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:

 

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 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 struggles 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 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 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 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