{Breathing Easy}.

Not me, so much. I managed to pick up my own version of ebola virus and can hardly hear, talk or breathe through all the mucus. BUT – my baby is doing much much much better.

This morning was still a struggle. I could not update this morning because she was still so miserable, and watching her be miserable was making me more miserable. But as my brother and his family prayed with me over Kendall last nite, there was a definite peace about the situation. As I laid my hands on her tiny little heaving chest, rattly with the sounds of all that mucus trying to move around, I felt as if Jesus put His hands over mine, and said that He was taking care of it. He knew what her little lungs needed, He has held them in His hands for far longer than they have been in mine. And from that moment on, it seemed as if she was breathing a little easier.

She still had a lot of pain throughout the nite – we never could pinpoint the source of it. Was it her feeds that we had restarted at half strength, half rate? Was it her IV that has been giving her fits and starts since they placed it? Was it more mucus plugging? Probably a combo of all of the above, and, if she feels anything like I do at the moment – just the sheer hell of tons of pressure building up in small sinus cavities. Then this morning she was back to her super lethargic self, not even giving the Respiratory Tech that she loves “fist bumps” like she has done the past couple days. He asked me if she had a fever and I said, no, not that I know of. When I went to feel her, she was indeed burning up. and she had that horrific smell to her of decaying death that usually signals one thing – UTI (urinary tract infection) – her other archnemesis besides pneumonia.

It occurred to me at some point in my semi-sleep (because there is no such thing as REAL sleep in the hospital unless you are the one with a needle stuck in your hand getting the good stuff) – that this was probably not her kidneys so much as it was her bladder. This is not a new pattern for Kendall – she has a history of holding urine for hours on end, then flooding everything in sight. We don’t know why she does it – but it does contribute to her urethral reflux (pee going backwards up into the kidneys), which is what contributes to the overwhelming UTI’s that land her inpatient. Anyways – I started to think that maybe that is what we were dealing with, and smelling her urine this morning just pushed me closer to that theory. And in spite of the fact that i mentioned this to the senior resident at 8 am, suggesting they may want to cath her so we can a.) pull fluid off of her like we need to, and b.) run a UA to see if this is why she is still spiking random fevers – they still managed to not walk in here until 2 pm as if they had just discovered the recipe for penicillin themselves and proclaim “We think we should cath her so we can run a UA. this will also help us maybe pull some of the fluid off of her body and get her breathing easier again.”

Luckily for them, my sudafed overdose was kicking into pretty high gear by that point so i just pinned Kendall down and said “Gitter Done!!!”

After that she got another bath which worked really well to help cool her off even more (than the tylenol suppositories we’ve been having to give), and THEN things really started looking up. Maybe it was that she had peed a lot right before the cath, and then adding in all that they pulled off for that, and she got all new leads put on giving us a little bit better picture of some of her vitals – but we definitely started to see a lot more of KENDALL coming back. And that was a very welcome sign.

rounds with Dr. A were full of a lot of theories but he finally goes, let me break it down for you like I had to do back on your first visit and we had multiple issues going on. so…

1.) She has RSV, this makes her sick, makes her HR elevated, her breathing harder, etc etc.

2.) Her presenting issue was the metabolic acidosis, presumably BECAUSE she was fighting the RSV. this also contributed to the wacky vitals and the work of breathing.

3.) Her ‘man-made’ problems – which is, now in trying to correct #1 &2, we have created another issue which is the fluid overload.

So – issue (except he says it like this = EES-you) number 1 – she is doing ok with. I would expect that she will still be “sick” from that for a while, but nothing that you can’t handle at home. EES-you number two – her bicarb is bouncing back nicely and she is about as perfect as  you can hope for on her metabolic labs. {side note – I didn’t want to point out to him that this was likely due to the fact that all that oxygen is probably making her retain CO2, which is in this case is actually buffering the acidity, but normally isn’t a good thing, plus she is still getting sugar water pumped in, but ok, she has perfect looking labs, i’ll take it}. So those two things aren’t really EES-you’s anymore. EES-you number three though, is still probably complicating the other two, and is right now what is giving us a run for our money, and that is, because she is still fluid positive, she is still having a lot of pressure on her lungs. we are starting IV lasix (strong diuretic to help pull the fluid out of her tissues and run it through her system like it should). referring back to yesterday’s analogy of the freeway with no exits? we are about to open ALL the exits. Because her metabolic labs look so great, and because we feel like her tube feeds are helping to keep her hydrated appropriately, it is worth the risk of possibly pulling too much off, because she’s got a pretty nice reserve available to her still!

now – the one last complication (psshhht – yeah right – this is KENDALL we are talking about here!) – is that at times, her crackliness is decidedly right sided, while the left sounds just about clear. for those who have been reading along for some time, and absorbing all the vast medical knowledge here at TerraTalking University of Faux Med Degrees, you’ll remember that little miss aspiration likes to swallow food into her right lung – giving her “aspiration pneumonias”. Multiple times. An absolutely eye-rolling amount of times. Dr. A isn’t quite ready to call it that yet – this COULD just be that her left airway is collapsed off again, so us hearing “clear sounds” could just be, in fact, because its not doing its job correctly. And, who knows, maybe she just decided to clear off her left side first. The Lasix will help us determine a little better what we are dealing with here though, but i have a feeling that if little missy has in fact swallowed formula into her lungs yet again, we may have no choice but to go NPO for the winter. I hate even breathing life into those words. But if this is what we need to do to help get her better, then we will find ways around it.

So – our discharge criteria, as laid out by Dr. A, and hopefully not effed up in translation by doogie howser, et al:

1.)Wean her oxygen down to 1L. She has to stay above 94% on 1L. She has been staying near 93-95% on 2L most of the day, but is right now at 96% on 2L. Since she looks the absolutely most comfortable and sounds the least congested I have heard her all day, i’m going to let her get a real good nap on this level of support. Hopefully when she wakes up, she will want to sit up and play a little bit again, and we can start pulling that number down. This means that she will likely be hooked up to oxygen for the better part of the days for a while also, just to continue to help her lungs heal from this virus as wholly as possible. Especially if she does have pneumonia again.

2.) We have to wean off the IV fluids and maintain at least half strength continuous feeds. Yes we still have stuff pouring out of her G-tube. Even if I clamp her off while she’s eating, everything is just running right out an hour later still. BUT – it’s mostly just tummy juice, vs. intestine juice like have been getting. This means that while things aren’t fastly flowing forward, they are at least flowing FORWARD again. We think we will make pretty big progress in this area based on how well she has already been responding. it means that she is looking at probably a week or more of continuous feeds all day long again (vs just the evening/night time like before this), but at least she will be HOME!

3.) I have to say that I am comfortable with how she looks, that she is “ok” enough to come home. And truly, I haven’t had that comfort YET. She has just been pulling too many crazy things, and her “good times” are far too short and too long between to tell me that she really has gotten over the hump. BUT – I have been encouraged by things for the last couple hours. I really feel like tonite will be that final push towards the peak of the hill, and then it’s smooth sailing from here.

 

So that’s where things are tonite. Definitely on the upswing.

We thank you for your prayers. Without them i cannot even imagine where we would be. My heart aches for all of our friends who are also struggling through illnesses and pain tonite. I pray  that Jesus upholds all of His special little ones who so desperately need His healing. If you are inclined to also lift them up in prayer with me – think of Avery, Eithene, Pax, Samuel, Riley, Maggie, and Caleigh. i know there are so many others…

Here’s to hoping we have this little mischievous little troublemaker back soon!

Terra