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.

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Comments

  1. judie wolf says

    sending positive thoughts that things will go well without problems. I’m sure you are anxious over this procedure and I absolutely don’t know how you find the time to even go to the bathroom. Have a safe trip.

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