Keepin’ On.

It’s been a LONG week. In many ways, I cannot believe it’s only been a WEEK since all this craziness started, and in other ways, i feel like i’ve lost sense of time. And I know for people who are used to staying endless weeks inpatient that that might seem overdramatic, but keep in mind that i lose track of time on a good day, so…there’s the grain of salt! Anyways – I am currently hanging with the girls at a hotel near the hospital. The Ronald McDonald house is IMG_4594perpetually too full for us to get into – in fact i’m not sure they EVER kick anyone out of that one….But I digress.

It was  wonderful to be with them again last nite for the first time since I waved goodbye to them from the ambulance pulling out of Edwards on Monday afternoon. We were able to grab dinner, go swimming, and i got to sleep in a real bed! Granted I got kicked in the kidneys all night by Kaylen – but at least I was on one contiguous surface that was MUCH softer than a vinyl covered wooden box. Today Kendall is in the hospital mostly because she needs her medications still, and they could not be delivered to our house before tomorrow. Also, there was only one doc who thought giving us the boot today was a smart idea, but unfortunately he is the one making the call. Everyone else thinks even leaving tomorrow is kind of pushing it, as do I, but I also don’t think it’s smart to hang around the hospital much longer where she risks picking up some other chaos to add to her mix! So we are pulling some more labs today, possibly doing an ultrasound to make sure the third spacing (fluid retention) and inflammation are going down, and in general just trying to help fine tune things before going home to continue her recovery.

Yesterday if you are on FB, you saw me allude to the craziness of getting little missy’s PICC placed.IMG_4591 It started when we got down to the IR suite, our anesthesiologist had to run to an emergency case, so Kendall and I just chilled on her bed taking crazy pictures and “hiding” from all the nurses behind the curtains. This ended up being a good thing though because it caused the resident to ask us a casual question which led to the attending needing to go review all of Kendall’s previous vein studies to see where he thought he might be able to place a PICC. As I feared, her spots for PICCs are becoming slim pickings. The night before, when she had lost her two peripherals placed in surgery, they paged transport (helicopter team) to come place another one. When they quickly blew through two more in “creative” spots, I knew we were in trouble. After finding one last very tenuous vein (on the inner crook of her elbow – NOT a fun spot to have an IV for an adult who knows how to keep their arm still, and beyond not fun for a kid who doesn’t understand how to not use her right arm!), the nurse looked at me and said we have to come up with a better plan for keeping peripheral access, because she has almost none. Now granted, right now, everything in her body is weak, and we know she’s third-spacing, so we know her veins are just “weak” (meaning they aren’t able to keep a needle in them, or handle the amount of fluid and medicine we need to get through them). But plain and simple, we need to go a LONG LONG LONG time before she needs to use peripheral veins again to give them all a time to heal. Hearing that her peripheral central access was also becoming limited was disheartening.

I’ll try to explain better why this is a bad thing in another post but for now – just know that it was not good news. Anyways – when she came out of surgery for the PICC placement, they took her to the wrong floor, and told me to go a different floor – but eventually (after having to get paged overhead through the whole hospital…so embarrassing) we met in the right recovery room! They were trying to get pain meds into her peripheral, and could not push them in, and the anesthesiologist said it was VERY tricky trying to keep her under because her veinous access was so terrible and he was having to push it slower than she needed…blahhh. I am glad it was THIs particular doctor on because, a. i just love him and his personality, and b. he’s worked with kendall before and knew instantly how to handle her different issues. It was kind of tense for a couple minutes with her needing more meds and no one having orders to use her new PICC line yet (a radiologist has to read the x-ray, report that its in place, tell the surgeon this, and the surgeon has to write orders for use) – but anesthesia decided to just push it in the picc and get orders later. If it wasn’t so chaotic it would have been almost comical. but it was VERY stressful at the moment because i just wanted kendall to feel better. She’s already been through so much, and knowing she was in a ton of pain – so hard to watch.

Anyways – IMG_4577 the PICC is in place, she is getting her actual nutrition again (we could only run dextrose fluids for the last three days because TPN would have killed her PIV’s), got to see her daddy and sissies again, got a good scrubby bath, i got through the HOT MESS of her tangly weave – and in essence – she’s lookin pretty good! I am not real happy with how her labs are looking, even though i understand WHY they still look crappy…it just makes me sad for how bad she must still feel, in spite of her brave game face she always plasters on when her sisters are around!

So we will continue letting her body heal up and recover from this week, and will hopefully be all in our own beds by tomorrow night!

To those who emailed me for the list – sorry – i WILL get back to you very soon! Thank you so much for your willingness to help!

thank you for the prayers and your continual support of our family!

Ok the girls are bugging me to go swimming again…hope you all have a wonderful weekend!

love,

 

Terra, Ben and the 4 Special k’s.

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