A Less than Uplifting Post

Clearly, I struggle to update the blog.  Part of me feels like it's the same thing, different day, so what is there really to share. But, the reality is, our days are anything but consistent. This leg of the journey is not linear.  There are many ups and downs.  There is baseline, a rough patch, a new baseline, and repeat.  And so it will continue until the end.

The end.  Isn't that really what we all want to know? When will this end?  I certainly do.  Not because I want this to end.  No parent wants to lose their child.  But, as Jack's neurologist reminded me when I asked her to please help me get past having to know the why of what is going on with Jack ..... we know the why.  Jack has a progressive neuromuscular disease.  Not a new revelation by any means, but also not something that I've focused much on over the years.  Other than the fact that Jack's disease has never allowed him to walk, talk, eat or breathe on his own, he has never been a chronically sick kid.  For the most part, we just accepted (okay - more like, adapted to) his limitations and moved on with living life the best we could.  In other words, his disease was mostly a non-issue.

Obviously, that is no longer the case.

So where are we at this point in time?  After a very rough evening last week and an after hours call to the hospice team, we've now increased Jack's morphine dose yet again and he's now getting it every four hours around the clock.  No more stretch between the midnight and 8 am dose.  Getting up to give the 4 am dose is brutal.  Mark and I flip a coin to decide who has to get up. Not really. We're actually pretty good about divvying up the job so that we are equally tired. That's only fair, don't you think?

It's important for you to know that when Jack is not in pain, he looks good.  He smiles and he's engaged.  It's not all doom and gloom. However, when breakthrough pain takes over  - it's a challenge to get a handle on it.  It's heartbreaking to see Jack suffer. But, the fact is, Jack isn't going to die from pain, so, in theory, this insanity can go on for a very long time.  Which brings us back to the question of,  when will this end?

I haven't a clue.  No one does.  I think it's safe to say that it's not anytime soon.  It could be months, it could be a year. We will continue to deal with ups and downs and pain management issues.  But,  there will ultimately come  a time in this journey when exceptionally difficult decisions will have to be made. Quality of life and end of life decisions are very personal and very private decisions. But, I'm confident that when Jack has had enough, he will let us know.  As Jack's mom, there will be no happy ending to this journey. But, I unequivocally believe in God and in heaven, and I take great comfort in knowing that when Jack is ready to go - he will be going to a most amazing place.  I believe he knows that too.

In the meantime, we cherish him, we comfort him and we love him.  And, I will do my very best to continue to share him with all of you.

xo

Short Update

An update is in order, but this will be a short one.  I've spent the last two weekends traveling and I'm exhausted. I know -  you don't feel one bit sorry for me.  That's okay.  But, as much as I enjoyed the amazing weekend with my sorority sisters at Coronado Island and the time we spent in New Jersey/NYC celebrating my niece's wedding, my sweet Jack was having a very rough time back home. The stress of being away from him when he is hurting cancels out the fun.  Not that I regret taking the time away.  It's just not as fun and exciting as you might think.

It wasn't that long ago when I could say that Jack was having good days and bad days.  Now, it's more like Jack is having good times and bad times in a given day.  Jack isn't having any "good" days anymore.  We've now added continuous oxygen and Ativan to the mix.  I still struggle with wanting to know why?  The one thing Jack's doctor assured me of when we decided to transition him to hospice was that I could still pursue testing and treatment if I wanted to.  At this point, I need to know why his pain is increasing instead of staying the status quo.  Even if we choose to do nothing once we have the information, I still need information. I'm a detailed oriented, need to know kind of person.  Based on Jack's symptoms, I would like to have some blood work done, at a minimum.  It's possible that we won't know any more than we know right now after doing the tests.  But, I'd at least feel better knowing that we aren't dealing with something obvious and treatable that is causing Jack to be so uncomfortable.  I'm hoping to hear back from Jack's doctor tomorrow.  As much as there are upsides to being on hospice, I'm also discovering that access to certain things is subject to hurdles that I didn't have to deal with in the past. It's very frustrating and makes life more difficult at times.  And the last thing I need is for life to be more difficult right now.

