roller coasters.

Roller coasters are supposed to be fun, right?

Well this one hasn’t so much been! IMG_5388

The roller coaster of “keeping up with kendall’s vital signs wonkiness” was a ride I got on last Friday, rode all week, rode EXTRA times on Friday/Saturday/Sunday morning, and by Sunday afternoon I just had to cry uncle and get off the crazy ride. Kendall’s “rough days” of last week unfortunately continued right on up through this past weekend, and in fact started to escalate by this past Friday morning.

There’s really not much that she does anymore that scares me, or even really makes me bat an eye at. Fevers that spike suddenly with rigors and retching – yeah I jump at that. But beyond that, she blessedly doesn’t pull too many rare stunts. Or if she does, I can usually attach a reason to it, make it make sense, talk it through with her doctors via phone/email, and off we go. So this past Friday as I laid on the floor of her room (because she was a hot whiney mess begging for me to sleep by her), and watched her monitors (because i could tell she wasn’t breathing super effectively and sounded very junky in her lungs), and realized that she was in the 180’s for her heartrate, WITH oxygen on (usually lowers her HR), AND asleep (numbers should be even lower) – I realized that I was a teensy bit scared. She didn’t have a fever, which would have explained these things. I called her doctor and he of the cavalier “kendall’s fine” attitude wanted to send an ambulance to get her from our local hospital upon hearing what we were dealing with. I didn’t quite have the sense that she was THAT bad off, but it was good to know that that was an option if she decided to go cliff-diving towards “oh crap-ville”.

Ben and i packed stuff up, hemmed and hawed, hooked her up to oxygen, dealt with the puking that started, IMG_5382watched her for a few more minutes, bolused some zofran and fluids into her, and saw her start to slowly come back around towards a safer state of breathing. We were both up and watching her all night, waiting for a fever or another spike in her HR to come and tell us it was time to head in, talking with the doctor in milwaukee to discuss options – but eventually things seemed to be somewhat settled down. Saturday was more watching, and more of her flirting with bad numbers, then easing back down just when we thought we would pull the trigger and leave. Bags remained packed, much pacing was done back and forth, we willed her cough to calm with extra nebulized meds/saline, extra oxygen, extra prayers, extra everything. Another fitful night of sleep. Sunday morning she woke up asking to go to “da hosta-bowl” (the hospital), and she actually FINALLY threw in an actual “fever” so at least we had some cause to go get things checked out. She had also started having some VERY wheezy/disturbing lung sounds that morning so, at least the decision was a little bit easier to head to Hotel LG vs the drive up to milwaukee.

For those that are confused by my seemingly random Hospital Bingo, Edwards is where I go if i think she has an infection but i’m not sure so we can pull cultures and observe her. Edwards is a good hospital, just not fully capable of dealing with all of Kendall’s idiosyncracies. LG (Lutheran General Childrens) is where Kendall was first brought actually four years ago next week where we started down the journey of figuring out what was “wrong” with her, where we met Dr. A (her guardian angel on earth), our second home for so long. It is about halfway between home and Milwaukee. If I even remotely suspect that she is having respiratory/lung function issues, which she does every once in a while when her meds need tweaked, we come here so Dr A can be the one who gets her breathing right again. He understands her metabolic disturbances that occur when she starts breathing funky, keeps her oxygen needs stabilized/addressed, plays the balancing game between the right amount of steroids and diuretics if she needs them, and in general is the reason Kendall is alive today. If it sounds like I worship the ground the man walks on, it’s because I do. LG is not a super comfortable hospital to be at. But if it is where HE is at, then when Kendall needs him, here is where we will be! And then there’s Milwaukee, our ace in the hole for everything else. So there IS a rhyme and reason to what I think through – it’s just that I don’t often take the time to spell out all 390 steps i’ve gone through in my brain to work out the algorithm of where i’m driving to.

anyways.IMG_5391

Kendall’s lungs acting up meant we drove to Lutheran. We were gotten back into an ER room rather quickly, had a very nice doctor who seemed to understand that even though kendall clinically looked ok-ish RIGHT THAT SECOND, that there were many other factors playing into my decision to bring her. After getting some labwork and an x-ray back, he called Dr. Aljadeff. I could hear his side of the conversation and it was slightly amusing to me:

“I have Kendal Atkinson here with such and such issues, here’s her lab numbers, initial read on x-ray is clear, should I send her home?”

pause.

“the mom? you want me to get her on the phone for you?" (incredulous tone)

“mom – ummm the doctor wants to talk to you”

Me on the phone sheepishly because instead of paging Dr. A’s service, i had a friend who i knew was inpatient and meeting with Dr A soon give him a hand delivered message to call my cell phone or meet us in the ER….

Dr A, in his thick Israeli accent: “So first of all, thank you very much for making the M family your personal receptionists…. (me turning red) ehhhh, what do you theenk should ve do…I ordered bed for her upstairs and told them to make your orr-dares (orders) my  orr-dares. So eeff mom tells them somm-theeng, that is the order they put in the computer. I need to see her myself in the morning. She needs to be here. Good job. Should ve order more labs? How eezz she doing to you?”

I could see the ER doc becoming more shocked by the second at the fact that Dr A was basically wanting the REAL history from me, not from what her labwork may or may not have reflected. He was a good doc, he just didn’t know us. Overall, it was hard being in a “newish” setting again, where they know Kendall at milwaukee, they don’t remember her here. But we finally made it up to the floor, even though I kind of thought we could have gone home with some steroids and better instructions for what to do to keep Kendall stable. From there it got kind of dicey.

we came up to the floor RIGHT at shift change, and within about three minutes of another admit. The charge nurse thought that the other admit was the only admit, and so we sat here, basically ignored for almsot an hour and a half. I was beyond starving by this point, Kendall ws overly tired, and i knew we still had SO MUCH to do. Histories and med lists and breathing treatments and ordering TPN or fluids for poor starving Kendall. I had all of that in the car for her, not thinking we were going to be so long having a decision get made. We finally got the show on the road at about 10 pm, kendall crashed, and i was not too long behind her.

Breathing treatments continued throughout the night, which normally Kendall would fight tooth and nail, but she was too tired to put up too much fuss. I anticipated that we would see Dr. A late morning, get a game plan, and be discharged to home by dinnertime. After chatting with him though, I did agree with his decision to keep Kendall for one more night for more of the same, having been reassured that whatever was going on in her lungs, it wasn’t as bad as it sounded like, and I wasn’t pushing more fluid into that lung space. (Kendall often “third-spaces” her extra fluids, of which we were running a LOT. Normally they go into her tissues in her face/arms/trunk area, but based on how junky/wet her cough was getting, i feared we were pushing them into her lung tissues, which is a very real possibility of happening.) Knowing that she wasn’t showing signs of pulmonary edema, and that she did not appear to have a bad pneumonia, I felt a lot more confident that we could manage the roller coaster ride at home again.

IMG_5400 Right up until a few minutes after Dr. A walked out of the room, and Kendall’s heart decided to take a mini-vacation. Or something. We (her awesome nurse and i) spent the majority of the day chasing Kendall’s super high heart-rates (well above 200 for large chunks of time – not good), and erratic sats. We finally just cranked the oxygen up, kept her on that, and did anything we could to keep her happy and immobile and not freaking out too badly. (Princess much??) Luckily, she felt so crappy that she really wasn’t making too many demands and didn’t really want to move a whole lot anyways. More fluids were ordered, more labs were drawn, meds were given to stabilize the heartrate, and we watched and waited. Finally late this afternoon she got herself back into a normal rhythm, started to calm down a bit more from a vitals standpoint, and everyone let out a nearly audible sigh of relief. Her nurse was so relieved that she went and raided the “treasure chest” for Kendall and brought back the Holy Grail of Kendall Happiness – a deluxe  play-doh factory. I thought that was going to be enough to set her heart off again but luckily she only got a little higher than we were happy with! I was relieved she felt good enough to play with that.

until she got her finger so contortedly stuck in the stupid thing that I nearly had to break her finger to get it out!

