The fun-gus among us.

I was shaken awake by a resident last nite to let me know that Kendall’s blood cultures had come back positive. For yeast. Again. This was ONE of the foes she fought in February when she was very sick. I was able to hold back the tears while talking to the doctor because while I am no expert in line infections, I know yeast is always bad. It is a very very tough little fungus bug to clear. The medicines that fight fungus are given once a day (vs. bacterial infections where you get antibiotics every 4-6 hours). Yeast loves sugar – Kendall survives on sugar. Somewhere in there, the equation starts to not add up in her favor.

She spent the night continuing to have her fever climb higher and higher april28blog with each new “re-spike”. Her pattern is to have a high fever, we throw a bunch of tylenol and/or motrin at it, she gets about two hours of “relief” (which has thus far meant only bringing it down into the 102 range), and when we recheck it again, its even higher than the first time we checked it. At last check (around 4 am I think – details get a little fuzzy on 3 hours of sleep in 48 hours) – it was 104.9 (40.5c) She had started puking again at that point, so we re-adminstered the tylenol/motrin combo, turned off the enteral (J-tube) feeds she had been getting, and gave her another fluid bolus. (Bolus: a quantity of fluids delivered over a much quicker timeline than normal delivery would require. Normally she gets 90cc of fluids an hour. When we bolus her, we are giving her triple that amount in an hour to give her body some extra stores to burn through with this fever.) According to our ER checkin weight and our admit to the floor weight (about 7 hours), she had lost two pounds. While I don’t think it was all actual weight (she had a onesie on in the ER and did not have it on up here on the floor), it  is obvious that she has already lost a lot of the water weight she had been holding on to for the past couple weeks. her body is just burning so hot all the time, she is breathing so fast, and her stomach is pumping out some impressive amounts of “bilious drainage”.

In a nutshell, at least we have an explanation of why she LOOKED so horrid, and has continued to kind of get progressively sicker over the past 24 hours. It will be one heck of a fight for little miss KQ. But, at least according to the discussion I had with the Sr On Call last nite (kind of a middle level of doctor, not a docling like a resident, but not as good as an attending yet), they are ready to help us help her fight it with everything we can. This doc must have been able to see me instantly starting to beat myself up, go back over every line access/tpn hookup/dressing change we’ve had in the past couple weeks and she just put her hand on my knee and said “it’s not your fault. it’s nobody’s fault. We are dealing with bugs that are WAY smarter than us right now – look at how many bugs have become resistant to certain antibiotics. We are dealing with a fungus that loves sugar. In a plastic sugary pool (the TPN going into Kendall’s line every day is 20% sugar). Eventually even in the most sterile of environments, yeast is gonna figure out where the good stuff is and go set up camp.” And I don’t know why – but I needed to hear that right at that moment. not that it makes it any better or easier. Lots of kids on TPN never get a single yeast blood infection. It looks from initial reports like this is the exact same bug she had in February, so they will more than likely be doing more checking in more hiding spots to see where there might be a rogue camp of fungus balls just waiting for the anti-fungals to stop before dashing off to the sugar pool again and sowing more wild oats, errrr, yeast.

I have not heard how this mornings labs look yet, but right now she is not septic. That could change as her body continues to try to fight these invaders. I know right now its going to be a very long day, and I pray she is able to just sleep as comfortably as possible for most of it.

I’ll try to update if I get any other news. We appreciate the prayers and positive thoughts you are all sending our way. They are being felt most definitely! Please keep the other big girls and Ben in your thoughts too. Kealey was starting to get sick herself yesterday morning when we had to leave to drive up here, and she is having a hard time understanding why I can’t just bring kendall back home so we can all be together for the dance competition this weekend. Or to finish her pocket person project for school. And i FINALLY FINALLY got picked as one of her class chaperones for the field trip on Monday to the Arboretum, and I know she thinks that I will not make it for any of that stuff. But she obviously doesn’t understand the love of a mommy. Because i will do EVERYTHING in my power to be in 793 different places at the same time. It’s a skill I have spent a lifetime perfecting (as anyone who has ever had to wait on me to do anything/finish something/be somewhere can attest to!) Somehow I will find a way to be the comfort that my very sick KQ needs, and still be the mommy that the others miss so badly during times like this. Somehow we will get through this hospitalization and sickness just like we have the others. Because I know we don’t ever do it alone.

I am beyond exhausted at this moment and think I stopped making sense a few paragraphs back (if, in fact, i ever did make any kind of sense at all)! I’ll have to take a few pictures of this hugemongous room we are in and post them later! Till then –IMG_1581 as Kaylen says –

 

 

 

 

Peace Out.

T and the 4th K.

Shamrock Shakes.

I don’t know. It was the only thing that came to mind when I was trying to thing of a good blog title. If you haven’t ever tried one – you must. (they’re at McDonalds. you’re welcome.) Obviously I just had one earlier today. Because its still at the forefront of my mind. I think I have developed a twisted relationship with food over the past few weeks of living in the hospital. But that’s probably its own whole other blog…

Anyways. On to the stuff you really came here for!

Kendall is k4hosp2f continuing to make very good improvements since receiving her transfusion on Saturday night. I should have clarified somewhere in there that those pictures were from last week on the day we got discharged from the sepsis. So while she still looked “sick” in them, she wasn’t the floppy hot mess she was by the time we started transfusing blood! I have a few “before” and “afters”, but i have to download them off my phone and that is just too monumental of a task at the moment. Hopefully tomorrow. Here is a shot of her the morning after transfusion getting a “bath”. We normally just sponge her off. She decided to go swimming. (In the little puke basin we use for bed baths). Such a little nut!

My wonderful mom has been staying with the older girls at our house, and my brother and his wife came up from St. Louis for some family time before a conference they were attending. All of them worked very hard to rearrange and redecorate Kendall’s room into more of a “little girls” room than the medical supply closet it was starting to become. It looks absolutely adorable in there – thank you all so much for the work you did on it! The girls were so excited to show it to me when I got to go home yesterday evening – and they will be even more excited to show it to Kendall when she gets home hopefully tomorrow afternoon!

