Thursday, September 12, 2013

How We Are Doing

So we are two weeks on hospice and I think it's fair to say that Jack is doing much better than his mother.  Then again, he has unfettered access to morphine and, well ... I do not.

Jack is doing better. Being able to control his pain and allowing his body to rest has really helped bring him back from that far off place he escaped to when he was trying to deal with the pain.  He is much more alert and attentive these days and is even sharing smiles on occasion. I've been able to wean his morphine down from the maximum dose every four hours around the clock to PRN with a lower dose.  However, every time I think I might have him weaned down to needing no morphine, he lets me know that is not the case.  He's still needing it a couple of times a day.  The million dollar question is why? I've slept very little the last two weeks because I'm relentlessly haunted by the "what ifs".  What if we are missing something obvious? What if whatever is causing Jack's pain is a simple thing that can easily be treated? What if he was being seen by his St. Louis doctors instead of the doctors here?

This, my friends, is where faith comes into play.  Despite all the "what ifs",  my gut tells me that the decision to transition Jack to hospice is the right one.  And, I believe with all my heart that my "gut" is God driven. If I can't believe that, then I've got nothing to go on and I desperately need something to go on.

Being on hospice does come with a few perks.  For one, the coveted morphine is delivered right to your door - no trips to the pharmacy in the middle of the night required.  Your hospice doctor also makes house calls.  I had scheduled an appointment with Jack's pediatrician/palliative care doctor awhile ago, but because Jack is on hospice, she came to the house yesterday - along with the hospice nurse and the social worker.  A bit overwhelming, but also much appreciated and welcomed.  It's a bit of an adjustment to get used to so many people being there for you. I mean really being there - in person, for you.  It's uncomfortable and good all at the same time.

As for me, I used to think I had a pretty good handle on juggling the whole medically complex kid + regular kids + working full-time thing.  Not so much anymore. I completely forgot Eric's parent-teacher conference last week.  But, all I had to do was throw out the "Eric's brother was transitioned to hospice" line and it was all good. Another perk of being on hospice - people cut you a lot of slack.  And lately, I've needed to be cut a lot of slack because I'm missing a tremendous amount of work due to lack of nursing coverage.  The upside to the lack of nursing is that I'm getting to spend a lot of time with Jack - just mom and Jack time.  It's been nice ... and a lot of work.  It's been years since I've done a trach change, changed out the vent circuits and other equipment that needs to be changed out every few weeks or even given Jack a bath, because his nurses usually do those things.  But, I so appreciate this time I'm getting to spend with Jack that I otherwise wouldn't have. Life has a way of working out how it's supposed to, even if it doesn't seem like it at the time.

Mark has been out of town all week and won't be home until late Sunday, and, as much as I appreciate all the quality time I'm getting with Jack, I'm in desperate need of some sleep.  So, Jack and I will be heading to Ryan House this weekend where I can sleep and he can get the love and attention he deserves.

Well, that's the update from here. Sorry for the long break in blog posts. It's difficult to put all that I'm feeling and thinking into words, especially when I'm so darn tired.  Most days, I seriously have to remind myself to BREATHE.  I do feel like Jack is in a stable place at the moment. We are able to control his pain without snowing him - I'll take that.  One day at a time.



Just some pictures of Jack .... Just because.

Circa 1999  (~ 9 months old)

Circa 2000  - Jack is in his stander and Elmo is strapped to the oxygen tank stand :) 


Suzanne Musial said...

Ann, I have been meaning to message you and let you know that I have been thinking of you and your family. I have always admired how well you advocate for Jack, your perspective on difficult times and your sense of humor - which I think is so important for parents like us. I also appreciate your candor about doing more of his care. That mom guilt can creep in easily when we depend on others to help care for our children though we know we just can't physically do it all, all the time. It's always nice to know you're not alone in this journey and I appreciate all you are and all you have done for families like ours. Sending our love and hugs, and so glad to hear Jack is feeling better.

ssouth said...

I'm choking in the meaningful comment department, but I love the vintage Jack pics. May love, and light, and breath, and sleep come quickly, my friend.

Dana said...

Hope u get the needed rest this weekend. You're doing a wonderful job. He is so blessed to have u. You're in our prayers.

Sarah said...

I don't know why this post has my stomach in my throat. Maybe understanding a lot of the changes you are going through with the nursing and having to do full time hands on care for him. Maybe because I know how you feel. Maybe because I just adore Jack to pieces. I'm glad you will be able to head to Ryan house for the weekend. One thing that's always do everything in your power to make sure everyone is taken care of as optimally as possible. If there was ever a "world famous balancing act", it's you. Love you my friend! May the next few weeks fly by...then come to an immediate halt for 3 days! Hugs!

Ryan Yaussi said...

I stumbled upon this blog while searching for a poem I once read about a Willow Tree. I am so moved by your story and just wanted to say that my heart is with you. Your courage and compassion and spreading into the world. Much love from Alpine, California.
Caity Yaussi

Christy said...

Oh Ann. I don't even know what to say. I'm glad that this transition has allowed his body to rest. But it sucks that this is what is required. I'm so sorry. I hope you got some good rest at the Ryan House. And for the record - I don't know how the heck you work. My brain is mush. I know you're tired and could use a little morphine yourself, but I think you're wonderful. Just wonderful.

And I can't wait for October! I feel like a groupie. ;-)

Love ya,
Christy xo

Susan said...

It's so hard to know what to say. I am SO glad that Jack's pain is under control. I'm so sad that it's so difficult for you right now. And so grateful that you have this time with Jack. And I'm relieved to hear that you are getting support. House calls even. XOXO.