September the First.

I don’t know why i’m always so shocked to see how long it’s been since I last posted.

But still…. June?

September will be better,  I promise. I already have lots of fun mildly eye-roll-inducing SUPER INTERESTING posts lined up.

And even a few vlogs! (speaking of, I have a burning question regarding vlog vs blog on a specific topic on the Terra Talking Facebook Page – go over there, like it if you already don’t, and help decide the fate of my awesome story!!)

So since most of you come here to read about Kendall, and how she’s doing, I’ll start the month off with that.

Overall, she’s doing good. Other than the crazy bug bite from hell that turned into an abcess/cellulitis that required hospitalization and ten days of IV antibiotics and a week of IV stress dose steroids, she’s been doing a good job holding her own.2SS_6375

But oh…how I wish you could see what I mean when i say she is exhausted. How much my heart breaks for this little girl who shoulders up her backpack, full of two pumps and two bags of fluids the last couple weeks, and wears it on the hot sticky days like a champ, never complaining, never whining about it, just maneuvering around with it because this is her life and this is what she knows how to do: LIVE.

She loves going to school. Absolutely ADORES it! It wears her out so badly (and yes, I get that all first graders are tired and adjusting to a new schedule – I was prepared for some tiredness but this is a whole other level of exhaustion for Kendall!), but she puts on that crazy smile of hers and she keeps her chin up and she does her absolute best to pay attention to the teacher and to keep up with the class and she’s trying so hard. i’m so proud of her. She’s amazing.

This infection she had – well, it hit me almost as hard as it hit her. She had JUST gotten IVIG, the magical unicorn tears I have held up for the past two years as being the reason she has stayed so healthy.  And as a quick primer on IVIG for those who are newer around here – it stands for IntraVenous ImmunoGlobulin.  Your body’s “immune system” is complex and multi-faceted but for space and time constraints i’ll boil it down to this: your blood has three main components of immunoglobulin which are technically your “fighters” against bacteria, viruses, fungi, etc. You have IgA, IgM and IgG. IgG is the main one you need in order to have an immune system as most people consider it.  Contrary to popular belief, “picking up every cold under the sun” is not actually a sign of a weak immune system. It’s a sign of a good one – your fighters kick in! You get the fever (WHICH IS A GOOD THING!!! It means your body is fighting invaders!), you get a runny nose, etc etc – and you fight off the infection thanks to your IgG.

Then we have Kendall. She technically HAS IgG in her blood, and sometimes she even has a really good amount of it – but it’s like having an army of soldiers who are all narcoleptic and/or otherwise incapacitated. Her own native immune system doesn’t recognize invaders until it’s WAY too late. Even with the IgG that we infuse into her bloodstream every few weeks, her immune system is extremely lazy. So what happened a few weeks ago is that when she got a bug bite on her little booty cheek, her body didn’t send the soldiers to help control the spread of the bite reaction as is typical. Hers went from “regular mosquito bite” to “holy crap what IS THAT THING!?!?!?!!?” in about 72 hours. And we were running IV benadryl to try to stop it from getting worse and it was just getting out of our control almost before our eyes.

And i was glad that we are at a place with her team that when I send an email (with a picture) and say  “ummmmmm…..help me?”, they jumped into action. I didn’t have to spell my fears out for her doc, he knew what I was thinking. This is the kind of stuff that takes Kendall down hard. Maybe not right then, but if we had not nipped that in the bud, it would have easily been systemic within the week. Septic, most likely. A blood stream infection that would wreak havoc on her organs and little body – all from a bug bite.

Now of course we have no way of knowing for sure – and no one really wants to try to find out. But the fact of the matter remains that Kendall looks amazing on the outside, and yet her body fights a raging war on the inside, every single day.  I am SO thankful for our new nurses who are very on top of learning all of Kendall’s “Kendallisms” and helping me manage the delicate balance of meds/fluids/vitals that keep her able to go to school with a smile on her face and sit in that little desk like the other kids in her class and  live her life the best way she knows how.

A bug bite. A little regular probably mosquito bite. And it was as if her body didn’t even recognize that it was fighting what was quickly becoming a massive infection. I’d be lying if i told you it doesn’t scare me a little bit for this winter.  I have NEVER wanted to live my life, or hers, keeping her away from living her life. I’ve never tried to keep her quarantined from things (although I like to think i make decisions in her best interest as far as when to go and when to stay home). I don’t make it a huge deal that my kid has basically no functional immune system. It’s just not how I’ve ever wanted to treat her or live. But my gosh…to see what just happened, it makes me stop and think. And overthink probably….

So that’s where she’s at. With currently a very minimally functioning immune system, but off the antibiotics and steroids for now (YAY!!!! Those drugs are brutal on her and I hate when she needs them, even though I am SO very grateful for them.)
We are still going up to Milwaukee once a week for iron infusions – I think we only have three more left though! After that course is done, we will re-run the labs and see if we have done enough boosting to let her coast for a while. My impression is that we have definitely helped her feel TONS better, and I don’t see the massive crash after a few days that we were at the beginning of the infusions. But I do wonder how long that will “stick” once we stop the infusions.

School is going…..well…..it’s going! It is becoming more obvious and apparent that there are some MAJOR lags in Kendall’s ability to keep up with the class – and while that is in part due to her needing to miss one day each week, it is in larger part due to the fact that she has ALWAYS had struggles with actually learning and retaining the information taught in class. That isn’t to say that she isn’t smart as a whip – cause she is! She can throw around medical terminology correctly and tell you about feeding pumps and IV pumps and discuss IV medications better than a lot of medical students probably. Yet – she can’t recall the sounds each letter makes and spell a word off the top of her head from her word wall list. She can’t tell you how to sort a group of like words. It is hard to put it into words exactly, what we see and observe, all I know is – she is struggling and I refuse to let her continue to struggle without some major help.
So next Tuesday we will be shlepping BACK up to milwaukee for all day neuropsych testing to determine what, if any, learning disabilities Kendall has that we can identify and hopefully help address. It isn’t like this news comes as a shock. Her doctor actually put in the referral for this testing LAST YEAR, but insurance has finally approved it and the clinic finally has an opening. While i know this will be yet another “thing” to add to the diagnosis pile, I am hopeful that at least this one we can attack. This time we can maybe help solve a problem instead of just minimizing damage.
This post is all over the place and I feel like there’s so much more I could say about where Kendall is at….or my feelings on the matter. But I’m sure they will come out in bits and pieces in other posts over the next month.

Thanks for sticking around if you’re still here. I hope to have lots more to talk about over the next few weeks and it’s so nice to know you’re listening!

Have a beautiful evening, party people. See you on the flip side…

Terra.

Home away from home.

For those who don’t know – Kendall was re-admitted to her home away from home here on PICU 5 up in Milwaukee on Thursday night. At this point we are still unsure if it is an infection trying to brew that we caught super early, or if it is a delayed and “abnormal” reaction to the IVIG treatment she received on tuesday.