Right now we have begun “bowel prep” a.k.a. – a “cleanout”. Which is as fun as either of those sound. The worlds hugest jug of stool softener/laxative with added electrolytes is sitting on the sink, and we are pumping it into kendall’s intestines hoping to start literally cleaning all the “stuff” out of the way so they can actually see her intestines with the cameras tomorrow during her scopes. It’s a necessary, but super sucky, evil. I wish I could take the pain away from her. But all I can do is try to keep her distracted and comforted as best as i know how in the confines of the four walls around us, and a few quick elevator rides down to see the fishies.

And in the three hours since I started writing this update – it really has been extremely tough to deal with the screaming/screeching in pain. I’ll spare you the other details. Still no poop. They have even done an x-ray to see if there IS poop in there to be cleaned out. (there is, trust me. She has been pronounced “totally empty and clean” before via x-ray only for me to be dealing with a virtual poop-a-palooza within an hour of getting home multiple times before.) I am beyond grateful for her awesome nurse tonite, who we unfortunately only get until 11:30, but who is working VERY diligently to stay right on top of the anti-nausea meds for kendall, and to help me come up with new fun ways to distract kendall from the pain/cramping/whatever she is dealing with every few minutes. She knows Kendall’s little quirks (like the fact that before you can do anything to kendall, you have to do it to her baby first – temps, BP’s, listening to lungs/tummy), brings her extra alcohol wipes every time she does something bedside (we have a slight obsession with alcohol wipes going on here), and in general is willing to be as goofy as it takes to keep the screaming to a minimum.

So even though it is a rough nite, it is one that will be bearable. I know Jesus is with Kendall in her pain, and I know He will be with her tomorrow during her surgery/procedures. He is providing for our family through so many of you – I am so touched beyond words for what our neighbors (and other random friends of neighbors, and some not so random friends of neighbors) have done for us with their thoughtful gifts. I seriously need to just do a separate post on ALL the amazing ways we have been loved and held through this crazy time. Some of you would probably not believe it even if I told you. And that’s ok. Because its all true. And someday when I am not about to pass out from exhaustion I will tell you all. But those of you who know what you did – whether that was the neighborhood gift card tree or the benefit, or dinner for our family, or schlepping my children to heck and gone or ANYTHING ANYTHING ANYTHING for us – thank you so much. I feel so ever indebted to so many of you. And I know I can never say thank you enough. So I hope that somehow, someway, you all feel our thanks, and are repaid in an amazing way for your generous love showered on our family.

Please pray for poop tonite. I know there are seriously so many other important things to pray for, and so many other children suffering with bigger issues tonite. If you have any extra time before you fall asleep, please just say a little one for some poop for this kiddo. She’s tough as nails, but what we are asking of her poor sore little tummy tonite is quickly becoming too much for her. If we could just get SOME poop out already, they might let us back down, and get her some relief.

Anyways – i’m not even making sense in my own head anymore. (cause sometimes I actually do.) But i’ll try to recline on the hospital bench, and close my eyes, and this might turn into real sleep, which will help me make a little more sense tomorrow.

Thank you so much for being a part of Kendall’s story~

 

terra

Life-Giving.

My friend Cheryl Lynn likes to use this phrase a lot. I kind of tease her about it. But mostly, I really really like it. Because it sums up so well the attitude with which we should live out most of our actions on most days. Why do stuff that doesn’t really help you enjoy life?

But the way that I am mostly referring to it for the purposes of this post is in the way that blood is life-giving. k4hosp2d As a Christian, i of course believe in the very real giving of Christ’s blood as the payment for my salvation. And I guess in some ways, seeing my daughter receive an infusion of blood that is not her own, as a way to restore life to her tired little body – really brought this home. how often do you really think of your own blood? Probably not until it is gushing out of some wound inflicted by a clumsy wielding of kitchen instruments or you are wiping up the few drops of it leaking out of a small scrape on your child’s knee that is inducing major wailing and flailing. And until you are faced with the realization that something is going wrong with that blood coursing through your veins and carrying oxygen to your body, you really probably rarely think about how very life-giving it is.

This week, we have had to confront this reality head on. Over the last few days since we were made aware of the fact that Kendall’s body was either losing too much blood from unknown source, or was destroying its own red blood cells, we have watched as her k4hosp2h body has become weaker. In response to not having enough blood to take oxygen around her whole body, her feet and hands have become colder, and her little heart has been having to pump pretty gosh darn hard in order to keep things moving along effectively. Because of all that extra work, it has made her tired in a way that is beyond tiredness. (And grumpier in a way that is BEYONDDDD grumpy – but we’ll choose to skip over that little “less-than-angelic” detail for now…)

In spite of the very very frustrating methodical approach her doctors have taken to figure out the problem, they have indeed been VERY good at trying to locate the reason why Kendall’s blood counts have taken such a hit. I realize that what I have been spewing out here and there on Facebook were quick versions of my frustration – but overall, the big game plan was always to find the reason and THEN transfuse if she needed it. i have not necessarily agreed with how LONG it took to get to this point. But the steps required to get here were necessary. After nearly melting down and in fact breaking down on the phone to my dear friend/2nd mommy to my big girls, and then to my own real mommy, I was able to somehow (by the grace of God and all your prayers for me and the pygmies) pull it together enough to write out my 19 questions for the baby doctors on rounds, and then calmly present them. An awesome mom of a beautiful mito angel was able to reach out and help calm me down, talk me through the issues, and share the knowledge that she has gained on this crazy weird journey of the medically challenging complex child. And then i spent a lot of time last nite watching it snow, looking at the clock at realizing it was after midnite, and that good things happen on snow days. It’s true. I couldn’t sleep very well, and so Jesus and I just had some hang out time. I told him how pissed off I was, and he said “that’s cool. But I got this. I always got this. Don’t you forget it.” (and in case you’re thinking that I’ve been stuck in a hospital room living off coffees and oreos for just a tweed bit too long – you’re right. But we really did have a chit-chat, Jesus and me.)

And he sure enough indeed DID have this.

