roller coasters.

Roller coasters are supposed to be fun, right?

Well this one hasn’t so much been! IMG_5388

The roller coaster of “keeping up with kendall’s vital signs wonkiness” was a ride I got on last Friday, rode all week, rode EXTRA times on Friday/Saturday/Sunday morning, and by Sunday afternoon I just had to cry uncle and get off the crazy ride. Kendall’s “rough days” of last week unfortunately continued right on up through this past weekend, and in fact started to escalate by this past Friday morning.

There’s really not much that she does anymore that scares me, or even really makes me bat an eye at. Fevers that spike suddenly with rigors and retching – yeah I jump at that. But beyond that, she blessedly doesn’t pull too many rare stunts. Or if she does, I can usually attach a reason to it, make it make sense, talk it through with her doctors via phone/email, and off we go. So this past Friday as I laid on the floor of her room (because she was a hot whiney mess begging for me to sleep by her), and watched her monitors (because i could tell she wasn’t breathing super effectively and sounded very junky in her lungs), and realized that she was in the 180’s for her heartrate, WITH oxygen on (usually lowers her HR), AND asleep (numbers should be even lower) – I realized that I was a teensy bit scared. She didn’t have a fever, which would have explained these things. I called her doctor and he of the cavalier “kendall’s fine” attitude wanted to send an ambulance to get her from our local hospital upon hearing what we were dealing with. I didn’t quite have the sense that she was THAT bad off, but it was good to know that that was an option if she decided to go cliff-diving towards “oh crap-ville”.

Ben and i packed stuff up, hemmed and hawed, hooked her up to oxygen, dealt with the puking that started, IMG_5382watched her for a few more minutes, bolused some zofran and fluids into her, and saw her start to slowly come back around towards a safer state of breathing. We were both up and watching her all night, waiting for a fever or another spike in her HR to come and tell us it was time to head in, talking with the doctor in milwaukee to discuss options – but eventually things seemed to be somewhat settled down. Saturday was more watching, and more of her flirting with bad numbers, then easing back down just when we thought we would pull the trigger and leave. Bags remained packed, much pacing was done back and forth, we willed her cough to calm with extra nebulized meds/saline, extra oxygen, extra prayers, extra everything. Another fitful night of sleep. Sunday morning she woke up asking to go to “da hosta-bowl” (the hospital), and she actually FINALLY threw in an actual “fever” so at least we had some cause to go get things checked out. She had also started having some VERY wheezy/disturbing lung sounds that morning so, at least the decision was a little bit easier to head to Hotel LG vs the drive up to milwaukee.

For those that are confused by my seemingly random Hospital Bingo, Edwards is where I go if i think she has an infection but i’m not sure so we can pull cultures and observe her. Edwards is a good hospital, just not fully capable of dealing with all of Kendall’s idiosyncracies. LG (Lutheran General Childrens) is where Kendall was first brought actually four years ago next week where we started down the journey of figuring out what was “wrong” with her, where we met Dr. A (her guardian angel on earth), our second home for so long. It is about halfway between home and Milwaukee. If I even remotely suspect that she is having respiratory/lung function issues, which she does every once in a while when her meds need tweaked, we come here so Dr A can be the one who gets her breathing right again. He understands her metabolic disturbances that occur when she starts breathing funky, keeps her oxygen needs stabilized/addressed, plays the balancing game between the right amount of steroids and diuretics if she needs them, and in general is the reason Kendall is alive today. If it sounds like I worship the ground the man walks on, it’s because I do. LG is not a super comfortable hospital to be at. But if it is where HE is at, then when Kendall needs him, here is where we will be! And then there’s Milwaukee, our ace in the hole for everything else. So there IS a rhyme and reason to what I think through – it’s just that I don’t often take the time to spell out all 390 steps i’ve gone through in my brain to work out the algorithm of where i’m driving to.

anyways.IMG_5391

Kendall’s lungs acting up meant we drove to Lutheran. We were gotten back into an ER room rather quickly, had a very nice doctor who seemed to understand that even though kendall clinically looked ok-ish RIGHT THAT SECOND, that there were many other factors playing into my decision to bring her. After getting some labwork and an x-ray back, he called Dr. Aljadeff. I could hear his side of the conversation and it was slightly amusing to me:

“I have Kendal Atkinson here with such and such issues, here’s her lab numbers, initial read on x-ray is clear, should I send her home?”

pause.