She started acting “off” on Wednesday afternoon, was definitely off on Thursday morning, and was a certifiable “hot mess” by Thursday afternoon. She spiked up to 102.8 fever, very high heart rates and blood pressures, and was becoming inconsolable from pain – so I ran around like a chicken with my head cut off for an hour waiting for babies to get off buses and hoping Ben could cancel his work trip in order to fight rush hour traffic and get home. My mind immediately began playing back the track of her doctor telling me “she will not survive another infection back to back” – and i was struggling to keep my panic in check while trying to stay calm enough to get the big girls and their logistics settled down.
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Thank God for good friends, for gas tanks that manage to run on fumes, and for a husband who can drive like a bat outta hell when one of his baby girls needs him. At the end of the day, the girls went to a friends house, Ben made it to the hospital with me and kendall, and as smooth as things can go in a situation like this, they went smoothly. It was So hard to run out the door, the girls had just come in off the bus all ready to tell me stories of their day, and instead i was waiting at the door so they could kiss their febrile, cranky sister goodbye and i could tell them to sit inside quietly with the door locked until daddy came home. They all had such stiff upper lips, but kaylen’s little lower lip quivered just a little bit as she was saying goodbye. i hate that they all have to know this kind of “fear” – are you coming home with sissy tonight? how long will it be until daddy is here? when will we see you again? – and yet have learned coping mechanisms to shove the fear down, sit at the table and get right to homework. My dear friend sharla who has stepped in and become a second mommy to my girls over this past crazy year was able to run and rescue them so that I could have Ben at the hospital with me. At that time i had no idea if Kendall was headed towards another bad crash or if it was just something “simple”. I had no idea if the hospital was going to follow Kendall’s protocol or if i was going to have to pull the momma bear routine again. Sometimes you just need poppa bear to come in and set some people right.

Thank the Lord we did not either of us have to get to that point. Edwards was already on top of everything by the time we got into a room thanks to a proactive phone call from our Milwaukee team explaining the severity of Kendall’s last few infections and that we just cannot tell ahead of time what is or isn’t Kendall “doing ok”. They started her protocol procedures immediately, gave Kendall extra comfort meds and Ben and I were able to focus on just praying over Kendall and getting logistics worked out. I was able to drive myself back home, get gas in the VERY empty car, and pack calmly for what is hopefully only a couple day stay. I went with the theory that if i packed for three weeks, we would only be here for three days. I got a small lecture about eating a real meal from “someone”, so I stopped to eat, and by the time I got back to Edwards, the milwaukee transport team had an ETA within 30 minutes. once I saw them get her all shifted over to their machines, I took off so I could be at the hospital ahead of them. I figured Kendall would sleep the whole trip up, but would be asking for me once she woke up when they stopped, and that is exactly what happened. We got about 30 minutes away from CHW and the skies just opened up into a torrential downpour! I was trying again to be calm about the fact that I was in one vehicle with zero visibility while my baby laid in the back of ambulance somewhere behind me, barreling towards the ICU, and I had no idea if she was still stable or if she was pulling crazy stuff. Again, the peace that passes understanding washed over me and I just knew she would be ok. Somehow, some way – she was going to be ok.

I pulled in to the garage, parked and unloaded our stuff, and began the long slow walk up to our unit. I knew we were in a room far away from where we were last month, but it was still a little hard to not start breathing a little hyperventilatery when i had to be buzzed in. I turned the corner around the welcome desk and down the hallway came one of our beautiful amazing nurses, one i am blessed to call my friend, running and jumping to come give me a hug. Its the kind of place you never want to be “excited” about being, and yet if you have to be here, its so good to be among friends and family. right then, I knew we would be ok. I knew i would get “some” sleep that night because once I answered all the questions I had to for check in, i knew our nurses would be able to handle anything Kendall threw their way.

And then the next day we had our angel nurse rachel back on the case – and when a new to us attending asked if we could transfer kendall up to the floor for observation, her firm and emphatic “no we can NOT” that went along with the horrified shakes of their heads “no” from the other rounding team members who know kendall again gave me such a peace that no matter what – we would all be ok. We were in the right place. It is hard and expensive and drives me CRAZY sometimes to make this drive – and yet, there is no other place. For better or for worse, milwaukee is where kendall belongs when she cannot be at home anymore.  I cannot put it into words for those who have never walked this path of medicalities before. And for those who have – you know exactly what I mean.

Anyways – Kendall is hangin tough. As part of her “emergency protocol” we started stress dose steroids in the ER and are dosing her every few hours. So far, Kendall has not had the cliff dive of craziness that we would normally see if she were septic (had something growing in her blood cultures). SO SO SO grateful for that.  But it leaves us all scratching our heads a little bit because her labs otherwise “look” like she could be fighting something, but she’s not “acting” that sick. So is that because the steroids are doing their job and stopping the catastrophic shock her body has been going in to? Or is it because this isn’t really sepsis, but rather a reaction to the IVIG treatment that is mimicking sepsis because her body is still recognizing those immunities as antibodies, something to be fought and rejected vs helpers to be assimilated.
Tough questions, and no one has any magical 8 ball to shake for good answers.
All we have is time, antibiotics, and a whole group of really smart doctors and nurses putting their minds to the grind and hashing through what they know of complex kids, and what they know of Kendall and her “-isms”. The hope right now, Saturday night, is that we get a final “all clear” report from the cultures drawn on thursday night, and that the labs we draw at 4 am show that her blood counts are going UP instead of the downward trend they’ve been on. If those two things happen, we will likely make plans for discharge tomorrow, call it a bad reaction, and have a conference at some point in the next couple weeks about how we will make a better plan for NEXT infusion time to support kendall’s body a little better to make it not cause this kind of reaction.
Mostly – I will be overjoyed to call this a reaction.

If it were another infection, it would be disheartening. we had just started gaining some good momentum with getting her back to baseline. It would feel a little….hopeless? I guess that’s the word i’m looking for….to think that her body was already spitting out bad bacteria. In spite of doing “all the right stuff” for her care. I do’nt really think it is an infection. i really feel like its just her crazy body showing us that her baseline is still razor thin. she has no reserves to deal with any little thing that pushes her out of that teeny tiny zone of “ok”. that in and of itself is a hard realization.
“but she looks so GOOD!” we hear this so often. It is a phrase that is the bane of every complex kiddo’s mom’s existence.We rejoice in the good days! They are awesome! We are glad that you get to see our kiddo’s who fight day in and day out just to have a semblance of normalcy “looking good”. I pour myself into making sure Kendall “looks good”. I do take it as a compliment when I hear that – but it is really sometimes hard to hear it. Because what it doesn’t say is “I can’t imagine how much it takes to keep her looking good”, or “how is she doing on the inside to be looking so good on the outside?” Not that i expect most of you to say that! If we are out and about in any kind of way where you are seeing us in public, she probably really IS doing as good as she looks. But for me – it is hard to look at her sometimes – wanting to chase her sisters and run to Target with mommy and just wanting to LIVE her life – and have to wonder what is really going on inside? 
but this is our life right now.