Never a dull moment around here I tell you.

Anyways – we should have some more labs pulled in the morning which, combined with the ones we are waiting for from today should give us a few more clues as to what we are dealing with. The working theory right now is that Kendall’s body just runs a VERY fine baseline, and dealing with a URI (possibly RSV, or possibly just a plain old rhinovirus cold!) and a likely UTI (cultures were still pending last i heard), got her too far off that baseline, and her body was just throwing wacky signals to try to find it’s sense of stability again. As odd as that may sound if you don’t know Kendall (or really any child with autonomic dysfunction/mito issues), it does make its own kind of sense. It’s not the amount of sense that I will feel SUPER comfortable taking back home, because we don’t have the easy access of the hospital to monitor the things we are monitoring here. But it would at least give me some confidence that we can continue getting her stable at home.

she will be having her GJ replaced tomorrow in IR while we are here. It is LONG overdue, and while noIMG_5402 one really thinks a crusty old GJ is the cause of anything we are dealing with now, it’s a “kill two birds with one stone” type of scenario, so they are squeezing her in. They apparently are nice here and let the kids be sedated to change their tubes out (milwaukee is of the “strap them down and GIT R DONE” type of mentality) – so that will add a few hours onto our schedule, but overall, I think we are looking at probable discharge tomorrow late afternoon/early evening. We have a few more loose ends to discuss with regard to what she’s looking like tomorrow. I can tell you I am not a fan AT ALL of how her numbers look tonight on the monitors.

I think in general I am just not a fan at all of this roller coaster she’s on and is dragging us all along with her on. Like i told Ben earlier tonight –

i know this kid like I know the back of my hand. I am not saying that to sound braggy at all. It is just, I guess, my one calling in life. Keeping Kendall alive and thriving with a minimum of medical interventions. I know when x happens that y needs adjusting, and if A is out of whack then B is the likely culprit. I dont know HOW i know this, sometimes I just know it. i am sure it is the working of the Holy Spirit via the prayers that so many of you lift up for us. Prayers are amazing and powerful – never doubt that. But right now, i am stumped. All of the “usual” fixes for her issues either aren’t working or aren’t relevant. Her body is throwing up red flags and I cannot figure out where the problem is. I know that God knows where the problem is, and at this point the only thing I really CAN do is pray that He reveals it to us, or just goes ahead and fixes it. Along with that, that He would restore in me a sense of PEACE about what is going on. Peace that I don’t have to fix everything or know everything her body is doing. Peace that she will be ok through this. Peace that if we are here in the hospital it is where we need to be, or if we need to transfer to milwaukee, that is where we need to be, or if we are allowed to come home – it is the right place to be. That her body would find peace from whatever crazy war it’s trying to wage right now.

If it seems like this is a non-sequitur (that we are worried only about vital signs, and my fear seems to be unwarranted by that), it is probably because there are LARGE chunks of information that are missing. i wish i knew what all those chunks are. I am rarely “worried” or “scared” by things Kendall does, like I said in the beginning. And even now, I refuse to give in to the “fear” of the unknown.

“we were not given a spirit of fear, but of power, love and self-control”. 2 Timothy 1:7

Praying for answers to be revealed by the dawn’s early light.

kendall WILL BE ok. She is in very capable hands here. Please don’t feel like i’m being overly dramatic here. She is ok – and she will continue to be so. i am just concerned from a place of not knowing the WHY behind what she is doing. I don’t like things that don’t make sense to me, not because it means they are bad, but because it means I feel out of control. I do realize that sometimes, it is not FOR ME to be in control. that is all i’m trying to say. It’s far more of an internal struggle that i’m dealing with!

So please don’t worry – but we do appreciate each and every prayer that is said for Kendall. And our family. And the whole situation.

Hopefully this is just like that last crazy drop on a roller coaster right before you pull back into the station, and go “I wanna ride it AGAIN!!!”

Thank you, as always, for stopping by to check on us.

Have a beautiful Monday night/Tuesday morning!

 

love –

terra.

Merry ChristmaNewDisentines

So…..

It’s been a grip of time since I’ve updated so why not cram a few weeks/holiday updates into one, shall we?

IMG_5163 (Hence the title: Christmas, New Years, Disney and because it’s going to take me a few days to get this one written, we may as well throw Valentine’s in there too!)

I will not be able to do Christmas justice this far after the fact.

It was a good Christmas. (I’m saying that in my best “wind in his hair” accent. Except it’s not from Dances with Wolves, its the old Indian dude Staab from Legends of the Fall. This is why i shouldn’t blog after a bowl of Cherry Berry. Only my husband will understand what i am saying and he will do his little smirk which is about as much emotion as he shows, even though he does think I am hilarious. most of the time.)

ANYWAYS….

where was I?

Christmas. Good. See, I knew ahead of time that their big gift was going to be our family trip to Disney, so it made me very reluctant to get a lot of “real” (wrappable) presents. (Well, that plus a distinct lack of fundage to buy tons of presents. Splitting hairs.) BUT – I wanted to get them stuff FOR the trip as part of their gifts, except that their Christmas wish lists didn’t include “new underwear” and “car trip boredom busters”. It’s not a super huge deal, but I wanted them to get at least one of their Santa list gifts, even though I knew that a trip to Disney (and a whole extra week off school) was plenty gift in and of itself. We were extremely blessed by an agency that we work with for Kendall’s nursing as well as some amazingly generous friends who both helped ensure that some of the financial burden of providing a good Christmas was relieved. Ben has done an amazing job of utilizing some of his travel points to provide the hotel room for our two nights at Disney, a flight for Kendall and I, and we have been saving our pennies up to pay for the gas for the rest of the family to drive down to Florida. Christmas would not have been as Christmasy if it were not for our Christmas angels. Thank you is so inadequate – to all of you who have helped our family out on our journey over the past couple years. You all know who you are. I would fall short if i even tried to begin listing you out by name. I pray that God blesses all of you in the way you have blessed us. Anyways – Christmas rocked.

We were all so excited that we got to share Christmas with “sissy Christine” – a beautiful young lady that Ben and I first met when we lived in Washington and worked at our church in the Awana program. It is hard to believe that she has been like a daughter to us for almost 12 years now! And now she’s a momma herself! She and Baby Sophia came to spend a few weeks with us, and we had so much fun getting ready for the holidays with her! She is getting ready to leave and it is making me sad! It has been an adjustment having a 4 month old baby in the house again – but oh so fun! We are going to miss them so much!

And then Kendall had to go and get stuck in the hospital on December 30 (she had spiked a lowish gradeIMG_5191 fever that i would have likely let go, except we leave for disney in a week and i couldn’t risk that she would pull the stunt she pulled last time she had a lowish fever and needed an ambulance ride within a few hours!) So we trekked up to milwaukee, had a nice little 24 hour long visit (they wanted it to be much longer, but a. i needed to get home to pack and be with my family, and b. you DO NOT want to start the year out by owing your entire out of pocket copay in the first few days!) She’s getting tanked up on IV antibiotics and IV antifungals so we can hopefully “optimize her health” for her quality of life on the trip. In english, this means that we are treating a UTI that we normally would choose to not treat so that her typical UTI symptoms including bad pain, increased spasms, lethargy and nausea will be held at bay so she can enjoy next week’s magic to the fullest of her abilities!

So now we pack and prepare and hope we have everything we need for Atkinson General Hospital to hit the road!

