Really – do you even realize how wonderful of a place home is until you are away from it for a few days? That familiar smell of the fabric softener when you open the garage door, the way my pillowcase smells, ben’s shampoo in the bathroom. How very comfortable it is to sleep in a bed, with a real pillow made of cotton instead of plastic hypoallergenic material.
I thank God that this was a short stay for Kendall. For those who are not aware, let’s see if i can catch you all up. I should have blogged more last week. Or at all – but who’s counting, really? Anyways – so starting last Sunday, Kendall started showing signs of getting either this same cold/virusy thing BACK that she has fought since December, or a new one, that looked eerily similar to what we’d been dealing with. Sounded similar too – with the real junky liquidy breathing, increased nite coughing, puffy eyes, and the crazy amounts of snot pouring out of her face. She did her sleep all day, and all nite, gig on Sunday and Monday, and her therapist on Tuesday even put in her notes “Kendall was extremely tired during her session today”. By Tuesday afternoon I had just a weird feeling – like something was making me feel like my alert level should be heightened, but it wasn’t anything specific that I could put my finger on. I tried to convince myself it was just because of next week’s “anniversary” of going into the hospital and kind of starting this crazy medical journey we’ve been on. But the feeling would just not go away. Wednesday was a somewhat busy day, and we didn’t come home from our running around till 6:30 pm. I put Kendall immediately to bed at that time with her pulse ox monitor on, feeling relieved that we had made it in to the chiropractor and that maybe now Kendall’s body would have more ability to fight off this junk she was dealing with.
Kendall’s pulse ox alarms started going off about 8 that nite, and continued to alarm at least once an hour right up until I went to bed around 11:30. Sometimes she alarms because her O2 “sats” are dropping – meaning the saturation level of oxygen in her blood has dropped to a level we don’t want to see (low 90’s is what her pulm doesn’t want her to get down to), and sometimes it alarms because her heart is working a little too hard to KEEP those sats up. This is actually an appropriate response to have, and isn’t so much an “alarm-worthy” event, except when her heart is working that hard for most of the nite. The alarms aren’t there so much to tell us that something is going way wrong as much as to tell us that something is happening that we should keep our eye on. So when I started hearing a lot more alarms than usual (typically I might get one or two a nite that resolve themselves within a minute or two), I admit that my already heightened alarm level was close to being raised ANOTHER level! For her first few alarms after I went to bed, i was getting up and going in and watching the monitors, and I could hear her breathing from the doorway with all her congestion, so I’d just keep my eye on her to see what she was doing. They were mostly all kind of “combo” alarms, where her sats were in the low 90’s, with a pretty high HR to pull her back up. She would kind of pick herself back up within a couple minutes, and while she was breathing a little faster than I would have expected for nite time, I was pretty sure it was just due to all the congestion. Her body seemed to be doing all the right things to handle the hardness of breathing she was working through. So by 4 am when I heard yet ANOTHER alarm, I thought, ok, she’ll pull out of it. But it kept alarming, much longer than any of the others typically alarm for. I went to her room, saw the numbers and went into full out panic mode. She was at 77 for her o2 sat, with a HR of 65. Her normal is 97% o2 sat with a HR in the 110-120 range. This alarm was for a BAD reason. I went over to her, could not hear her breathing like I had all nite, could not FEEL her back moving (indicating she was breathing), and she was freezing cold. I started patting her back and calling her name thinking she maybe just needed to wake up and take a big breath, but that wasn’t helping, so I flipped her over and she was just a rag doll. I was whacking her on her chest, rubbing her sternum, calling her name, praying for the numbers to jump back up, trying to slap her cheeks a little – ANYTHING to get her to wake up, to breathe, to bring those numbers up and make the alarms stop. I have no idea how i made it through those few minutes which felt like forever but was probably only 2-3 minutes. I somehow thought to try squeezing her toenail beds with my fingernails (clearly I watched way too much “ER”), and I am not even sure that that is right thing to do – but it worked along with everything else, and she took a big gasp inhale and I could tell she was awake. It still took a few more minutes to get the alarms to stop going off and bring her numbers back up to an acceptable range, so I just held