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.  

Bittersweet Anniversary

One year ago, after 138 days in Minneapolis, Coleson was given the green light to come home.  It was a day filled with mixed emotions as we said goodbye to the Doctors that had given him a new/better life and the more than amazing friends we made along the way.  During this time frame I watched my son go from a seemingly healthy boy to being totally dependent on tubes, machines and medicine to keep him alive, to a resilient survivor, 

This year in the same time frame I watched my 74 year old dad go from a seemingly healthy cancer survivor to a courageous face death head-on hero to a peaceful angel.  I’m not sure which was a tougher experience. As a parent, one should never have to watch their child go through what Coleson went through and yet as a child you are never old enough to watch your parent die.   

I don’t know that there is a good way to die, unless you are fortunate enough to have lived a good long life, your days no longer have purpose and you pass away in your sleep.  But my dad did it in about as good a way as you can.  It was unexpected, yes, but not immediate like a car accident or heart attack. He had time to say several goodbyes and take care of many loose ends.  It wasn't drawn out so he had little, if any suffering and we did not have to spend many days watching him digress, listening to his every breath, wondering if today would be “his day”.    Once he was given the prognosis, he took matter into his own hands and I believe was in almost total control up until the very last minute.  He did not want us to go through what he went through with my mother.  He was at peace with his destiny, though of course he wished he could live longer, he wasn’t afraid or mad.  He told me he really will miss not seeing Coleson grow up  and see what he will achieve.  I know that to be true with all of his grandkids, but of course, Coleson is special. I know how hard Coleson’s BMT was on him as well.  You never want to watch your own child and grandchild faced with such challenges.   

He passed very peacefully on Monday, October 6th at around 2:30pm.   He waited until we will all there, making sure Grandma (his mother who is 99) got there so she would be with us when he passed.  She had a chance to say goodbye and give him a kiss as we all had several times throughout the day.  Within 5-10 minutes of us leaving Aggie in the room alone with him giving her time to say her final goodbyes and to tell him that she wanted to spend every last second with him, he took 3 quick and final breaths.  It was quick and peaceful.  It happened to rain that day and there was a bought of thunder just after he passed and of course we took that  as his way of letting us know he was knocking on the heavenly gates.  A rainbow appeared thereafter.  

Of course the following days are really too busy for the immediate family to mourn, making funeral arrangements, writing obituaries, putting together picture boards and a video montage of his life.  As we all went through the years of photos, I couldn’t help to think that we should have been doing this for his 75^th birthday, not his funeral.  I also noticed that my dad rarely took a bad photo.  I wish I could say the same for me.. He had a natural and warm smile and his eyes were bright.  We had a hard time narrowing it down to less than 60.   Here is the video montage John Lewis Video Montage

and the funeral home tribute:

Pray Funeral Home - John Lewis

We had 2 visitations.  I think I already mentioned how he thought no one would show up for his funeral but the line was out the door with friends, family, colleagues, neighbors, church members etc.  What can I say about the funeral itself… I think it’s the most difficult of all the ceremonies, it marks the final goodbye.  A family friend sang a very touching song, The Field Behind the Plow.  www.youtube.com/watch?v=PUM8mXJre1c.  He rode away in an old 1939 Cadillac Hearse, a perfect final ride for him. 

I haven’t had a lot of time to really mourn since but it does find ways to creep in every now and then.  As you know I live a very busy life and we have had several events in the past month including Coleson’s birthday party, the Be the Match race, several friend’s birthday parties, Halloween and preparing for this weekend’s community garage sale and Peyton’s birthday party.  Also tomorrow my friends and Sole Sports are putting on another Ronald McDonald house dinner at Phoenix Children’s hospital.  I think this makes 5 RMH dinner’s this year on behalf of Coleson. 

I want to thank all my friends who sent flowers and plants, cards and gifts, phone calls and texts, and invited me to lunches and dinners.  You are the reason why I am able to continue to face life’s big challenges, you are what keep me going day after day when it life isn’t fair, you are my strength.  Someone asked me how they can help me and it really is little things like these that help me the most.  And just to appreciate life and family and to show compassion for those who are less fortunate.