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Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Thursday, November 13, 2014

My version of a bad day

Just to warn you this is a "venting" post perhaps a rant. You know, I have learned to come to terms with our new "normal", earning frequent "traveler" awards from Phoenix Children's Hospital, the endless Dr. appoints, the mountain high stack of bills and insurance claims, my ear permanently red from all the phone calls scheduling appoints, dealing with the insurance, following up with Dr.s... the list goes on...  And I've adjusted to that normal as stressful as that is but when things with that new normal don't go right, I really struggle with keeping my composure.  

So Coleson gets a weekly Enzyme Replacement Therapy.  It is about a 4-5 hr. infusion of an artificial Enzyme that costs $10,000 a week!  Yes, that is right, the drug alone is over $1/2 million a year. That is why I call him my Million dollar baby.  It's not fun since he has to have a needle stuck in his port and he's hooked up to an IV so he's fairly limited in what he can do.   Typically though he naps for about 2 hrs of it and watches TV once he wakes.   We have been getting them at home since around May.  We had an awesome home health care nurse that gave it to him and she had zero issues.  The only 2 times we have had issues with this is when we've been in Michigan.  The first time, we ended up in the ER because the nurse could not get the heparin in after the infusion (heparin is what prevents clotting in the port).   This was after a few attempts to re-access his port (meaning a few more needle pokes).   The last time we were there for my dad's passing we had to scramble to get things arranged and manged to do so but somehow the pump settings changed during the infusion from ml/hr to mg/hr. So about 2.5 hrs into the infusion, the nurse noticed the bag was still full of drug and it took us a little while to figure out what was wrong.  Again leading to multiple needle pokes.   Yesterday I get a call from a nurse saying she's schedule to do Coleson's infusion today.  She sounded a bit flaky about it so I was already worried about it.  Our regular nurse had not said anything about not coming.  The first thing that went wrong (notice I said the First), was that she forgot to unclamp the line after she accessed him (stuck the needle in him) so she did not get any blood return (indicating she was in fact in the port), so she re-accessed him (a new needle and poke), before she finally figured out what she was doing wrong.  Clamping and unclamping the line should be instinctual for a nurse.  At 5:00ish, I came out of my office to see how close they were to being done when I looked at the drug bag and noticed it was completely full, meaning he had been hooked up for over 4 hours for no reason.  So we tried to troubleshoot why and without knowing the root cause, we re-started the process and kept a close eye on the line to ensure the drug was moving through it.  The initial infusion rate starts at 2 ml/hr which is like watching a snail crawl.  This meant that he would be hooked up for another 4-5 hrs. and we were planning on going out to dinner for Peyton's birthday.  Fortunately our nanny was able to come back to stay with Coleson so Paul and I could take Peyton out still.  When we returned from dinner, I noticed that Coleson's chest was swollen.  This means the fluid is going into his body and not the port (vein).  So I immediately stopped the infusion, told her we were "done" and when she tried to flush his line, the needle practically popped out.  There was no way I was going to allow her to try to put the needle back in so we called the Dr. and he said it should be Ok to leave it until this morning to allow the swelling to go done.  Rachel did tell us after the nurse left that they had already changed his dressing once (the tape that keeps the needle in) which should have been a clear indication to the nurse that the needle was in fact NOT in the port.  At one point I had to play referree b/w Paul and the nurse as Paul cannot tolerate incompetence and the nurse was trying to justify her actions.  Fortunately he does listen to me when I try to diffuse the situation.  So the nurse left, I'm sure she felt awful as well, and I do feel bad for her.  But we just wasted a $10,000 supply of critically important drug and put Coleson through a lot of unnecessary pain and frustration (not to mention me as well).  It's events like these that are to blame for my unusually high blood pressure readings recently.   To top things off, I just ate some apparently bad, though freshly opened, not to expire until December Turkey pepperoni.  There's another $5 down the train for antibiotic free, uncured, turkey pepperoni.  

Thank goodness I have this forum to release my frustrations, my job to keep my mental health in tact, and my friends and all of you to keep me going.