my thoughts are random and jumbly right now, so please forgive me if this post is hard to follow. I am ecstatic that we are all working today on plans to finally be leaving this place. But what will it mean when we leave?
I had a very very very hard conversation with Kendall’s doctor on Tuesday afternoon.What he told me didn’t surprise me in any way, but saying the words out loud are not any easier. Kendall is going to die from another infection like the last two she’s had. it may not be the next one, or even the one after that. But at some point her body will succumb to the war that wages in her body between the bugs and her blood. I almost watched that happen before my very eyes this last few weeks. That Friday night that they removed her line – I don’t think i ever really addressed it here, or on facebook, or much of anywhere really – but Kendall was in a very very very scary place for that entire night. I need to do a separate post on that night because it is full of emotions and pictures and thoughts and feelings that need to be preserved but not quite ready to be processed out loud yet.
So to hear that she could die from another infection – not shocking. i’m not stupid. i get the dire straits my child is in.
BUT – I also believe in a huge God, who is one hundred percent in control of Kendall’s story. HE will be the one to write it. It is hard – so very hard – to cling to that faith. And yet, right now, that’s really all I have. Hope. And Faith.
We had another long meeting yesterday afternoon that was with more of her team and was full of much more hope. Plans were created, meds were tweaked, understandings were reached. We all know that we HAVE to buy Kendall some infection free time. We have GOT to break this current infection cycle. The cold hard truth is that there is not much we can do to PREVENT her gut from spitting out these bugs. We could maybe stop the klebsiella by killing it back with nonstop antibiotics, but we would put her at huge risk for a different bug to come roaring in and do the same damage. One of my main concerns is that there is a “hole” or leak/tear somewhere in kendall’s intestines that are allowing her body to leak bacteria out into her bloodstream at a faster rate than the average person, even the average person on TPN. And her doctors told me truthfully, there likely is. Any one of us could be walking around with tears in our intestinal mucosa that allow bugs to periodically translocate. But since most of us don’t have plastic residing in our heart to attach to, we don’t get deathly ill from it. So kendall’s issues are likely a multi-pronged issue. She likely does have a VERY thin/weak intestinal wall from years of it’s “dysfunction”. Due to the way her body doesn’t always move food/formula though, it allows some “pooling” of lots of bacteria to occur. And lastly, when your gut isn’t healthy, your immune system isn’t healthy. So she has just pretty much become this perfect little storm of “sepsis” on a near constant basis.
I think the biggest take-away from our meeting yesterday is that her team is committed to helping ME learn to interpret Kendall’s early signs of infection better. We KNOW she is going to spill some bacteria out. And her body HAS been showing us, albeit in ways that normally wouldn’t remotely raise a doctor’s eyebrows in the least, that it is fighting against the bugs, for a while before her eventual “crash” occurs. We may be admitting Kendall to the PICU quite often over the next few months for “tune-ups” or “rule-outs”. Traditionally, we have tried to handle some of Kendall’s little “episodes” at home, and clearly her body is showing us that it no longer has a tolerance for that. Now that is not to say that we can’t get her BACK to a good baseline, and of course that is everyone’s hope and goal – but in the meantime, we are going to need to baby her for a while in hopes that we prevent the overwhelming sepsis from occurring. Once we can get her stronger and out of this infection cycle, we will be working towards REALLY pushing her gut to tolerate enough fluids that we can look to get the line out. There isn’t a whole lot of optimism that it would be out once and for all – but everyone agrees that if we can boost her nutrition to an acceptable level, we can allow her to limp along for a while without a line. And just try to stretch out the times where she can go without plastic (and therefore life-threatening infections) in her body.
Will this all work? We don’t know. But again – we have HOPE that we are doing enough to support her body with a few new meds/better fluid support, and we her family have FAITH in a God who can move mountains and who can certainly move some little intestines.
So I am leaving this hospital a different person. I’m leaving with a different baby. We are leaving in a very different place. Circumstances and things we’ve seen and lived through have changed us. I used to be naive about just how “cyanotic” one could be and still be alive. I used to worry about my child’s oxygen saturations sitting in the low 90’s. i’ve now realized that sometimes you are happy with the 70’s. I used to not have to worry about things like fluid overload and kidney failure and organ perfusion. i had a sick kid, a medically complex one even, but I didn’t have a SICK kid.
And while I believe that the fighter that she is will emerge from this place and be stronger than ever – it is going to be a long road of recovery. it will continue to be two steps forward, one step back. it will require that all the worrying and and lab-reading and micro-management I already do for Kendall gets kicked up a notch. It will likely require a few more disruptions to family plans and “normal” life. It will have some scary “is she getting really sick or only kind of sick” moments.