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we live by faith. Faith and hope that what we see is what we get – that good equals GOOD.
I am tired and feel like i’m rambling now. i didn’t get to many of my “mito awareness” plans for posts this week – but hopefully Kendall’s real life adventures are good mito awareness for you all. More so than any facts I could spout out – I hope that Kendall’s story brings awareness to the fact that none of us should ever take anything for granted. Grab hold of each minute, each boring hour at work, each tedious trip to the grocery store, each back-breaking loading of the dishwasher – relish that each of them has a good side. That’s what my mito awareness is. As I think of friends we’ve met on this journey who are watching their children near the end of their journeys on earth, I consider myself lucky. I will think of them, and think of our own story and the stories of so many of our friends with mito – and I will BE AWARE, that life is a gift.  All of the bad times and all of the boring times and all of the amazing yippee-skippee times – they are all worthy of being cherished. Because they all make up LIFE.

I hope you are all grabbing hold of life and living it to the fullest as best as you know how.

sorry for my crazy scattered thoughts tonight! if you have questions I didn’t answer – let me know!

 

much love to you all –

keep on keepin on~

 

terra

Life in the picu.

Realized that some of my updates may be somewhat confusing to some people, and thought i’d make a video to both help you understand what we are looking at, as well as to preserve it for the princess to understand exactly how very brave and strong she is.
It may be a little too graphic for some little eyes – because Kendall definitely is not able to move and it can be a little sad to see. So watch it with that precaution in mind, if you choose.

But otherwise, I present to you, room West515 – our home away from home! 😉

As always – if you have any questions about anything, feel free to ask!

thank you so much for your prayers and continued thoughts and love! Eacn and every one of you is so appreciated by me, by our family.
(and yes, it is totally ok to laugh at the part where i’m trying to show you how the hospital bed boxes get set up!)

 

Have a beautiful day and keep on keepin on!

Terra

 

 

My sweet Cinderella.

IMG_4770 Update? You want an update? Stick around for five minutes because it will probably have changed by then.

Where to even begin with an update on Kendall’s medical situation? I’m not even sure where I last left off! It has been another week from the 2nd layer of hell, which I believe is named “CHAOS”. And really, even that is both an understatement, and in some ways an overstatement. On the one hand, we are home. We have somehow managed to STAY home with this girl who requires such a high level of skilled/technical care right now that she would require 1:1 nursing if we were inpatient. It has not been easy. And today it got a whole lot harder. But i’ll get to that in a minute. I want you to know that I AM truly grateful that we still have it as “good” as we have it, and I do not take that lightly or for granted. We are home with a mostly functional Kendall, operating as a family, all together. We have power and electricity and a warm house. We are blessed because of what we DO have, and I want to live in that state of gratitude for every moment we have together – including the crazy ones, or the ones where i’m being driven insane by the demands of all four of my beautiful girls, or the ones where I am frantically trying to do math in my head to calculate hours/timing/preparations for the next set of medications to be administered. All of these things, I am grateful for. I am grateful for good friends who feed my chocolate addiction and friends who sit on the kitchen floor with me creating a pumpkin carriage for my daughter’s wheelchair.

I am SO VERY GRATEFUL to all of you who helped make my “wish” for Kendall’s birthday come true – to have 400 friends on her “Hope for Kendall” facebook page. We hit that goal in just under two days! So now I have a newer bigger one – to have 1000 friends by her fourth birthday (November 14th!) Please go “like” her page if you haven’t already, and feel free to share it with your friends too! i’d love for it to be a place that you can leave messages for Kendall, birthday wishes, pictures, whatever. She goes through so much – more than i even capture in words here on the blog, and i’d love to be able to gather all the good words you all have to say about her in one place. Anyways – that’s that. Speaking of her birthday – I obviously have not had the time/resources to plan a big celebration party like I have in years past, and this makes me a little sad. I love being able to have  so many of you in the same room to celebrate another awesome year for our beautiful princess, and her amazing sisters, and all of the people who are the village that raises her! So maybe we will have to figure out some “online” alternative. She is being adamant about the cow (from Chick-Fil-A) coming to see her again and giving her a chicken nugget meal (??? I can only say she’s on a crapload of meds, it has to be inducing crazy dreams!)….Because we are at CFA like at least once a week so i’m not sure what is supposed to make it different on her birthday. But I digress. If I come up with something birthday related, I will be sure to let you know!

family-4 Halloween was a huge hit for all four girls! I have TONS more pics of everything to put up from trick or treating last nite – the pics I will be adding to this post are from her parade at school, which was amazing to see. She was able to go to school on the day of her parade, and came home to take a really good long nap which she needed (almost four and a half hours!) And then on Wednesday…oh wednesday….It was stressful. And it really wasn’t because I was trying to cram too much stuff in. It is just because of the craziness of our lives. Until you have lived it, I don’t think I can adequately capture it for you. I listened to Ben try to give his boss a synopsis of what all was going on, and I thought “wow, that all SOUNDS bad, but it doesn’t sound even HALF as bad being repeated back to someone as it is to LIVE it”. So I’ll try to capture it all so I can sort it all out for myself – but know that I will fail at trying to even begin to sum up the insane amounts of stress I was under yesterday/today.

It started when we were discharged on Saturday. That morning, the doctors came in one by one to round and get discharge summaries finished, and one of them almost casually mentioned that indeed, there was a “large non-occlusive thrombus” located in one of her main vessels that was very near where her new line was placed. (this information was all very confusing to me on Saturday because I was getting it piecemeal, but I have since been able to gather that it is in the vein her PICC line was in, which does branch out from the vein her current line is in. Not sure it makes a ton of difference, really, the point being, she has a big clot. our only “good news” about it was that because it was non-occlusive, meaning it didn’t completely block blood flow to a major vessel, it wasn’t anything to get super worked up over. Or so they tried to tell me. “They” being the three different doctors I had come in to the room to reassure me that it really was ok to have this “2-3 inch long” clot hanging out in my kids’ veins and just shrug and say “c’est la vie” basically when asked what we do about it. I really really really wanted to believe them. And obviously, I did buy it to some degree, because later that afternoon, we headed out.

kendall came home on a rather extensive maintenance plan for this new line, which involves three weeks family-7 of an antibiotic that is administered into her IV line four times a day (every six hours, including through the nite), that takes an hour to run each time. She is also on four weeks of an anti-fungal that luckily runs only one time a day, but it cannot run while anything else is running. It is taking almost two hours for this to run, but we are hopeful that switching it over to a pumped med (vs a self-infusing “ball”) will help this. Her blood pressures are so elevated at the time being (presumably due to the large clot) that it is hard to get meds to infuse with just “gravity” alone (like we typically do). She also has started a therapy known as “ethanol locking” her line. this involves pushing 100% alcohol (ethanol) into her broviac, leaving it in place (just indwelling the plastic of her line) for three hours, withdrawing that and pushing in a clot-busting medication (but not the kind of medication she needs to bust the big clot in her vein!) to sit in her line for another hour and withdrawing that, then flushing through with regular saline before starting her next medication dose. She’s been on crazier med schedules than this one before – but it seems like so much more to deal with this time, probably because it’s imperative to remember to WITHDRAW the ethanol and tpa, and i am so used to flushing THROUGH when I hook up to her line.

