The solution and the problem.

I read some crazy hippie embrace the inner you happy horsecaca quote on Twitter today that went something like “Your problem’s solution is contained therein”. Now this had to have been either a rejected script for Yoda in Star Wars or some cheesey fortune cookie insert Happy Dolla Chow Mein, because it just doesn’t make sense. It’s deep. Existential even. Maybe I’d understand it better if I had special brownies or something…

I digress.

Anyways  – it made me think about what we are dealing with for Kendall right now, and the medical term for it is (more Latin, watch out) “Chasing our {bleeping} tails.”

Last nite Kendall started to sound very “junky”. (more medical terms!) Now, I am the first to admit that I have thought my kids for SURE had pneumonia cause you can hear them moving mucus around and it sounds like its in their lungs. Her and Kaylen have both  had that for a week. And kendall’s lungs were always “CTA”- clear to auscultation (listening with a stethoscope). So i really haven’t ever worried about pneumonia or anything more sinister than “just a cold”. But last nite she just sounded different, and sure enough, with the stethoscope, you could hear those raspy junky crinkles and crackles indicating that mucus had finally arrived to settle in to her nice cozy little airways. I was worried, sure, but I knew Dr. A would handle it in the morning, and I was feeling about as good as a piece of meat hooked up to a truck bumper and dragged through Death Valley. (I am hoping that I am not getting the ebola virus that seems to have claimed our family as its long lost home). At some point in the nite I hear the NCT come in to do her assessment, and then the lights came on and another nurse comes in.

then I hear a conversation like this:

NCT (nurse care tech – they are like, half-nurses): It’s 39.3

Nurse: Check it with this one.

NCT: It’s 38.9

Nurse: Check the other ear.

NCT: It’s 39.1

Nurse: Take it axillary again.

{long pause because taking an axillary temp is akin to typing out your college term paper on a speak and spell}

NCT: It’s 38.9

At this point I was about to jump out of bed and be like – It’s PROBABLY going to be high no matter where you take it because she is SICK. It was just like some bad Abbott and Costello routine. I don’t know if they took a course in nursing school that said – if you don’t like the first set of results, keep taking them until you hit a magic number that makes you feel better – or if they just really couldn’t believe that a sick kid might actually have a fever…either way. They came over and shook me awake to let me know that she had a fever but that we weren’t going to run cultures (code for – no one wants to try to stick your impossible to stick baby in the middle of the nite because we still aren’t sure why the thermometers keep giving us these high readings, but you go on back to sleep now and don’t worry bout a thing!)

So this morning our new nurse comes in to ask how the nite was, and I relayed my concern about how junky she was and her increased need for oxygen overnite. He was very calm as he explained that yes, RSV can do that to kids’ lungs. I about hit the roof. When, praytell, did these positive flu swab results come in that no one felt the need to pass along to me???? He seemed genuinely shocked that I did not already know this. Trust me, buddy, no one is more shocked than me!

So – at least we had a REASON. And now we have a monster we can attack vs just continuing to cross our fingers and throw Hail Mary’s toward the end zone. Our plan was to “wait for Dr. A to round”…which finally happened around 1:30.  And herein lies the problem (and the solution…ahhhh wise grasshoppa, listen….)

So the SOLUTION to Kendall’s problem (which is a myriad problem as usual) – but the bottom line was that Kendall needed IV fluids on Friday. This would alleviate the dehydration from all the tummy juice she was pouring out of her G-tube, as well as from not tolerating full feeds for about three days before that; it would also help correct any metabolic acidosis she was in (which she tends to get into quickly, as would be expected when your body doesn’t know how to complete its own metabolic cycle), and being well hydrated would allow her heart to not have to work as hard, thereby bringing her HR down to a more acceptable level.

As of last nite, we were waiting to see what 24 hours on the fluids had done, because she was still acting “acidotic”, and (as I have now come to find out), she was indeed both dehydrated and moderately acidotic when we got to the ER on Friday. If her labs had not improved by last nite’s lab time, we were going to have to do some maneuvering to try to add to her fluids what her body wasn’t producing. In a weird twist that can only be designed by an amazing Creator, the byproduct of giving her more oxygen is more CO2 (carbon dioxide), which is exactly what her body needed to help re-buffer her system. So – her labs were looking MUCH better by last nite, but still not “out of the woods” great.

And that brings us to today’s problem, which is kind of caused by the solution – and that is that her kidneys aren’t processing through all those IV fluids. Now we know her kidneys are sometimes “iffy” on good days. She does not have a kidney “defect” (other than the reflux from her bladder to kidneys), but her kidney labs and scans have always had a “slightly abnormal, let’s keep our eye on this” quality to them. however, this virus has managed to rob energy from LOTS of different places to keep things moving (read: keep her alive/not crashed out), and apparently one of the areas that got ransacked was her kidneys. Meanwhile, she is left with a LOT of fluid in her bloodstream that doesn’t have an exit. Picture the Tri-State on a Friday afternoon at 4, and EVERY. SINGLE. EXIT. is under construction. Those cars have to go somewhere. so they start pulling off the road and just going anywhere they will fit. That is what her fluid is doing. She is “third-spacing” it, meaning her tissues are now absorbing all that excess. For a few hours, that was probably an ok thing. she was so dehydrated yesterday that she had lost a little over 2 lbs from our weight check on Wednesday through our dietician, and skin was literally  starting to just hang off of her bones in places. So the plump cheesy poof look was really workin’ for her for a while.

