a Kendall quinn update.

I haven’t done a good Kendall update here in a while.

Things overall have been fabulous. As fabulous as things get in our world I guess! Stable. Maybe that’s a better word. Very stable. She’s pulled a few kendallisms over the summer, but we were relatively prepared for them and were able to handle them with what is in our home arsenal.

She started kindergarten in august. Why our schools start in the middle of frigging summer I do not understand. But anyways – she made it!

Except for one small problem…

well two actually.

the first issue, that some of you who saw my facebook posts may remember, is that we didn’t have the “official” health form completed for Kendall. Now to get into the absolute redonkulousness of this issue will probably just raise my blood pressure – but suffice it to say that i was NOT happy when i received a phone call telling me they were going to “forcibly remove kendall from educational services and leave her in the office until the form is turned in”. yeah. no. You don’t get to forcibly do ANYTHING to my child….momma bear mode:ENGAGED.

but I remained calm. And in spite of the fact that the school has an easily one inch thick medical history on my child, we called her doctors and they were able to fill out THE form that assures them that kendall is not at risk for lead based paint poisoning and that she won’t keel over from diabetic shock. (No i’m not kidding. those were the two main issues they needed to have verification on. Bureaucracy gives me a headache. and possibly makes me want to eat lead based paint chips.)

So we resolved THAT issue only to discover that we will be losing our nurse who attends school with kendall on tuesdays and thursdays, leaving us with a grand total of ONE day every week that kendall gets to go to school! UGH – so frustrating. it’s always something…

And yes we have considered multiple other options.

the school (and we her parents agree) wants kendall to have a full time 1-on-1 nurse in the classroom with her. She has far too much going on to just kind of leave her to own devices. But the school does not have a contract set up with a nursing agency. So what has been happening is that we just send our home nurse with kendall. This is a good intermediate fix – but it means her school hours are cutting into the small allotment of nursing hours we are allowed for HOME use. I know – it’s confusing to even me sometimes. Basically – it’s been a survival mechanism for the past year – but now things HAVE to change. No – another agency won’t just be able to have a nurse ready and up to speed any quicker. Either way – we are looking at a couple weeks of training, interviewing, assessing skills….honestly most days i just can’t even think about it because it overwhelms me so much.

It is just that sense that there is ALWAYS so much to stay on top of with Kendall’s care – even when things are going FABULOUS – it is hard to explain it to people. I know i make it look easy. I am GLAD that she is doing so well that it’s hard to see what takes up so much time. I am SO grateful that she is doing well enough to be home. But some weeks that doesn’t make it any easier to deal with the constant attention her care requires. And i don’t mean just her hands on medical care – it’s the supplies, the nursing, the administration, the appointments, the therapy……it is just a lot. And now with school stuff on top of it, it is really wearing me thin to keep up and on top of everything.

but i’m keeping on. I’ll get organized some day. Some day there will be a whole week without any major hiccups that threaten to upturn the entire schedule!

Other than all of THAT hullaballoo….things are good! We are SO very grateful for her good health this year. I still credit the IVIG with a large part of why she is doing so well. It allows her body to be able to fight off the bugs, keep the bacteria at bay. We celebrated her broviac’s “birthday” in august. In fact I believe today marks 13 months with the same line in. This is absolutely astounding for the translocation queen! So yeah – truckin along here.

No huge speed bumps, just staying the course and trying to get her to still learn how to SIT STILL in school for more than three seconds at a time! It’s a challenge.


And because life has changed so drastically in the 24 hours since I’ve written this, i’m going to post it now and do the update to the update.

i look at these words i wrote, less than 24 hours before she crashed, and i have chills.

this is what life is like with kendall.

the other shoe is ALWAYS waiting to drop. You just never know when.

so you either live in fear of it, or you live in spite OF it.
you learn to appreciate the calm days for what they are – because the next day your whole life could be upside down, and no amount of planning can ever prepare you for something like that.

That first breath.

This morning, for the first time in her life, I got to witness my child take her first breath.

When she was born, she was whisked away from me because she was not breathing. She was intubated and extubated in the NICU without me there. I’ve never been present any other time she needed to be extubated for various reasons. But today I got my chance.