Doctors came to rounds ready to all pitch in and help pinpoint exactly what we could do to get Kendall better, and then get her ready to go home, and hopefully stay the heck away k4hosp2g from this place for a good long while! Just about every single one of my questions was answered within the first three minutes of rounds, without me having to even ask the questions. Our attending doc (the main dude calling the shots for Kendall while she’s inpatient – it changes every two weeks, so we had a different attending when we were here last week) was so very on top of all of my concerns already. He is so quick to explain everything, but also to listen (and HEAR) my concerns and questions. Anyways – the outcome was that Hematology would be paged to consult today ASAP so we could get her transfused. It became not a question of if but when. The meds they had started last nite to try to compensate for the nutritional deficiencies they thought she was having were discontinued until we have further evidence that that is the problem. All of her antibiotics and antifungals were discontinued also! This is a HUGE help for going home because that med schedule was getting CRAZY to try to handle on my own! The only kinda bummer part about rounds is that they ARE going to need to go forward with the scopes for kendall, but those can’t happen until Monday or more likely Tuesday. We are trying to coordinate with surgery to have Kendall’s port replaced at the same time (assuming her blood counts respond nicely to the transfusions), since her PICC line is being less than helpful this week!

So – a lot going on. Even for a Saturday.

Very life-giving to my very frustrated, very exhausted, very stressed out soul.

but I think the biggest heart swelling moment I had today, was when our nurse came in all gowned up, with the charge nurse right behind, and performed the “ceremony” necessary to begin a blood transfusion. They check and double check and triple check every component of that bag with Kendall’s bracelets/numbers/info. it was kind of like watching… i don’t even know. Just a ceremonial ritual. And I realized that someone, somewhere, with A negative blood, had taken a few hours of their day a few weeks ago, to give blood. That person could be walking around this hospital or they could have been at the mall eating Panda Express orange chicken. And that those few hours of sacrifice would mean that my baby could get some energy back, get some life back to her. I mean, I know this. I have been a very faithful blood and plasma donor in the past. I am on the National Marrow Registry and have actually been called to be a donor for a patient who has thus far remained in remission (but they still call and keep tabs on me every once in a while to make sure I would still donate if things changed.) I am not trying to turn this into a PSA for giving blood.

I am simply saying –

It’s an amazing thing to witness. The giving of blood from one human being to another. The giving of life.

Within one hour of the infusion starting, I got a little panicky because I noticed Kendall looking reddish on her face. They went over “reactions” with me, and a “weird rash” was one of the top signs to watch for. I bent down to look at her at eye level (she was in her little red car that we push her around in in the hospital), and I realized it was not a rash – it was color coming back to her skin. She has been such a pasty shade of greyish chalk-colored blah that the oxygenated blood circulating through her body was making her glow pink again! I had tears in my eyes for just a second. Praising God that all things really had worked together on this “snowy day”.

And just like that day on the cross so many years ago when Jesus gave HIS blood for all of US to have that “shiny pink glow”, that life-giving LIFE to our life, He really did indeedblood1 “have this”.

all along.

I don’t know why I doubt it sometimes.

Thank you donors everywhere. Because of you – my baby is actually finally resting tonite. And by tomorrow, she’ll be pink again.

Life-giving to the max.

 

 

Terra & Kendall

Rounding 3rd…

And barrelling towards HOME!!!

This will be just a quick update to let you all know that head honcho doc (the attending) has signed off on the papers! We are waiting for her antibiotics to finish running on this pump, and then we will switch her over to our pump, get her dressed, and off we will go! Ben has already been by to help me make one very loaded trip to the car with all of our stuff, so we have just a few things to try to get out the door with.

They are running the flush right now as we speak (the end part to the antibiotics), and our nurse is gathering up all of our paperwork, prescriptions and supplies we will need from here to run stuff till we get home.

It has been a long long week.

I cannot wait to pull into our driveway, with my happy healthy baby safely in her carseat behind me. I will run inside and hug my other babies who will all want to jump on me at once. And my arms will be full and my heart will be full. And then my washer will be full because we have a LOT of laundry. And unpacking. And reorganizing.

But we have survived. And we will continue to survive.

Thank you for praying.

I cannot wait to post an update later from HOME!!!!!!!!

love –

terra and kendall – SUPER anxious to bust on outta the big house!

One More Night.

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.

 

terra.

In the Home Stretch.

Now, being slightly superstitious, i probably shouldn’t even type those words. But they sound really good to say, so we’ll go with it!

k4hosp9 Yesterday’s afternoon events included a fun abdominal ultrasound where they “had a difficult time visualizing the pancreas” and noted an “abnormally large bladder”. I could tell the tech was getting concerned when she was getting just black all over the screen (black is air/liquid), and had to keep adjusting the scale of the ultrasound to get markers of where she was at. She asked me at one point if Kendall had problems peeing and i just started laughing and said, I’m assuming that’s her bladder you found! This definitely earned us a flurry of activity once we got upstairs including a fun catheterization and another bladder scan, where in spite of two hugely full diapers, we found that kendall still had four ounces in her bladder on the scan, and actually had more like 8 ounces come out when she was cathed. At least we know where all the fluid is finally going to!

She spent the afternoon playing with some new toys from a good friend who took the time to run to the store to get i think EVERYTHING that i put on my “suggestions” list! (thanks so much tracy!!!), while I enjoyed the sweet tea I have been craving for days! My cousin k4hosp13 Puckapie (yes that’s her real name) came by with an awesome lunch and we got kendall out of bed to sit over on the “couch” with us for a few minutes before the pain was too much for her and she wanted to lay back down again. But overall – she continued to make major strides forward as far as just seeing “kendall” come back. Including the time I thought she was taking a nap and I get up to check on her and realize she had not been sleeping afterall, but had instead taken the bottle of triple paste cream and smeared it ALL over herself. And everything in sight in the crib. Including her sister’s DS (aka “pway-see-see-cwayon” – kendall-ese for Play Sissy Crayon, which is the little DS stick. don’t ask – we have our own language over here….) That was fun to clean up – but I coudln’t help but just laugh at it – cause i was SO HAPPY to see Kendall being her naughty little self again!

And of course, in true naughty Kendall fashion, she spiked ANOTHER fever up to 102.8 last nite! later than the nite before, less intensely spiking, and a calmer slower deffervesce (that’s my new medical term for the day – i learned it in rounds! Can’t wait to use it in daily conversations!) So – still more questions than answers, but an overall MUCH happier Kendall Quinn. And who can complain about that?

