Monday, November 18, 2013

Saying Goodbye

Today is 4 months since Alexa was transplanted.

Today we also got to say goodbye to something, that we have gotten very attached to.  Her PICC line.

Now, before I get into that, I have realized that not everyone knows what a PICC looks like and it can be hard to visualize.  Yesterday being the last time I would have to flush this PICC line, I took some picture of what it looks like. 

This PICC is placed into her right arm. 
Every day that it is not accessed--through taking blood or hooked up to an IV infusion, it has to be disinfected, flushed with a saline solution(pictured below) and then heparin lock.
Then we wrap it with gauze
And finally we wrap it in one of our arm bands (a sock that we cut and sewed at the bottom) to keep it protected.  I think I just might miss matching her arm band to her clothes!  And I think she will too as she asked me to keep them.
So now that you know what a PICC looks like, we can talk about it's removal today.
Last Monday, we had a clinic and labs appointment.  They were super impressed that it has been a month since we have completely been off the lasik and there is no sign of her ascites returning. They asked if I would like to speak to some metabolic families considering transplant--of course I said yes!
Her LFT's came back still above normal but in the range they have been trending at.  They are not sure why she keeps on bringing back higher than normal numbers but are happy that they are staying stable. When I went to write her numbers down in my "Alexa's transplant booklet" I flipped back through her previous lab reports to compare and actually her numbers from Monday are probably the best they have been in more than 2 months. For those liver mama's and papa's out there, AST was 59 and ALT 60.  So, yes they are still higher than normal but they are actually trending downwards.  That a win in my books! 
FK just made it into the range that they wanted, it was on the low end.  So retesting next week.

Overall, they are very happy with the way Alexa has recovered. So happy that they made the appointment to have her PICC removed.  I was told on Thursday night that it would be today--November 18th--4 months post transplant.

I had very mixed feelings about removing her PICC line. Crazy as it sounds, I developed a bit of an attachment to it.  For one thing, it makes draws and IV's so easy.  Incredibly Easy!  The thought of doing peripheral draws again, even if they are only every 2 weeks scares me.  I hate seeing Alexa scared; I hate when she is in pain because they have trouble locating her deep wiggly little veins. 
Secondly, I think the PICC kind of became our (well my) safety net.  If for some reason, her virus numbers become present, like EBV, we would have to start IV infusions again.  If for some reason, things go bad, we would have to start IV's again.   The what if's scare me and this PICC made it seem not so scary.  Crazy! I know!

But it had to come out.  The risk of infection is too high to keep it in because mama likes it there for the "just in case" scenarios.

I told Alexa in advance, as I always do.  I find preparing her makes the appointments go smoother.  She trusts me more because I always try to tell her exactly what they are going to do to her.  Does not always work because frankly some things come up that I do no foresee.

Alexa was very nervous, she cried for awhile, telling me how scared she was that it would hurt.  I tried to comfort her the best I could, but the fact that she had trouble falling asleep last night, probably is reflective of how anxious she was about this procedure. 

It was tough getting any smiles from her, but we did manage this one before we went in.

They wrapped her up and any mom who has to do this can tell you how much the children hate it. But they had to keep the area sterile.  Being restricted while doctors are poking and pulling at your arm is pretty terrifying, so we put her B*Strong Bear in tight with her so that she could feel protected.  They had put a numbing cream on her but the PICC was pretty attached to skin and so gentle tug was not enough.  They had to use a local anesthesia to numb the area and then cut the skin off of the PICC.  See what I mean about unforeseen.  I did not warn Alexa about needing to freeze with a needle because I did not realize that they would need to.  Maybe we would have less tears had I been able to tell in her advance, maybe not.
But I like to be honest with her so she does not begin to fear that I am not telling her the truth.
Anyhow, our nurse was great and tried to distract her as best she could while the doctor worked quickly.  It came out smoothly after that and a minute later we got this smile out of her.  Her bravery continues to amaze me.
We are pretty excited about being able to take a bubble bath on Thursday!

And in other areas, we had a parent-teacher interview on Thursday and am so happy to hear that her teacher had no concerns, either academically or behaviour wise.  She is following the curriculum nicely and follows instructions and routine just like all the other 5 year olds. 

Neurological damage has and always will be a concern.  Did her brain suffer from those ammonia hits? Can they be overcome? Did the 5 years of elevated citrullin do any permanent harm? 
So when I hear that she is doing well and there are no concerns, it is like music to my ears, a sigh of relief until next report cards and parent-teacher interviews approach. 

I can't explain how much this girl amazes me! 

Happy 4 months Baby Girl! 
Momma loves you to the moon and back!

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