A little bit about our plans:

Ben and the big three girls will all leave early Saturday morning to start driving to Florida. They will have most of Kendall’s medical equipment/supplies, all of our luggage, etc. Then on Sunday morning, Kendall and I will head to the airport to hopefully navigate the TSA nightmare with all of her fluids/pumps/medications that we will need for the day. Trying to pare this down to the bare minimum while making responsible decisions about any “emergencies” that may or may not arise has been a challenge. I think we have the letters of medical necessity/medical care plans/other paperwork all set, her emergency supplies, her daily supplies, her crayons/playdoh/minnie doll/glass slippers…

Ben will stop in Atlanta on Saturday night (because he likes to make it a direct straight 24 hour drive but his dad told him he BETTER stop and take two days to drive down or he would not be buying Disney tickets! Thank you Poppa Bob!!) and then meeting Kendall and I at the Orlando airport to pick us up on sunday afternoon. We will be staying at an off-site Hilton property that “has a view” of Disney’s Magic Kingdom on Sunday, Monday and Tuesday nights – going to the park on Monday and Tuesday. We debated about which parks to try to hit – but in the end decided that for our first trip, and not knowing how Kendall will do with the “overload” of it all, that we would probably get the most bang for our buck by hitting Magic Kingdom for  both days. I mean, Pirates is there, and that’s really all that matters, right? 😉

Just kidding. I honestly don’t even think the girls know there are actual RIDES there besides the teacups (because they see those in the disney commercials). I think they will all get enough enjoyment out of the activities at MK, and for Kendall, she just really really really wants to meet the Princesses. And Minnie. And Mickey. And Goofy. And Daisy. And….And…And… The parades with the characters will hopefully satisfy the “meeting everybody” requirement. I know they are going to love the trip no matter WHAt happens or who we meet or what rides we manage to make it on. They have no expectations so they will be easy to meet/exceed. It will be magical and awesome and I feel like I want to take nonstop videos and pictures to try to capture the absolute wonderment of it all in their eyes. i hope to be able to do it justice in the retelling.  I’ll likely be putting most of it on the Terra Talking FB page and tweeting a lot of little moments. (My tweeter is up on the side on the left if you aren’t on twitter regularly.)

On Wednesday morning we will be driving a few hours south back down to Ft. Myers to spend a couple days with Ben’s family enjoying the pool and beaches, and then Kendall and I fly back home on Friday, with the rest of the family following behind in the car. It was a rather impromptu trip, but will be oh so welcomed! The girls are very happy to be missing a whole extra week of school, and I am so glad that it is for a GOOD reason! They deserve the magic of this trip just as much as Kendall does for all she endures and has fought through the past couple months especially.

So now to finish the last minute packing, making sure all the stuff to fly with kendall’s stuff is in order, putting batteries in cameras, gathering up crayons and markers for the car trip. In the words of a character from my favorite book/movie (the Shawshank Redemption) “I find I’m so excited I can hardly hold a thought in my head. I hope the Pacific Ocean is as blue as it has been in my dreams  (that Disney is as magical as it is in my dreams). I hope…. I hope.”

Thank you to everyone who is or has been a part of us being able to mobilize and move out, getting TO Disney, helping with suggestions or advice on how to fully take advantage of our two days, EVERYTHING. Thank you Thank you Thank you to so many people.

I better get off of here for now and go actually finish packing or it will never get done!

I’m sure I’ll blog one more time at least before we go. So much I want to say and not enough time to sit and type it all out!

Have a super sparkly day everybody!

 

Terra

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

Turning the Corner.

I can’t even think of a title for this post cause it’s probably gonna spill out as just random thoughts that are not coherent in any way – but are just little snippets of what is bouncing around in my currently somewhat ADD like brain.

I have to make a list so I remember what I wanted to talk about because I keep getting distracted by shiny objects and people talking at me….

Kaylen’s recovery.

i want to sew something.

photography challenge.

drawings of the casket truck incident. or possibly when i tripped onstage at the national spelling bee.

other blog changes.

 

So – ok – 9 hours later…

I might have enough time to just update on Kaylen!

When we left off last she was still in the hospital, having a really rough time K3hospital breathing, and we were getting pretty much NOWHERE with the doctor who came on Friday nite. They were letting Kaylen sit at an extremely low oxygen sat number, and our nurse tech and nurse were both getting very agitated at the doctor for us! I asked them to please start a steroid – either in her IV or nebulized – and they said she shouldn’t need steroids this far past surgery, so they would just give her oxygen. I was ok with this, assuming we would cram her full of good stuff Friday nite and bust outta there early Saturday morning. Not so much. Saturday morning the doctor tells me that because kaylen was on oxygen the nite before, they couldn’t discharge her. She had to have 24 hours O2 free before she could go home. Oh i hit the wall right then. It was about the fourth time that i had heard this doctor talking out of both sides of her mouth and STILL not giving me any real answers, so we came up with a “compromise” whereby they would give kaylen a nebulized steroid, and then she would take a nap, and if her sats stayed up during naptime, she could go home. Awesome. Just give me a target to hit, and i’ll hit it. Since they didn’t clearly define what “up” or “nap” meant – I took that to mean that if she laid still in bed for about 30 minutes and didn’t immediately drop to the low 80’s that we were good to go. As soon as she DID start to drop, I woke her up and told the nurse we were ready to go! It was STRONGLY ENCOURAGED that we get an appointment for first thing monday morning with our pediatrician – which is kind of like saying we should get an appointment with the president first thing monday morning – it just ain’t gonna happen.

BUT – in an awesome twist of circumstances that only God could work together – our nurse tech happened to be one of Dr. natalie’s former employees. Who knew us. Who knew that if i was worried, something was wrong. And she went and faxed the office right then and there. And when I called Monday morning, they had an appt at a very easy to attain time. So in we schlepped. Where Dr. Natalie was properly horrified at a.) how crappy kaylen was still breathing, and b.) the very wrong info they were giving us in the hospital regarding what was “normal” or “ok” for kaylen to be feeling after the surgery. She sent us for an immediate chest x-ray, gave kaylen oral steroids right there in the office and called in scripts for more steroids (kaylen + ‘roids = UGGGHHHHHH), more antibiotics, more nebulized meds, and threatened re-hospitalization. She told me the only reason she wasn’t sending us right over to HER hospital was because she knew that if any mom could handle pneumonia of this level at home, it would be me. “Handling it” meaning being utterly exhausted from the every 4 hours med schedule, plus the breakthrough “cough up your spleen” fits, plus the care the other one still needs! But yes – I am glad we could handle it at home, even though i was a little nervous that we would be on the losing side of that battle to stay home.

I am happy to say that I think we are FINALLY making the turn for the better around here. She went back to preschool today, came home and took a 2.5 hour nap, so I thought we’d see how dance would go (she was BEGGING to go!) It was obviously a little much as she is definitely looking like she got hit by a mack truck. But tomorrow we have a pretty light day and she can get some more good rest in. Kendall will hopefully wake up back to her “normal baseline” as she is starting in with some wonkiness that could go either way at this point. but hopefully it’s just one of those off weeks and she settles it all back down soon. Karissa is also having a very off week with some pain, exhaustion, general moodiness and deciding that the main portion of her dietary intake will be those pediasure “sidekick” drinks.  Just another regular week around here! Ben’s been in PA all week, but I am assuming that healing in the kitty war wound is continuing along swimmingly.

And now that it has literally taken me ALL DAY to write this drivel, I’ll wrap it up.

And hopefully get to the other shiny objects tomorrow!

thank you SO MUCH to all of you who have made donations to the Hope for Kendall benefit – I just want to give you all such a big hug!!

 

love –

 

terra.

How to {Not} Give a Cat a Bath.

You may be thinking to yourself – hmmm – my kitty really needs a bath right about now. And so you are searching on google for “how to give a cat a bath”. I hope this post helps you!

Here is how our cat bath went the other day – complete with illustrations!

IMG_3295 Please pay particular attention to my “sneeze” detail with the green ink, and the Buzz Lightyear helping hold down the wayward corner.

So Ben gets this great idea last weekend from a facebook post that if you wash  the cats in fabric softener, it takes away the proteins of their dander and you are therefore not as allergic to them. and yes, we are all allergic to cats. No it hasn’t stopped us from having them as pets. That is what Claritin is for. anyways – back to the bath. I am not quite sure how Ben thinks we will convince the cats that getting bathed in a slimy coat of fabric softener will be fun in ANY way, but hey – you gotta have a little adventure in your marriage every now and then, right?

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EXACTLY.

