Where to even begin with an update on Kendall’s medical situation? I’m not even sure where I last left off! It has been another week from the 2nd layer of hell, which I believe is named “CHAOS”. And really, even that is both an understatement, and in some ways an overstatement. On the one hand, we are home. We have somehow managed to STAY home with this girl who requires such a high level of skilled/technical care right now that she would require 1:1 nursing if we were inpatient. It has not been easy. And today it got a whole lot harder. But i’ll get to that in a minute. I want you to know that I AM truly grateful that we still have it as “good” as we have it, and I do not take that lightly or for granted. We are home with a mostly functional Kendall, operating as a family, all together. We have power and electricity and a warm house. We are blessed because of what we DO have, and I want to live in that state of gratitude for every moment we have together – including the crazy ones, or the ones where i’m being driven insane by the demands of all four of my beautiful girls, or the ones where I am frantically trying to do math in my head to calculate hours/timing/preparations for the next set of medications to be administered. All of these things, I am grateful for. I am grateful for good friends who feed my chocolate addiction and friends who sit on the kitchen floor with me creating a pumpkin carriage for my daughter’s wheelchair.
I am SO VERY GRATEFUL to all of you who helped make my “wish” for Kendall’s birthday come true – to have 400 friends on her “Hope for Kendall” facebook page. We hit that goal in just under two days! So now I have a newer bigger one – to have 1000 friends by her fourth birthday (November 14th!) Please go “like” her page if you haven’t already, and feel free to share it with your friends too! i’d love for it to be a place that you can leave messages for Kendall, birthday wishes, pictures, whatever. She goes through so much – more than i even capture in words here on the blog, and i’d love to be able to gather all the good words you all have to say about her in one place. Anyways – that’s that. Speaking of her birthday – I obviously have not had the time/resources to plan a big celebration party like I have in years past, and this makes me a little sad. I love being able to have so many of you in the same room to celebrate another awesome year for our beautiful princess, and her amazing sisters, and all of the people who are the village that raises her! So maybe we will have to figure out some “online” alternative. She is being adamant about the cow (from Chick-Fil-A) coming to see her again and giving her a chicken nugget meal (??? I can only say she’s on a crapload of meds, it has to be inducing crazy dreams!)….Because we are at CFA like at least once a week so i’m not sure what is supposed to make it different on her birthday. But I digress. If I come up with something birthday related, I will be sure to let you know!
Halloween was a huge hit for all four girls! I have TONS more pics of everything to put up from trick or treating last nite – the pics I will be adding to this post are from her parade at school, which was amazing to see. She was able to go to school on the day of her parade, and came home to take a really good long nap which she needed (almost four and a half hours!) And then on Wednesday…oh wednesday….It was stressful. And it really wasn’t because I was trying to cram too much stuff in. It is just because of the craziness of our lives. Until you have lived it, I don’t think I can adequately capture it for you. I listened to Ben try to give his boss a synopsis of what all was going on, and I thought “wow, that all SOUNDS bad, but it doesn’t sound even HALF as bad being repeated back to someone as it is to LIVE it”. So I’ll try to capture it all so I can sort it all out for myself – but know that I will fail at trying to even begin to sum up the insane amounts of stress I was under yesterday/today.
It started when we were discharged on Saturday. That morning, the doctors came in one by one to round and get discharge summaries finished, and one of them almost casually mentioned that indeed, there was a “large non-occlusive thrombus” located in one of her main vessels that was very near where her new line was placed. (this information was all very confusing to me on Saturday because I was getting it piecemeal, but I have since been able to gather that it is in the vein her PICC line was in, which does branch out from the vein her current line is in. Not sure it makes a ton of difference, really, the point being, she has a big clot. our only “good news” about it was that because it was non-occlusive, meaning it didn’t completely block blood flow to a major vessel, it wasn’t anything to get super worked up over. Or so they tried to tell me. “They” being the three different doctors I had come in to the room to reassure me that it really was ok to have this “2-3 inch long” clot hanging out in my kids’ veins and just shrug and say “c’est la vie” basically when asked what we do about it. I really really really wanted to believe them. And obviously, I did buy it to some degree, because later that afternoon, we headed out.
