Snowflakes that stay on my nose

And eyelashes. And brown paper packages and kitten’s whiskers and all that happy horsecaca. My favorite things – but the best of all – IT FINALLY SNOWED!!!!!!!
It’s starting to really feel more Christmasy around here and I’m loving it!

What a crazy weekend – lots of fun – just pretty busy! Got to see the girls’ grandparents from Florida and had so much fun hanging out with them, did a little Christmas shopping, Kendall went to her first ballet class with her BFF, and today got to go to a fun family christmas party with the Starlight Foundation! And now I need a weekend to recover from the weekend!

20131207_150401000_iOS Tomorrow will be spent trying to get everything set for our monthly Milwaukee trip – logistics for the girls to get to/from school and dance, hot lunch money scrounged for,  all of Kendall’s necessities packed up. This trip up will actually be two days worth of stuff – so I have to schlep all of her meds/pumps/fluids/chargers/supplies with us. We are also going to be changing out her GJ tube. Normally this is just something that happens – no thought from me needed, no complaining or making a huge deal out of it. It’s just a part of life for Kendall – sucky as it may feel to be pinned down and have a long tube threaded through her intestines.
But this time it’s different. For me at least.

See, last time she got her tube changed, she was fighting for her life three days later. While there is no hard evidence that the two are actually connected, there’s a high percentage that something happened during that tube change that allowed the bacteria an easy translocation into her bloodstream. Whether her gut was actually punctured by the guidewire or whether the act of removing and replacing the tube just stirred up too much bacteria for her body to handle – it’s not super far outside the realm of “risks” associated with a GJ tube change. She has needed her tube changed for two and a half months now. But i have been unable to bring myself to do it. I am scared. I daresay I have a touch of PTSD about it. I know God is in control of this situation, but I am still nervous.

However, it is time. Her tube is likely the reason she has been having some increased GI bleeding this past week. Plastic tubes that are soaked in bile for a long time get stiff. Stiff tubes of plastic in ones intestines lead to scrapes/pain/nausea/bleeding – all of which we are seeing on an increasing level with Kendall. Thank God for her doctor who understands that Kendall likes to deal in the unexpected and is helping us come up with a plan that will hopefully lessen the impact this tube change could have on her body. I am hopeful that the increased antibiotics she will be receiving this week via her tube and IV, coupled with Tuesday’s IVIG infusion, will help her body fight off any increased bacteria.  And hopefully then this tube change will help decrease the nausea/vomiting and bloody stools and just overall pain and yuckiness Kendall’s been dealing with the past few weeks. I know I don’t always talk a lot about the details of all she endures, and that I put up pictures of her smiling and having a good time, and i try really super hard to act like we are all just cruisin right along week to week. Because really, that’s what I hope for. I cannot imagine how hard it would be to deal with life if I were to focus on all the little (and big) issues we deal with every day.

Take today for instance. We are almost ready to get out the door to this christmas party – and Karissa notices that Kendall is dripping and leaking out of her backpack. Sure enough, her TPN bag has a huge hole in it. While it might seem that this is only a minor nuisance, a laundry issue – it is so much more serious than that. If Kendall has been infusing from a bag that was open to a cut all night, bacteria could have made their way into what should be a closed and sterile environment, and could have been infusing into her bloodstream all night.  Like she needs any help in that department. On the other hand – it could have just busted open about ten minutes before when she dropped her backpack so she could put her coat on. We had no real way of knowing. So what do we do? Do we panic, take her right to the ER where they could have run cultures/sat there and waited for labs/ruined the day for everyone else who was looking forward to this event? Do we just pray for God’s protection and go about our day trying to ignore the fact that kendall is now a ticking time bomb of possible septic infection? We tried to find a happy medium. I’m glad Ben was here – we were able to tag team unhooking the bad bag, rehooking up a new bag, doing our own set of baseline vitals, getting a contingency plan in place should one be needed, and going about our day with smiles plastered to our faces for the big girls. (for the record – her doctor is aware and happy with our current plan of treatment and if anything should change, they are ready and waiting for us. For now she appears to be safe from infection, and we are running extra fluids and keeping a close eye on her vitals.)
Nearly every day there is some kind of medical mayhem or issues that I don’t address in full detail – simply because I cannot live my life focused on all that COULD go wrong. Each day is precious. if i spent it focusing only on the bad stuff – it would get pretty darn depressing around here real fast. So instead I try to just keep moving forward – taking care of the blood coming out of Kendall’s bag and stoma, doing the incessant laundry created by the mass amounts of diarrhea, ordering the supplies that get forgotten, dealing with the insurance companies for the things they deny that we need, and praying that somehow, in the end, it all works out for God’s glory the way it should.  Kendall’s daytime oxygen needs have increased – our ability to give her that oxygen has made things like getting out of the house a little more tricky. would it be easier if our insurance would pay for a portable concentrator or if i beat someone over the head to carry teeny little tanks that would fit on kendall’s wheelchair easier? Sure it would. But that isn’t my life goal.  At the end of the day, we have the tanks we need to provide what kendall needs.  And that frees up my time to deal with trying to get the plethora other meds and supplies we need to keep flowing through here on a constant basis to keep her home and functional.
And if what you see at the end of all that effort is a happy, smiling, full of life little girl – then my job is complete. If it comes off as seamless and like “things are going fabulously” – all the better.  Because really – she is doing as well as can be expected. I do wish I knew exactly what was happening inside her little gut and I wish the meds we had could provide enough relief for her to make it all the way through each day without bad periods of puking and pain and bleeding.  I am hopeful her team can help us come up with a better plan this coming week as we are able to sit and discuss what is going on. I hope the tube change helps makes a major difference for the better, and that her body is able to fight off the inevitable stirring up of bad gut bacteria.  I hope her body is able to assimilate the IVIG with no reactions in the midst of all that is being asked of it this week.
I hope I don’t forget to pack anything important and I hope my other girls are angels at their home away from home again.  I REALLY hope we can find time to have someone help us get the stitches out of kendall’s broviac too! (It is stitched into place to allow the internal cuff to grow in to anchor the broviac firmly in the tissue of the chest – usually the stitches dissolve/fall out on their own. Unless you’re kendall. then they just sit there and irritate your broviac site and drive your momma crazy trying to keep them from filling up with gross stuff every dressing change.)

Anyways – it’s late now and I have to figure out how I’m going to fit four bajillion things into tomorrow and still get some sleep to make our trek north at 4 am Tuesday morning.

I hope your weekends were all magical and filled with your favorite things as well.

love and hugs~

T-crest.

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

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

Making the Turn.

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

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

So – backing up a little bit.kendallhospital4

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Terra, Ben, Kendall and the whole K-crew

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