 

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Meet the victims kitties.  Tin-Tin who is a pretty laid back cat, Tiberias who has already lost a tooth because he tends to go so flipping wild in “undesirable” situations, and TeaBiscuit, our 8 year old cat who has been through it all. (yes all of our pets names start with T. I have no idea why. It has just been thusly since day 1 of our marriage.)

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this picture came out kind of fuzzy. Let me explain. The size of this piece of paper is pretty much a true life replica of the size of the bathroom. Have you seen the movie “Elf” where buddy is trying to take a shower? Yeah – that’s this bathroom. So Ben and I are packed in there like sardines trying to pin the kitties into the water and they are HOWLING kitty profanities at us.

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The aftermath 3.8 seconds later. Serious horror flick scene with blood everywhere, soaking wet skinny little kitty bodies hanging off of body parts, lots of screaming and meowing and general chaos.

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Post Bath Time Kitty Status: They are pissed.

IMG_3301 TeaBiscuit escaped the torture and was quite proud of himself.

 

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more aftermath.

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And unfortunately that wasn’t the end.

 

Ben is currently sitting in the hospital hooked up to IV’s of antibiotics in an attempt to fight off the infection he got in his hand  – and my arm STILL hurts like a mo-fo where the cat was latched onto it like some kind of crazy furry Lady-Gaga inspired kitty bracelet.

he will probably be in through tomorrow, and be discharged just in time to drive up to the OTHER hospital where Kaylen will be having her surgery to have her tonsils and adenoids removed. and hopefully this stomach bug I’ve managed to pick up will be gone by then because the thought of trying to nurse the two of them while puking my brains out is really just more than I can take at the moment.

And for those of you keeping score at home – here’s the leaderboard of Health Issues at our house:

Ben – cellulitis infection due to cat bite, admitted to hospital for IV treatment

Terra – cold, puking, sore, throbbing arm from cat bite being treated at home

Kealey – HEALTHY!

Karissa – headwound at recess last week seems to be recovering, still has spine on tumor and other assorted “issues” but is functional enough!

Kaylen – surgery tomorrow morning to have tonsils and adenoids removed so we all hopefully sleep a lot better

Kendall – (i’m whispering this so her body doesnt hear me and decide to rebel) – healthy as can be expected!

 

2/6 ain’t bad.

 

sorry i’m not so funny today. Hopefully tomorrow is a better day. Well, surgery is never fun. But it IS ben’s birthday so hopefully we find a way to have a family celebration of some sort all together.

 

Thanks for checking in on us.

 

terra.

When things work out.

Alternatively titled “Just in case you thought you were going to complain about being in the hospital again, your air conditioner will also concurrently bite the dust, and you will be grateful for the air conditioning your baby can receive in the hospital.”

But that wouldn’t fit in the title box.

So anyways – Kendall’s back in the Big House. She’s been doing a few of her little “off” things since last week, but nothing that her nurses or I could put our finger on. So we made it through Showcase (the girls’ dance exhibition for four straight nites) with no major medical issues. Then Monday morning we go to change her dressing like usual, and she FLIPS out. Like the three of us all needed a drink after we finally got things calmed down kind of flip out. As we took off her dressing, her arm instantly puffed up about two inches, and the screaming started. Her TPN nurse said we should not run anything else into the line until we could figure out what was going on with it, we started making calls to milwaukee and the nursing agency supervisors trying to figure out what to do, and eventually came up with the plan to bump her feeds up as much as could into her J-tube, and get a line study done Tuesday morning since we would already be up here for a regular appointment.

So Tuesday morning we wake up and I start the crazy run around getting stuff packed for the day, getting Kaylen ready to go to her friends birthday party, making sure we have snacks and all that kind of stuff – and I realize its kinda hot. Sure enough, the air con had stopped working again and it was already 80 degrees in the house. Which doesn’t seem that warm until you add in the like 200% humidity we have been dealing with, and then its kinda like sitting in a sauna at the gym. *sigh*  So I called Ben who was in Pittsburgh for the week, he calls Mike, the most awesome friend/HVAC person anyone could ever ask for, and we hit the road. Where, about ten minutes into the trip, the CAR air con goes out. And by “goes out” I don’t just mean “lack of cold air”. I mean the sensor goes wacky and it thinks it has to HEAT THE CAR UP to 74 degrees or whatever is on the dial. EVEN IF I TURN THE WHOLE THING OFF. It seriously needs an old priest and a young priest and a silver bottle of holy water. Imagine driving in the hot sticky weather and holding a blow dryer against you the whole time. That’s kind of what the three hour trip up was like. Luckily the hot air only blows in the front, so Kendall was warm and flushed and starting to show signs of wear and tear (breathing hard) by the time we got up here, but she was mostly ok. (and for the record, the air con thing comes and goes in the car. It could be fine for two weeks, and then not work for one, but then randomly come back on – seriously possessed.)

My original plan had been to have the girls just come with me since it was going to be a quick line study and then just one appointment, but we stopped at my aunt’s house so Karissa could pee and we could get cooled off a little bit. She offered to call my cousins and have the kids come over to play, which just lit up the girls’ faces, so thankfully that worked out. I am sure they had FAR more fun there than they would have if they had been with me.

The line study actually went well, they saw no obvious holes or reasons why her arm would go stay-puft marshmallow man on us. (which, of course, I rolled my eyes at. Pushing a few cc’s of contrast into her arm slowly is FAR different than running her TPN, which chugs along at 3 ounces an hour. Plus its very irritating to the tissue vs the contrasty saline. Basically, it was like comparing apples to steaks. I was glad they saw nothing obvious, but none of the rest of her team nor myself felt like it was compelling enough to say for sure what was going on.) The fact of the matter is that this line is 15 weeks old, which, in itself is a small miracle. We have successfully treated through two infections in it, TPA’d (clot busted) it once, had it re-sewn into place, had it checked for placement twice, and have really never been able to use one of the lumens (it has two). It just seems like at some point, enough has got to be enough. It’s a lot to ask of that vein to hold up through the near constant coursing through of her TPN, antibiotics, extra fluids…And most picc’s aren’t designed to withstand that kind of long term use. (yes some do, and i know some last super long with zero problems – but that is obviously not what we were dealing with here.)  If someone had been able to tell me unequivocally that turning on her TPN would be 100% ok and we wouldn’t just dump 40 ounces of tissue-burning fluid into her arm muscle, I’d have been fine with the whole thing. But no one could say that.

Our appointment with Genetics went about like I expected. Kendall’s latest round of testing came back “abnormal but not diagnostic”, which isn’t surprising since the stuff they were testing for is all completely random and doesn’t cover everything Kendall deals with. Her second muscle biopsy did come back confirming “mitochondrial myopathy, not genetically diagnostic” meaning that while something is effed up in her mitochondria, we still don’t know where or HOW they are messed up. Considering they have less than 15% (I think – I get the stats confused sometimes) of the mitochondrial genes mapped/known/discovered, this isn’t a huge surprise to anyone. They actually do have a couple more directions to go based on how this testing came back, and both of them actually KIND OF make sense – except that both of them combined still don’t really explain ALL of Kendall, and both of them combined also fall under “crap that happens to you when your mitochondria don’t work” (dysautonomia of non-Jewish origin, and ataxic migraine syndrome something or other).  We aren’t moving forward with testing for either of those right at this moment mostly because the tests are still VERY new for them, and because neither of them would guarantee that any other treatment would help. So for now we just stick with “mito of uncategorized origin” as her “diagnosis”. Could have told you all of this WITHOUT having to sit down with the geneticist for two hours.

About the only thing worth mentioning that came out of this appointment was that the doctor was NOT happy with the 101.8 fever Kendall had while we were in there, nor the fact that she had been off TPN/fluids for over 24 hours at that point and wasn’t tolerating the J-feeds of sugary pedialyte we were replacing with. So he and our complex care nurse (who is at all of our appointments) went out to “conference” about the plan and came back in to tell me we had to head over to the ER for labs and cultures “just to be safe”. And that if the labs came back ok “we might be able to head home later that nite”. Which, as I came to later find out, was complete BS. They actually had called the ER and instructed them to admit us. But i think they knew if they said that I would have fought them tooth and nail, and possibly ended up not taking her. Which is probably only half true. I wasn’t confident that we were dealing with just a benign fever from being hot and cranky, and with all the line problems, I figured it was probably worth it to at least draw labs/cultures. So off to the ER we trucked, me still blithely thinking we’d be out of there in time to get a late dinner and be home in our own beds that nite.

