathing life into” she is super high very quickly. Leading me to believe that her autonomic dysfunction that is annoying on most days, has just kicked it up a few notches into “life-affecting”. her body just doesn’t know quite where to find a happy medium and stay stable. Hoping it figures itself out more on the “not so many issues” side soon. Adding to the craziness is the fact that her poor skin near her dressing is very broken down from an apparent new allergy to pretty much every adhesive under the sun. Not being able to stick her dressing down and protect her central line site is just NOT an option, so we are working with our amazing home health company to find something that will work. We think we have a brand new to the market dressing that is used for mostly burn victims to try – and are praying that this will allow her skin to heal up a little bit. i am sure that fighting that large scale “burn” for a couple weeks is also adding to the stress her system is currently under.

So while you may have seen her in person this past week, and commented on how “awesome! wonderful! great!” she was looking, trust me when i know that it seems unbelievable that she could be doing this badly now. Welcome to Kendall’s world. We like to call this “Residents’ Rude Awakening”. the 50 to 0 crash that Kendall has perfected. *sigh*…

like i said.

it’s gonna be a long nite.

 

Thank you so much for praying. Hopefully I can update with super great news in the morning!

 

terra