But i remember picking up her hand an hour or so before Dr. A came in and going – holy cow, she is PUFFY!!! And sure enough, she is. Now – she is making SOME pee. It’s not a horrifically DIRE situation, yet. BUT – all that extra fluid is definitely putting strain on her lungs. Now, a good healthy set of lungs, might be able to breathe through it all in a few days. Kendall’s lungs which are crapariffic on her best day, and are President of crappylung city when she has, oh, say RSV, you can see where the problem is coming in.

The fluid is both congesting her lungs and causing all her other puffy tissues to press on her lungs. This is making them inefficient at the work they ARE doing, and this is why she is sitting on 2L(liters) of oxygen tonite and still not keeping her sats up, still sounding like a mucus factory, still tiring out after 10 minutes of sitting up and “interacting” – i wouldn’t even call what she is doing playing – its just interacting.

So – you say, ok just turn off the IV fluids and give her something to drink so she pees, right?

Except for two things.

a.) she could never drink enough to make herself fill her bladder without puking it all up first – her gut just doesn’t work that fast.

b.) everything she does drink right now is coming right back out of her G-tube, as are lots of fun colored juices from her J-tube, lower down. Yes folks, things are flowing BACKWARDS. (no not poop. yet. i don’t think….that’s just gross.)

ok three.

c.) even if by some miracle I could just hook her up to the pump and shovel fluids into her via her J-tube, we have a high suspicion that she isn’t actually absorbing a whole lot of fluid through her gut. The suspicion comes from the fact that she had BEEN on near continuous gatorade through the pump for about 24 hours before going to the ER, where she was still pretty dehydrated. (and obviously there are other factors that could have affected that, but the bottom line is, her gut absorption seems to take a nosedive when she gets sick. The end.)

And that brings us back to the top of this tail-chasing cycle, where, if we can’t keep fluids going in, we can’t fight the virus, get her GI tract to work, or stabilize acidosis.

We need fluids, we can’t get rid of fluids, fluids are bad, but we need fluids.

Is anyone else as dizzy as me yet?

So what I know is this: We have turned her IV fluid rate down as we have been able to turn her feeding rate UP. This was HUGE. Typically, it takes me a good two days to get to this point when her gut decides to take a vacation. THAT my friends, is prayers at work. Thank you!

we have taken a chest x-ray (I love that they use the portable machine on the weekends – I hate having to load up in the wheelchair to go down to the ER x-ray room on the weekends). We are actually HOPING that she has pneumonia (I know, have you ever prayed for someone, besides maybe yourself on a really crappy week of work, to HAVE pneumonia?) If her current lung crappiness can be mostly blamed on mucus hanging out in there (pneumonia), then we can reasonably assume that her kidneys haven’t taken as much of a hit as it seems like, plus we can actually throw antibiotics at what is most likely bacterial pneumonia. Again, this leads us back to the whole “will her gut actually absorb and utilize the antibiotics” debate, but right now I’m not gonna go there.

If her chest x-ray is clear….then we have to have some words, Dr. A and me. We will need to come up with a plan to keep her properly hydrated, and yet pull some of the fluid off her body. we have used lasix (a strong diuretic) before when she has had bad lung issues, but she was not dealing with this level of dehydration before. it would not make a whole lot of sense to give her a dehydrating med when she is, well, dehydrated. But we may have to make that choice if her body doesn’t decide to start getting some of the fluid traffic off the freeway. If we have to go this route, and I hate to even breathe life into this, but it may take at LEAST a couple days to find the right balance for her, and would more than likely involve a lot more lab draws (which have become their own special kind of hell because its hard to get to her blood through all that fluid). This is the option I hope we don’t even have to address.

There is also some weight to the theory that she is just really responding super crappily to RSV, but, dr A believes that likely, we are dealing with that in addition to one of the above scenarios. Pneumonia or kidney shutdown – pick your poison.

Pneumonia at least is the devil we know. I can take a kid home with pneumonia. I am not being cavalier about it – its just that we have been down that road before, and pneumonia has a relatively predictable course. It scares me in places i don’t talk about at parties to think about her getting ANOTHER infection , or what this means for how the rest of our winter might go. i’d love to think that this is it. LOVE TO. But I have to be realistic on some level. 

This is life with Kendall.

It means that you sometimes have to miss your specially planned weekend away with a mommy friend, and that the suitcase you packed full of cute things to wear to a nice dinner and shopping on the Mag Mile are now your hospital clothes. It means that you will get down to the WIRE while trying to decide if you are still going to make it out of town for your planned holiday get-togethers. It means that even out of the blue, you might still end up in the hospital when you least expect it. And it means you get to experience life with one of the bravest, most loving, strong and beautiful little girls ever to live. (and her amazing sisters) It means you find the miraculous among the mundane, and you learn how to fit a family of 6, plus friend plus grandparent, into one small hospital room for family time together! (it doesn’t work well, but its the effort that counts right?)

And that’s about all I can say about that tonite.

She is perking up – bit by bit. Sitting up for more than five minutes at a time is still not high on her “to-do” list, but she wants to rip open entire packages of baby wipes, which is a favorite hospital game. That’s a good sign!

Thank you for your prayers – I’ll add an update to this post if we get more news tonite, otherwise, we’ll see where things are in the morning!

Terra

And Kendall Quinn!