“the mom? you want me to get her on the phone for you?" (incredulous tone)

“mom – ummm the doctor wants to talk to you”

Me on the phone sheepishly because instead of paging Dr. A’s service, i had a friend who i knew was inpatient and meeting with Dr A soon give him a hand delivered message to call my cell phone or meet us in the ER….

Dr A, in his thick Israeli accent: “So first of all, thank you very much for making the M family your personal receptionists…. (me turning red) ehhhh, what do you theenk should ve do…I ordered bed for her upstairs and told them to make your orr-dares (orders) my  orr-dares. So eeff mom tells them somm-theeng, that is the order they put in the computer. I need to see her myself in the morning. She needs to be here. Good job. Should ve order more labs? How eezz she doing to you?”

I could see the ER doc becoming more shocked by the second at the fact that Dr A was basically wanting the REAL history from me, not from what her labwork may or may not have reflected. He was a good doc, he just didn’t know us. Overall, it was hard being in a “newish” setting again, where they know Kendall at milwaukee, they don’t remember her here. But we finally made it up to the floor, even though I kind of thought we could have gone home with some steroids and better instructions for what to do to keep Kendall stable. From there it got kind of dicey.

we came up to the floor RIGHT at shift change, and within about three minutes of another admit. The charge nurse thought that the other admit was the only admit, and so we sat here, basically ignored for almsot an hour and a half. I was beyond starving by this point, Kendall ws overly tired, and i knew we still had SO MUCH to do. Histories and med lists and breathing treatments and ordering TPN or fluids for poor starving Kendall. I had all of that in the car for her, not thinking we were going to be so long having a decision get made. We finally got the show on the road at about 10 pm, kendall crashed, and i was not too long behind her.

Breathing treatments continued throughout the night, which normally Kendall would fight tooth and nail, but she was too tired to put up too much fuss. I anticipated that we would see Dr. A late morning, get a game plan, and be discharged to home by dinnertime. After chatting with him though, I did agree with his decision to keep Kendall for one more night for more of the same, having been reassured that whatever was going on in her lungs, it wasn’t as bad as it sounded like, and I wasn’t pushing more fluid into that lung space. (Kendall often “third-spaces” her extra fluids, of which we were running a LOT. Normally they go into her tissues in her face/arms/trunk area, but based on how junky/wet her cough was getting, i feared we were pushing them into her lung tissues, which is a very real possibility of happening.) Knowing that she wasn’t showing signs of pulmonary edema, and that she did not appear to have a bad pneumonia, I felt a lot more confident that we could manage the roller coaster ride at home again.

IMG_5400 Right up until a few minutes after Dr. A walked out of the room, and Kendall’s heart decided to take a mini-vacation. Or something. We (her awesome nurse and i) spent the majority of the day chasing Kendall’s super high heart-rates (well above 200 for large chunks of time – not good), and erratic sats. We finally just cranked the oxygen up, kept her on that, and did anything we could to keep her happy and immobile and not freaking out too badly. (Princess much??) Luckily, she felt so crappy that she really wasn’t making too many demands and didn’t really want to move a whole lot anyways. More fluids were ordered, more labs were drawn, meds were given to stabilize the heartrate, and we watched and waited. Finally late this afternoon she got herself back into a normal rhythm, started to calm down a bit more from a vitals standpoint, and everyone let out a nearly audible sigh of relief. Her nurse was so relieved that she went and raided the “treasure chest” for Kendall and brought back the Holy Grail of Kendall Happiness – a deluxe  play-doh factory. I thought that was going to be enough to set her heart off again but luckily she only got a little higher than we were happy with! I was relieved she felt good enough to play with that.

until she got her finger so contortedly stuck in the stupid thing that I nearly had to break her finger to get it out!

Never a dull moment around here I tell you.

