Rough Days.

I know it’s been too long since I updated. and that I still have to finish our Florida trip recap.

But tonight I am finally alone in the quiet and have a few moments to try to process my thoughts and the goings on of the health of my family. Not because I am particularly overwhelmed by any lack of health – but just because it’s what is on my mind right now.

We have been very lucky and blessed to have not gotten hit too hard with illness this winter. I credit a few different things for this – namely, we don’t really go anywhere. The girls have dance at a small studio where parents actually respect the unspoken rule that if your kid is sick, don’t send them to dance, and they have school, which is it’s own little microcosm of germs. Throughout the week, we don’t really go anywhere else. Kendall goes to school two days a week and her teachers/therapists/nurses/bus drivers are all looking out for her typically and give us heads up if there is illness, etc. We don’t really run a lot of errands all together – Ben will grab a few things from the store or I will run to Target by myself on the one day we have nursing help, but that is pretty much it. We don’t go see movies, we don’t go out to eat (as a family) very often, we don’t go to the mall or anywhere else really! Kendall rarely goes to the nursery at church…I’m just trying to think of other places she could pick up illness. Really nowhere. Also at the first sign of the sniffles, we usually all start taking oscillococcinum or sambucus (natural immune boosters) and we head to the chiropractor for an adjustment so that our immune systems are all as functional as possible.

But that is all besides the point that it is a nasty winter for illnesses. Last weekend Kealey woke up in the middle of the night having a hard time getting breaths in (as she described it), so we started nebulizer treatments, maxed her out on ibuprofen and tylenol to bring down a raging fever and headed to the ped. Ped took one look at her and said “flu”, which scared me to death for the implications it could have for Kendall. But a rapid strep and rapid flu test were both negative, so we breathed a little sigh of relief and got some more natural supplements for Kealey to use to get through the weekend and orders to come back if fever hadn’t broken by Monday. It ended up breaking late tuesday evening, and she has been looking slowly better every day. Oddly enough, no one else has gotten this same thing that Kealey had – even though everyone had some part of it – headache, sore throat, bad cough.

This morning though, Kendall woke up just a little “off”. She was ecstatic about the snow, wanted to go outside IMG_5331 and play in it (we got a whole inch!), came inside and played quietly with kaylen, and then started to fall apart by naptime. Very uncharacteristic for her – but she cried through her entire bathtime, and not a whiney “I don’t want to be in the bath cry” but a full on truly miserable cry. She was freezing cold (in spite of nice warm water), shivering, and just breaking my heart with her cries. I had to do shots, J-tube meds, change her broviac dressing (which means pulling the old one off, cleaning it while staying sterile, prepping her skin for the new dressing, and then putting the new dressing on), give IV meds, and try to fix her foley cath. UGH – that stupid thing has been giving us issues all week. It was completely clogged off – we could not get anything to flush in – it was like pushing a flush into a brick – it just came spraying back out. Unfortunately it also meant we couldn’t get the balloon that holds it in place to deflate either – which meant we couldn’t just remove/replace the catheter. It was enough to induce a mild panic in me, but every day i would be hopeful that i could move “the clog” enough to get some drainage. And sure enough, it would intermittently work and drain scant amounts here and there. But i knew something was very wrong with it. Her nurse tried to work on it, I was working on it multiple times a day, and we knew eventually it was going to come to a head. It would either resolve or we would have to take her in to have them do something surgically. I am sure i am not explaining this well because I know some of you are thinking “well just do x, y or z and it would have popped right out”. And trust me, we TRIED X, Y, Z, A, B, C….you get the point. I was so desperate I was at the point of trying to TPA her foley cath. It was JUST STUCK.