But i refuse to give in to those fears, those dark places that threaten to pull me down. I HAVE to believe and be strong for Kendall, for my family. i HAVE to place my fears in the hands of God and turn them into FAITH that the big picture is already in place. I choose to believe that there is a bigger story at play here than just my little world. The messages and cards I have received from so many of you on facebook, or in the mail – they tell me that this is true. Kendall is reaching people I could never have hoped to reach – simply by putting a smile on her face every morning. If she can do that, I can do that.
So that is what we will do. We will keep on keepin’ on.
Today has been one nonstop merry go round of discharge planners, doctors, nurse practitioners, nurses, trips to the car – I’m dizzy. Everyone is VERY on top of every little detail for going home this time because i think EVERYONE understands the stakes if a mistake is made. Kendall has two nursing agencies, five pharmacies, two therapy providers and two DME (provide medical equipment and supplies) that need orders sent to them, double checked, confirmation of delivery given.
At the end of the day though, things should be set for Kendall to finally go HOME. It is so surreal to even say those words because it has turned into Groundhog Day up here where we just keep doing the same things in the same space over and over and over again. But sure enough, at some point late tomorrow morning, Kendall’s last dose of medication will finish, and we will unhook her from all her monitors, and we will settle her into her chair and we will walk out the doors of West 5 PICU. We will get in the elevators and go down to the skywalk and go out into the parking garage where Kendall will breathe fresh outdoor air for the first time in nearly a month. I will gingerly settle her into her carseat, and pack blankets around her for support since she’s still a little wobbly and her seat is a little less supportive than she probably needs. We will put her onto our home monitor and I will load the rest of our
crap months worth of stuff into our car and we will finally finally finally be headed
such a magical word.
i am counting things down already. Only one more night of unrolling my mat on the boxes of bliss. only one more shower in the cramped little no-water-pressure shower in the family room. Only one more super ridiculously overpriced coffee, Only one more night hearing the reassuring, constant, steady-toned beep-beep-beep of Kendall’s heartbeat nonstop. And yet – it’s only one more night of the “safety” of the big towers with all their medical monitors and devices. One more night of having our very own pharmacy steps away, with all the magical medicines that will keep my baby safe and alive if she tries to pull sassy stuff. One more night knowing her awesome team of doctors is just down the hall in case we need ANY little thing. One more night of my big ipad on the wall revealing the intricacies of my baby’s cellular information via labwork and vitals in cute little graphs and charts right at my fingertips. It will be both wonderful and hard to leave this place this time.
I hope that all of these changes have made me a better person. i hope that i have more compassion, more patience, more appreciation of all the wonderful amazing “little” things that make my life worth living. i hope i hug all my babies more often, tighter, longer now. I hope I remember to look in their eyes and tell them all how amazing they are. i hope I dont let the sleepless nights and the burden of being Kendall’s doctor/nurse/advocate make me grumpy or withdrawn or a not-fun person to be around. I hope I remember to appreciate how awesome it is to stand outside and breathe in fresh air. I hope.
Thank you all so very very much for your prayers and love and support. I feel like a broken record saying that but i seriously – i’’m at a loss for words to even BEGIN to thank you all. YOU (and your prayers and our God) are the reason we survived this month. My mommy and daddy who were here every single possible time they COULD be here, holding me up, feeding me food, letting me rant and rave and rejoicing with me when those numbers would improve or she’d squeeze our hands or she started sitting up….My friends who sent food and cards and meals to my house and love to my heart….Strangers who have decided to take our family under their wings and send gift cards and cards of encouragement….
But most of all, thank you to my husband. my best friend, life partner, baby daddy. He has been an absolute rock for our entire family this past month. He has just been nothing short of amazing. I can’t even put it itno words without breaking down in tears. He has driven hundreds of miles back and forth. He has made plans to get the other girls from point A to point B and back again. He has dealt with school starting and dance starting and basically anything that would be an added stress to my life right now. He has sat nights at the hospital so I could see my big girls and he has learned how to navigate PICU machinery and he has painted his little girls toenails into minions as she lay paralyzed and intubated. he has held back his own tears so that mine could come rushing out. He has watched his baby girl being worked on when she was scary shades of blue and doctors were nervously filling our room because I could not bear to watch but needed to know what was going on. He has juggled work and home and hospital and girls and is somehow still coherent. If there is an unsung hero out of all of this – it is him. Please continue to keep him in your thoughts and prayers too – for his continued strength.
I’m not sure where or how to end this one. We are leaving the hospital and ending one leg of this long journey – and yet it seems like maybe the real journey is just beginning.
Whatever the case – we keep on keepin’ on.