So that’s where we sit this afternoon – waiting for a few more tests to come back, keeping an eye on her fever/urine output,k4hosp16 getting our pharmacy prepared for the onslaught of new kendall orders (as if they didn’t already hate us), and making sure we are doing the right thing by letting them give us the boot soon! I think we are aiming for tomorrow afternoon assuming that the latest cultures from the past two nites continue to stay clear!

I cannot say thank you enough to everyone who is pitching in to help keep our family together during this time – my mom for staying with the girls so Ben can go on his work trip (I encouraged it – considering it is up here to milwaukee and I will need all the help I can get to pack up all the stuff from our room and get a kid on four iv pumps out the door to the car!) – to everyone making meals, getting groceries, baking birthday goodies, shuttling my children back and forth from dance, cleaning up after the amazing benefit dinner from last week and everyone who is just PRAYING….thank you to you all. I couldn’t even begin to name names because I will inevitably forget someone and I would never want ANYONE to be left out. You are all an amazing part of this story, of Kendall’s story.

And before I turn into a hot sobby mess, I will be done with this update.

Oh and PS – I found a way around the network ban on facebook. But I wanted to let you all know that according to a good source close to me:

“you really should be careful what you put on your blog. They are reading it you know, and they see you talk bad about their hospital. it’s like when you go to those p.o.r.n. parties at work. They read about all that stuff. So just be careful.”

I’ll try to stop going to so many p.o.r.n. parties at work. And hope that my blog doesn’t blow up the network.

Party on Wayne.

{party on garth}.

 

T

Perking up!

I will try (TRYYYYY ok, it’s hard when you’re as verbose as myself!) to keep this one shorter. k4hosp7 Since the hospital network has decided I can’t get on Facebook anymore, I will try to update here when anything exciting is happening!

So after spiking a crazy fever last nite right around bedtime, things have been nicely calm around here today. Everyone has their own theory about why she spiked another fever, top of that pack is that she is still septic/bacteremic. It is unlikely considering the antibiotic/antifungal coverage she is on, and the fact that the PICC line had been in for less than 8 hours at that point, but it IS the most logical. Good thing Kendall has never once followed the “logical” path for anything – because that means we are more likely dealing with one of the other working theories:

Autonomic response to the major pain of trying to restart feeds into her J-tube (this is my theory).

Or

Possibly a “last hurrah” type of push from her body to kick the flu to the curb since she had just had her last dose of the tamiflu (antiviral) about two hours before the incident.

Basically, nobody knows. I think autonomic response because she had been feeling pretty crappy from the feeds since about 3 in the afternoon, and she finally passed out asleep around 7 after just being real quiet and puny that whole time (typical for what we see at home when she is in pain from feeds). At 8 pm she woke up SCREECHING in pain, our nurse and our care partner both were walking down the hall and came running in here to see what had happened, and they once again paged the sr resident in panic mode to get her to order something stronger than tylenol NOW. our PCA was almost in tears herself because we could not get kendall calmed down at all and she was like – “how do you fix her at home:? how do you get her to stop screaming?” And I just said, I can’t, and I don’t, that’s part of why we’re here!

k4hosp12 As they were ordering tylenol suppositories, zofran and versed, we noticed she was super hot, covered in goosebumps and shaking. Rectal temp was 101.4, which isn’t too bad, but it is definitely a fever, and definitely much higher than she’d been in two days. We put the tylenol in, and thirty minutes later checked again, and it was up to 102.8. I am sure if we had kept checking it, she would have spiked even higher. Even I myself was very concerned with how hot she was getting and how much she was shaking – it was reminiscent of our first nite here in the ER when she had the rigors from spiking a temp. (For the record, this is a new thing for Kendall, both spiking a temp and having the rigors with it.) But we stopped the feeds altogether for the nite, gave her the zofran in her IV (anti-nausea med), started her new med to deaden the nerve pain in her gut (Elavil), and she passed out asleep within about 30 minutes. Shortly therafter, she “de-satted” (her oxygen dipped down to 65), and it took her a couple minutes to slowly climb back up to the low 90’s, where we watched her and let her hang out for a few minutes before giving her a little oxygen. Within a couple hours, her temp had dropped down to 96 degrees, so she got huddled up under every blanket we had in the room, and she slept until 7 am this morning. The docs had decided yesterday to give her a “lab holiday” – meaning they didn’t pull any labs this morning bright and early! It was a VERY nice and welcome break!

And our day today has just been a lot of hanging out – watching Kendall come backk4hosp10 to herself, making messes with lotion and baby wipes. She has sat up a little bit more today, still pretty shaky trying to sit herself up, but once up she can balance pretty good! I am very glad to see this, as she usually loses motor skills for a good few days after an illness, and I am imagining that one this bigtime will put her back at least a week or so!

We had a few tests today – but I’ll update about those in a separate update so that those of you chomping at the bit for this one can get it!

thanks for checking on us!

Terra and Kendall from the W1104

Making the Turn.

Little Warrior Princess is definitely making the turn back towards the good side today!

Actually, in a weird way, she started making the turn last nite with all of the INSANE IV craziness, because they finally got off their butts and ordered something stronger than tylenol for this kid! And once we were able to help her get on top of that pain – off she has gone. As i had no doubt she would!

So – backing up a little bit.kendallhospital4

Actually – let me start with a little  “glossary of terms”. My darling father in law ever so gently reminded me this morning that I need to talk slow and not use so many medical terms when i am giving very important updates! (and in case you are wondering, yes i really do actually use these terms with our residents. Not so much the attendings, because they don’t usually need to be put in their place as much as residents. But it’s just ever so much fun to watch a residents face struggle to remember the vocab terminology of the words I am using!)

In order to understand today’s update better, you will need to familiarize yourself with these terms:

P-IV = peripheral IV line. Also sometimes just referred to as “a peripheral”.  This is a line(iv) that sticks into your arm or your hand or your foot or wherever the nurses are lucky enough to find a small vein that won’t blow up the second you start putting fluids into it. Most people when they “get iv’s” are getting a PIV. Kendall has struggled her entire life with keeping PIV’s, which is part of why we went with the port last month, which is a CVL – central venous line. I am using PIV here to differentiate between the kind of IV we HAD, and the kind we need to GET.

