Goodness knows I could probably write about five HUNDRED things i’ve learned in the hospital over the past few years, but for brevity’s sake, I’ll keep it to just five that are most relevant to this most recent stay.
1.) Checking into the ER at midnight after a 3 hour drive is not a super spectacular choice. I recommend getting your act together MUCH earlier in the afternoon so that you have a remote chance of actually getting some sleep at some point that evening.
2.) Pack an extra pair of contacts, especially if you are nearly legally blind and your glasses prescription is three years old.
3.) CARRY CASH just in case the debit card system for the entire hospital is down for the duration of your stay.
4.) Keep a stash of moisturizer, lip gloss and mascara in every bag you might ever take to the hospital. Sometimes you will get sick of that “hospital/homeless chic” look you’ve been rocking and need a little perk-me-up.
5.) Learn that your momma bear intuition regarding your medically complex child IS usually right, and don’t let minor bumps in the road detour you from your belief in yourself.
what a week.
So as a quick catch up – Kendall got her blood transfusion about three weeks ago. It took about 4 days to really see a good improvement, but once we did, it was AWESOME! It had been wearing my spirit down for a while watching her struggle, knowing something was wrong, knowing even what the culprit was and the likely “fix” for it – but not being able to give her what she needed. Fighting through that with Ben, as a team, toe to toe with the docs, it was very tough. But we did it together. And in the end we got Kendall, the one with the spunk and energy and zest for life that we all know and love, back.
We went right from that hospital stay to a weekend trip for me and the big girls up to Madison for a dance competition (they did awesome). We had a great, fun, dare i say – “relaxing” – time, just me and the bigs.
We’ve been adjusting to life with another person in the house since Ben’s mom moved in with us (the week before Kendall’s transfusion). Logistics are challenging at times, but we’re learning to all work and live together! I am glad that we are in a situation where we are able to help her have a place to live, even if it is inconvenient and adds to the craziness of our lives. The girls are getting more used to the idea, but bless their hearts, their lives have never really been “normal”. We’ve always had therapists and nurses in and out of the house. our time is so rarely our own, just us, a family. The basement was the one “escape” they had, but now that’s where Nana lives so they are learning to just escape to quiet corners of the house whenever the opportunity presents itself. Since she has lived in Texas for as long as they’ve known her, they don’t really know her. So to them she is somewhat a stranger, and they have to get to know her still. It’s an all around weird situation for all of us, and just requires a lot of patience, time, earning of trust, and prayer.
All of that to say that when Kendall started getting “weird” on Sunday afternoon, and I knew Ben was leaving for pittsburgh first thing monday morning, I knew this week was going to be a challenge.
We finally all made it to church Sunday morning for the first time in MANY months. I was trying to think of the last time I sat through a Sunday morning service and I honestly couldn’t remember when it was. I think it was last October or possibly November. (we did GO to church on Easter Sunday, but it was not our home church. The girls were dancing with their dance team as part of the worship service at a church 45 minutes west of our home.) Kendall was running TPN and had her catheter drain bag on. We secured everything as best as we could and sent her in to play with her friends in her church class. She was so happy to be there! But on our way out of church, she tripped and took a hard spill. We get home to eat lunch and she started looking puny. She asked to go lay on the couch and as I helped her get settled I noticed her urine bag was full of bloody urine, with tons of blood in the line of the bag. It was enough to mildly panic me, but instead we just put her to bed with some fluids running and hoped that the bleeding would stop. She woke up feeling much better, played outside on a GORGEOUS spring day, and no more bleeding. She went to bed for the night seemingly ok, but within an hour as I was taking Kaylen up to bed, I heard kendall moaning, saw her HR on the monitors, and knew something was up. Went in to her room and she was having the rigors.
If you’ve never sat and held your child while they were having the rigors, I don’t think I can adequately describe the heartbreaking feeling that goes along with that. It’s one thing to sit and hold a feverish child, even one who gets shakey with their fevers. But the rigors that come with a body trying to fight off sepsis are horrid. They absolutely cannot get warm and their little bodies just shake and shake and shake. I had Kendall wrapped in three thick blankets, a sweat on over her pajamas, and just held her close to me and rocked with her. she kept asking me to warm her up, make her warm please, stop the cold. I thought her temp would be sky high within a few minutes so I went to start getting a bag packed. Turns out she was only a point or two above our “go to the ER” threshhold, so I rechecked her after a few minutes and it was below that threshhold, so I figured I would try to get a couple hours of sleep in, assuming I had a long night ahead of me.
Thanks to our monitor from our wonderful amazing friends, I was able to sleep in my own bed and watch her numbers from there. She managed to calm herself down within an hour or so, and by that point I was very tired, so I figured I might as well crash, wake up if her alarms went off again and make a plan from there. But i was stumped by her relatively low temperature. Rigors typically equal a 105+ degree temp, which almost always equals a fungal infection/sepsis for kendall. Rigors plus a very low grade fever = confused mama. I was waiting for the other shoe to drop Monday morning, but her nurse was reporting low temps to me. I finally put together that her nurse was doing a temporal scan, and upon feeling Kendall, knew that wasn’t right. (to get a true and accurate temp for kendall we have to do rectal temps. I do not know why. It is just how she is.) Rectal temp showed her to be 102.7 (vs the 97.1 she was getting on the temporal one – the one that scans the forehead.) This is the craziness of Kendall’s body. So at that point, I started calling Milwaukee for help.