It’s a lot. Even the nurses at the hospital were getting slightly overwhelmed with Kendall’s care, and they have everything prepared and at their fingertips! Anyways – EVERYONE who I talked to between Saturday and Monday was telling me that it was not right that they weren’t doing anything about this clot in Kendall’s vein and I should try calling her doctor again. So when the nurse called to followup on discharge and I asked her to please have Dr. G weigh in on this issue, she readily agreed. FIRST THING the next morning, the good doctor was on the line himself (a rarity!) spelling out the plan for me, and asking me to bring her in right then. I gently reminded him that it was Halloween and that not only was Cinderella planning on enjoying the festivities, but three other little munchkins were depending on me to be present at school parties/parades, get costume stuff, trick or treat as a family…And he conceded that Thursday or Friday would suffice. I also pointed out that if it WAS A true emergency, why did they let us go from the hospital? he actually apologized to me that the ball had been dropped on this situation, and said he was going to do everything he could to make sure we got on top of it now. As bad as that all might sound, to hear the actual conversations, it isn’t as crazy as it might seem. It is one of those “gray areas” that doctors face – to treat or not to treat certain issues. The doctors I was asking for opinions from were all sub-specialists, and none of them are on Kendall’s “big picture” team. That is Dr. G’s job. And as such, he was able to see that treating the clot is the best course of therapy based on the info we DO know. It’s not that the other doctors were “wrong”, they were just operating from a knowledge base that was narrow in scope. (On top of the usual “oh I thought such and such specialty handled that!” rigamarole.)

And again, to try to capture for you the absolute and utter chaos of yesterday morning trying to make this happen (starting her on a specific med and order specific labwork to check her baseline status)…i will fall short. i was literally shaking from the stress of it all by yesterday afternoon. First her TPN nurse (not a regular stay at our house nurse, we are still looking for one of those!!!) needed to come draw her regular labs and change kendall’s dressing. This was stressful because Kendall’s dressing was totally open AGAIN. This happens when she has an allergic reaction to something. When we got to the ER last week, they went to change her dressing (it was all bloody from surgery the day before), and before I realized what the nurse was doing, she had cleaned the entire site with CHG (a cleaning agent that Kendall is allergic to). As such, Kendall’s skin has been peeling off in large chunks where dressings SHOULD be sticking, so we are having to play a fun game of ring around the rosy which dressing will stick today. It’s frustrating, anxiety-causing, and stressful because she DOES NOT need any help in the infection department right now! So we got her all cleaned up and sterile again, the nurse drew the regular labs, we got all the new meds ordered and straightened out for her paperwork, and she goes to the lab.IMG_4782 Meanwhile I pack the younger ones in the car to head to my sister’s house to drop off my mom’s broken camera (because my sister has the receipt to return it) – and as we are passing the outpatient lab our nurse takes the blood too, I get a call from her that the lab is refusing to run the bloodwork because she didn’t bring enough blood in and they also don’t run the panel of labs her doctor in milwaukee is requesting. If you are on FB at all, you saw all of THAT hullaballoo, which HAS been resolved as of Thursday afternoon, but yesterday it was enough to get my blood pressure WAY up.

So we pulled into the parking lot of the hospital, our nurse comes out all gloved up, and we pull EVEN MORE blood from Kendall in the parking lot. Because who doesn’t have to pull labs in their carseat???

I got the camera to the right place, got food in Kaylen, got her on the bus, and finally got Kendall down for a nap. I had in this time also fielded no less than four calls from milwaukee that no labs near us (and she was calling everyone in a 50 mile radius from our address) had the amount of medication in a small enough dose for Kendall RIGHT THEN. MANY places could have ordered it for us, but her doctor really wanted her started on it Wednesday night. So between trying to find that, argue with the lab that they COULD pull the right labs because a.) they had just done them all three weeks ago when we were inpatient and b.) if they couldn’t, then they would have a morgue full of dead people who had all bled out and the docs were stumped because they had no way of ordering bloodwork to figure out what people’s clotting times were and if they were at risk for stroke or heart attack or any of a number of different things that the hospital prides itself on treating.

Stupidity. Laziness. Chaos. Breathe.

I wasIMG_4784 dealing with all of this WHILE trying to be a happy smiley fun room mom for Kaylen’s kindergarten halloween party. She was SO happy to have ME focusing on HER for once…ugh. I was trying SO HARD to not be stressed about everything, but I’m not sure i succeeded. Sometimes i wish I could be “stressed” about whether or not we had cut enough apple slices or if everyone had an equal amount of candy corns in their craft project. But i just can’t. my stresses are so often so much larger than i can put into words, so much larger than any friend can carry. I can only give these huge burdens of stress to Jesus. It only sounds trite until it’s your only option. Trust me on that.

So anyways, as these things typically do, it all worked out in the end. The lab had to be told step by step what labwork needed to be done, and they realized they COULD actually run all of that. The pharmacy in milwaukee had all of the medication available for Kendall, insurance approval, and could have it ready for us early Thursday morning. We adjusted our appointment schedule so that instead of going in on Friday for a “look-see” by the doctor and therapeutic level labs, we went up very early this morning so he could see her as a baseline, train us on the meds, get the meds from the pharmacy, go over the labwork, and we will do the therapeutic level labs from home tomorrow.

Prior to getting a phone call from the lab manager, I thought this was an iffy plan, but we needed the meds, and Dr G needed to see her. So i got up at 5 this morning (oh that pains me to even write…I am SO NOT an early morning person!), got all of her afternoon meds packed up, got my “keep us out of the hospital” bag packed and in the car, and off we went. We made great time, got the meds from the pharmacy (I have never in my life seen a pharmacy receipt for $0.00!!! Praise God!!!), got our “training” on how to give injections (which i unfortunately already have, from when we had to give her B12 injections into her skinny little thighs when she was a baby!), and got the approval from Dr. G that she was “good to go”. Her blood counts are not ideal, but they are enough to hopefully hold her stable through the six week course of blood thinning medication we will be injecting into her legs. (and if you are wondering why we inject medicine into her legs instead of into her veins – I have no idea. I am sure there is someone who can explain it, and if i find out, i’ll let you know. I just do what i’m told!)