After a couple hours in the ER when I asked the doc if they had labs back yet so we could start discharge, she actually laughed at me and said, they didn’t tell you they admitted you guys??? we’re working on a bed right now! Oh i was so ticked. But I did realize that it was probably the best decision, as by then Kendall was looking even punier, and within about fifteen minutes of that conversation, we got to see her metabolic crappiness at its finest. She had been getting a normal saline bolus because its the easiest to shovel in fast AND add antibiotics to. As her labs came back showing she was pretty hypoglycemic, they came in to hang D5, did another dexy (blood sugar check) and she was trending lower, so they ordered D10, and then she started kind of zoning out on us so they had to hand push dextrose boluses and call for the D10 STAT. Fun times. She remained mostly stable that whole time, and i think my own blood sugar was probably bottoming out by then (I’d only had a few bites of pasta salad and a coffee all day and this was about 9 pm) but either way – I never got freaked out. They got us up to our room shortly after all of this happened, and we once again had our awesome “room-coming” to our home away from home, complete with pretty pink blankets for Kendall, extra toothpaste for me, a bag full of little goodies for Kendall- just the kind of warm touches that our nurses always give us! Since I was not prepared in the LEAST to stay the nite (I had, as a superstitious precaution, put a tank top and a pair of underwear in a bag that i had left in the car, which was locked up into valet for the nite!) – I FINALLYYYYYY got a pair of hospital scrubs!!! And a cute little bathrobe that adds that “did she just walk out of the mental hospital” flair to any outfit. i love it. I want to wear it all the time. It goes well with my shoes that had broken completely the nite before in the ER and that I had used a whole roll of medical tape to stick back together, and was wearing my taped up shoes with the grippy socks you get from the hospital…so hot. And dangerous. I definitely looked and felt like P.Diddy.

ANYWHOO. We settled in for the nite, and I knew that if I got shaken awake in a few hours, we were in trouble, but that if we made it to the morning, I was probably right in saying she was just super dehydrated. We made it to morning. She actually behaved all nite, no crazy stunts, and my awesome dad was able to leave work after a meeting to come up here to relieve me so I could go gather up all my babies and get us all back in the same state (well, except for the sick one…)  I got the big girls from my cousin, grabbed some food for myself finally, drove home as fast I could, stopping at the mall to get the director’s present for the big dance banquet that nite (I was in charge of the gift for Karissa’s team and of course what I needed to get was only at ONE STORE, but luckily it was on our way home). I just LOVE feeling like my life is an episode of “amazing race” and I’m constantly running (driving) from one location to the next trying to beat the clock. So we made it to my friends house to pick up Kaylen who clung to me like a baby monkey and just started sobbing. My kids break my heart sometimes. I can’t imagine how she must have felt, and and I know my friend did a GREAT job being a mommy to her and shielding her from the fact that Kendall was in the hospital again and instead turning the nite into a “fun sleepover” for her friends birthday, but oh my babies…all of them. It is so heartwrenching feeling torn between caring for the one who cannot be her own voice, laying pale and puny in the hospital crib, and feeling like my others babies must feel like I have abandoned them, favoring the one over them. And Ben in a whole other state…stab me. I just hate it. It never gets easier.

But – its been a good long run this summer of being together. Very few appointments for Kendall, and therapy mostly crammed into one day. And even now, as we still have clear cultures, and she isn’t “sick” – we’re still doing good. Waiting on a decision to be made yesterday with regard to her line status was definitely an exercise in FUBAR – I think at one point I counted five different plans that were on the table, changed, put back on the table, changed….In the end, we decided that doing an aggressive (understatement of the year) wean off of TPN right now (as in no more TPN, no more lines for hydration), while that would be everyone’s wish and hope, was not feasible. Since she is currently inpatient due to “dehydration with metabolic decompensation”, and that was just 24 hours off of TPN, logic would dictate that we probably wouldn’t get very far in a “TPN weaning trial”. Probably like the IL border. As in an hour away! So then the thought was back and forth between another PICC which would have to be threaded in through her right side (harder to do but not impossible) in order to give the vessels on this side a break, and because we aren’t positive that this vein is holding up real well anyways. In the end, I think one of her docs flipped a coin and it landed on the “broviac” side. Surgery then got involved and the discussions involved placing a line in a kid who STILL had a fever and was on three meds to treat a possible line infection (even though no one really thought she was infected). So we compromised, stopped the antibiotics, and put her on the OR schedule for Saturday morning.

which will mean a LONG day today of just sitting here, but we are doing good things still. I just had a good long talk with her dietician about goals and starting to wean her off of the TPN support, and am excited that we are FINALLY starting to make forward progress towards pushing her gut farther and harder. We are getting an actual fluid protocol put into place for the days when she just needs that little extra boost (to hopefully AVOID situations like this!!!) We are restarting some meds that have been stopped for various reasons, and addressing with an AWESOME attending (main) doctor some of the frustrations we have had regarding the continuum of care from the upper levels here. The big girls are with their wonderful Memaw and Poppa and are, I believe, on their way to a jellybean factory right now (my dad is trying to time the height of the sugar rush for the precise moment Ben should be getting them). Ben is on a flight home right now, and in a few hours we should all be together for a little bit. I think our air conditioner parts have been ordered so our house will soon be cooled off from its current high of 90 back to a more reasonable/breathable temp of ….well – whatever it is – it will be better than what it is right now!

And then HOPEFULLY if little missy behaves, we’ll be home together as a family tomorrow nite, in our cooled off house!

(but i’ll still probably be wearing my hospital bathrobe).

 

thanks for checking on us.

 

terra

(or you can address me by my new hip-hop name, T-cup).

The Revolving Door.

There really is a big revolving door downstairs at the main entrance of the hospital. I don’t find it ironic or funny that they put one in the hospital side and not the clinic side. And while I am not THAT superstitious – it is the door I used yesterday to come in here with Kendall to get to the ER.

For those who don’t know what’s going on via Facebook updates – Kendall is back inpatient at CHW. Again. With a line infection. Again. At least she switched it up a little this time and is NOT growing Candida (yeast) – but some questionable morphication (i made that word up) of Gram negative shapes. (They identify bugs by their shapes – rods, bacilli, etc). She is growing something that is Gram Negative (negative does equal bad in this case) – and they can’t figure out if its a rod or a bacilli. It seems like a lot of unnecessary quibbling over details to me – but I am sure its important on some level so we can get her on the right meds. Right now we are just throwing a whole lot of general coverage antibiotics at it – which does seem to be helping her feel pretty good – but we can’t go home on the right meds till they know what the right meds are.

So how did we end up here?

Not by choice – I can assure you of that much! I was JUST about to sit down and do my weekly update to our team of nurses up here in milwaukee when the phone rang with CHW’s number. I answered it to a very terse nurse “K” telling me we needed to come immediately to the ER because Kendall’s culture was positive. It took me a minute to even remember what she was talking about because while we had indeed pulled a culture on Monday – it was more just as a “placeholder” so we could evaluate her PICC site. Let me back up a little cause I’m getting myself confused here…

So Monday, we did our usual dressing change/TPN labs with our nurse, and then we all packed up in the car to head to Dr. Natalie’s for Kendall’s 30 month well child check up. (I honestly do not even know why I scheduled this appointment – but I apparently did, so we went.) As we go to get Kendall out of the car at the office, she begins screaming bloody murder. Like seriously people are poking their heads out of the office building next door and from across the parking lot staring at us because of the insane shrieking of Kendall. Her nurse is trying to figure out what’s wrong, the purple Ni-Ni (don’t even get me started on the preciousness of the purple Ni-Ni binkie that cannot ever leave her sight) rolls smack under the middle of the biggest old boat of a cadillac you can imagine, and Kaylen starts in with the asking for a snack (???? It’s nonstop with that one, I tell ya!) I am able to get on the ground and shove my upper half under the car and reach with a movie case to scoot the ni-ni towards me, the nurse calms Kendall down, and in we all parade. Every time we try to get near Kendall’s arm though, the shrieking starts back up.

