Ok – first – i’m extremely overly tired, so pretty much everything is hysterical to me right now. Secondly, I’m a little bit like the dog in “Up” who is distracted by squirrels mid-sentence. Third – I have so much to catch up on, I’m not sure where to begin.
So we’ll start with tall toilets. The toilet in our hospital room at Edwards is seriously made for super tall people. i consider myself to be slightly above average in height at 5’7”, and my feet dangle off this thing. It seriously disturbs me. Cause I can’t figure out WHY is it so friggin high??? I mean, I get that it needs to be accessible – but this room/broom closet we are shoved into is in NO WAY accessible for a wheelchair, so i’m thinking it was just some kind of incredible deal on clearance toilets that happened to be made with an extra 8 inches of ceramic at the base. I know you didn’t come here to read about toilets. So i’ll stop now. but seriously. I’d love to figure this mystery out. (and no – i’ll spare you the pics of me sitting on it with my feet dangling. Use your imaginations.)
Now on to the important stuff – the kendall kraziness of the
Basically – when we were discharged last Thursday, it was against my better judgement. The doctor who discharged us just did NOT mesh well with my personality – and this was part of the reason I wanted to stay (cause I did not agree with her at all) and part of the reason i was ok to leave (because I could not stand her. AT ALL.) If you’ve hung around these parts for long, you know i’ve had my fair share of trying to not kick baby doctors in the shins (thank you baby cheesus). This one takes the cake. I can’t even put my finger on it other than to say I felt like her sole purpose in walking into our room was to disagree with everything I said in advocating for Kendall. I know that logic would say – “well why didn’t you just tell her you wanted to stay” or “why didn’t you go to milwaukee in the first place” – and the answer I have to that is…well basically..I just don’t know. I was trying to do my best to keep everyone happy/together with Ben out of town. I really wanted to believe that Edwards was capable of handling a “simple” UTI (urinary tract infection). it is sometimes SO very hard to be three hours away from friends, my home, my life. It’s just an easy thing to know how/what you would do in the same situation. I made the best decision with the information I had at the time. And while I didn’t think Kendall was “all fixed up” – I WANTED to think that, know what I mean? I wanted to believe that my lack of sleep had just gotten to me, and that I was overreacting, and that we all just needed to be home in our own beds and away from cranky crotchety disagreeable doctors who weren’t making logical sense with their arguments.
We spent Friday, Saturday and Sunday once again trying to deal with a kiddo in TONS of pain, still needing antibiotics, still with gaping holes in her abdomen and now with another tube in her hoo-ha (female parts for the uninitiated in “terra vocab”). Monday Kendall started in with some very strange symptoms that seemed disconnected to each other – things like random fits of pain (either she crumples to the ground in tears, starts this low moaning while throwing her head back, or just starts throwing anything and everything she can grab at whomever is standing nearby), extremely bloated stomach, grabbing her head in pain – just weird stuff that both her nurse and I couldn’t quite pinpoint what was going on. Tuesday morning, I knew something was up as soon as I walked in her room. Instead of her usual pasty white paleness, she had “that feverish glow” to her, and felt VERY warm. She typically will get “autonomic fevers” where she will be 101 out of the blue with no real cause – but her skin feels freezing cold to the touch. Alternatively she can feel burning up and have a core body temp of 96. we stopped trying to figure this out last year. She just does it. Her autonomic system basically flips us the bird and tells us to have fun. But this one was different. Her nurse walked in right as I was starting to talk myself down from not panicking, and we immediately set to work hooking her up to the pulse ox machine, taking manual vitals and trying to figure out who to even start calling. Her fever was very real, and making her feel VERY bad. I spent the next hour and a half calling urology (took a stab at who i should call), calling our lab nurse to give her a heads up because I figured at the very least we would be needing to pull blood and urine cultures, trying to calculate plans B-Z because of COURSE she would pull this two days before the first day of school and I was just done. Done. Done. DONE. I didn’t even know where to start.
As I went back upstairs to expand the parameters on Kendall’s monitors AGAIN (raising the limits so that she would stop setting off the alarm nonstop – meaning that her heartrate was skyrocketing and her sats were dropping) – her nurse looked at me and said I think we need to check her again. We checked her with three different thermometers – and then re-checked those same thermometers against ourselves and the other girls because we could not believe she was at 105.7. Immediately I said get her ready to go – took the other girls aside and explained to them that I was going to need to take sissy to the hospital, and that they were going to be ok until daddy could come home. They are so strong those girls…dealing with far more responsibility than their little shoulders were designed to handle.
