It is hard to believe that last Thursday nite we checked into Hotel Milwaukee, with a whole different kiddo on our hands. I think I knew she was sick, but I don’t think I knew HOW sick she really was or would get. And honestly, I don’t think the gravity of this week will hit me for a while. I kind of hope it doesn’t because what you will encounter if you see me in real life is probably a hot sobbing mess of me.
I guess tonite I should kind of recount a little more of what happened up until last thursday to kind of get us here. Or at least hit the highlight reel.
In essence, we knew from the first time we accessed Kendall’s port that we would need different needles. To access a medi-port, you use a special kind of needle that is called a “Huber needle” (I have no idea why), that is bent at a 90 degree angle, that pokes right down into the port well, and then you secure the whole thing. Ideally, the needle is just about flush to the skin through the port, leaving you enough room to slide a teeny foam skin protector patch right underneath it. Also just as ideally, you do’nt have to leave a port “accessed” (having the needle stuck into it) for more than a couple days at a time. That is the beauty of a port. It’s there when you need it, and very unobtrusive when you don’t. Unless you’re Kendall. Dealing with our HHC (Home Healthy company – the place that delivers all your home medical supplies. For those times when you want your kitchen to resemble a hospital pharmacy.) Now, God love them, they have been great for two years. But with this port, they have been less than helpful. We told them after the first delivery that we would need smaller needles. They do make smaller needles. apparently our HHC needs to get them forged from iron milled in the Maldives or something because they STILL do not have smaller needles. A month later. The reason we need smaller (shorter) needles is because kendall has zero body fat on her chest, and what happens is that the needle sticks up off of her chest a good half inch still. The needles are made of rather thin metal, and when Kendall lays on her belly, it crushes the needle.
what happened last week (if you saw on facebook) is that Kendall’s needle had “fish-hooked”, and made kind of a J, coming back up through her skin. This meant that we had to de-access Kendall and that her chest was sore, and the skin over the port was a little angry from all that trauma. Because it was also pouring TPN out onto her skin that was poked through twice, it just added insult to injury. We got her cleaned up and gave her a bath (something she can’t have while she’s accessed, you don’t want a central line getting water over it cause it could grow bacteria and fun stuff that is always in your water unless you bathe in sterilized water), and then we went to re-access her. It took two more pokes to get a needle to stay in at that point. Kendall then got hooked back up to her TPN, went to therapy, took a nap, and woke up to watch Hot Dog. As I was putting her in her chair, i noticed her lines looked a little funny.
What caught my eye was actually her G-tube bag, I thought I saw blood draining in it. But then I realized her tpn line was clear. It should be milky white. I yelled for her nurse to help me turn off the pump and get kendall laid down so we could rip into the tpn bag and see what was going on. I frantically searched all the way up the line and realized there was NO TPN in the line at all, and that blood was in fact coming down out of her line into the tpn tubing. There was air in the tpn bag (it should deflate/suck in on itself as it empties), and all the pump had been pulling was air, no liquid. If you’ve ever seen a James Bond movie, you know that you can kill someone by injecting air into their bloodstream. Well it usually requires a lot more than they use in the movies, but the amount of air that was SECONDS away from being pumped into Kendall would have killed her instantly. There is an air filter in both the pump and on the tubing, and somehow, neither of them were working. I do not know how or why I was able to see it and stop it. I just know that at 2 pm on Monday February 14th, someone was praying for Kendall. And that someone, or someoneS, saved her life.
I was SO shaken up by this, it felt like I had stopped a car accident with my bare hands. It was brutal and insane and i wanted to rip every single tube out of her body right then and just WILL IT to work ok. And I know that some of you may be thinking – well why didn’t you? And I guess, until you have sat vigil at your child’s bedside, and seen them walk in the valley of the shadow of death, or until you have heard things come out of a doctor’s mouth that no mother should ever have to hear, or until you have seen your child bounce back to health and happiness BECAUSE of those tubes supplying life-giving nutrients – then I don’t think you can understand the love-hate relationship that develops with the tubes. It was something i hope to never see again – that empty clear line, the mental visualization of what it could have meant, any of it – and yet, this is life with Kendall.
Where she is at with the battle against the disease that affects every cell of her body has put us in the position of having to make some choices that are either the rock or the hard place. And while we hope and pray and seek the prayers and hope of all of you that she can rise above where she’s at right now, this is our CURRENT reality. Stopping the tpn would mean we could de-access her port a lot more, and therefore reduce or even mostly eliminate the risk of any further life-threatening complications (like air in the line) or infections (like the bacteremia/fungemia she has fought this past week). But stopping the tpn would also mean that right now, she would be back in a place of near starvation. I had avoided talking a whole lot about the downward spiral Kendall has been on since December simply because it is not a happy realization. It is so much easier and nicer to try to stay on your little cloud of denial. But the fact of the matter is – Kendall’s gut was never really working well after we were discharged on New Year’s Day. And right now, we don’t know why.