While waiting I figured I would drop off some urine at the local lab because I suspected it was another UTI that needed treating. By the time Kendall woke up from her nap, after a good hefty dose of ibuprofen, her temp was back down to normal range and she was laughing and playful again. I was super stumped, but happy to see her like that. Still waiting for the other shoe to drop. The big girls came home from school and while we were driving to the chiropractor, I told them that Kendall would likely need to go to the hospital. I could see their little spirits fall. They knew it meant staying with their Nana at our house, that it could be a while til we were home, all the usual suckiness of us having to be up at the hospital in Milwaukee. I briefly toyed with the idea of trying to take her to Edwards, but knew that if she did get VERY sick, it would be harder to get her out of there, and plus I would need Milwaukee to make any decisions about her line or such if it was that. (Plus the memory of having to spell out the correct antibiotic for the doctor last time since he had never prescribed that medication before….) As much as it sucked, I knew if Kendall got another fever, it was gonna be Milwaukee or bust.
I was exhausted from running around all day, came home to make dinner, get kids ready for bed, do homework with all three, and shlep them up to bed. Sure enough, as I was getting Kaylen tucked in, I heard Kendall’s moaning and monitor. I could tell the minute I opened her door that she was hot. I about fell over when I saw her at 104.7. That is typically BAD bad news. I paged Milwaukee, and went in to tell Kaylen I need to take sissy. Kaylen started SOBBING that she didn’t want me to go, she hated Kendall’s line, hated kendall getting sick, please take her with…So heartbreaking. Milwaukee called back – it was our doctor who knows us, knows Kendall, and knows exactly how bad that high of a temp is for her. He asked me three times if i was sure I could get her there in our car by myself or should he send the ambulance. I told him that I didn’t know if it was the right call, but that I felt that I could get her there safely. Finished packing up the car and went to tell the big girls and got more of the same crying and pouting. I had nothing left to do but call my dad and see if he could come get the girls. It was the only option they were comfortable with at that point.
So off we went – my girls packed into my dad’s car and us packed into mine.
Longest drive I’ve ever made. Thankfully Kendall was conscious and talking to me every once in a while the whole trip. I was SO tired. We hit the Wisconsin line and I wanted to cry – we had another hour-ish to drive and then all the getting checked in, history, waiting, deciding…..i knew it was going to be a long night. My eye started feeling like it had been stabbed with a hot poker about 45 minutes into the drive, and it only got worse throughout that long night.
Of course we get to the ER and Kendall’s temp is back down to 97 rectally and she’s acting mostly ok. The attending ER doc who we never actually saw come into our room ordered a peripheral IV to be started with a slow drip of D5 fluids. The nurse came in to tell me that and I asked her if he was going to be the one coming in doing a dexy scan (blood sugar check) every ten minutes since he wanted to stop the TPN that was running into her perfectly functional broviac. I was getting slightly stabby by that point. It irks me when doctors make decisions based on their book knowledge and never even bother to lay eyes on a patient. Thankfully someone or something made a call to admit her and start antibiotics. So we pulled in to the ER parking lot at 12:05, got admitted and up to the floor at 4 am, and we did history, meds, and cares up until 6 am. And then Kendall got Red Man’s – a reaction to one of her antibiotics that causes intense, usually painful, itching and burning. It’s kind of like an allergy but not a full on allergy. It was just not what either of us needed to deal with after that long night!
Tuesday we slept. And slept. And then slept some more. All of the docs coming in and out of our room could all tell Kendall felt like poop, and she was starting to show some “soft” signs of possibly going septic. I felt so horrible myself that I wasn’t of much help, and there wasn’t much to be done anyways besides waiting for cultures to grow. We had a good talk with Special Needs (Kendall’s complex care management team) and Urology about the game plan, and went to have an X-ray and ultrasound of Kendall’s bladder and kidneys. Even though she is growing gram negative rods in her urine (meaning she does have a UTI), it is believed that this is just her colonization, a bug that is always going to be there because she always has plastic inside of her bladder. But to be on the safe side, they wanted to take a look and make sure they didn’t look crazy inflamed or anything.
we found out this morning that her kidneys actually look wonderful, and that is due to the vesicostomy being placed. It is doing it’s job of releasing all the pressure she had been having previously that was putting pressure on her ureters/backing up to her kidneys. So that is spectacular news. However, they see some “areas of concern” on her bladder and we are waiting for urology to weigh back in on what that could mean for this acute situation, and longer term. Whatever they are, they are likely to have been there for a while, so the significance of them could be something, could be nothing. Overall, things are headed in a good direction though.
We are hopefully going to get an “all clear” tonight from her cultures – meaning there was no growth on the blood cultures at 48 hours. Once we hear from uro about the plan for the bladder issue, the team will come up with a plan for antibiotic coverage at home, and discharge papers will be written! We should be back in our own beds by tomorrow night!
Thank you so much for all of your prayers and support as always. Sorry this turned into a novel and I am trying to wrap it up now between 389 distractions and interruptions.
I hope you are having a blessed evening with your family and friends, wherever you are! I’ll hopefully update again from HOME tomorrow night! Fingers crossed for no Kendallisms tonight!