So anyways – she was miserable at naptime. She rarely actually complains of pain. You can tell she is IN pain because of how she acts or how high her heartrate gets on the monitor, but she rarely actually says “such and such hurts me”. But as she lay there falling asleep in the middle of all these medical things which typically require Ativan to get her through (anti-anxiety), she mumbled to me “mommy I just hurt everywhere, everywhere”. Coupled with oxygen saturations in the 90-92 range (she’s typically at 98-99) and a HR in the 140’s, she had me very nervous. The ONLY saving grace is that she didn’t have a fever. She was actually “un-fevering” and had a lower body temp than typical. She slept for a little over 4 hours and woke up looking more exhausted than when she went to bed. She tried to sit at the table and eat dinner with us, but kept telling us her tummy hurt and she needed to lay down. We hooked her up to a g-tube drain and instantly got tons of drainage just pouring out. Her tube has been popping open from lots of pressure and just dumping bilious stomach contents all over her bed or her outfits if she is awake like today. Typically we don’t see this much output unless she is septic, which she definitely doesn’t appear to be right now. But i’m concerned that something is brewing.

A little girl on her bus on Thursday ended up vomiting all over the bus and going home as soon as she got to school, and I know there are reports going around of a horrid stomach bug hitting this area. I’m not quite sure how a stomach bug would actually affect Kendall, since her gut is basically a red light district hangout for bad stomach bugs on a GOOD day. It would probably be like “hey come join the party!” and she would be none the wiser. But either way – I don’t really wanna find out. I hope it was just an off day.

Back to the clogged foley (urine drain tube, aka “cinderella”). Since Ben was home to be an IMG_5330 extra set of (pinning her down) hands, he was able to work the balloon enough to get it deflated and even though it was VERY tramautic, we got the foley out. It was literally CEMENTED shut with very very thick mucus. Kendall’s urine the last couple days (the little we could get out) has more closely resembled a very full snowglobe (huge chunks of mucus floating in it, giving it a very cloudy almost milky look). We have been attempting to be more aggressive with “flushing” her bladder with sterile water, but this causes extreme anxiety in kendall and obviously, that is never easy to put her through. I think we’ve all learned a lesson here that we HAVE to be more vigilant with the flushes in order to keep that mucus moving through though so we don’t get another foley clogged off like that. *sorry for the graphic pic. That is her actual pee. It is “shaken up” there to get it out of the foley and into the sample cup.*

So she is conked for the night again hopefully.

We don’t have too packed of a weekend schedule, so hopefully she can just continue to get rest and fight off whatever it is that is going on. I’m pretty sure it’s another UTI, especially now that she’s had a couple days worth of urine just mostly sitting there in her bladder (she only pees through her urethra once or twice a day on really good days), but with all the gut stuff going on, plus the increased pain and tiredness, I just don’t know what else to think. I’m very glad she is still afebrile, and hope she stays that way. We are on heightened alert, but without knowing exactly what is going on, figure we are fine to ride it out at home for a while.

Your prayers are very appreciated though.

It is late and I have to get up early so sorry this just cuts off abruptly here, but I just wanted to get this stuff down. Thank you for reading through this jumbly mess, and for always being a part of our crazy lives! I sincerely hope that this post finds all of you healthy, or at least relatively so!

Have a beautiful Saturday, friends!

Love and Hugs~

Terra

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Comments

  1. I’m rooting for you and your little gal, along with your whole family! I hope that the last several days have been alright since your post here and that you are all safe at home (even though one can feel stir crazy during the winter/flu season it’s still way better in my book than being stuck in the hospital–although i am also grateful to the hospital at the same time). As a mom of a son who is TPN dependent due to chronic intestinal psuedo-obstruction i so feel like i can relate to much of what you write. Thank you for sharing your posts and my hopeful thoughts and prayers are with you guys! 🙂

    • Thank you Nicole for taking the time to comment! I am so sorry your son has to deal with all the yuckiness of CIPO also! That is one of Kendall’s main diagnoses, so we are unfortunately familiar with it! And you are right – being home is ALWAYS better than being inpatient! We’ve been hoping to avoid it all week, and have been on high alert the last two days – hoping her body can turn it around on its own! Thank you for the prayers and good thoughts! they are always very appreciated!

  2. Hope Kendall’s body has been able to heal and work through things and that you are off “high-alert” by now or atleast very soon:) It’s super stressful to live with the waiting-with-bags-half-packed kind of feeling! I hope you are all through with it very soon:)