By the time we ran the first set of labs at Dr. Natalie’s office, it was clear, according to her that they reflected “ the labs of someone who has not eaten in many many many days”. And yet, we were in fact feeding her. Every day. But it was a losing battle. Getting worse by the day. With a goal rate of 40 oz of her formula per day, we had been making slow downward trends to 35, then only 29, then 20, and by the last few days before starting the tpn, kendalls net intake was less than 4 oz a day. She was puking/dumping/pooping/spewing/leaking/draining everything out faster than we could get it into her. And the faster/harder we tried to pump it in or convince her to drink it (which she really was NOT into doing because by then she was in so much pain), the worse we made the situation. The day we decided to just let her belly drain from both ports and she dumped out almost two days worth of food in a matter of hours, she had THE MOST energy, and the most smiles we have seen in WEEKS. Kealey even said to me “I’m so glad Kendall felt so good today – it was so nice to see her laughing again and trying to play and dance with us!” It nearly broke my heart, because what I saw was a little girl picking up and carrying two VERY heavy drainage bags, with hardly a drop of food left in her, yet happy as could be. A happy little girl we had not seen in a long long time.
So that is how we got here. To the point where we are staring down the face of a road to recovery from hell and back. There were many points over the past few days where Kendall could have taken a very very very bad turn. Those of our friends who deal with line infections as a part of life know exactly how bad this infection was. I don’t even think that I myself grasp how bad it could have been. I just know that yeast is bad. very very bad. And to look at kendall, even though she is smiling, you can see that she has been in a battle this week. She has bruises and petechiae all up and down her little body. Where the fluid retention has finally started to go down (because her protein levels have just been decimated by the lack of nutrition in the face of all that has been needed), you can see bones through paper thin skin. Her eyes are deeply sunken into her head under some heavy purple bags. Her hair, besides the Bob Marley dreads she has going on again in spite of my best efforts with a bottle of conditioner and a fine tooth comb, is brittle and wiry again (a sign of malabsorption/malnutrition). It is not a place I hope we are ever at again.
I do not know what the future holds for Kendall. I know that God can heal her, and He WILL heal her as he sees fit. We hope and pray that that healing comes this side of heaven. But I also know this – God gave us Kendall just the way she is. He knit her together and He whispered into her ear the plans HE has for her. I look at my blog stats and I think – my baby is doing things that I could never have hoped she could do – she is touching the lives of so many people. She is teaching me, and I have heard from many of you, what it means to be grateful for every day. How to stop and enjoy the simple small victories of life. How to fight when it seems impossible to fight anymore, and how to battle against the odds nearly every day of your life.
And so that is what we do. We tell her to keep on fighting and to keep on proving people wrong and to keep on teaching residents at teaching hospitals to NEVER underestimate what a complex kiddo can and will do. And she does.
Tonight she will probably spike another random fever. I will get shaken awake by our nurse to tell me they are pulling more cultures from Kendall’s lines. They will probably not grow anything, but we have to do it anyways. She may or may not spike so high so fast that she gets the “rigors” – painful shaking that is uncontrollable from either the pain or the temp change (hard to say). She wil eventually calm down. And we will still have no answers. This is Kendall’s new norm, for a few weeks at least. We are going to be packing up tomorrow to head home. I am so glad we are, and I am SO GRATEFUL that it is happening in just over a week. Kendall is truly an amazing little trooper. She will have a long road of recovery. Sitting up for more than a few minutes at a time is still hard for her, and she still cannot stand up. That will take a few more days probably, and then we will have to work with our PT (physical therapist) to see how long it will be before Kendall is steady enough to walk on her own again. Her muscles are very weak right now. She will still for right now be on full time tpn (IV food). They have doubled her calories in an attempt to get some of her lab values up, not to mention her weight that is continuing to drop every day in an effort to keep on fighting back from the bugs that invaded her body last week.
But through it all, I see her true colors shining through. I see that impish grin behind her green “nee-nee”, and I see, past the purply tired eyes, that sparkle that says – watch out – the kid is back. I know that we will get her tummy working again this time because failure is not an option. We refuse to let it be. We know that so many of you – near and far, strangers and family, are praying with us and believing and hoping for Kendall to keep proving doctors wrong. She has definitely made believers out of more than a few of her docs this visit. I do believe that we will have a VERY hard time convincing anyone to ever attempt to place a PIV in her again…but other than that, I think she’s done an amazing job.
So we will go home and try to find a way to fit all of her new medicine and tpn and vitamins into the one sterile drawer in our fridge. We will rearrange a few drawers and shelves so that we have more room for more medical supplies, more pumps, more bags. We will be together again as a family and that will be enough, that will be more than enough. We are surrounded by an amazing group of friends and family, who have already been banding together in their efforts to help us ease into the transition of home living again. Again, I know that there are so many amazing people who are part of this journey with us that I can’t even begin to thank them all.
I have been interrupted countless times trying to get this update finished and posted, so if I trailed off a thought or two, or you don’t quite understand anything I’ve put here, please let me know. The double shot latte I just drank an hour ago is STILL not combating the extreme amounts of tiredness I feel at this moment. I am so excited at the thought of sleeping in my own bed again, and not having to deal with vitals checks and alarming pumps every few hours…
just one more night.