then its probably something worse!!!
I don’t even know if this post will make much sense. I am beyond tired.
We spent the nite, literally THE WHOLE NIGHT in the ER here in town last nite with Kendall Quinn. It started out when we got home from a VERY LONG DAY of driving around – grocery store, therapy, school pick up, dance class for three hours, finally back home – and I changed Kendall’s diaper to get her ready for bed and noticed a disturbing amount of reddish blood in it. It was pretty obviously urine (vs. stool), but I was willing to hope that maybe she had just been in an awkward position and just had the hershey squirts. that were tinged very red. She didn’t have a fever, wasn’t really acting sick (just extremely tired), but still, it was disturbing. Got the other girls ready for bed and continued to check on Kendall (taking her temp) every hour until i was finally ready for bed. Went in to check on her one last time and felt her soaking wet. I thought this could be good (she finally peed and its all normal) or it could be bad (it might have even more blood in it!)Well, it was kind of….worse.
Her tube had come out AGAIN. I grabbed her up and ran to our room to assess the damage and sure enough – tube won’t go back in. Stoma started to close up again and i was NEAR frantic about it but grabbed a thermometer and jammed it into the hole. She was screaming, i was in tears for making her scream and i opened up her diaper and sure enough – more blood. I just held her on the bed and cried with her for a few minutes till I realized that this wasn’t helping anyone and i had to do something. How can i thank our wonderful friend and neighbor CLC enough? she heard the panic in my voice and came running over to sit with the girls so i could run to the ER with her. Another dear dear friend met me at the ER so that I wouldn’t be alone and I cannot think what I would have done without her keeping me sane and calm and laughing throughout the entire long ordeal. She pulled chairs away from the hacking coughing flu-infested masses into the hallway so we didn’t have to expose kendall further to stuff she just can’t fight off. She made jokes about nurses with me. She claimed to have smuggled smores stuff in with her (but failed to produce when i needed one!), and she made vending machine runs (again empty handed!!!) But between those two – we were able to survive. Ben noticed around midnite that i had left a message on his phone and decided to cut his trip short and head back in the middle of the nite.
LONNNNNGGGG story short – they had to check twice if her tube was in the right place (and I had to replace it myself – they just checked it for me via x-ray, which the tech was unable to read and had to page the radiologist to come to the hospital to read both sets of x-rays). But problem one – tube out of place – check. Problem number two – bloody urine –…..lots of shrugging shoulders. They DID have enough foresight to place a line (IV) almost immediately upon exam, even though it did take four people plus two hours to get one in and started. She had scarred over her one good vein in her right hand, they blew the other good one in her hand, she has too little of veins in her left hand, and they finally called a transport team in (guys) to just come in and jab her without all the cooing and awwwing we were getting from the female nurses! They got it the first heartless try! So she had fluids, bloodwork, and catheter to catch urine to test. It was brutal to hold her down through all that plus the two sets of xrays. And all the while they had no idea what was going on. PLUS the fact that that place is crawling with flu bugs. bottom line – the doc had no idea what was causing the blood in the urine or what to do about it other than give her the fluids, tell us to call her doc first thing this morning, and to please never never bring her back to their ER because she is way too complex for them to handle. At least he was honest! (And then he offered me a job helping out the nursing staff because he said i am one of the most educated and informed patient caregivers he has ever interacted with).
Oddly enough, towards the end of our attempts to figure out what tests we could run (and yes, i was providing direction!), i asked if it could possibly be myoglobinuria (essentially a muscle protein residue that sheds in the urine when your body has started eating through muscle for energy/oxygen). I knew it was a long shot, but i remembered reading something about the reddish brown color of it in urine, and we know she has some kind of muscle/metabolic dysfunction, plus her O2 sats (how well she was retaining oxygen) were just tanked when we first checked in (meaning she was working really hard to try to keep oxygen in her blood). The doctor just shrugged and said – uhhhhh I THINK that would have shown up in her UA (urinalysis)???? Totally not convincing. i really think he didn’t even know what i was talking about because the overall effect was that i was using too big of words for him. (and i realize that this sounds like i thought he was an idiot, which i didn’t. he was truly the first ER doc we’ve ever had who GOT how complicated kendall’s history was, and i loved the care we received from him, truly.)
Anyways. So we walked out at 5:15 am after almost 7 hours in the ER with still no real answers, but at least we could feed her and we knew her kidneys were functioning ok and that she had lots of good fluids on board.
the pieces fell together more when her doctor from the allergy/immuno clinic called back with the test results from our visit up there a few weeks ago. Basically she isn’t making antibodies to vaccines. So we have just been putting lots and lots of stress on her little system with each vaccine, with no responses from her immune system. she has no immunities to anything. Ok i take that back. she apparently made a trace amount of response to diptheria. So any of you who happen to be sick with diptheria this winter, you’re still welcome to come hang out. All you other riff-raff, you’ll have to knock on the plastic bubble we are hereby constructing around our daughter!!! (Ben says this is all payback for how much we used to laugh at the movie “Bubble Boy”…)
Anyways. A blow for sure, but not one that is completely unexpected. Our next appointment with immunology is not until november 25, but the doctor today who called with the results (kendall’s resident doc) is going to be conferring with the head doc about these results tomorrow. He MAY want to move our appointment up or have us just come in earlier than that given that now we know she is just not protected against much of what is going to be floating around at this time of year, and do we want to wait a month and play roulette with it? He may. I haven’t really thought much about what we should do or what the next step is yet. too tired.
The other good part of the convo with the doc today though is that she had me read back all our labs from last nite and she said it sounds suspiciously like myoglobinuria to her (remember that big word I asked the ER doc about??? yeah, THAT ONE!!!!) So i think that’s the party line for now. Kendall’s body is either attempting to fight off a virus OR its still working overtime from the vax a few weeks ago, but either way, its stressing her body out enough that its started eating its own muscle to stay at baseline. We are just running lots of extra fluids through her tube tonite to keep her hydrated, as that is pretty much all you can do for myoglobinuria. It just points more towards a metabolic disorder of some kind. In fact when the dear darling doctor was talking about myoglobinuria, she said in her little Snow White voice “It sounds like she might have a metabolic disorder!” I tell you it was all i could do to not go “DING DING DING!!! We have a winner! Welcome to PAGE ONE – now try to catch up with the rest of us in Chapter 83 and tell us WHICH ONE!?!?!?!?!”
I swear sometimes all these docs are going to be the reason I end up in the looney bin – and NOt my children as one would think…
But ok – enough rambling for today/tonite/wednesday…it’s just been one long day for too long now.
so that’s what i do and don’t know. more don’t than do.
hopefully i’ll make more sense again tomorrow after a LOOOOOOONNNNGGG nite of catch up sleep!
thanks for reading, praying, thinking of us.
terra and the gang