I’m honestly not totally sure HOW i am doing with all of this. I mean really, the better question is how is Kendall doing with all of this. SHE is the one who deals with so much, day after day after day. It is always something. Some area of pain or weakness or feeling bad. And now shots into her legs. That cause instant bruising. I’m tired. I’m still kind of stressed. I’m trying to not eat every. single. piece. of halloween candy hanging out in this house. I’m worried. I’m overwhelmed. I’m glad for Ben’s job that allows him to arrange his schedule so much to be home and be involved in this chaos. I’m a lot of things. Sane isn’t one of them. This is losing cohesiveness and sense real quick so i’ll wrap up here and try to make it make more sense tomorrow. Thank you for checking in on us!

Hope you all had a Happy Halloween and got all of your favorite candy!!

 

Terra.

Round and Round.

Right now I’m waiting for rounds. Not very patiently. I need coffee badly. And a reese’s cookie for good measure. But I don’t want to miss the team rounding because they will give the update on what is going on as a cohesive report, vs the piecemeal info I get from random nurses and doctors who come in.

Anyways – things are still going well. Kendall continues to look really good – not at all “bacteremic”. Very very good news! So far her cultures from yesterday, both peripheral and off her line, are negative. We are almost at the 24 hour mark so that is also very very good news!

It is looking like the original bug growing is enterococcus, a gram positive bug that CAN be a hospital acquired bug. They are pretty sure it’s not a contaminant as the original hope was, but are still stumped as to how she managed to pick it up. She also has two gram-negative bugs growing in her urine that are still pending identification. Given the NASTY laundry we were dealing with on Sunday and Monday (and the lingering horrid smell in her bedroom still) – I am not shocked by this. Her urine was basically so full of mucus that it looked like she was peeing skim milk.

All of this is making her doctors think that what we did was catch an infection EXTREMELY early,IMG_4658 mostly only by luck (although I tend to think it was probably more God-directed than anything). And that what could be happening is that Kendall is translocating stuff out of her bladder AND gut – but that because she routinely has these kind of “off days” and autonomic temps, *I* am (claiming sole responsibility here) not getting her checked/treated in time, and it’s going systemic. Now of course her doctors aren’t blaming me like this, they say “how could we know? she’s had just as many times where nothing has been wrong as has been times where something is wrong” – and that is true. But still – the conversations have been more about what will our protocol be for getting her “wonky days” checked out a little better. If we can just put a stop to this current cycle of infections, everyone thinks we will be good to go. we had her infection free for over a year – we can get her there again!

(clearly I got a little more sleep and food since my post last nite – I am able to think much more clearly and be more positive about where we are at!) so anyways – that’s what I know right now, early afternoon.

The doctor we have been waiting to have consult on Kendall’s case just came in. And luckily he lived up to expectations! (this may or may not be because he told me that moms like me are to be listened to very very closely, because we will usually teach doctors a thing or two!) Overall, he was just a breath of fresh air. He had read the history of kendall’s latest infection cycle, and just had a creepy understanding of how and why little organisms work in the human body. He will be changing a few of her meds around, which will mean a rather crazy schedule at home (where we don’t have the luxury of nurses around the clock to do all the work!) He wanted to know if I was going to be ok with that. i told him that if i had to administer IV antibiotics every 2 hours I would do it in order to keep this line clean. He laughed at me a little and said “john (kendall’s special needs doctor) told me you’d probably say that, but I wanted to hear it for myself!”

So we will do the crazy med schedule and new line protecting regimen and hopefully get on top of this cycle once and for all. But our conversation wasn’t entirely focused on this acute situation. In fact, we talked for longer about WHY this is currently happening, and what can we do to STOP it. Most CVL moms know/dread the term “cycle line infections”. It is when your body does what Kendall’s is doing – continuing to spew out infection after infection, as soon as the antibiotics are stopped, a new course is needed. Some kids get into cycles very often – other kids rarely have a cycle, and still others never cycle, but get random infections. No one really knows how or why this difference is. But at the end of the day – Kendall is in a cycle.

He found it very interesting that while Kendall has had cycles before, we also had a year+ of having NO infections. The main difference for that? Kendall’s overgrowth meds. I think I’ve talked about these meds before – they are a bunch of super strong IV meds that we get compounded down into liquid gooey nastiness that we can push through her tubes in order to kill the bad/overgrown gut bacteria that likes to leak into her bloodstream. Due to the nature of the meds and the fact that we need them compounded at a special pharmacy – they are NOT cheap. Insurance covers a nominal amount (roughly $30), and Kendall’s secondary Medicaid won’t even touch them because they are technically “black boxed” meds. Basically this summer, we couldn’t afford her meds. And now we have her back in a cycle. Our special needs nurse sent orders to a local pharmacy up here to see if they can get insurance to see the fallacy of their payment reasoning. $250,000 for a monthly hospital visit, or $250 for a monthly supply of drugs. Pretty sure even a politician could figure out that math. We have two doctors ready to write letters of medical necessity to support her needing these meds and hopefully between all of this, we can get our out-of-pocket costs back down to an affordable amount.

IMG_4591 But those meds are just one part of the equation. We will also be starting the ethanol locking of Kendall’s line to ensure that the broviac itself has kind of “bad bug repellent” on it. And when i asked Dr. Havens how to stop the cycle of infections, he looked at me and said “ Stop the antibiotics”.

Alrighty then!

Basically what he means is this (I’m borrowing his analogy – cause i think its so great! And easy to understand!) – Pretend like your gut is a church. And the walls of your gut are the pews people sit in. You want there to be GOOD people in those pew – nice, pearl-wearing, praise-singing little old ladies who love Jesus. (ok i get that theologically this is not sound, but go with it). Good people in the pews of your church – got it?

well, antibiotics come in and make the good people of church leave. Just kills them, makes them get up and stomp out, take their friends with them – gone. And THENNNNn – that leaves room for all the BAD PEOPLE to come sit in your church pews. Tattooed, bike-riding, swearing, drug-dealing bad people are now sparsely sitting in the pews of your church, and letting all sorts of chaos go on in your church (gut). They run rampant, knock holes in the walls of the church, and now you just have a bunch of tattooed Hell’s Angels roaming around your abdominal cavity and taking cruises in your bloodstream. Kendall’s church does not have good people in it!!! So the way to STOP this activity, is to stop antibiotics. Drink Activia, repopulate your church with good people sitting in nice strong pews, and non-holey walls in your church, eat yogurt and leafy greens. Poop regularly – so you can flush the bad guys down the toilet. Literally.

