Part of your world.

Last night on Kendall’s page, I updated that she was very upset at me for singing “Part of Your World” very loudly to her. Her nurses both joined in too, but it was mostly me she was mad at. It gave us all one of those weird “fun” moments you have to carve out in the PICU, where things are very rarely fun or funny. your sense of humor becomes very warped, your standards for funny are actually quite low, your reaction with laughter loudly inappropriate inverse to the amount of humor actually present.
One of our Kendall Krew posted the following that had me in tears:

Haven’t sung that song in years, but have always loved The Little Mermaid. When I saw your post I looked up the lyrics & if ever there was a song to bring her around, I think this is the perfect one. What you wouldn’t do for a day out of these unknown waters, spending time on the sand with your beautiful daughter, watching her stand on her own two feet again. You’ll get your wish…keep on singing & we’ll keep on praying. Thank you for letting us be a part of your world!! Sending my hopes for a peaceful, rest filled night!!

And for those wondering – here are the part of the lyrics she is referring to:
What would I give if I could live out of these waters

What would I pay to spend a day warm on the sand?

Betcha on land they understand, bet they dont reprimand their daughters

 

Oh she is so very right. What I wouldn’t give right now to be busy running around packing up our whole family for vacation. Kendall’s insane amount of medical stuff included. It hurts my heart so badly to think of our family being apart for our much-anticipated vacation. It hurts to think of them going with just daddy and it hurts to think of leaving Kendall alone here. We were so excited to have Kendall doing so well, hopefully able to enjoy the water park in her Dry Suit that was specially ordered from the UK to keep her lines and tubes all safe in the water. Oh so many plans and hopes for a great fun time with our extended family.  But life comes and happens and interrupts our best laid plans and the best you can do is roll with the punches.

So this afternoon I will go home and will help my big girls pack. I will put a smile on my face and excitement in my voice for them to be able to go and have so much fun! Tell them they won’t even really notice i’m not there because they will be running from waterslide to waterslide all day long anyways. i will try to not cry as I fold up Kaylen’s little underwear and make sure there are toothbrushes for everyone and that they all bring flip-flops. They endure so much. Why now this too?  I am so tired of ….well, i’m just tired at this point.

I’m beyond tired. I am physically, bone-weary exhausted. I am emotionally drained and my body hurts from sleeping on the boxes and my adrenal glands are about to give up the ghost from the non-stop pumping of adrenaline through my veins for the past week. My brain hurts from trying to stay one step ahead of Kendall and whatever curveball she is going to throw today. I am asked all the time “how are you doing” and I answer like i always do “I’ve been better but i’m doing ok”. Because really, that’s the truth. I’m functional. Well, in a hospital setting I am. I am jumpy and impatient and develop a slight tic of leg jitteriness when i’m out in public on the few occasions my family has been able to drag me out of here. I am not super excited to leave tonight. It is so very hard to leave Kendall period, but especially more so when she is still not “better”. My heart is always here in this room. My attitude is dictated by the rate and tone of the non-stop heart monitor she is attached to. Too fast of a beat and too low of a tone is a sign she isn’t oxygenating well and I am worried. A nice regular rhythm with an even tone and she is doing great and i can relax a little. The vent monitor that sounds like a boat horn goes off every once in a while and i jump out of my skin on those.

I want/need to see more of Kendall today. I need some sign from her that she won’t pull anything crazy overnight. I am so so so happy with her continual, slow, plodding progress – but I need to see my rockstar for just a quick glimpse.
I’ll know what that thing is when I see it.