kendall came home on a rather extensive maintenance plan for this new line, which involves three weeks of an antibiotic that is administered into her IV line four times a day (every six hours, including through the nite), that takes an hour to run each time. She is also on four weeks of an anti-fungal that luckily runs only one time a day, but it cannot run while anything else is running. It is taking almost two hours for this to run, but we are hopeful that switching it over to a pumped med (vs a self-infusing “ball”) will help this. Her blood pressures are so elevated at the time being (presumably due to the large clot) that it is hard to get meds to infuse with just “gravity” alone (like we typically do). She also has started a therapy known as “ethanol locking” her line. this involves pushing 100% alcohol (ethanol) into her broviac, leaving it in place (just indwelling the plastic of her line) for three hours, withdrawing that and pushing in a clot-busting medication (but not the kind of medication she needs to bust the big clot in her vein!) to sit in her line for another hour and withdrawing that, then flushing through with regular saline before starting her next medication dose. She’s been on crazier med schedules than this one before – but it seems like so much more to deal with this time, probably because it’s imperative to remember to WITHDRAW the ethanol and tpa, and i am so used to flushing THROUGH when I hook up to her line.
It’s a lot. Even the nurses at the hospital were getting slightly overwhelmed with Kendall’s care, and they have everything prepared and at their fingertips! Anyways – EVERYONE who I talked to between Saturday and Monday was telling me that it was not right that they weren’t doing anything about this clot in Kendall’s vein and I should try calling her doctor again. So when the nurse called to followup on discharge and I asked her to please have Dr. G weigh in on this issue, she readily agreed. FIRST THING the next morning, the good doctor was on the line himself (a rarity!) spelling out the plan for me, and asking me to bring her in right then. I gently reminded him that it was Halloween and that not only was Cinderella planning on enjoying the festivities, but three other little munchkins were depending on me to be present at school parties/parades, get costume stuff, trick or treat as a family…And he conceded that Thursday or Friday would suffice. I also pointed out that if it WAS A true emergency, why did they let us go from the hospital? he actually apologized to me that the ball had been dropped on this situation, and said he was going to do everything he could to make sure we got on top of it now. As bad as that all might sound, to hear the actual conversations, it isn’t as crazy as it might seem. It is one of those “gray areas” that doctors face – to treat or not to treat certain issues. The doctors I was asking for opinions from were all sub-specialists, and none of them are on Kendall’s “big picture” team. That is Dr. G’s job. And as such, he was able to see that treating the clot is the best course of therapy based on the info we DO know. It’s not that the other doctors were “wrong”, they were just operating from a knowledge base that was narrow in scope. (On top of the usual “oh I thought such and such specialty handled that!” rigamarole.)
And again, to try to capture for you the absolute and utter chaos of yesterday morning trying to make this happen (starting her on a specific med and order specific labwork to check her baseline status)…i will fall short. i was literally shaking from the stress of it all by yesterday afternoon. First her TPN nurse (not a regular stay at our house nurse, we are still looking for one of those!!!) needed to come draw her regular labs and change kendall’s dressing. This was stressful because Kendall’s dressing was totally open AGAIN. This happens when she has an allergic reaction to something. When we got to the ER last week, they went to change her dressing (it was all bloody from surgery the day before), and before I realized what the nurse was doing, she had cleaned the entire site with CHG (a cleaning agent that Kendall is allergic to). As such, Kendall’s skin has been peeling off in large chunks where dressings SHOULD be sticking, so we are having to play a fun game of ring around the rosy which dressing will stick today. It’s frustrating, anxiety-causing, and stressful because she DOES NOT need any help in the infection department right now! So we got her all cleaned up and sterile again, the nurse drew the regular labs, we got all the new meds ordered and straightened out for her paperwork, and she goes to the lab. Meanwhile I pack the younger ones in the car to head to my sister’s house to drop off my mom’s broken camera (because my sister has the receipt to return it) – and as we are passing the outpatient lab our nurse takes the blood too, I get a call from her that the lab is refusing to run the bloodwork because she didn’t bring enough blood in and they also don’t run the panel of labs her doctor in milwaukee is requesting. If you are on FB at all, you saw all of THAT hullaballoo, which HAS been resolved as of Thursday afternoon, but yesterday it was enough to get my blood pressure WAY up.
