Friday, October 04, 2013

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.



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

1 comment:

ssouth said...

Enjoy your much needed respite! So sorry to hear about the stoma break down. In our experience that would go from okay to bad very quickly, so best to stay on top of it. Oft changed Sof-wiks and triple antibiotic ointment seemed to help, but everyone had different techniques and advice so I'm not sure which plan worked best. We also put mole skin around the tubing to cut down on friction. It's so true what you say about the connections with younger kids. Never thought about it that way, but I get it. Love you!