I could go on, but being negative just creates negative energy which saps what little bit of positive (and productive) energy I have left.  At the end of the day, all of the people in Jack's life care about him and want to help.  I'm overly tired, sensitive and emotional.  All we can do is press on.  One day at a time.

I want to share pictures of my very special weekend with my very special friends for those who aren't on Facebook, but I'm too tired tonight.  I'll try and post pictures tomorrow, but in the meantime, here is my favorite picture of the weekend - this pretty much sums it up.

A Week of Calm and Connections

Jack is doing okay.  Despite my conviction to cease my "need to wean", I still tried to space out the time between Jack's doses of morphine just a little bit. But, Jack wasn't having it.  So, it's now written in stone - well, actually, it's written on a piece of paper in Jack's bathroom, that Jack is to get his morphine every 4 hours.  No matter what.  Except, between the hours of midnight and 8am, because it's helpful if we get some sleep.  For that 8 hour span, we give Jack a higher dose and, so far, our schedule seems to be working.  And, I'm done messing with it.  Really, I am.

This week has been the first calm week in what seems like forever.  We've have consistency with morphine and consistency with nursing and Jack is having mostly good days.  He's not on such a high dose of morphine that he's out of it.  Although, you can't be on morphine and not be somewhat affected.

This week was also a week of connecting with people who've cared for Jack at St. Louis Children's.  For the first time ever, Jack is having skin breakdown around his trach stoma (for my non-trach friends, the stoma is the hole in the neck where the trach tube is inserted). The trach tube has created a sore in his neck that is above the stoma.  The sore is a ridge in the skin and the trach tube now pulls up and sits in the ridge. I have a picture I could share, but it might be too much information for most of you.  I emailed the trach nurse at St. Louis Children's on Sunday night and I received a call from her by noon on Monday.  Have I told you how much I love SLCH?  She gave me some suggestions and said that what we are seeing is not unusual for a kid who has had a trach as long as Jack has.  It was great to talk with her and to catch her up on what is going on with Jack.

I also sent an email to Jack's former St. Louis pulmonologist, who is now practicing in Florida, to give her an update on Jack. When she emailed me back, she shared this with me:

"Give him a hug for me and know that I am thinking of all of you. I see him every day as I keep a picture of him on my office door." 

Totally made me tear up.  And, I know that she isn't the only former doctor of Jack's who has his picture on their office wall.  It so comforting to me that the people who cared for Jack so many years ago still think about him and hold him dear to their hearts.  That's what is missing here. The doctors here have never connected with Jack - or me.  I get why, for the most part (although, that doesn't excuse this).

Last year, when Jack was inpatient at PCH, I was discussing this lack of connection with another one of Jack's former SLCH doctors and, as I explained to him:

"You have to remember that the connection I have with you and several other of Jack’s doctors is based, first and foremost, on your connection with Jack. The doctors we encounter here at PCH don’t feel any connection to Jack.  Jack is not that cute little baby that everyone fell in love with 13 years ago.  It’s not that the people here at PCH are not good people, it’s just human nature to be attracted to babies, not 13 year olds with neuromuscular diseases."

Anyway, it doesn't really matter at this point. The fact is, those doctors and nurses who connected with Jack so many years ago in St. Louis still feel connected and they still care.  At this point in the journey, I probably need them more than Jack does and, thankfully, they are still showing up for both of us.

Speaking of connections, bright and early tomorrow morning, I'm hopping on a plane bound for San Diego.  I'm spending the weekend with three of my sorority sisters who I connected with online many years ago.  All of our kids are trach kids and three of us are bloggers.  This will be the first time we meet each other in person (except for me and my friend Sarah - we worked together on the TouchStones program at CHOC).  I'm looking forward to a weekend of respite and relaxation on the beach and a weekend of making memories with some wonderful ladies. I know the minute we see each other and start talking, it will be like we've known each other for years.  Because, well, I guess we have.

If you are on Facebook, you'll no doubt see pictures.  For everyone else, stay tuned.

xoxo

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Seriously, who couldn't fall in love with those eyes?!