Head to Toe, Part 2.

So when I left off part 1, I had just crashed on the couch and Kendall was stable-ish.

She continued to need high doses of the pressers (medications that work to keep your heart pumping and to keep your veins constricted enough to hopefully keep the blood/fluid in the veins and out of your tissues), and was receiving multiple units of FFP and cryo throughout that night. FFP and cryo are blood products that are specific components of your blood designed to help/aid in situations like DIC.

I was awake by 6 – just not able to sleep, too much activity going on, too worried about everything. We met the doctor who i will forever be grateful to for saving my baby that morning. He told me she was better, but nowhere near out of the woods. He explained to me that the septic shock had sent Kendall’s organs and vessels into a tailspin and that all the medications were working to try to keep her heart effectively beating and stop pushing everything out to her tissues. Her labs were “a mess”. She was in severe lactic acidosis which was causing some respiratory issues (for those who know, her levels were in the 40’s.). Everything we were trying to fix was just making something else worse. Dr. S did an amazing job of explaining to me what i needed to know, but making sure not to overwhelm me with things I didn’t need to know right then.

It was blatantly obvious that Kendall’s already crappy veins were not going to handle the stress of having all the multiples lines running into them. We had bi-fuses and tri-fuses everywhere, and still were having trouble having enough spots to run in all the life-saving meds, antibiotics, fluids, etc that she needed right then and there. Kendall was put on the schedule to go have a PICC line placed, possibly two. We were unable to touch her central line at that time because it had a quad fuse (four lines) lumen coming out of it running the pressers and steroids that were all that was keeping her semi-stable. Her arterial line was precarious, but oh so necessary, and only certain things were able to be run into that line. They were also running constant blood pressures off of that line because we needed to make sure the meds were doing their job. Another value on the monitors that we’ve been watching all week has been her CVP – central venous pressure. I don’t fully understand why our doctor was so worried/upset over this number, but i know he was. It somehow indicates the backup of blood in the liver because the heart is getting overstressed, blah blah blah. Anyways, we were hoping for a 7 – that is apparently “normal” in most normal folks. We were in the 100’s.

anyways – going down for a PICC line was a necessity. By this time we were having to use some strong sedatives and pain meds to keep Kendall in a calmish state, but trying to balance that with not suppressing her vitals any further than needed. When they were about to take her back for the PICC she was starting to hallucinate and kept telling me and her nurses to “get dat! get dat sing mommy! it’s right derrr!!!!!” reaching for some imaginary thing in the air above her. She was talking very strangely – and by that I don’t mean what she was talking about, but rather how her voice was. It was like there was so much pressure everywhere, she could only use single syllables in place of words. Luckily once she came upstairs from the PICC procedure, she was mostly conked out for the afternoon. But had started to be oh so very puffy. Almost unrecognizable.

Throughout this afternoon and evening, her doctor kept coming in her room, checking the big lab/trends board, pacing, thoughtfully pondering the numbers on the screen, then pacing back out of her room. Things were changed and tweaked, labs were being constantly ordered and then more things were tweaked based on those results. This board thing is amazing. It spoiled me. It is a 42 in flat screen TV that is touch screen. So you can tell it you want to see all the lab results for the last 24 hours, or you want to read the culture reports, or you want to see a graph of her fever curve and I’s and O’s (ins and outs, or how her fluid status is). For a micromanaging lab hoarder like myself – it was a dream come true. I was able to see within minutes how bad her labs were, or what the doc was worried about or if her acidosis was resolving. (They told me later i’m not supposed to actually touch it, but since I managed to not break it – yet – they were willing to overlook it!)

Kendall ended up needing a full blood (PRBC) transfusion at this point, and ended up getting two full units. Considering the absolute FIGHT we had to go through to get Kendall one a few weeks ago, I knew things must be pretty bad. however, I did find it mildly humorous that the doc referenced “the anti-transfusion movement” going on at our hospital. He was seriously just an amazing doctor – he could make me laugh or at least smirk even while telling me absolutely horrible news about my child and her medical status.

I know this is kind of getting disconnected here – but it was a long crazy week! By that afternoon, Ben was up there with me, and the girls had gone to a friends house, all together, which was a huge relief. I remember that we were both exhausted and decided we would take turns being up with her and sleeping. I took the first shift, mostly because I could not keep my eyes off of her and the monitor. My mom sense was still on extreme high alert, and even though I was exhausted i could NOT let myself rest. At around 2 I think I finally came and crashed on the couch again, and Ben got up and stood bedside with her for a few hours. I know I could hear her all night whimpering and thinking – I don’t think she’s breathing right – but I could hear Ben trying to get her morphine so I thought maybe he was on the right path. i was back up again at 6:30 and saw that he had made her wear her oxygen again. In spite of that, and at 2 Liters of support, her saturation numbers were crappy. She was in pain, grunting and struggling to breathe (even though it was hard to tell because she was so pudgy from all the fluids), and very mad at the cannula on her face. she kept tearing it off and would drop to the low 70’s for her sats. The doctor and ANP’s (nurse practitioners, huge in Kendall’s care here in the PICU) were in and listening to her, and all commenting on how clear and fine she sounded, but could not figure out her crappy sats. After an hour or so of this and watching her decline so quickly, a STAT chest x-ray was ordered. Within fifteen minutes of the x-ray machine pulling out of our room, they were in with a machine setting up to start Kendall on bi-pap support.  This all took a while to actually get set up, but by the time they did, Kendall was having none of the huge mask on her face. she didn’t have a ton of strength left to fight us, but she was crying which was making the pressure monitors go nuts, and her sat monitors go nuts from dropping. The respiratory tech was in here constantly trying to mess with the settings, turning this, tweaking that – nothing was helping. Morphine and Ativan were given, and the crying stopped, but she was still struggling for breath.

Dr. S came in with the whole team and explained to us that she was still working very hard, sending herself into a respiratory alkalosis (worse than the metabolic/lactic acidosis we were still struggling to correct), her blood gases (which i still don’t have a good working knowledge of what’s what) were crapping out, and that we probably needed to discuss intubation. We came up with a plan to give her an hour to prove to us she could turn it around.

I think I knew in my mind we were headed there. His words did not come as a surprise to me, but rather almost a relief. I was watching her work so very hard to breathe, and I was nervous and i was scared that soon there would be nothing left for her heart and lungs to do. I’ve seen this kid deal with pneumonia after pneumonia, i’ve watched her choke on her food and have scary moments. I’ve watched her go slowly septic and look pretty gosh darn sick. But I have never stood there helplessly watching her try to slip away from us, unable to do anything about it. I felt confident in the plan to give her a chance though, because if anyone could pull herself out a tailspin, it would be kendall. Our nurse Rachel was in there the whole hour and fifteen minutes of the “trial”, her concern for Kendall evident on her face.

And finally, i saw the team gathering outside her door and I knew. I knew what the answer would be.

“I think it’s time we give her the break she needs. It’s time to intubate her.”

to be continued…

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