Anyways – we should have some more labs pulled in the morning which, combined with the ones we are waiting for from today should give us a few more clues as to what we are dealing with. The working theory right now is that Kendall’s body just runs a VERY fine baseline, and dealing with a URI (possibly RSV, or possibly just a plain old rhinovirus cold!) and a likely UTI (cultures were still pending last i heard), got her too far off that baseline, and her body was just throwing wacky signals to try to find it’s sense of stability again. As odd as that may sound if you don’t know Kendall (or really any child with autonomic dysfunction/mito issues), it does make its own kind of sense. It’s not the amount of sense that I will feel SUPER comfortable taking back home, because we don’t have the easy access of the hospital to monitor the things we are monitoring here. But it would at least give me some confidence that we can continue getting her stable at home.

she will be having her GJ replaced tomorrow in IR while we are here. It is LONG overdue, and while noIMG_5402 one really thinks a crusty old GJ is the cause of anything we are dealing with now, it’s a “kill two birds with one stone” type of scenario, so they are squeezing her in. They apparently are nice here and let the kids be sedated to change their tubes out (milwaukee is of the “strap them down and GIT R DONE” type of mentality) – so that will add a few hours onto our schedule, but overall, I think we are looking at probable discharge tomorrow late afternoon/early evening. We have a few more loose ends to discuss with regard to what she’s looking like tomorrow. I can tell you I am not a fan AT ALL of how her numbers look tonight on the monitors.

I think in general I am just not a fan at all of this roller coaster she’s on and is dragging us all along with her on. Like i told Ben earlier tonight –

i know this kid like I know the back of my hand. I am not saying that to sound braggy at all. It is just, I guess, my one calling in life. Keeping Kendall alive and thriving with a minimum of medical interventions. I know when x happens that y needs adjusting, and if A is out of whack then B is the likely culprit. I dont know HOW i know this, sometimes I just know it. i am sure it is the working of the Holy Spirit via the prayers that so many of you lift up for us. Prayers are amazing and powerful – never doubt that. But right now, i am stumped. All of the “usual” fixes for her issues either aren’t working or aren’t relevant. Her body is throwing up red flags and I cannot figure out where the problem is. I know that God knows where the problem is, and at this point the only thing I really CAN do is pray that He reveals it to us, or just goes ahead and fixes it. Along with that, that He would restore in me a sense of PEACE about what is going on. Peace that I don’t have to fix everything or know everything her body is doing. Peace that she will be ok through this. Peace that if we are here in the hospital it is where we need to be, or if we need to transfer to milwaukee, that is where we need to be, or if we are allowed to come home – it is the right place to be. That her body would find peace from whatever crazy war it’s trying to wage right now.

If it seems like this is a non-sequitur (that we are worried only about vital signs, and my fear seems to be unwarranted by that), it is probably because there are LARGE chunks of information that are missing. i wish i knew what all those chunks are. I am rarely “worried” or “scared” by things Kendall does, like I said in the beginning. And even now, I refuse to give in to the “fear” of the unknown.

“we were not given a spirit of fear, but of power, love and self-control”. 2 Timothy 1:7

Praying for answers to be revealed by the dawn’s early light.

kendall WILL BE ok. She is in very capable hands here. Please don’t feel like i’m being overly dramatic here. She is ok – and she will continue to be so. i am just concerned from a place of not knowing the WHY behind what she is doing. I don’t like things that don’t make sense to me, not because it means they are bad, but because it means I feel out of control. I do realize that sometimes, it is not FOR ME to be in control. that is all i’m trying to say. It’s far more of an internal struggle that i’m dealing with!

So please don’t worry – but we do appreciate each and every prayer that is said for Kendall. And our family. And the whole situation.

Hopefully this is just like that last crazy drop on a roller coaster right before you pull back into the station, and go “I wanna ride it AGAIN!!!”

Thank you, as always, for stopping by to check on us.

Have a beautiful Monday night/Tuesday morning!

 

love –

terra.

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Comments

  1. Terra, I know that internal struggle too well. We are going through a very similar thing with my princess being ‘not right’ and people expecting me to know why and I can’t put my finger on it. So frustrating!!!! You are definitely in my thoughts and I will be hoping that Kendall gets sorted asap.