So we pulled into the parking lot of the hospital, our nurse comes out all gloved up, and we pull EVEN MORE blood from Kendall in the parking lot. Because who doesn’t have to pull labs in their carseat???
I got the camera to the right place, got food in Kaylen, got her on the bus, and finally got Kendall down for a nap. I had in this time also fielded no less than four calls from milwaukee that no labs near us (and she was calling everyone in a 50 mile radius from our address) had the amount of medication in a small enough dose for Kendall RIGHT THEN. MANY places could have ordered it for us, but her doctor really wanted her started on it Wednesday night. So between trying to find that, argue with the lab that they COULD pull the right labs because a.) they had just done them all three weeks ago when we were inpatient and b.) if they couldn’t, then they would have a morgue full of dead people who had all bled out and the docs were stumped because they had no way of ordering bloodwork to figure out what people’s clotting times were and if they were at risk for stroke or heart attack or any of a number of different things that the hospital prides itself on treating.
Stupidity. Laziness. Chaos. Breathe.
I was dealing with all of this WHILE trying to be a happy smiley fun room mom for Kaylen’s kindergarten halloween party. She was SO happy to have ME focusing on HER for once…ugh. I was trying SO HARD to not be stressed about everything, but I’m not sure i succeeded. Sometimes i wish I could be “stressed” about whether or not we had cut enough apple slices or if everyone had an equal amount of candy corns in their craft project. But i just can’t. my stresses are so often so much larger than i can put into words, so much larger than any friend can carry. I can only give these huge burdens of stress to Jesus. It only sounds trite until it’s your only option. Trust me on that.
So anyways, as these things typically do, it all worked out in the end. The lab had to be told step by step what labwork needed to be done, and they realized they COULD actually run all of that. The pharmacy in milwaukee had all of the medication available for Kendall, insurance approval, and could have it ready for us early Thursday morning. We adjusted our appointment schedule so that instead of going in on Friday for a “look-see” by the doctor and therapeutic level labs, we went up very early this morning so he could see her as a baseline, train us on the meds, get the meds from the pharmacy, go over the labwork, and we will do the therapeutic level labs from home tomorrow.
Prior to getting a phone call from the lab manager, I thought this was an iffy plan, but we needed the meds, and Dr G needed to see her. So i got up at 5 this morning (oh that pains me to even write…I am SO NOT an early morning person!), got all of her afternoon meds packed up, got my “keep us out of the hospital” bag packed and in the car, and off we went. We made great time, got the meds from the pharmacy (I have never in my life seen a pharmacy receipt for $0.00!!! Praise God!!!), got our “training” on how to give injections (which i unfortunately already have, from when we had to give her B12 injections into her skinny little thighs when she was a baby!), and got the approval from Dr. G that she was “good to go”. Her blood counts are not ideal, but they are enough to hopefully hold her stable through the six week course of blood thinning medication we will be injecting into her legs. (and if you are wondering why we inject medicine into her legs instead of into her veins – I have no idea. I am sure there is someone who can explain it, and if i find out, i’ll let you know. I just do what i’m told!)
I’m honestly not totally sure HOW i am doing with all of this. I mean really, the better question is how is Kendall doing with all of this. SHE is the one who deals with so much, day after day after day. It is always something. Some area of pain or weakness or feeling bad. And now shots into her legs. That cause instant bruising. I’m tired. I’m still kind of stressed. I’m trying to not eat every. single. piece. of halloween candy hanging out in this house. I’m worried. I’m overwhelmed. I’m glad for Ben’s job that allows him to arrange his schedule so much to be home and be involved in this chaos. I’m a lot of things. Sane isn’t one of them. This is losing cohesiveness and sense real quick so i’ll wrap up here and try to make it make more sense tomorrow. Thank you for checking in on us!
Hope you all had a Happy Halloween and got all of your favorite candy!!