her up for a few minutes until i knew she was kind of over the hump. I about took her monitor off and put it on myself because I am SURE my own heartrate was well into the 200’s!!! i was just so panicked because i didn’t know if i should leave her and go call 911, and Ben wasn’t here so I couldn’t call him and it just seemed like I needed to stay with her. It scared me pretty badly. I think I only went back to sleep after that out of sheer exhaustion – but I was up again within an hour for more alarms. none as bad as that 4 am one though. Once i thought the offices would be open, i started calling her team. Complex Care was the first to call me back (since we had already had a phone call set up anyways about some of the HR issues I had already been seeing and her tube site looking so nasty) – and her NP (nurse practitioner) suggested that I call her pulmo (Dr. A) to get his thoughts. So I talked with Margie the nurse at his office and she seemed relatively alarmed at the numbers also and said i would probably need to bring her in. Of course a few hours removed, and seeing her up and smiling and happy to be eating her cereals, I thought, ok maybe I am over-reacting. Hearing both of those nurses be as concerned as they were was a definite reality check. I was NOT looking forward to having go up to LG (the hospital), but if Dr. A did want to see her, of course i would, crazy as it is to have to find arrangements for karissa, kaylen and then both girls after school. And sure enough, the call comes back less than a half hour later – she needs to come in.
Ben was somehow able to rearrange some meetings and drive from milwaukee to meet us at the appt, and thank God that he was. We get there and go to check in and the receptionist tells us we need to go immediately to radiology for a CXR (chest x-ray). Seriously. I could probably set up a CXR by myself in my sleep by now this kid has had so many of these. Strap her in to high chair, wrap her with wide velcro strap, wrap her with lead apron, get my lead apron on, hold her hands above her head without her dislocating her shoulder (this is not easy given her unstable large joints and her absolute Rain-Man-ness about being touched or pinned down against her will), wait till she takes a big inhale after holding her breath screaming, take picture. Turn big chair sideways and repeat.
From that moment on she started to get more and more and more wheezy and junky and I am just beating her chest and back trying to get her to cough up SOME of this junk because I know if Dr. A hears all that it’s a one way ticket to the floor. And clearly that was all to no avail because when he comes in and examines her and we go over all that has happened since our last visit for pneumonia three weeks ago – he says “well, she’s a very borderline situation. My preference would be to admit (except he says it like this – aD-meet) her, but I will leave it up to you. We can try to continue treating this at home, but i will be honest, we are looking at at least a few more weeks of this. Or we can put her in for a few days, get her full of IV antibiotics and steroids, and start to beat this sooner than later. But i will give you a few minutes to think about it.” i looked at Ben and he says “put her in. It’s time to just get her the help she needs and get her OVER this thing already”. So at least the decision wasn’t really ever in my hands. I hated having to be in that position. It truly could not have come at a worse time. Friday I had to be the room mom for Karissa’s Valentines Party, Saturday was the girls’ first big all day dance competition, and Sunday we had a big meeting at church that I still had about 4924 things left to do on.
But I think it was the right decision to make. I knew I could not take another event like Wednesday nite again. I knew that I had been on “orange alert” for a reason, and that this was my chance to calm down a little, try to get a hold of what is going on with her.
So in record time, we were heading up to the NEW peds floor – I made Dr. A request a tower room for us. It’s the little things in life, you know? Fancy new rooms, with cool disco lights, TONS of space for all the pumps and crap we have to have for kendall (because God forbid they put the IV pump on the same pole as the feeding pump, and don’t forget the pulse ox machine) – we used to trip over ourselves in the old rooms. Although I will say they were a little quieter. And a LOT easier to ummmm….smuggle contraband items into. If you know my penchant for kleptomania of medical items, you’ll know what means! 😉 But it was nice to have a view of real life out the window, and to know that we weren’t there for a long drawn out stay with no answers. It’s still not fun to have to be inpatient at all, but at least this time was kind of on OUR terms, not some crazy out of control medical situation which no one knows how to handle or calm down.
So that’s what happened on Thursday. I’ll post about the actual stay itself in another post.