Home

We are trying to get out of the hospital on Friday and leaving any hospital is always a hassle and a gamble.  (Keep in mind we have an appointment at 1:00 with the pain neuro doc, who is not IN the hospital.). Liberty's last treatment began at 8:00 am.  Around 10:30 Libby's IV died after four days of hard work.  This meant another IV installation, which added another thirty minutes. It's 12:40 and discharge papers have been signed and I HAVE them in my possession.   I know we'll make our appointment, but this is cutting it a little close.  

Libby has now had five days of IVIG treatment and we may not see the advantage for a week. Hoping that her Dystonia settles down.  This is how the thinking has to go. 

1. Is this treatment/procedure terribly invasive? Do the risks outweigh the possible gains?

2. What is her level of discomfort going to be during the proposed treatment/procedure? 

3. Is their data to show that the results can be measurable?   

4. If we don't try this treatment/procedure, will we regret not having exhausted every avenue?  

There ya go, so we tried the IVIG and not too bad,  so far.  It's now Saturday morning, 7/20, and she's a fussy, tired, locked up mess, but she's cute and she's home. 

I am not happy about these skin biopsies and where they are placed and how icky they are.  That's all.  I am not happy about these at all.   We won't know the results for up to four weeks.  That sucks.  Long time to seriously worry and prepare myself for these life changing results.  If these results are negative, then we are back to square 500,291!  Yes, she has Lyme, but there has to be something more going on.   I just wish it would go away and leave this child alone.

Mariah now has the key

To her very own place.  I cannot shine what this feels like for her.  She is doing something I never really did.  I did live alone, but there was always a little one involved.  She is completely her own and I hope and pray she relishes this opportunity. 

And, she's living in her very own secret garden! May she take the time to heal herself and focus her twenties in the beautiful life she has now and ahead of her!!  Proud mama!  

It's now Friday and we've been home for the whole week.  We've managed to wear ourselves out every single day.  We've mowed, cleaned, organized, made it to therapy, ripped carpet out of both bedrooms and will be sanding and finishing the rooms today.  I cannot explain the sense of urgency I feel.  I just know that in many ways time is limited. I'm nesting and both my eggs are definitely hatched.

Our bathroom redo has been approved and the walk in shower for Libby will begin being installed next week. I cannot continue the ugliness that occurs every single day during Libby's shower time.  That is truly the most dangerous time of her day.

We bought another new car and Mariah will take over the Tucson.  Knowing that she is in a reliable vehicle helps the guilt/worry/pride cycle. 

7/26/13 

And by the way, if this last week has been any indication of Libby's reaction to the IVIG treatment, we won't be doing this again!  She has been in lots more pain, locked up, pissy, whiney, and a whole bunch of yuck since we returned. Not fun!  

Part 2: Treatments, Tests and Theories

There are quite a few things in the works with the testing and theories the docs currently have.  We have made it through day two of 2 1/2 hour IVIG treatment and no discernible reactions as of yet.  This treatment has helped with Dystonia in the past, so it will be great if she can get some relief.  The IVIG involves infusing blood plasma into her stream. 

 

Libby woke me up before 5am with pain and general complaints.  Docs are interested in possibly starting her on another drug, stronger relaxant, to help her sleep through the night.  They keep adding stronger meds which are really just another Band-Aid for her increasing symptoms.  Whatever it takes for her to be as comfortable as possible, with as little drug interactions in her system.  

 Tomorrow morning Libby will be sans food, which makes for a "happy kid" until after her procedures.  She is having several skin biopsies tomorrow and she will be sedated for at least one.  The illness they are looking into is intense, but it sure checks off many of the boxes this sweet girl has.  I'll be able to say more when I know more.  I don't want to trigger an avalanche of panic.   Faith.

 

We had a battle Day one with the pharmacist on this floor, it wasn't his fault, he just didn't get the memo.  Many health professionals have a protocol set up because caretakers and medical employees have taken advantage and stolen, this means something to me that I find memo-able.   Here it is: I had to hand the many scripts and vitamins over to the pharmacist.  This included taking all the pills out of her pill organizer, which takes forever to plan and organize and longer to place every pill back into it's original container.  I had even brought the pill bottles and the most current scripts with us.  But, we still had to hand everything over.  They even wanted to take the melatonin and the stool softeners away from the family pill bag.   **Here's the issue, besides the obvious control issue, when Libby needs a rescue med, she needs it immediately. Not after the 15 minutes it takes for the med to be ordered and the additional 15 for it to be sent and then, the 15 minutes for it to make it to her mouth.**   I felt like I was not being trusted to be a reliable parent.  I even asked exactly what kind of credentials a parent had to have to be able to give their child pills.  There were a few minutes where I wondered if Rachael would actually yell and completely lose her cool.  We really just wanted to keep the rescue meds with us, but we played nice and have been surprised and impressed by their vigilance to get Libz her meds on time.  

 

 

 

Day two of our hospital stay and we have escaped to the great outdoors.   We did parts of a playground workout and played with the kid.   She was not amused when we tried to make Sparkles fly. 

Look at her go!!!

This is right after she got the precious bear back, she is clearly rubbing the rescue in to Rachael.  :)

Getting a little work out in.  We found a few nice, long ramps to push Libby up and then down.   Gotta tell ya it's a great workout that goes right along with the Pee Squats.   Every time we go to the restroom we are doing either ten squats or ten vanity push ups.  When time is short, these little tricks help me feel a bit better about not being able to work out. 
**If I were going to design a children's hospital for Chronically ill kids, I would have a workout area available for parents to release the steam.  Just saying. (And I might add a wine cellar as well.)

These are the little cards that we are handing out as we go. Anytime Libby wants something like a new stuffed baby, she has to find one that she can donate.  Or, I'm letting her pick a family out while we're eating who looks like they need a blessing and we try to either pay for their meal or leave a portion of their meal paid for.  It's the anonymous part that's so fun and we leave the card. 

Mariah is very close to moving into her own house and I am excited for her and nervous.  Living alone is something every young person needs to do.  BUT as a mom, it is in my job description to worry and nag about planning and budgeting.  It is a joy to have the chance to be her safety net as much as I can.  Enjoy sweet young lady!!   Budget time and money and keep your life and surroundings clean. There's the inner mom releasing. 

Be a blessing!  

@@@@@@@@@@@@And by the way, one of Libby's skin biopsies is actually a Rectal Biopsy.  Anyone wanna tell her about it for me?  They are going to sedate her during, wish they'd knock us out too!
 Gotta say,  "Eeeeeewwwwwww!   You're gonna do what?   Get the skin from where?? EEEEWWWWWWWWWWW!!  Coooooooooooolllll!  MY POOR KID! Eeeewwwwwwww!"