CVL – the central line. This is a more permanent kind of IV that is tunneled under the skin on the chest, with an access end coming out of a small hole, or in our case, a “medi-port” under the skin that we access with a special needle. This CVL goes into a large vein that dumps directly above the heart, so you can put a LOT of good stuff in there as fast as you need it usually. This is an important differentiation because it will explain why Sunday and Monday were crazy around here in that we did NOT have a good large well in which to dump the many things we were trying to dump into Kendall.

IR – Interventional Radiology. This is where Kendall typically goes to get her G-J tube changed, as it is essentially a video camera x-ray. If a regular x-ray is like a still camera, taking a snapshot, an IR x-ray is like shooting video of that same thing – you can see things in live action. Now, how they do this is actually not so much fun. Specially if you are slightly claustrophobic and definitely sensory overloaded like Kendall is.  IR here at CHW (childrens hospital of WI, the milwaukee hospital) is kind of like a special kind of torture because they REALLY dislike actually sedating kids, or heck, even making them comfortable, before sticking them under the big scary loud video camera x-ray. Anyways – the table is equipped with about 5 velcro straps. These hold the child down on the table. The big scary camera comes RIGHT over their head, seeming like a huge 5 ton weight that may or may not fall on them at any given moment. And then the procedures are done to them – in our case, usually a long wire is threaded through Kendall’s stoma and a tube is slid down over it. Or like today, a hole is punctured in her arm, and a long flexible IV tube is threaded through her vein till it sits near her heart. Slap your grandma and bob’s your uncle, and then they’re done. That is IR.

k4hospital3 PICC – Peripherally Inserted Central Catheter. Kind of a good happy medium between the two above, a PIV and a CVL. It is a central line (that threads to your heart), through a peripheral location (your arm). Kendall has had a few PICC’s before, when we know we will need IV access at home for antibiotics. They are easily pulled out (literally just a yank and pull at the kitchen counter, WHEN the time is right I should say!), in case there were to be any re-infection from one of the bugs Kendall is hopefully fighting off right now.

Port – “Medi-port” -  Kendall’s previous CVL that we had removed in surgery on Saturday in an attempt to get rid of any leftover yeast bad guys that were still hanging out in Kendall’s bloodstream. We will probably replace her port once her 6 weeks of antibiotics are up because again, the hope will be that we only need to intermittently use Kendall’s port for fluid maintenance, and will be DONE with the TPN.

TPN – Total Parenteral Nutrition – IV food. It is a mixture of proteins (amino acids), carbs (sugar/dextrose), and fats (lipids), as well as electrolytes and other essential nutrients that can keep someone nourished even if their gut is on vacation. Kendall had to start TPN about two weeks ago when all attempts to get her gut to absorb or accept food were failing MISERABLY. It was really just a crappy time so I didn’t want to talk about it much on here. I really didn’t want to talk about it much anywhere really. It was a sad realization to see how EXTREMELY happy she was with not a drop of food in her stomach. We finally had Kendall back who had been missing for almost two months (since we were discharged on New Years Eve) – yet her gut was completely M.I.A. (that is missing in action! – sorry, couldn’t resist!) So after watching her start to have some major issues with hypoglycemia, become very weak (since she was surviving on about 6 ounces of pedialyte a day), and in general look very very puny, we took her in to Dr. Natalie to have another set of eyes on her. Dr N took one look at her and started ordering nurses to get TPN orders sent to our pharmacy. It was very surreal. But the bottom line was that the plan was to give her complete gut rest for about 3-4 days, run TPN for a week, and hopefully have kickstarted her system and call it a day. TPN can become a long-term choice for many kids whose guts have deteriorated to zero function, but for what we are hoping for with Kendall, it should be a short term solution.

 

I think that is enough for today’s vocab lesson. and I’ll have you know I started this update at 1 pm today! It is now 6:30. So it’s gonna be another long one probably!

Anyways – when we had to remove Kendall’s port on Saturday nite, we knew we would need to place a PIV. I actually had asked them to place 2, because Kendall just does not like to keep PIV’s in place. Especially running D10. But what do I know – I’m just the mom. So she came out of surgery with a BEAUTIFULLY placed PIV in her foot, but that was it. Just one. By Sunday afternoon, it was starting to get a little puffy, but she wasn’t freaking out over it yet, so we just kept our eye on it. By Monday morning we were having to really mess with rates and times of how fast we were running certain things in because we were having to stop the D10 in order to run antibiotics, putting her in a precarious situation with her sugars to begin with. But in order to get the antibiotics to go in without burning, we were having to run them over 2 hours. That’s a long time to not be getting any nutrition when you’re already sick and WELL behind the nutritional 8-ball. Well then her electrolytes and mag-phos (I am not sure what these are – minerals?) decided to start going wacky so we were having to add in an essential nutrient in between the antibiotic doses and then giving her some D10 every once in a while to try to keep her sugars up. By Monday afternoon, we were starting to call around to have another PIV placed from one of the teams that is used to placing very hard sticks in kids – PICU, NICU, ER, and transport (ambulance). Nobody had any time for us right then, but since it was still kind of limping along, we didn’t push them too hard. Or I should say our nurse didn’t push too hard. I was panicked. And sure enough, RIGHT after the saline flush for one of the antibiotics finished it blew in a big way. If you’ve ever watched a Peep blow up in a microwave….you have some picture of how her foot looked. We had a floor nurse in there then doing her best to place another PIV, and she was finding the veins, but every time she would go to push the catheter tip all the way in, it would explode the vein. Like popping a ….facial blemish. Everyone in the room was in tears by this point.