Clearly, that is a great theory for guts that actually function well. Kendall’s does not. So our goal is to keep the bad guys moving, and reduce Kendall’s antibiotic use as much as possible. This will mean that we treat even less of her UTI’s than we already do. This will mean that she will have more pain again – but there are ways we can hopefully lessen the pain, lessen the risk of re-infection, and keep things moving forward. AND GET OUTTA THIS CYCLE!!

So what I came away with is that Kendall does have an immune deficiency – but it is one of functionality vs. one of a “traditional” sense where her blood cells don’t function well. Her immune SYSTEM (the T-cells and IgG and all that good stuff) that is actually functioning pretty well, given what it has to fight on a week to week basis. It is part of why she DOES bounce back from her infections so well once we get the right meds in place to kick the bad guys out of her bloodstream. That is a very good thing! Finally something her body does RIGHT!! But a major component of a HEALTHY functional immune system, is a healthy functional gut and bladder. That is how germs leave your body – through your waste. Kendall’s body doesn’t have an effective waste management system, and THAT is why she is in this current cycle. Microbiology – I do not understand at all. Gram negative, gram positive, rods, chains, bacilli, fungal pseudohyphae – gibberish. Poop? That i can do.  Keep her pooping and thereby we will HOPEFULLY keep her ridding herself of the bad guys. This is so much easier said than done that i can’t even tell you. BUT – it is a plan that I can understand. There aren’t a whole lot of warm fuzzy answers out there right now – but if this is as good as we can get – I’ll definitely take it.

We still have to have a few more conversations with her team as far as when and how do we react to Kendall’s “off days”. How do we know when to treat and when to sit back? Lots of questions still –but i feel like we at least have a compass heading now. SO much better than yesterday. Again I am blown away with the good care she is receiving here this visit. She somehow convinced her student nurse to take her to the playroom today.IMG_4674 Honestly i am not sure how he managed to convince his instructor that he could only work with Kendall today, and that playing tea party with her was part of the care he ‘HAD’ to give her…But up and down the hallway I can hear people walking by the playroom – oh look! Kendall’s in there! Hi Kendall! How are you Kendall! I am SO relieved that she feels good enough to go play in the playroom, as that rarely happens when we are here! She is definitely getting ready for her Halloween character – Cinderella – by being in RARE princess form and ordering around basically everyone who comes into our room! If it wasn’t so brat-tastic it might actually be cute. Our main doctor (her special needs doc) actually sent a text to her team yesterday when she arrived in the ER:”Kendall is in the ED for the + cultures. She is just TOO CUTE! Wanted graham crackers. I got her some. Admitting and ordering abx.” (One of the nurses showed it to me!) And this is why she thinks she can get away with anything! Being cute is actually part of her charted record!

Anyways – obviously a much better update today than yesterday. That is mostly due to your prayers. So thank you for that! Even I feel much better, lighter-hearted even, than yesterday. It is by the grace of God that our doctor ordered those cultures. If he had not, we would have gone on our merry way with me continuing to chalk Kendall’s bad days up to a brewing UTI. The bugs growing in her urine are QUITE nasty (but not entirely unexpected). If we had let her body continue to get weaker from a presumed UTI, when in fact it was already fighting a bloodstream bug, and those UTI bugs leaked into her bloodstream….oy. I shudder at the thought. It would not have been a pretty picture. I am so beyond grateful to God for His constant protection over Kendall, even as I felt like He was leaving her hanging, leaving all of us on our own to fight another infection – it turns out that He had even MORE protection over her than I thought. you just never know sometimes – how even the darkest road you are on may be the very path you need to take to places beyond your imagination.

I hope and pray that all of you are having beautiful Thursdays.

We’ve been asked what do we need by so many of you wonderful friends and family – and honestly, I’m sure I could rattle off a list if I had enough time. But really, I am happy and blessed and content right at this very moment. I have a sleeping baby (FINALLYYYYYY!!!!!!), who is receiving her needed medications as she sleeps. I have a reese’s peanut butter cup cookie from the bakery downstairs. But most of all, I have HOPE again that she will get out of this cycle. Be her happy, pain-free, silly, strong beautiful self again. HOPE that we will be together again as a family by some point this weekend. It’s a good feeling, this hope. It covers an awful lot of wants/needs/desires. It does not mean that everything is fixed, or that we have solved all of our issues. But the warmth of the hope in my chest at this very moment – it is enough. Dayenu. (<—that links to a blog post i wrote almost exactly a year ago. It still holds true today. Maybe even more so. Go check it out again if you don’t remember it.)

I’m going to try to catch a few winks of sleep myself while Kendall is down for the count. She will want to go IV pole skateboarding later tonite (fun sport, you should try it sometime!), and I may try to go hunt down some non-moldy food in the cafeteria too. Thank you all for everything – the words of encouragement, the notes on facebook, the texts, the phone calls. I know I am so behind on responding to everyone and everything – but know that I read them all, and am encouraged and touched by every single one of them.

If things change tonite, i’ll try to do another update. As of right now, I have not heard of any growth past this mornings negative result, and I am hopeful that it will remain so. We will continue to work on tweaking the meds and the schedule tomorrow, and hopefully head back home sometime on Saturday or Sunday. Blessed be the name of the Lord.

Love you party people!

 

T-crest.

(and yes, the pictures are all random ones I’ve taken over the past couple weeks – nothing from in the hospital! my phone is currently full. I need to dump pics off of it in order to take more. anyone want to donate a 64gig iPhone to me?????? ;)  )

Home Sweet Home.

I just realized I forgot to update after the events of yesterday. mostly because i am absolutely wiped out – physically, emotionally, any other-aly you can be… Also because I am pretty sure my trusty keyboard on my laptop (ergo, my entire laptop) is trying to die and I literally type so fast that it takes 30 seconds for the words to catch up on the screen and then they are jumbly and it frustrates and saddens me so I avoid blogging. I don’t know what I’ll do if it fully dies on me because the only other working computer in this house is our 11 year old desktop that i think has a 500mb RAM. It’s actually kind of comical. Anyhoo. That’s part of the reason for the long blogging lapses. But mostly just because I’m tired.

 

Randomness aside – (yeah right – i’m the queen of random!) – we are home, Kendall is still on some IMG_4308 good strong bug killers via IV, and we found what we believe is the culprit. The lab was able to identify yeast growing in her urine – and while this may seem like a no-brainer, it actually is hard to identify. Even harder to kill. You may or may not recall that yeast is an archenemy around here. It is partly due to kendall’s uncooperative gut, partly due to her love of all things sugar, partly due to her crappy immune system. Whatever the cause – it’s now in her bladder and explains a lot of her pain and issues over the past couple weeks. For all we know, she had the yeast last week also – as the lab didn’t find it until we sent a separate culture specifically for yeast from her urine. Adding to the chaos is the fact that the doctor who discharged us so swiftly last week wrote the prescription wrong for our pharmacy. So instead of giving her a full 1300gm of the antibiotics every day, we were giving her half that. I about put a hole in a wall when I made THAT fun connection. While it’s fun to have something (or someone) else to blame, the bottom line is that Kendall has been sick for a while. She very likely had a UTI brewing even before surgery, and while i’d love to point fingers at what should or should not have been done, there’s really no point at the end of the day. She got sick, she is getting better, and I have learned some valuable lessons about how very important it is that I stay on top of everything and continue to be Kendall’s voice and advocate.