As I was gingerly carrying a very hurting kendall down the stairs with tubes and wires and machines being carried by her nurse behind me – I had the fleeting thought that I should have probably called 911. I knew she was still breathing fine on her own – but I had serious concerns about her ability to stay stable for a three hour trip to milwaukee, and I honestly debated whether she would be ok by herself in the back while I drove her twenty minutes to the local peds ER (Edwards). Again – hard to put my finger on what about her was so worrisome to me – it was just very hard to watch her. To feel like I had no idea what was going on with her. To feel like she could go way bad way fast. The ER was very quick to get her assessed and start doing all the horrible stuff to her that they have to do (at that point – everything was horrible to her – she was delirious from the fever and was so freaked out by anyone coming anywhere near her). It was one of the worst times I have ever had to pin her down and subject her to the things that were helping her. I’m so glad Ben was able to get there in time for some of the worst of it. I just pinned her head down to the bed facing me and we talked about ice cream drinks and how it was ok to be mad at everyone and that i was so so so sorry and could she please just fight whatever was in her body and be ok. I ended up promising her a shamrock shake (which is impossible to fulfill in the middle of summer) – but once all the bad stuff was done and she had gotten a mickey mouse puzzle from the treasure chest and had the bubble machine going full blast in her face, she forgot about the shamrock shake and I took a cold rag and just let the tears flow into it. I sat there reading your facebook posts/comments offering your prayers and love and help and I felt so overwhelmed.
And then before I could really think about anything else they were wheeling her down the hallway to the peds unit and we started the uber fun process of giving history to a whole new set of nurses and docs. I was quite vocal about the fact that I had NOT agreed with discharge five days prior and that my answer to their standard question “what made you bring her here today” was “because someone here did not do their job last week”. I wasn’t making tons of friends. I really didn’t care. To further piss off the nurse – I suggested that her taking kendall’s temp under the arm was NOT a true reading because there was just no way that she was actually 97 when she had been almost 9 degrees hotter than that only an hour before. Sure enough, when she got huffy with me and said fine lets do a rectal then if you REALLY want me to have a baseline – she found out WHY you cannot trust axillary temps in this kid. She was actually 102. I had to bite my tongue REALLY hard to keep it from sassifying “told you so!” Needless to say, that nurse, nor the doctor who I had such a problem with last week, set foot in our room again while I was there. Apparently the minute I stepped out of the unit to take Karissa to an appointment, the doctor came scurrying in to give Ben some info, but has not been seen or heard from again. Which is fine considering I probably have more info about what is going on with Kendall than she does. I don’t really take pride in having pissed her off so badly. But I DO take pride in the fact that I know for a fact that I am Kendall’s best advocate.
As to why she isn’t at milwaukee this time – we didn’t really have a choice! she was admitted so fast from the ER that we never even discussed transfer. There is a plan in place with both milwaukee and Edwards that should she turn septic (have her organs start shutting down basically), she will be transferred immediately to milwaukee. I do think they have pretty good overall control of the situation at Edwards. The problem is – we don’t quite know WHAT the situation is. We believe it is highly likely that she has a fungal infection somewhere – her line is the most suspect at the moment because her urine looks SO much better than last week. There is talk that she could have a “fungal ball” hidden somewhere in some organ or vein (given her history of fungal blood infections, it’s not a far-fetched idea). Her urine bug from last week could have “converted” (basically mutated). We knew it was at risk of doing that last week. Basically – we have to wait for her blood and urine to finish growing in their little petri dishes in the lab to give up their secrets. This could take one day, it could take up to five if it is truly fungal. Considering that she was on IV antibiotics when she spiked – it could have suppressed the bugs to a degree that they might not show up on a culture. It’s a guessing game at this point. And they are guessing it will respond to one of the four meds she is getting via IV infusions now.
i think they are guessing right. Her fever has not returned to that high degree again, and is staying between 100-102. She gets another dose of something every few hours so it never really gets high. And as long as it stays down, she looks improved. She wants to be awake and watching movies and playing with little toys in her bed. This is not how she typically reacts to fungal infections – so i am kind of stumped. But she’s also an amazing little fighter. her overwhelming drive in life is to be normal – to play, laugh, walk around like she owns the hospital. Tonight before I left to come home to get the other girls ready for their first day of school – she curled up into me and whispered “mommy i don’t feel very good”….Like it was some big secret. My poor baby girl. She really doesn’t feel good – but she’ll never let you know that. I hope we are fighting the right battle. i hope we figure it out soon so she can come home when we ALL feel comfortable with that. I hope we can get the right meds figured out so that we can finish treating “whatever this is” in the comfort of our own home with normal sized toilets and real toilet paper.
I have too much other stuff to be planning. Like how I’m going to clone myself so I can be at the hospital, AND getting the girls on the bus to school on Friday morning. Both Ben and my dad (my two “backup me’s”) are going to be out of town, and i still haven’t quite gotten the logistics down between school pickup tomorrow afternoon, school time on friday morning, school time friday at noon (for kaylen), school pick up on friday afternoon…where and how everyone is sleeping….
my head hurts. I know it will work out somehow. Everything always does.
So much on my heart and mind tonite. But I’m pretty sure i’ll sleep pretty good.
Thanks for checking on us – thanks for your prayers. And if you’re still up for helping – let me know. I have a list almost a mile long. Well, once I get it out of my head and onto paper it will be…
Peace out party people.