The plan for today is to try to wean her back down to the settings we had her on last night on the ventilator when she failed her ERT (extubation readiness trial). At some point around midnight I guess they came in and made a huge turn down on her settings, so by the time they did the test 5 hours later, she was completely worn out, and failed it pretty quickly (and loudly! oy – those alarms are the worst!) So we put her back to all the settings she had been at prior to midnight (and really for all of yesterday) – and let her rest up. On rounds then, the fellow decides she wants to try weaning back to those failed settings (but not actually putting her in test mode), and seeing where she’s at this afternoon. Myself, her nurses, and the three respiratory techs on the floor all think this is pushing her too hard too fast when she’s showing us clear signs of not being ready, and they all tell me I have to be the one to say enough is enough. It is once again one of those emotionally draining places to be at. Do i put a stop to the vent wean settings, and delay her extubation? Or do I let tthis new to the team doctor who doesn’t know Kendall keep going and risk wearing her out too far again and just keeping on this roller coaster? I know which way my momma gut is leaning, but this is all new territory for me.  Ben will be here soon and he can help me sort it out based on how we know our girl and what we think is best for her.

Beyond that, we’ve restarted Kendall’s TPN (nutrition) again finally – so the hope is that having real food helps her be a bit more energetic and help wake her kidneys up more. She is making more pee – has lost over 2 lbs of fluid in the past 24 hours – but it is all coming because we are forcing it off of her with IV diuretics. Her kidney function is still abysmal, and this is delaying a few other decisions. (Is this not the story of this kids life? waiting on step 1 to be complete so we know how/when/where to go with steps 2-12)

Last week when we pulled Kendall’s infected broviac line out of her chest, a femoral line was placed in her groin. As you can imagine, this is not the most comfortable of places to have a double lumen line stitched into your leg, so her team is anxious to have a plan in place to put a permanent line back in to Kendall’s chest. However, Kendall’s vein access is limited due to the fact that her veins have never been very great, as well as scarring from multiple picc line placements and broviacs. God has been amazingly faithful and has opened up spots that appeared to be unusable in the past. The surgeon on Kendall’s team for this stay REALLY adamantly wants a new “venogram study” to see if anything has opened up in the past four months on the other side of Kendal’s chest that would allow us to place her new line far away from any possible little hiding out klebsiella. In order to do the venogram, we need to inject her  veins with contrast. Contrast does not play nicely with kidneys. Kendall’s kidneys are not playing nice with ANYONE – so we have to keep them in separate corners for now.  I guess a large team meeting was held last night to discuss whether we could do a placement without the venogram study, what kind of line we will put back in, what is the earliest we are looking at, and should we just keep Kendall intubated until surgery so she doesn’t have to endure two intubations back to back. I am not privvy to all the details of this meeting, but I do know we are holding off on the venogram until her kidney numbers come WAY down, and no new line will be placed until the venogram is done. We WILL be trying to wean Kendall off of the vent and possibly extubating her at some point this weekend if she shows us she is ready, and surgery is then going to be at some point next week if her kidneys get on board with this plan.

So really – again – we’re back to her kidneys holding up the show! Well, her lungs have a pretty huge starring role in this super slow production of “as the world turns” too so I can’t give too much credit to the kidneys. Overall, she is still improving and keeping her doctors happy with her progress. She gets a little farther “out of the woods” every day. That is a very good feeling. There is both a lot that goes on medically that I can’t even keep up with in updates, and yet, it seems like the grains of sand in the hourglass of time are being poured out in an anti-gravity chamber. Things are constantly being tweaked according to that 4-hour set of labs, but not tweaked too much so we don’t chase our tails in a circle. Antibiotics are changed, culture reports come back looking crazy so they are ordered to be re-run, potassium tanks, chloride jumps, creatinine is a critical read, hematocrit takes a hit, protein goes lower…..it is enough to make your head spin right off your neck.

and through it all we just wait. I sit on her bed and i rub her feet and i squeeze her hand and i wait for her to squeeze mine back – but all I get are little twitches here and there. She’s comin back online, slowly but surely. I just have to be more patient. Have to wait for HER body to catch back up from this huge huge huge battle she has been fighting. Oh my sweet warrior princess, you are battling so fiercely. I wish I could take it from you and finish the fight while you rest.  But know that we are all standing here, praying you on, cheering you on, singing you on.  I know very very soon you will be back to being part of our world. Please keep fighting.

love you with all of my heart.

 

T.

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