Thursday, November 24, 2016

Thanksgiving

Today is Thanksgiving.  In fact, it's 2:30 in the morning and I am still awake.

I'm not making pies, or prepping the bird.  I'm not busy cleaning for company to arrive or finishing up the laundry.

I had planned to be in bed 6 hours ago.  I had big plans for a quiet day as the kids are at their dad's for the rest of the week.  I was selfishly looking forward to doing nothing.  Well, not nothing.  I had some things planned that have been neglected the past few months.

As is usual and customary, making plans is an activity in futility.

Instead of a quiet night, I ended up working until very late.  At nearly midnight, while I was still at work, I got a series of text messages from Shelbie. (The kids are at their dad's for the holiday.)
 She felt like she was having a heart attack or another stroke.  She was in extreme pain in her left jaw and it radiated down to her shoulders and arm.  She was pretty scared, as is to be expected after the month she has had.  I was pretty nervous myself.

We texted back and forth about what to do.  It's a sad day when you spend over an hour trying to decide how you will get treated if you go to the ER.   The first time these symptoms happened, I took her in and the doctor made her think she was having an anxiety attack.  She clearly was not but he also wanted nothing to do with novel idea of listening.

The second time, she had these symptoms plus an actual stroke, I took her in and the ER doc tried to convince her she was experiencing a migraine.

So...why would we go back there?  It's not so much that I don't think the doctors are smart enough to help, it's that they aren't willing to listen and help.  If they would just engage in the process and listen and think critically, it would be a much better experience for all of us.  And, it's not all of them just a couple wing nuts that spoil the experience.  I realize 24 year olds don't have strokes and heart attacks but nothing about her health history resembles a normal 24 year old.  It isn't like they are just meeting us for the first time ever!  They know our story and their ignorance and patronizing way stings even more and makes us feel so 'other'.  I hate that!  I won't put her through that either.

Yesterday was her first treatment on the increased dose of Plasma.  The last two events also happened on the night she received her plasma so I'm thinking that she has started to have reactions to the plasma!  This is bad news on so many fronts.  Our immunologist had wondered if the plasma was increasing the inflammation in her arteries.  With that increased reaction, the vasculitis becomes so much worse.  Tiny clots form, the artery clamps down or worse, scars and she is prone to clots and strokes.  Hizentra has a black box warning for creating clots and causing strokes!  Ugh.

The plasma is the gold standard of treatment for her condition of CVID and vasculitis!   They were hoping that by increasing the dose, they would be able to get things calmed down but that doesn't seem to be the case.  Without the plasma, so many things will run unchecked in her body and it's anybody's guess what will happen then.

Our team said that if the plasma didn't turn things around on its own, then we would need to seriously consider a few months of chemotherapy to destroy her immune system.  I can not even go there... not again!  That would mean a port would need to be placed but that is going to create extreme issues with her fragile arteries and then all side effects of chemo.  Aye, Aye, Aye.

So, instead of getting some much needed rest and down time, I am sitting here waiting for the phone to ring.  I spoke at length with my Wasband and we are on the same page.  We have loaded her up with anti inflammatories in an effort to calm down the likely spasms in her vascular system.  (according to the latest theories anyways) pain meds and even some meds to help her sleep.  I really didn't want her to be alone so the boys, bless their heart, are sleeping beside her to make sure she doesn't need anything.  If none of the medications I concocted work, and her symptoms continue to get worse, then we will go to the hospital.  I have to ask myself...why am I the one trying to think through this process of calming things down?

I realized tonight that we need our team to write up a protocol that we will keep at our local hospital so I don't have to be the one with all the answers that are really just a shot in the dark.

The truth is, I am scared to go to sleep.  I am so tired and I'm afraid if they call to have me meet them at the hospital, I won't hear the phone.  Not only that, my mind is going in a million different directions and then all the worry of what to do next.

I can't even remember the last time we had a Thanksgiving that wasn't centered around a trip to the hospital or sick kids.

I wish there were easy answers.  It's such a complicated situation and one problem leads to another.

Nevertheless...it's Thanksgiving.  A day to express thanks and gratitude.  And even though today has not been easy, there is still so much to be thankful for!  So much!

Our very good friends sent a wonderful surprise a couple of days ago.  The box was large and the kids were unwrapping it and all I heard were shrieks of happiness and joy!  It was a big Gnome!  He is so cute and lights up.  I will take a picture and post it soon!  Shelbie adores Gnomes!  It's a funny story that I will share sometime but it was so fun to see her so excited and happy!  It was the best surprise!

About 6 weeks ago, Spencer entered a videography contest hosted by a 'Big Deal' Videography company in the area.  The winner was to receive a top of the line Drone and a job with the company.  The company sent those in the contest random footage of either an Alaskan Vacation or a Lake Powell Vacation.  They had to create a promotional video for either place, using the footage the company sent.  I believe there were well over 30 entries.  Spencer ended up in the Top 5!  Last week, he found out he was not selected as the winner...BUT...They sent him an email saying they loved his video and would be interested in collaborating with him on future projects.

I thought that was just a nice way for them to soften the blow.  Boy was I wrong!  They called back yesterday and told Spencer that everyone had actually thought his video was the best and though they settled on giving the Drone to someone else, they wanted to offer Spencer the job!  He meets with them on Monday and then they want him to be on board for their big Social Media Blitz that starts Tuesday.

I am so happy for him!  He has been struggling for so long and working so hard on his videography skills.  I am happy that he gets to experience a little success and see his dream start to take shape.  He deserves it so much!

Sam has been sick since Sunday but he seems to be on the mend finally!  Fingers crossed it doesn't take a wrong turn and become pneumonia like it usually does.

I feel blessed to be able to take care of my kids.  I feel grateful to those who offer me work, who share advertisements for my company.  It means a lot to me.

I could go on...It's important to focus today on just the good things that make all the other crummy things worth it.  I have very close friends who are not nearly as fortunate as we are right now and that is a humbling and reverent thought.

So, as you gather around a table filled with food and full of family, be grateful.  Be happy.  Glennon Doyle Melton put it this way, "Family are the people who keep showing up.  They may be a mess but they are our mess but we are a mess too, but we are their mess!"   I love that thought!  I will miss being with my family today, the ones near and the ones far. We are without a doubt, a messy family but we keep showing up for each other and I wouldn't want it any other way!  What a great, big messy blessing that is!

Happy Thanksgiving!
























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