The very good news is that as we’ve finally been getting her infection under control, her pain levels have DRASTICALLY decreased. she still has quite a bit of pain, especially if she’s trying to be too active (i.e., if she gets up off the couch or out of bed for more than about five minutes) – but overall, she is returning to the sweet baboo we all know and love. I am SO glad to have her returning back to me, to all of us. I’ve had some tough conversations with her nurses (our daily and weekly ones, the ones who are like part of our family) – and we will likely be having some tough conversations with most of her doctors sooner than later. Things like her chronic pain control, her increasingly “complex” needs at home, how those needs affect the whole family. It’s not all doom and gloom – I just think that while Ben and I have done our darndest to keep moving forward as if life is totally normal and she is totally normal, it is wearing us all down. Because while it is OUR normal, it is definitely NOT normal. It is frustrating and often heartbreaking and it wears me out more often than not. I don’t know how or what to change, but I’m pretty sure something’s gotta give. I know some of you give me way too much credit. I’m not wonder woman, in spite of my attempts to prove otherwise. I’m far from it. My house is often very messy, I rarely cook healthy (or even unhealthy) meals for my family, I need FAR more exercise/schedule/routine/discipline in my life…should I go on? I think maybe sometimes too I avoid blogging about it because I don’t have anything but semi-depressive ramblings about how tired I am and how much I just want to whine about all the balls I keep juggled.

But that’s not who I am really am. I’m not a whiner. Ok I am a little bit. But It’s not a large part of who I am. I look around at so many of my online friends/inspirational mentors in the medical mom life, some of whom have lost their precious angels far too early from this earth – and I think – what the heck am I complaining for? I think unless you have experienced something like that, you may not get it. Every single time I want to break down crying that I’m up running IV antibiotics at midnight, or emptying my daughters urine from a bag into another container and hoping I don’t spill any on the carpet, or getting frustrated at the insane amount of preparation and work that goes into preparing her Iv nutrition/fluids/meds for the day – a voice stops me and says – “but at least she’s HERE for you to have to do this stuff for.” So so so true. How quickly I forget. How quick I am to take for granted this beautiful wonderful life that we have been given.

How IMG_4278 dare I sit around feeling sorry for myself instead of celebrating how very blessed we are? so I gotta do something to get myself out of this funk. I think last year at this time I was blogging about roughly the same thing. I feel like I’m a broken record of my own self – repeating my same goals and mantras and hopes for finally being organized/scheduled/ahead of my own life enough to stop and bake cookies for my children when they get off the bus from school. I don’t know how I’m going to actually make it happen, but this time i’m ready. I think i’m ready to document it here, in my little corner of the web. Good bad and ugly.

See what I mean about random? I don’t even remember what I started blogging about to make this roundabout connection….

anyways – I should wrap it up. I caught some crappy crud from the hospital and I have felt like a huge block of snot and pain all day. I should try to get in bed early and hope that I can sleep it off. We have FAR too busy of a week ahead this week. I have two different curriculum nights, the girls start dance again this week (GREATLY reduced schedule though so that’s nice! i’m not trying to become certifiable this year!), Kendall’s first day of school and all the uber-fun logistics of how that is going to happen… Karissa will be at Children’s in downtown Chicago all day Monday (possibly overnight depending on how she does) for a repeat MRI to check the growth on her spine, Ben is in Phoenix all week, I’m sure i’m missing about 8 other things that are all supposed to happen – oh yeah! I have to make the drive up and back from milwaukee in record time on thursday to be back for the curriculum night and dance….If you’d like to contribute to momma’s starbucks/gas/sanity fund let me know!!!! 😉

We’ll be ok. Somehow, things will all work out. They always do. Not always how you planned them to, but they DO work out. Somebody volunteer to bug me about all the crazy things I want to blog about this week (besides the actual details of how we manage to survive this upcoming week). Here’s a small sampling:

  • The cotton candy machine – in addition to the chocolate wonder-fall at Golden Corral.
  • Here Comes Honey-BooBoo. Yes I’m serious.
  • My Instagram Addiction.
  • First Day of School Pics.

Ok I think that about wraps it up. Because I’m in edit mode for my new blog template – can someone tell me if you can still see the facebook like page thing over on the right? If you cant – just go like the terra talking blog page please! Here’s the link : Be a Fan of Terra Talking! It will seriously make me all kinds of giddy. I’m planning another fun crazy random vlog to go along with reaching 350 fans on that page. And i’d LOVE to have 500 fans by Mito Awareness Week coming up in September! So spread the word, tell a friend. Thank you all for stopping by, checking on us, checking on Kendall, praying for our family, helping us out in the countless ways that you all do. I love hearing from you – even if I don’t always have a chance to respond right away. I read every single text, every email, every blog comment. Your offers last week to help get the school supplies, make lunches, do anything I needed – you reduced me to tears. I don’t even know sometimes HOW to direct the help offered into tangible (even untangible) things to do. We appreciate everything that is done, and everything that is thought about being done. Anyways – I’m about to get sappy. Know that you are all appreciated and loved by all of us! i pray that you have a fabulous weekend~

 

Terra

It’s been too long…

To do a really proper catch up. So i’ll just try to hit the current highlights for now and catch up later!

Let’s start with the easy ones first:IMG_3656

 

Kealey – doing fine and great – as usual! Really making huge strides in dance and school – when did she grow up so much? No worries on this one, thank God, because I don’t know what i’d do without her quiet calming strength.

Kaylen – also doing great! She’s been complaining of tummy pain more and more often these last few weeks, and even requesting enema’s at a few different times as they are the only thing to help relieve the pain and pressure (I know, strange, right?) – so she will have an appointment with the constipation clinic team up in milwaukee in a few weeks. We give her a lot of miralax and ex-lax already to try to keep things moving along, but hopefully they will have a little more insight for us about how to help her feel better. Preschool will be done in a few weeks and she is SO EXCITED for her birthday (in July – some of you may or may not have received your verbal invite to her pool party already? For IMG_3601 the record, we have a blow up pool that is not even put up yet, but whatevs) and then to start Kindergarten next August.