In walks the senior resident for the nite, who is a demure sweet girl I am sure, but she walks into the first level of Armageddon at that point and our nurse is screaming at her, put orders in for pain control NOW. and she goes, ummmm…..ok, how about some ibuprofen?? And I yell over my shoulder (because I am pinning Kendall down to get poked for the FOURTH time in about ten minutes) – “are you sure that’s a really good choice for a thrombocytopenic kid?” and the color drained out of dr. sr. resident’s face – “she’s thrombocytopenic??? oh mygosh i didnt read her file yet!”  Awesome. Always an advisable thing when coming into a room to make a decision where there is OBVIOUS amounts of chaos going on. (and a translation of what that means – the doctor wanted to give kendall some motrin for pain relief, which is a known blood thinner. Kendall being in DIC a few days ago meant that she already had very very low clotting factors in her blood, and giving her a blood thinning type of medication could have disastrous results, especially considering that we are poking her full of plenty of little holes for lots of blood to come exploding out of. Not a good situation.) So the nurse trying for a line has now blown four sites and we all say enough – let’s call the other teams again and see if they can come again, give her a break, and try again in an hour.

This meant we had to get SOMETHING into Kendall to counteract the major drop in sugar that we were waiting to happen after no longer getting the D10. So we started feeds of formula into her J-tube of 5cc/hr, knowing that we had to make it work for at least an hour probably (that was the time that anesthesia gave us for coming down to them to attempt to get an IV placed.). Kendall has not tolerated feeds of formula in over 2 weeks, and on the heels of a pretty nasty systemic infection, we were not sure how well it was going to go over. But – all of you our faithful prayer warriors picked up in grand fashion, and we were able to keep the formula drip going! When we got down to anesthesia, we had found a “loophole” that allowed us to give Kendall some midazolam (Versed) as both a calming agent AND pain control since she was just through the roof with major bruising now happening all over her body plus her still super puffy Microwaved Peep foot.  And THIS was when we started to see a little glimpse of Kendall. We FINALLY got on top of that pain she was in major amounts of, and she felt good enough to start fighting everything on her own!

Anesthesia also blew out another vein in her ankle, one of a very few visible veins she had left,k4hospital5 and he was TICKED. He watched the “vein explosion” happen right before his eyes, and for a man who is not used to not having things go precisely as he planned them, it was pretty eye-opening! He immediately said “you need to call IR and get a PICC now. NO ONE wil be able to place a PIV on this child!”  So in tears we all came back up to the floor (nurse, Kendall and me). And we told the sr. resident who again looked like she would rather be ANYWHERE but there in our room being told she had to start making some really hard decisions. She left to go make some phone calls and came in ten minutes later to tell me that they would probably be transferring her down to PICU so we could place a femoral line (up through her groin), or possibly one into her neck (jugular vein). As a part of rapid response team transferring her to PICU, they sent up the helicopter team to get a guidewire placed in a vein.

And that was when our angels in blue walked in. These two men walked in all confidence and pomp, but very very calming. They didn’t even turn the lights on in the room, just started asking me some questions, talking calmly with Kendall about her stickers, her mickey mouse movie, and all the while they were running their little red-light hand held ultrasound machine all over her body, looking for a good vein that was not blown to smithereens. They discussed something between themselves in the same calm tone of voice, and then began this amazing little dance where they both understood exactly what was required of themselves and each other. They repositioned me one time to “distract” Kendall’s gaze, and in some weird sleight of hand magic trick, and i swear to you it was, they somehow had placed a line, taped it to an arm board, cut a medicine cup to fit over the top of it and protect it from bumps and movement, and were cleaning up their trash and telling me to have a good nite! I was like – but aren’t you going to put an IV in??? And sure enough – they had. I was AMAZED. If I had not sat there and witnessed it myself I would swear she had always had that PIV in. I did not get a picture of it before it blew this afternoon and had to be removed, but it was EXTREMELY precariously placed going up the side of her hand near her wrist joint. Not someplace I would have ever expected a vein to be, let alone the one vein in Kendall’s body that was going to not explode all over.

So again – sr. resident walks in after they had left and signed off on things and goes “oh my gosh i have spent the past two hours SO NEAR TEARS because this has just been brutal!” I was like – you wuss! you weren’t even in here pinning her down! If you think that is brutal you should try living with this kid in the hospital  because that is what happens just about EVERY SINGLE TIME we try to place a PIV!!!” Now granted, we have not really ever been in THAT precarious of a position, where we could not start feeds to keep her sugars/fluids up, we were in desperate need of getting antibiotics in, and who knows what the next crazy electrolyte was going to be that we had to run on an emergency basis? We were probably within easily 15 minutes of needing serious emergency intervention. God is good, and we were SO thankful for all of you who were faithfully praying when I put the news out on Facebook that we needed a lot of help and a lot of prayer!

Now – why were we messing with PIV’s in the first place? Well, because we don’t want to just give any lingering bad guys a new plastic home to turn into their hideout and procreate and take over her body again. The best way to do this is to wait for “3 clears” – or three negative cultures in a row. Last nite we were tentatively at 1 1/2 days of clear cultures. We had hoped to make it to Wednesday with a PIV so that we could give her the clearest shot at remaining infection free, but last nite everyone realized that “the ideal world” is very far removed from “kendall’s world”, and that we would need to come up with Plan B.

Which led us to today where GI attending’s assessment was “put the #$^&( PICC in”, and ID’s assessment was “we need three #(*@%(#) days of clear cultures to replace her port” and I was like – we could have replaced the port tomorrow?!?!?! Because that was NOT how i first understood it…

anyways – it was a crazy conversation. Semi-frustrating. Because we are not going to put a PICC in her one day and then go get a port in the next day. I mean, you COULD do that. It’s just not a very logical seeming choice I guess. So – I said, “let’s compromise. How about if we get a double lumen PICC in place today, leave that for the 6 weeks of antibiotics at home, hopefully wean her off the TPN in that time, and then when we come up to reassess infection status after that, we get the port put back in for hopefully WAY less access than what we are doing right now?” Surprisingly, everybody was in love with that plan. (I’m so glad we are paying these doctors to agree with my plans!)

One last vocab word – double-lumen PICC – a PICC line with two little “hubs”. The point of this is that we will be able to run her TPN along with her antibiotics and hopefully be able to get a little more sleep at nite since we won’t have to be waking up to check if her sugars are staying up through a two hour antibiotic infusion every few hours. At least, that is the goal. Who knows how it’s actually going to turn out, because, after all, this is Kendall we’re talking about!