After going through my “list of family issues” with Dr. Natalie (since Kendall is so well managed, I just hit on some things for the other girls – she’s a great doctor like that!) – she went to check out Kendall’s arm, and thought it should be evaluated at a hospital where they have PICC experience in peds. It was red and puffy-ish, and its just completely unlike Kendall to be in THAT much pain for that long of a time. So they sent us off packing to Edwards. Ben was able to leave his office and come get Kaylen who by that time was a complete beast – so that was a huge help. We had more than enough chaos between “E” (nurse) and me dealing with Kendall! We had to check into their day-stay unit for peds where they proceeded to evaluate her arm/site, and then pulled labwork (a CBC and blood culture). I am still not sure why they chose to do the may25b culture – it wasn’t something we discussed with Dr. Natalie and I don’t think anyone thought we were dealing with a line infection. however, the nurse doing the labwork proceeded to not pull a waste vial (you are supposed to “waste”/throw away a few cc’s of blood when you are pulling bloodwork because it could be full of whatever has been pumped in recently), did not have the culture bottles set up right where she was pulling the labs, and in general just lacked a sense of sterility about the whole thing. I watched her traipse up and down the hallway holding Kendall’s syringe of blood for a good five minutes before she finally found the culture bottles and sent them off. The eventual conclusion was that Kendall’s new dressing was on just a little too tight, and was pulling the tip of the plastic end of her PICC line up into her entry site/vein, causing the massive amounts of pain. we were able to manually move it around slightly/kind of loosen the dressing, and she seemed mostly resolved. But the bloodwork seemed like it might come back to haunt us~

I even commented to our nurse on the way home “I’ll actually be shocked if we DON’T get a call that that’s positive with all that she exposed that sample to!”

Oh how quickly I forget my own words…

So back to Tuesday morning then – when K said we needed to come up, I immediately went into arguing mode and tried my hardest to convince her that it was a contaminated sample and couldn’t we pull new cultures from home and THEN see if they still grew. She was not amused in the least and said “the doctor still wants her up here”. I was like – is he listening in??? How do you know that if you havent’ gotten off the phone and given him this plethora of helpful info I have just presented to you?!?!?!? GRRRR. I got nowhere with her. so I called two other people to plead my case to about staying home Or even going local again and THEN seeing what happened after repeat CLEAN cultures were drawn. No one bought it. Her culture from Monday was growing both gram negative AND gram positive shapes, and the gram negative ones almost always indicate true infection (gram positive alone can sometimes be surface contaminant and not true indicators of infection). I actually got my own argument turned back on me when our complex care nurse pointed out to me “you just can’t always go by how Kendall is acting how sick she actually might be. We really need to evaluate her up here in order to be sure we are doing the right thing”.  {Insert me hanging up the phone and swearing here}. TWO YEARS I have been preaching this to them – and TODAY is the day they are going to start listening to that????? Of course…

Knowing she was probably right, I began packing up and making frantic phonemay25a calls to people to try to arrange for the other three. I knew it would be rough on the older two cause they HATE coming home from school to a huge change of plans/me and Kendall gone/no way of knowing when we might be back. Especially when they left a very happy and playful Kendall that morning. No warning whatsoever. I hate that for them. I can’t imagine how I would have handled it being 9 or 6 and having my mommy disappear on a moment’s notice multiple times a year…it breaks my heart to think about how strong they are to hold up to this so many times. Our awesome nurse stepped up to help out with K3, Ben made a bunch of phone calls and got his flights changed to be able to turn right around in Minnesota and come back last nite instead of Today, and my awesome friend/second mommy to the girls arranged her entire day to be able to pick up the girls from school and get them to dance and in general be goofy and make them laugh till they forgot to be upset that we were gone.

Of course we get to the Er and here I am with a singing playful Kendall that I am trying to tell them has a positive blood culture, and they are all like “yeah ok crazy lady!!” She put on a spectacular show for complex care (as always) – but within ten minutes of them walking out of the room she was curled up in my lap, shivering so hard I could hardly hold onto her, moaning in pain and achiness, and I could just feel her little body starting to burn up…

she actually had me very scared at one point as I watched her eyes rolling back in her head and couldn’t stop the shivering/rigors and she just kept moaning “cold mommy colddddd”. I knew then that we were in trouble. That it could all actually be right. That she just might be sick with gram negative shapes of some kind and that she might get REAL sick from those shapes. She ended up going up to 103.5 that I could get (I am sure she was higher than that at one point but I couldn’t set her down to grab the thermometer). They came in shortly after that point to start the antibiotics and give her tylenol anyways – and both of those things seemed to help immensely. We struggled with pretty high HR’s throughout most of the nite last nite – but once a couple doses of the antibiotics were on board, things seemed to settle out.

We found out this morning that she is growing gram negative somethings in the cultures they drew from HERE on her PICC line yesterday – proving that she is indeed bacteremic. The hope is that we caught this one SO super early that we will avoid having her go septic – but we’ve all seen her go sailing off the cliff edge into “oh crap what just happened” before – so the docs are ordering up everything we typically have to use to fight this just so its ready for her in case she does decide to crash on us. So far today she is definitely holding her own. She is demanding car rides, Hot Dog (mickey mouse movie from downstairs in the family library), and we even went and got a balloon. (She asks for a balloon every time we are here, but usually by the time she is feeling good enough to go downstairs and see the balloons, we are within a day or two of discharge anyways). I just figured she endured a lot yesterday, so we got a balloon. (and in case you are thinking I am the worst mom ever for not just getting her a stupid balloon – they don’t have just little helium balloons here like you get at Red Robin when you leave – they are the huge mylar kind that there is no way I can drive home with a 4-foot long head of Dora the Explorer blocking my entire back window sized. Plus it makes me want to choke how much they cost – I think of all the cokes or hospital sushi I could get with that precious fundage and it just seems wasteful). But today I decided i would easily starve if it meant she was happy for a little while, stuck back in this place again. (And if you’ve seen me, you know I have a LONG way to go before starvation!!!)

So she is happily ruling the floor up here once again in her little red car, with a newly bedecked bumper housing a huge Hello Kitty balloon and streamers. Cause it needed to be MORE gaudy and ridiculous. She has her favorite CNA today who saw that we were coming up yesterday and had our room all made up for us when we got up here, including an assortment of hair ties, detangling spray and the “special” shampoo, pink blankets just for Kendall, and extra pillows for me. It was the kind of little details that made me tear up – both because we are so loved here, and because we have been here long enough to BE so loved….We’ve had just about every nurse who knows Kendall stop in to lecture her on being back here so soon, she already has two med students wrapped around her finger, and the floor resident is convinced that Kendall likes him the best out of the entire team doing rounds.

in all – its hard to complain. sure i’d definitely rather NOT be here. But if you gotta be stuck in the hospital, at least its nice to be surrounded by people who know you and get you.

We really don’t know a whole lot about “the plan” at this point – other than hounding the lab at Edwards to hurry up and identify the bug they grew on Monday so we can compare it to yesterday’s bug and see what meds we can mix up and get home on! right now her antibiotic schedule is absolutely grueling (as in there is NO WAY momma can do all that every nite for three weeks) – so we have to work on that a bit. We will probably be consulting with ID (infectious diseases) if this is the same crazy bug she grew out when we left here a couple weeks ago, and there may be talk of replacing the PICC if they think the line itself is seeded with this crazy bug. We may also be having a chat with Immunology (again) about doing something more to keep the bugs in her gut at bay, boost her own immune system better, and stay the heck OUT of this popsicle stand for a while. Overall – she is doing well – and that is what I keep my eyes on. She could be a WHOLE lot sicker right now. And I know it is only by the grace of God and his infinite ways that we even pulled that culture on monday that led us here.  Had we still been at home when Kendall spiked like she did yesterday, it would have been very scary. Not in the way that she would have gotten any more sick – but it would have been RIGHT as I was walking out the door to take the girls to dance. It would have delayed us getting up here and getting started on meds by precious hours that could have made a very big difference in how she is doing right now. I really can’t even think about all the what if’s because I know – we were brought up here for a reason. I don’t know what that reason is – I just know we are where we need to be right now.