Karissa – *deep breath* – she’s karissa, what can i say? Had a “tie up the loose ends” appointment with her pediatrician last week due to her taking a leave of absence this summer, and the school breathing down my neck to get a letter to address some school concerns. Apparently when we saw the neurologist in February as part of the MRI followup for the tethered cord concern, he wrote this thing called a “summary letter” (note my heavy sarcasm here). Well the letter never made it to us – and everyone else assumed the other doc had spoken with us. Long story short, we are being highly encouraged to run the mito testing on karissa sooner than later, followup with a neuropsychologist for academic testing (to see if she has an actual learning disability or something along the lines of ADD/ADHD something like that), and we are supposed to followup with a neurosurgeon regarding the tumor that was found on her spine on the MRI. While I am glad that all of these things are taking place so that we can know for sure what is going on on all fronts, it was a lot to process last week. Dr. Natalie also ordered an abdominal x-ray for Karissa due to some “incontinence” issues picking up in frequency and intensity. Sure enough Karissa is full of sh poop and we have to start a “cleanout” on her. (Remember that old Saturday Nite Live skit called “super colon blow”? Yeah, that.) This should be all kinds of fun for everyone involved. I’m really looking forward to it, as is she I’m sure.  We did get the note for school (she is having a hypoglycemic type crash after lunch every day so she has to start having a protein based snack in between recess and their regular snack time).

What all the rest of it will mean I have no idea. The neuropsych testing should help point us in a direction as far as her school issues go (she will likely need to have an IEP put into place next year due to some strugglesIMG_3666 she is having academically) – but we will wait to see how that appointment goes before we do anything, especially since there’s only 3 weeks left of school! Hopefully the “cleanout” is successful and helps resolve some of her other issues. She is also seeing the urologist up in milwaukee when we are there for marathon appointment day in a couple weeks to see if they can help us come up with a better plan for the issues/pain she is having. We will likely have the mito testing labwork pulled at that time too. (We haven’t done it already because a. – it’s better when done under stress like a vomiting type of illness, and b. – i don’t trust any local labs farther than i can throw them. So now we will just have it done up at childrens – which karissa has thus far not had reason to be at, but will now. got it? good.)

And last but not least – Miss Kendall – oh where to begin trying to catch up with this one???

SUPER LONG story made very short – we have been dealing with what appears to be a “site infection” where her broviac (IV) line enters the skin on her chest. It has been very painful for her for the last two weeks, which got a teeny bit better when she started IV antibiotics last week. The culture of the pus that is leaking/oozing out around IMG_3644 the site grew MRSA (a resistant type of staph infection that we all probably carry around on our skin all the time, but until you have a deep open wound, you never know it). The ER that cultured it two weeks ago didn’t feel the need to let us know that it was growing (they determined it was a contaminant). However, given how symptomatic she was, the growing redness and hotness around the site, and the fact that you couldn’t even pretend like you were going to lift her shirt up to look at it without her flipping out all convinced her docs that we should probably treat it seriously (ya think?!?!?!? I mean, hey, it’s only got a DIRECT ZIP LINE into her heart/bloodstream. Sure, let’s go ahead and let that fester for a couple more weeks while we twiddle our thumbs. Great plan.)

And while we are very very very lucky that it was actually resistant to ONE drug that is an 8 hour dosing, it is still extremely tiring to do IV antibiotics at home. For the uninitiated, it requires about an hour of set up/prep work, time for the medicine to run in, and take off/cap. This is all good and fine for the 8 am and 4 pm dose, but man, that midnite dose is a doozy. And JUST when I could see the finish line in sight – her tpn nurse took a closer look at it and determined that it is not, in fact, getting any better. We had a very very very long day at Milwaukee last week doing a lot of testing to determine if there was a crack or leak in the line causing the oozing, going over her dressing protocol (the sterile stickers we have to put on her site to protect it every week), analyzing the site, having four other doctors and nurses analyze the site (she was a HUGE fan of that let me tell you), getting x-rays and fluoroscopy and labwork. Did i mention it was a very long day?

So now we will start one more week of antibiotics and then go back up to milwaukee next IMG_3669 Thursday for an outpatient surgery to have her line moved. Basically, you only have a finite amount of veins that are large enough to be used for “central access”. Once they have scarred over, they are unusable. Once you’re out, you’re out. Kendall has managed to keep this line in for almost 9 months, which is AWESOME in light of the cycling infections we were dealing with last spring. Up to this point, the surgeons have been unsuccessful in finding any access on her left side – we aren’t sure if the veins are just underdeveloped on that side and she might GROW into access, or if they are just unusable period. But right now, we have half the available number of spots left for her to have access. Of course the hope is that she grows out of her need to even have the access sooner than later – but right now, she needs this line. We need this spot. So her surgeon is going to go in and keep the main catheter in the same spot, but tunnel it back under her skin to come out at a different spot on her chest to give this infection time to heal. He is pretty confident that this will solve the immediate problem – but he is hesitant to do it until this current infection is cleared up. However, her line is sliding ever so slowly out of place, millimeter by millimeter. The “cuff” (a thicker part of the line that ideally has skin growing over it to anchor it in place in the chest wall tissue) is now at the entry site (pulling all the internal tissue it was connected to with it), compounding the problems of her irritated and infected skin. Once that pulls out, the rest could easily slide out, and we would risk being able to use this same vein. I’m considering ordering a pediatric strait jacket to keep her immobilized for the next 7 days.  (i’m only kidding.) (kind of)

Hopefully it is an outpatient procedure. It is scheduled as one right now, but her last two broviac placements have taken roughly 3 times longer than they do for the “average” patient, so i’m kind of in a toss up.Hopefully since this isn’t a full “hunt and find” mission it really will be the quick in and out they are supposed to be.

She has also been having a lot more issues with her bladder/ability to pee. I won’t get too into the details but i’ll say it’s definitely not normal, makes for a LOT of laundry, and leaves her dealing with a lot of pain. She has had this issue her whole life, but it’s definitely picked up in intensity over the past couple of months. Hopefully on marathon appointment day they can help come up with a better plan, cause watching her double over in pain and knowing the only way through that pain is more pain (catheterizing her) – well, between that and the fear of her broviac sliding out, i’m on track to become addicted to a controlled substance PDQ. There’s so much more that is actually going on – but the bottom line is that overall, she’s doing “good”. The average observer on the average day would not see all that she endures, would not notice that her binky is in her mouth because she is grinding her teeth in pain otherwise, would not see her holding her tummy under her jacket, would not see the meltdown crash that comes after she’s held it together on the rare outing to the store or park. And that’s good. I’m proud of my babies her strength and resilience. But every once in a while, i’d just really love to give her a break from it all. Be able to relieve her pain for a few hours.

Me and Ben – amazingly – have managed to have one whole month where neither of us got some crazy random injury. I know. Be proud. We’ve lost one cat, gained one dog (temporarily! we aren’t that crazy), and in general are just keepin’ on truckin’.

HOpefully i’ll be able to get more details/go back and tell more of the catchup story over the next few days. And i can’t believe I missed my own 5 year bloggiversary! I’ll definitely have to go back and celebrate that!

Thanks for comin back to check on us~

 

T-crest

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