Throughout the rest of today (Tuesday), Kendall has just been very low-key. Resting/sleeping a lot. Still not wanting to/able to sit up on her own. Laying in her crib watching “hot-dog” (Mickey Mouse Clubhouse) on a little DVD player that an angel gave us last week for just this kind of thing! i tried to get through the bob marley hairdo she has created by laying flat on her back for the better part of a week, and she was having NONE of it. I am thinking we may have to shave the dredlocks off and start over….it’s REALLLLYYY bad. And you know, coming from me, mother of four little girls with curls, if I say its bad enough to shave it, it’s bad enough to shave it.

All in all, a pretty good day. a day of much improvement for Kendall (her blood counts are FINALLY out of the range where a blood transfusion was being threatened every few hours), she was awake for a little bit longer today, we got working access with the PICC, we came up with a long term access plan, and a few of her doctors and I have had some really good conversations regarding further care for this current gut situation as well as all=over health assessments. It’s hard to explain all the nuances especially since I feel like I’ve been typing for HOURS.

Thank you for the continued prayers. I don’t think it will hit me for a while just how very sucky this whole week has really been. horrifyingly sucky I am thinking… But I don’t have to think about that just now. I just have to focus on continuing to get Kendall better so we can get home to the other girls who are desperately missing us. I know that so many from our church want to know how to help or what you can do – and really – I am not even sure how to put it into words. The fallout from this week will not happen until early next week (assuming we are home for this weekend). When the crash hits me, THAT is when I will need the help and support. Meals are ALWAYS welcomed! Extra sleep, snacks/lunch stuff for the girls, magical house cleaning fairies, and deliveries of coke and starbucks are also high on my wishlist most days…

Tonite I am just really really praying that we are home in time for Kealey’s birthday. It’s this Sunday. Thankfully my dear aunt and cousins had the foresight to have an AWESOME little family party for Kealey on Sunday at their house, and I know that meant the world to her. I hope she gets a cake from me, and gets to blow out her candles with her whole family all together in her own home. I hope I get to go shopping for presents for her. Obviously a big party is not in the works this year, and she’s such an amazing little trooper, that she’ll just sort of shrug her shoulders and tell me “it’s ok momma, I’m just glad everybody is ok, and i love having my birthday with just my family”. She’s such a big girl…how did she get to be NINE?!?!?>!?

Ok now i’m going to start crying and I’ve kind of done more than enough of that in the past 24 hours.

Thank you for checking on us…I promise I’ll let you know how we need help as soon as I figure it out myself!

love and hugs to all of you from all of us!

Terra, Ben, Kendall and the whole K-crew

Monday…

It’s a monday around here. Just…blah. It snowed a lot yesterday and through this morning up k4hospital1 here in Milwaukee, but I hear its just been rainy down near home. At one point we couldn’t even see a thing out of the windows up here on the 11th floor! It just makes it seem that much more “wintery” instead of “springy”.

overall, she is continuing to take baby steps forward in improving! Definitely the right direction, and right now, we’ll take any steps that way that we can get. i don’t think that I have even fully grasped just how extremely sick she was on friday and saturday. I think that is blessedly because i was not here for the worst of it – because the entire time I was away from her, I just ached to be back here with her, helping Ben, going through this together. In my heart I knew i should have been here, which is why I had the mini-breakdown when Kaylen locked the keys in the car and I felt like we had no way of getting up here again.

Anyways – I have a lot to go back and catch up on, and hopefully as long as it stays calm and quiet around here, I’ll be able to do that.

First things first though – today’s update.

She has had one day of clear cultures! WOO HOO!!! Clear cultures means that her blood is not growing any more of the bad guys in the little dish down in the lab. It means WE are winning! (*insert “All i do is Win” by DJ khaled blasting in your ears here*)  In order to even begin to discuss discharge, we have to have three straight days of clear cultures. Having day one under our belts is certainly a huge step in the right direction, since we had three days of “growth”.

Her DIC – or should I say her disseminated intravascular coagulation – panel is “improving”. I HATE not having copies of labs in front of me, because I have no idea how bad they were, or what makes them “improving”. I know her platelets should be in the 150-450 range. k4hospital2Hers were 149 when we got to the ER (down from about 200 when we started tpn), and have been just getting chomped through since then, dropping 40-50 points a day. This is symptomatic of both a bad bacterial infection on its own, and is exacerbated in a sepsis situation. She is considered now to be out of the danger zone of DIC, but her platelets arent’ making quite the huge jump in numbers that we need them to. The more blood we draw to check this (and the many other labs that her docs want to keep an eye on), the worse we could make the situation. So for now, we are trying to draw the least amount of blood possible in order to hopefully let her body start making more platelets on its own. She came dangerously near urgent transfusion level, but given the complexity of all of her issues right now, no one wants to add any more craziness into the mix by transfusing a blood product that may or may not actually solve any issues (she has no signs of obvious bleeding anywhere, so we don’t need to replace them just yet).

So far she is showing very few signs of being respiratorily compromised by the flu. I think this is due in large part to the tamiflu having been started and now nearly finished, but also to the fact that she is just not up and moving around, so isn’t really moving a lot of the junk from her head/sinuses down into her throat, causing the wicked cough that the other girls and myself have. And maybe she just won’t. i hope she won’t because with her already kind of crappy lungs and an extremely unhappy immune system at the moment, I am sure it won’t be pretty. If you’ve heard Kaylen or Karissa in the past few days, you know exactly what I mean. If you haven’t, let’s just say that the use of a suction machine will definitely be needed for Kendall if she does start draining/coughing like they are.

Right now she is actually complaining of head pain (signing “hurts” and then pointing to her head/neck/ear area), so I don’t know if she is just getting a headache from ALL that she has been through, or if it is the wonderful sinus pain part of this crappy bug! And in true complex kid fashion, they don’t want to give her tylenol because it “might mask a fever”. But we can’t give her ibuprofen right now because she is still technically “thrombocytopenic” (aka, low platelets). If she were to whack her leg or arm or head on something, or start bleeding from somewhere, it would be a literal blood bath, and the ibuprofen (which has a blood thinning effect), would make that worse. So – we have to just keep trying to calm down a very whiney and grumpy 2 year old who has just been through the ringer and does NOT want to be calmed down for love nor money. At least when the pain subsides she is falling back into a pretty good sleep until the next time someone wants to come in and touch her or move her or examine her or just check the iv pumps! GRUMMMMMPPPPPYYYY!!!!