So we will watch Hot dog for the 12th time today, and we will walk in the car a few more trips and I will try to plan for a weekendd where I may or may not be home and I will try to just breathe and appreciate every moment. i have so much more to say but I feel like I am trying to think through a bunch of cotton balls that are stuck in my brain or my lymph nodes or my ears or somewhere and I am still hacking up a lung so it makes thinking coherently kind of hard.

I will update more when we know more! Thank you so much for praying and thinking of us~

 

terra

A Good Weekend.

This will just be a quick one since it is way too late on Sunday nite and I have to be up way too early tomorrow morning!

It was very surreal to not be with Kendall for this long while she’s in the hospital. I  left the hospital very soon after her surgery on Friday afternoon to remove the broviac, and will not be heading back up until tomorrow afternoon, after the worlds funnest trip to the Arboretum. It is hard to not be there to ask the nurses the questions myself, to gauge her pain levels for my own mommy radar, to see her labs with my own eyes. It is equally as hard to walk into her bedroom without her being there. To hear the sound of her alarms without them actually sounding. Usually you can tell its been a rough nite by the amount of “paraphernalia” that is strewn about her room. This sickness was no exception. The thermometers, the pulse ox probes, the blankets, the syringes that once had tylenol in them – all over the room when i walked in. It is weird to be “partially” a family – knowing that 1/6th of us is in a bed in a room in a hospital in another state 3 hours away from where we are.

Tonite we are together as that partial family. Thanks to my wonderful family for stepping up to help us out in not leaving Kendall alone in that room. I cannot thank my wonderful amazing Aunt Margie enough for dropping her own plans today and going to the hospital so that Ben was able to come home and have dinner with us together as a family. She had to endure the eventual blowing of one of Kendall’s IV’s and the subsequent torture of the transport team having to place another one in her foot without the benefit of sedation! That is torturous even to my soul that has had to deal with a LOT of torturous procedures on my baby – I imagine that its even harder when you’re not used to it! And then to my daddy who is so willing to go sleep on the wooden boxes and take a day off of work so that I can go to Kealey’s fieldtrip, and be with the girls just that much longer.

I cannot thank you enough for your sacrifices – and to everyone else who was/is involved in this crazy shifting of schedules that happens when Kendall throws our world upside down. I cannot even hardly speculate when we will be home from this visit. Most of that is simply because I haven’t been there to gauge how she is doing against the doctors’ thoughts as they try to interpret her labs and her “level of sickness” and our ability to handle her care at home again.

So that’s what I know tonite. Not much in the way of details – but that overall she is doing well. she is still playful and interactive (as long as you aren’t acting like you might be even THINKING about touching or looking at or saying the word “IV”), Ben did a great job of working with her O2 to be able to wean her down and then off of it completely this afternoon before he left, and her feeds are still going mostly well. There is really no other explanation for how well she is doing than all of your prayers.

They (docs) say there is still a long road to go, but at least we are making good forward progress. I miss her. It has been SO great to be with the big girls, and I think they were definitely in need of some “stress-free mommy” time. We were able to just pick up and go so many times over the past few days, something that never happens with kendall. I have loved soaking up time with each of them. I will miss them as I head back up to milwaukee for an indeterminate amount of time.

Thank you so much for your prayers, and love, and support. We could not travel this road without each and every one of you who is such a big part of our story. I pray that you are all loved and held tonite, whatever your circumstances are.

More from crazyland tomorrow….

 

terra

SuperPowers.

Kendall had a really good nite in the grander scheme of things. She only needed blow-by oxygen for a couple hours to get her sats (saturation of oxygen in her blood) back into the 90’s.  Heartrate was still elevated all nite, but was staying in the 180 range – nice and far away from the 200’s! She had a mild spike (up to 103.5) that was much easier on her than the one from the afternoon, but again loading her up with tylenol/ibu, pushing some zofran to stop the vomiting that the spikes induce, and soaking her in cold wet rags allowed her to get some good rest. (And momma too!)

In fact, it was SO quiet all nite after that point (from about 1am – 6am) that I thought we might possibly get a negative culture this morning, and be able to start the countdown to discharge on Sunday! (someday I’ll learn to stop thinking so positive!)

Instead, i was woken up by the fellow  telling me we needed to have a chat. And the main point of that chat was that I was told we were going to remove her line. Her labwork today has literally thrown off docs from top to bottom of this hospital. The most notable oddity being that on her CBC (a complete blood count, one of the routine tests we run every time she’s sick – they run it on pretty much everyone who is sick enough to need bloodwork), instead of just having red cells/white cells/ and how much of each, she actually had yeast spores on the “smear”. i don’t fully understand how this is possible, other than, remember the petri dish thing I talked about yesterday where they have to “grow” the blood with special stuff? Yeah, Kendall’s doesn’t need the special stuff. It’s just growing and overtaking her blood. And along with that, taking all of the good blood. In essence, not a good situation at all.

Our attending came in shortly after that and said “ I do not know what kind of superpowers this kid has, but they are amazing. According to her bloodwork, she should be laying in a PICU very very sick right now. I do not have any idea how she is managing to function right now, let alone sit up and interact.” I corrected him and said they were SuperNatural Powers.

The bottom line though is that the only prudent and wise thing to do right now will be to take this line out. He doesn’t want to, the fellow doesn’t want to, not even ID really wants to – because no one thinks the line itself is the problem. But she has gone septic (again according to the labwork – not how she’s acting!) – and one of her counts is extremely elevated indicating that she possibly has a clot somewhere (or another massive source of inflammation that we cannot obviously see). Remember her whole “arm hurting” episode last week? Yeah – one of the first thoughts I had was that she had a clot. It could be a whole lot of nothing, but given what we are dealing with now, its worth checking out. Now our two residents were not understanding what i meant when i said “well what if we pull this line, and there’s still a clot somewhere, and we haven’t really solved the problem?” – they are acting as if the clot (if indeed one exists) HAS to be in the line itself, so if we pull the line, we pull the problem, and off she goes good as new.

Finally when they came on rounds and I asked the attending and the fellow, they said, that is what we are talking about (to the resident – who they had obviously had the same conversation with!). Anyways – it was all very confusing but I THINK now that the right people know what we are trying to do. We need to figure out if there is a clot somewhere in her upper vasculature that is NOT in her line. I am not sure if that would still save the line – but it might at least help us figure out a little better what is going on. If there is a “clot’, it could be leftover infected blood from the last infection, or it could be one of the “fungus balls” we were looking for on CT yesterday. The fellow is more afraid of it being a fungus ball, and if we try to break that up – all hell will literally break loose in this kids body. At least that is the fear.

She is still firmly stuck between a rock and a hard place. Our docs are definitely very wary with her “good” behavior, that it is a very false sense of comfort we have right now. We have all seen her go tumbling head first down a steep hill of “crashing”, and right now, she’s basically walking a tightrope across the Grand Canyon. Somehow she is staying on that little tightrope and doing a pretty good job at it – but the slightest little thing could be the tipping point for her, and right now she does not appear to have many (or any) reserves left. Complex Care has already begun making contingency plans for the weekend as we are going to be in a very tight corner. On the one hand, we hope that she starts making good improvements once the line is out and the yeast can’t attach to the plastic anymore and the anti-fungals start doing a better job of killing them off. On the other, she will be HOPEFULLY getting 2 PIV’s placed while she’s under anesthesia. Last time they could only find a spot for one, and that was what led to the horrific nite of begging pleading and praying that someone could get some access. I admit that I am very nervous about the situation she will be in going into the weekend. 