I woke up to her silently crying (the breathing tube has a “balloon” that blows up just below the vocal chords to keep it in place, so you don’t hear noises coming from your intubated child typically.) I went to her and held her hand and told her that soon it would be over. Our beautiful angel Rachel peeked in the door and said, i was waiting for you to wake up! It’s time to take out that yucky tube! I ran to put my contacts in and brush my teeth and by the time I came out of the bathroom a nice little party of people had gathered. Kendall needed some major suctioning in preparation for extubation, which she was NOT a fan of.  The tape was slowly unwrapped, the cheek guides peeled off and then just like that, it was out.



Whiney little cry.

it’s a girl!!!!


And I sobbed and threw myself on her and her doctor, the only doctor I would ever want in the room with us at that point, put his hand on my shoulder and just held it there. I grabbed him in a huge hug and said you did it again! And then pretty much everyone in the room was sobbing because our respiratory tech knew that this was the first time I’d seen Kendall take her first breath and she said “you did it mom. you did it kendall”. So much joy and relief and praise and awesomeness in this room this morning I cannot capture it.

And then they were gone, and they had pulled the curtain and I just held my baby and sobbed. Cried it all out. Let the emotions of the past few weeks rack my body and let those tears flow and just held her and thanked God and told Kendall I was so so so proud of her and I loved her and i was so glad she was back.

I do not for one second take this lightly. i know far too many moms who have not gotten their babies back at the end of a long illness. i cried for them and their angel children who I am sure were watching over Kendall over these past couple weeks. I cried for Kendall and I cried for her sisters and I cried for her dad, grandparents, friends, family and thousands of you who have taken her into your hearts over the past couple of years, months, weeks.

And now we look onward and upward. We keep on keepin on.


First up – new line placement tomorrow. I know a few of you were waiting for MRI results last night – and I honestly didn’t know if I would hear them. That report typically goes only to the surgeon who will do the surgery so he/she knows what she’s looking for. But this morning, after extubation, it was one of the first things that happened. The surgeon’s assistant came in and sat down with me and opened up the report on the computer and showed me the part where it said “upper extremity veins appear to be patent and normal functioning”. I don’t know if I can grasp for you the magnitude of those words. Patent (open/working). Not stenosed, not narrowed, not blocked by scar tissue. To say this is nothing short of a miracle would be to understate the case. This is beyond miraculous.  It does not guarantee that placement tomorrow will be “easy” because sometimes the battle is getting to those open veins. But do I believe that God has heard our prayers to open and restore some of those veins in her upper chest? Absolutely I do.  My God can move mountains and He can open up veins.
So tomorrow afternoon she will go down to surgery. Be reintubated. Hopefully be easily re-extubated. Hopefully not be in the amount of pain she usually is post-line placement (it requires a lot of pushing/pulling/tugging like you wouldn’t believe unless you’ve seen it happen.) We are trying to do a slow wean on her morphine that she has been on round the clock for over 2 weeks now (the drip started before she got super sick). 5 days of constant morphine has a high risk of withdrawal. 10 days has a nearly 100% guarantee of withdrawal. It is very likely that Kendall will need to go on methadone to ease her withdrawal symptoms.  But we will cross that bridge when we get there.

We are waiting on Infectious Disease team and Immunology Team to continue combing through her chart and coming up with a short term plan to go home on, as well as a long term maintenance plan for handling/preventing infections better.  We need to look deeper into her possible gall bladder issues and likely do a full abdominal CT still to make sure we aren’t missing anything in her gut that might explain the increased volatility of her translocation (when gut bacteria move into the bloodstream – the reason she has gotten so sick the last few months). We (Ben and I) have a lot of hard decisions to make about Kendall’s care from here. She will not be going home quite the same kid she was when she arrived here in July. But she WILL be going home, and for that there are not enough words to express my gratitude.

Today I am just soaking up her. Her little voice. Hearing the things come out that are so very much her, so very much the same little Kendall still in there, in her weak little body, her squeaky little voice. My heart is soaring today.

Thank you for being on this journey with us. It goes on from here~



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