And – her IV is still in a very bad place. I think they have actually called the transport team to come down and help us find another site (or two if possible) to start more peripherals. ID (Infectious Diseases, the docs making the calls on her bacteremia and fungemia infections) wants us to try to make it till Wednesday before placing the PICC line to give her the best shot of having totally clear blood so another implanted catheter (permanent IV) has a good shot of being successful. If we absolutely can’t get access any other way, I think they’d sign off on a PICC  because right now we HAVE to have something to continue giving her the antibiotics at least, but also nutrition. GI is not really optimistic right now that we would have ANY luck with enteral feeds as a source of nutrition, but they are working on a few theories right now to come up with ways to help us get her back there sooner than later. So – we are having her limp along on D10, which itself is very hard on a small vein (like the one in her foot!), and every few hours they come in here with another essential electrolyte that we have to slowly infuse in order to try to keep her body from getting too out of whack. Her nutrition labs look….horrible. Which isn’t surprising. But we are definitely in a not fun place with regard to giving her the nutrition she also needs in order to keep fighting all that is warring in her body.

They just came in to our room to do an echocardiogram to make sure that none of the yeast in Kendalls bloodstream has decided to make a new hideout in her heart, where it could grow its evil army and attack her again the second we put a new plastic thingy in there. Or something like that.

So – that’s where we are this afternoon. Just kind of hanging out and waiting for NOTHING to grow. I think there is a rumor that if we get our three clear cultures and we have a working PICC, we can bust outta this joint. That would be Wednesday at the earliest, but more likely Thursday. That is IF we continue with the negative cultures. Which we hope for beyond hope!!!

Will update later if I know more to update!

Let’s Review.

I was going to go all the way back to Valentine’s Day of 2001 (ok not quite ON that day, but around that time), when we had an earthquake in Seattle that resulted in me breaking my shoulder blade, but I decided to spare you.  We’ll pick up the fun walk down memory lane in 2008.

February of 2008 – I was getting sick because of Miss Kendall, but did not know it yet. And man there is some FUNNY STUFF from back there…that hyperlink (click on the february of 2008 text) takes you to all of my posts from that month. Hilarious. At least in my own mind. As Ben likes to say, the Read family is the funniest people we know. Admitting it is the first step…kqNG

February of 2009 – Right AFTER Valentine’s Day, little missy decided to  get sick in a big way. It’s what started this whole fun fiasco that we are still waiting for her to “grow out of”. Failure to thrive, RSV, bilateral pneumonia, urosepsis, staring death in the face and yelling “you’ll never take my freedom”, PICC lines, feedings pumps – and a partridge in a pear tree. We barely made it home in time for Kealey’s birthday. Kendall got her first tubey – an NG tube that was inserted into her nose and down into her tummy. She also got technically another tubey – the PICC, but that wasn’t for nutrition.

February of 2010 – Second verse same as the first. Kendall decides to stop breathing one nite, and back in she goes. This started a fun merry-go-round of springtime hospital March 2010 064 stays. Again, we get out JUST in time for the Valentine’s Day parties at school (one of which i was in charge of), and go SQUEAKING in to the dance competition with about 30 minutes to spare. (Kendall also apparently likes to go into the hospitals around every dance comp the girls have. Just to, you know, keep things interesting.) Kendall also got her third tubey – we switched her G-tube button into a G-J long tube in order to give her overworked/hardly working tummy a break, and feed her straight into her intestines. 

(and yes I do realize this photo is labelled march – i didn’t have pics of her february tube change like i was looking for – and this shows her GJ tube coming out of her tummy along with a few other random wires from being inpatient at the time.)

February of 2011 – I am not one to breathe life into things, but I gotta tell you, this kid’s in a tight spot right now.  So far, no new tubes (yay! – unless you count the new “tube”/port a couple weeks ago), but her gut is definitely not in love with february at all. i’ll spare you the gory details, but let’s just say that anything we can get into her, is quickly coming right back out. Via many different orifices. Around any kind of plugging mechanism we try to stop it with (and i mean her tubes. I’m not even going to address it if you think i am trying to plug up other holes!) Even with the port for fluid replacing, it doesn’t help us replace calories/electrolytes, and THAT is where she starts to run into problems. I think the hardest part of seeing how bad it got yesterday (with the fluid output that we could measure), was how HAPPY she was, seemingly because she was not in pain, as she has been for a few weeks now. Let’s just say that part of what we were getting out yesterday afternoon was stuff that had been put in the day before. She isn’t seemingly “pseudo-obstructed” as she gets when she has another illness going on that leads to this kind of “gut shutdown” that she deals with on an occasional but temporary basis. she just seems like she would rather not have a lick of food/fluid in her GI tract! Last nite was a little worrisome only because her nurse had advised us to stop all feeds, which is a good thought, except metabolically she can’t handle an overnite fast. So we just ran sugary pedialyte at a very slow rate, and i set my alarm to get up a couple times to do accuchecks (poke her finger and check her blood sugars) to make sure that even at the slow rate she was a.) absorbing some of the sugar and b.) not dipping too low/otherwise reacting. Or c.) choking herself with one of the 6 tubes hanging off of different body parts.

So – that’s where she’s at now. Hinged precariously on a cliff edge of “check-in to Hotel LG” or “Casa de CHW”.  I am trying to not let the past history bring me down, but it’s definitely a tough game mentally to not go there.  I don’t know what else they would really do for her inpatient (except give her more appropriate fluids than what we have at home – D5/D10 vs. the normal saline we have here), and possibly monitor her labs a little bit more. Considering that her GI already wanted us to stop in the ER on Friday when we were there, I just think his leash is not real long as far as letting Kendall just go on like this willy nilly with not tolerating full feeds, or really any feeds to speak of. But – there’s always hope! Maybe she just needs a short break for her tummy (HA! try telling her that!), or maybe she has some strange little virus that is just hitting her this way…

I need to just be done with this post since i started it this morning.

 

I have lots more to say. Mostly about my special amazing beautiful wonderful hug from Jesus called a “Keurig”. But also a few other things. That may or may not hold your interest. Don’t say I didn’t warn you.

Much love to my peeps tonite.

The T.

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