I’ll continue this later – they are here to get her for surgery…

 

thank you for praying!

 

terra

She’s my Hero.

I know I’ve said this before. And i know that most of you already know this, and agree with it even. But I have to say it again.

This kid is amazing.IMG_1587

She spent most of the nite fighting an ever-increasing fever, getting transferred from the regular pulse-ox monitor to the “bowl of spaghetti” cardiac monitor because of how high her heartrates (HR) were spiking, and how fast she had begun to breathe. She is enduring hourly rectal temperature checks (something I think they should implement in any place they want to inflict torture on people), almost non-stop rotation of meds and fluids and TPN on the five connectors they had to add on to her single-lumen broviac. I have a hard time finding a place to hold on to her to help her change positions that isn’t covered/tangled in cords! And this is all still “on the floor” (vs. being in the PICU, which has been threatened a few times already.) In spite of how crazy it all sounds, she is actually DOING pretty good.

Somehow, she is able to have a few hours where her fever isn’t hot enough to boil an egg on her chest, and in those hours, she is happy, almost bright-eyed (she has very very “sick-looking” eyes, but at least they are open and smiling), interactive, and not whimpering in pain every time she is touched or moved (like she was with her infection in February). At this point, she is fighting a nasty infection, but the key is – she is FIGHTING it. Right now, I feel like my baby girl, the amazing fighter that she is and always has been, is winning. She is not septic (according to any of the labs I have been told about). She is wanting to still engage in life. She is asking for her sisters and her daddy and her nurse and of course, “hot-gog” (Mickey Mouse Clubhouse).

So what does that mean? Well – it means that she is “fungemic”, having a fungal infection of her bloodstream. We don’t have “sensitivities” back yet on the fungus – but we are assuming that she is growing the same strain of yeast that she grew in February. (For Poppa Bob: sensitivities means that they grow the fungus from her blood in different little dishes and they shoot each little petri dish with a different kind of anti-fungal medicine. The ones that april29blog1 kill the yeast are the meds we can use to kill it in her bloodstream. We want it to be “pan-sensitive”, meaning that a lot of different kinds of anti-fungal meds will kill it. It gives us more options.) Assuming that it is the same strain of yeast, ID (infectious disease doctors) feels comfortable saying that it is more than likely coming from inside her, or “translocating” from her gut.  With a gut that isn’t moving real effectively right now, all the normal flora (bacteria and yeast that is in everyone’s stomach that helps digest and breakdown food) just kind of sits there, instead of getting moved through by all the little brush-like fingers that line your digestive tract. Think of a real thick swamp filled with stagnant pools of water vs the ever-flowing might rush of the ocean tides. Most of us have ocean tides moving crap (literally) through our guts. kendall’s is more like a deep southern swamp on a hot august day. Bacteria and fungus that isn’t being moved through has nothing better to do with itself than sit there and multiply. When they sit there for too long, they “leak” through the intestinal wall into the bloodstream. In a bloodstream without fun sugary plastic pools in them, not much really happens. And as we learned in yesterday’s blog, when there IS a sugary plastic hangout, well, THIS happens.

At this point, we are trying to do some workup to assess if the blame is more on Kendall’s gut or if its her inherently sub-optimally functioning immune system just not knowing how to kill yeast real effectively. She has definitely battled yeast overgrowth nearly her whole life. As i put it to a friend earlier today trying to explain why kendall is having such a problem with yeast: Yeast likes sugar. Kendall loves sugar. Kendall lives off sugar. Yeast live off of sugar. Yeast love Kendall. Unfortunately, it is looking like this may be something she has to deal with rather regularly. And again, if we can keep it limited to her nice, not-pissed off-yet regular yeast, we will be able to keep a lot of options open for treating it. Yeast is bad. There are no two ways around it. But when it becomes a major problem is when the body gets septic trying to fight it. Yeast is just very stubborn and hard to beat back. But it CAN be done. And THAT is what we are hoping and praying for for Kendall.

She had a pretty nasty fever spike this afternoon. i hate sometimes how very much i know this little girl and her patterns. I knew that her good morning was unlikely to last real long, and sure enough, at about 11:30 she went from sitting up and playing to huddled under three fleecey blankets moaning to herself, shaking the bed with her intense shivering, retching and puking and choking, and a heartrate that skyrocketed. The weird thing was, she started all this about 20 minutes before her temp actually spiked. I like how the nurse tried to convince me that she was fine, took the thermometer out, and then just about fell over when kendall was 104.1 less than 30 minutes after we had checked her and gotten a 101.3. It was about 2 horrific hours of watching kendall’s heartrate and fever continue to climb in spite of tylenol, ibuprofen, versed, and cool cloths. Finally after about 5 doctors came in and out to check on her, look puzzled, and walk back out to make more phone calls (I have no idea what they were all doing actually – i just know it had our end of the floor hopping!), they ordered an “ice bath” – which isn’t really a bath, but ice packs shoved into pillowcases and layered all over her body, with cool wet washcloths on top of that. Right before the ice bath was started we checked her again and she was at 105.1, with her HR consistently above 210 beats per minute.

Blessedly, the ice bath slowly began to work its magic. She was sleeping april29blog2 within the hour, and had come back down to 103.9. She took a nice long nap, i was able to go move the car out of the ER parking lot, get some good Taco Bell grub, and enjoy a nice lukewarm chalupa before she woke up and we got the GREAT news that she is off of isolation! We got to cut off one of her arm bands, get rid of all the isolation warning signs, and go for a ride on her little red car! Its the little things in life I guess!

She is now sitting under the fever curve – first check was 95.9, but after a second LONNNGGG manual check, we got it up to 99. I hope this is her body’s way of dealing with the stress of the infection by just having wacky autonomic temp changes. Leave it to Kendall to have a ten degree temp swing in five hours! The Sr. on Call for tonite has already come in and checked on us and gone over “the contingency plan” in case Kendall pulls another crazy spike like this afternoon’s. (It involves lots of tylenol and advil, lots of fluids, and lots of ice on hand!) Hopefully we wo’nt need it. I know it may seem naive, but I believe in a God who is WAY bigger and WAY smarter than these smart little yeast buggers. He is the Great Healer, and He can heal her body, cleanse it from all this nasty yeast. (and here is where my parents will be so proud they sent me to Bible college and that I worked super hard to have a double degree, one in Biblical studies).

See, God hates yeast too. I know this cause Jesus talked about yeast (actually leaven, of which yeast is one of the leavening agents we have). Anyways, the Jesus I like to picture was kind of a rebel. He probably would be like one of the homeless dudes we see wandering around, hitchhiking, making nomadism look cool and hip. And the one thing he did NOT tolerate was bullsh*t crap from anyone. Mostly from a group of holy know it alls called the Pharisees. One time the Pharisees were trying to trick Jesus into saying some stupid thing or another – and instead of answering them, Jesus told his disciples, “I hope you’re never poisoned by the yeast of these idiots Pharisees.” I like to paraphrase this into “yeast sucks. it spreads quickly and poisons your mind.” And yes, I get that i am reaching here to make the connection. My point is not to give a Bible study on the use of the word yeast in the Bible, but rather, to find a connection to that which gives ME faith. I know that as much as I hate yeast right now, God hates it even more – or at least, the damage it can do to a body when its become a poison instead of a help. So tonite we are praying that her body is able to fight back the yeast, to filter the infected blood out through her kidneys and create new yeast free blood.

She is amazing and she is a fighter and if anyone can do it, its this girl. She is so strong. IMG_1456 I was talking with a friend earlier, actually one of the pastors at our church. He likes to goof around a lot, but when he really needs to, he can bust out with the most profound statements ever. Today was one of those days. I was relaying to him an update on Kendall’s status and I said “I wish I had half her strength.” He said “you do. You have half of her strength, and Ben has the other half, and because of you two, she is able to be as strong as she is.” It just – it was what I needed to hear.

Praying for a better nite here in 1124, and for all of you, wherever you are and whatever your “yeast” is tonite – that you fight it, that you are strong against it, and that you keep on winning.

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