One of Those Days.

today has already been one of those days.

and it is only 11:21 in the morning.

I woke up with a stupid sinus headache/migrainey/make me incapable of doing much kind of thing. An hour later the nurse informed me that Kendall’s dressing was all the way off. This instantly intensified the headache thingy.

Lemme break it down for you, for those of you who are lucky enough to not have to know what  gasp-inducing horror it is to have a CVL (central venous line) dressing be “all the way off”. Basically, it’s a tube coming out of your child’s chest wall that tunnels down through their rib cage and ends right in the large opening of blood going into the heart. When we change her dressing, we go through a pretty rigorous technique to make sure that everything is sterile around us, and near her, and our TPN nurse is usually the one who touches ANYTHING. And if you’re thinking that this sounds like a super fun thing to do to a 2 year old, you’d be right. Almost a much fun as trying to wrestle with a tiger while covered in bacon grease I’d imagine. Anyhoo. Little missy’s skin is like apparently trying to reject any and all forms of adhesive, as we have gone through nearly the entire gamut of what our supply company can suggest or offer. She either reacts to it, and itches and tears at the dressing so badly that she rips it off, or it just WILL NOT STICK. It’s like trying to stick something to teflon. Hard to explain. So yesterday we were all excited to try this new skin protectant/adhesive helper – and less than 18 hours later, we have a completely slid off dressing, and a wide open entry for germs to get in through the hole where the tube comes out of. Highly stressful. So once again my children had to be called into action in the middle of doing their morning routines – Kealey get me a biopatch, Karissa turn off the tpn pump, Kaylen – STAY IN THE TV ROOM AND DON’T MOVE!!! While I once again prayed over her little chest, and that her little immune system would be able to suck as much energy as it needed to send wbc’s to attack anything that may have gotten in, and just PRAYED that she would be strong enough to handle the trauma of having that tube yanked on. The entry site which was looking SPECTACULAR yesterday when we went to switch her dressing is VERY red and angry, and i can tell it just hurt very badly as I went to gently clean it with the iodine solution. Ugh. Please pray with us that we can manage to avoid any kind of infections or ramifications from this incident. Pray that we can find an adhesive that works for her and that doesn’t keep ripping up her poor skin so badly. And that she continues on in this great stretch she is currently in!

It’s so hard to ignore some of the little crazy things she does that typically signal that her razor-thin baseline is starting to wobble a little bit – extra sleeping, falling more even with her AFO’s on, increased nausea, decreased urination, blah. It will be so nice to hopefully someday soon be DONE with all this central line business and be back to just our good ol’ J-tube and oxygen emergencies. Sheesh. Otherwise i’m going to be the one who ends up needing the IV of D10 to keep me from having a major meltdown!

Anyways – besides that crazy-ness, i’m trying to tackle K2 and K3’s room today. It looks like a bad episode of Hoarders in there. It’s not that they are slobs necessarily – they just have a lot of clothes, and not a lot of easy access to places to put them. I need something better in their little room. If anyone local has any of those plastic drawer thingies they aren’t using – let me know! I think this is easily going to be another few days before this project is done. I hate when i have to do it right as we are in between seasons – i don’t know how many “warm” clothes to keep in there or to just put all fall/winter in there already. #firstworldproblems, right?

So instead of continuing to just ramble aimlessly, I’ll go ahead and throw in my Instagrams so I can link this up to Insta-Fridays over at Life Rearranged, a great place that I find myself cruising around lately, finding like-minded people who are going through similar issues to our family’s craziness. helps me feel a little less crazy, a little less alienated from my own world.

These are supposed to be a summary of our last week, but some of mine are from a little longer out than that. It’s been kind of a crazy month. Maybe September will be better!

A picture of what the little miss’s dressing SHOULD look like, fully intact, with her fashionable gauze tank top securing the whole shebang. i love this kid. i love when she is feeling good enough to be silly and put on my sunglasses to make me laugh!

 

The girls and I got to go downtown for a quick little getaway the nite before Ben’s surgery. I have to do a whole post on this – cause it was pretty fun.

  

We pretty much just played tourists in our own city. I had never been on the Navy Pier Ferris Wheel. it was awesome. Especially when Kealey got petrified at the top.

 

First Day of School!!! YAYYYY!!! I mean, don’t get me wrong, I will miss them. I’m very sad to see summer end. But I am CRAVING the schedule of having a rhythm and routine again. And eventually, i’ll start being glad to see some of those fall/autumny things. Huge shout out of thank you to the grandparents who so graciously sponsored this episode of “back to school outfits”. Oh my babies – so beautiful! Keep those smiles on!

Almost 6 months after starting the process, we finally got Kendall’s new chair! She loves it. And as much as you hope you never have to pick out a wheelchair for your toddler, if you have to get one, you might as well like it too. I really like most that I am pretty sure I’m going to have some rocking upper arms/back muscles from having to deadlift 80 lbs of metal into the back of the Denali every time we go somewhere. I’ll do another separate post on this soon, but to answer a few inevitable questions real quick – no she doesn’t “need” to be in a wheelchair all the time. She does still rely heavily on her stroller simply because her endurance for doing anything physical is pretty low. So given that I still need a stroller for even quick errands, and the fact that most strollers at the BAbies R us do not come equipped with a place to hang a bag of medical supplies, a bag of TPN and IV pump, a bag of J-tube formula and pump, and an oxygen tank – it was time for an upgrade. Plus most strollers just don’t have the capacity to handle a very tall {almost} 3 year old. Anyways – we have the new chair, she loves it, and it works GREAT for our needs.

One of the benefits of the big girls going back to school is being able to have more one on one time with Kaylen, who is just soaking it up. I really have no idea what she is doing in this picture – she just wanted me to take her picture like this. So I did.

And like this. In her outfit for the day. Which included ballet slippers. Trust me when i say this picture doesn’t begin to capture the true fluorescent eyesore that this outfit was.

And we wrapped up the week of Kaylen with a fun lunch at Chipotle, with just mommy daddy and kaylen. She loved it. Being the “Irish twin” of a sister with special needs who gets a LOT of attention (she has her own full time nurse, hello! not even counting the parade of therapists in and out of here all week and the plethora doctors appts) – life is strange for Kaylen. She never knows quite where to fit in or where to land. I hope we can continue to help guide her on her place and role in this family – knowing that she is the one who keeps us all laughing, that we love her, that she is a very special kid, even if it does feel like she’s left out or left behind a lot. I hope I can work on that better over this coming school year, my last year with her at home. That seems so crazy to even say out loud….

 

So ok there you have it. Kind of a mini-update in pics. Mostly just rambly ramblisms.

 

And i still have a headache.

 

to any and all of my friends on the East Coast – please stay safe from this crazy storm. Praying for you all!

 

Have a super great Friday nite everyone – hope its fun whatever you are doing!

 

terra