Saturday, December 31, 2011

Another SLCH Article - "From the Bedside"

St. Louis Children's Hospital started a new feature on their website called "From the Bedside" - personal stories about patient care at SLCH.  One of Jack's former home health nurses, who is now the manager of Same Day Surgery and the PACU at SLCH wrote a piece for the website.  Jean is a pretty remarkable person herself with her own inspiring story, so it's pretty special that they chose her and that she chose to write about her relationship with Jack and our family.  I wasn't told that this article had been published, I just happened upon it when I was looking around the SLCH website.

What I Learned From Jack

Tuesday, December 27, 2011

December Recap

Wow, where did the month of December go?  For that matter, where the heck did the year go?! We've been busy this month with lots of opportunities for Jack to get out and about.

Earlier this month we attended the Ryan House Holiday Party where they had "snow" (a machine blew out soap bubbles.)

Jack has the reputation at Ryan House of being a Beatles fan (Mark is a big Beatles fan, so he put a lot of Beatles songs on Jack's iPod).  The harpist remembered Jack and played a few Beatles' songs for him at the party.

Jack's gifts from Ryan House

Last week I flew to Southern California for the day to participate in a video that is being produced by Children's Hospital of Orange County (CHOC) to promote the TouchStones of Compassionate Care program. My dear friend Sarah (Keturah's mom from the Trach board) is on the family advisory committee at CHOC and she really pushed to get the hospital on board. For the video, they chose several sections from my "Dear Future Physician" letter and several moms each read a section for the video.  A CHOC physician was also featured in the video, as was Keturah.  The plan is to roll out the whole program (video and TouchStones) in February.  I've been invited to attend the roll out in February and I'm so honored to get to be there to see it happen.

The group of CHOC moms and Keturah who participated in the video (and me, of course) 

A few days before Christmas we had our annual family cookie decorating party.  We've been doing this for a few years now and it's become quite competitive.  This year there was a lot of pre-decorating planning involved and one sister showed up with her own special decorating tools! It was a lot of fun and many thanks to all of you on Facebook who voted.  :)

The winning cookie 
(apparently a Pinterest idea)

A close second

A few days before Christmas, a woman I work with told me about a rescue dog her husband was dropping off at the animal shelter.  She had her husband (who works for animal control) bring the dog by the office first so I could see him. The dog was calm, sweet and had really sad eyes that said "take me home". So what could I do? Ugh! I called Mark, he took the kids down to the shelter to meet the dog and they decided he was a "yes".  We are now the proud owners of __________.  We don't have a name yet that we can all agree on.  It's changed three times already.  I'll let you know once we decide.  So far, he's working out well. He's quiet and calm.  A perfect fit for our family. (I can't do dogs that bark a lot, jump a lot or that need to be housebroken.)  Unfortunately, we've already forked over a chunk of change since we got _______ because he's got complications from being neutered (performed at the shelter before we could take him home).  Vet bills less than a week into dog ownership is not what I planned, but, then, what ever goes according to plan, eh?

Mary and our dog ___________

Poor Mary has been working her tail off since she got home from college.  She's working at Target at the guest service counter. You can imagine how nice people have been to her the days before and after Christmas (not!)  They scheduled her with full-time hours, so she's not getting in much relaxation during her Christmas "break".   For the most part, she's not complaining as she needs money for lift tickets and snowboard rental when she returns to school in a few weeks. 

Next week, I'm taking Jack to see his pulmonologist to talk about putting him on a new ventilator.  This vent - the Trilogy - is supposed to be more sensitive, making it more responsive to the patient's own breathing.  I talked with the RT at our DME company and she said they are using it quite a bit with patients here in Phoenix, so I thought we'd better check it out.  It's a smaller vent, doesn't have external peep like the LTV and has longer internal battery life. The only downside is that Jack has to go inpatient to trial the vent.  I'm not excited about a PICU stay, but I suppose I can tolerate it for one night, especially if Jack is not there because he is sick or has had surgery.  I've definitely come a long way from someone who absolutely hated the vent to someone who is now shopping around for a new one!

That's the recap.  For those of you on Facebook - this is mostly old news.  To my blog followers -thanks for checking in and thanks for caring.   I wish all of you a . . . 


Here's to 2012 - may it be a good year for all of us. 

Saturday, December 24, 2011

Merry Christmas

Merry Christmas to all my wonderful friends and blog followers. I promise an update soon.

Wednesday, December 14, 2011

"Knowing Jack"

Jack's story finally made it onto the St. Louis Children's website. I contributed to the writing of the story and I'm very happy with the final version.  It highlights what is special about Jack and what is special about St. Louis Children's Hospital.  What a great gift for me this Christmas season to see Jack featured in a positive way and by a place that has played such a large part in our lives. 

Here is the link to the story:


Friday, December 09, 2011

Saturday, December 03, 2011

"Opportunities" Revisited

Just wanted to share that my Blog Thought "Opportunities" was published on the Cure CMD website.  They retitled it "A Mother's Touch".  Find in HERE.  Kind of cool!

Friday, December 02, 2011

A Little Bit of Deja Vu

Update: My dad was released from the hospital today (Saturday).  Hopefully there won't be any return visits in the near future.


Apparently the dancing girls were a bit too much for my dad because during the drive back home from Missouri he suffered a stroke.  The event happened when he was in his hotel room in Amarillo.  Now, Amarillo may be the best place to find a good steak, but it's definitely not the best place to have a stroke!  I can joke about this now because my dad is mostly okay.  My dad's traveling friend (Ben) called the ambulance that took my dad to the hospital in Amarillo.  They said he was having TIAs and discharged him from the ER within four hours.  My dad and Ben caught a few hours of sleep, got up the next morning and then Ben drove like a bat out of hell to get my dad home and out of his care! The plan was to follow up this week with the cardiologist because my dad is having issues with an irregular heartbeat.

Fast forward to Wednesday night and my dad had another episode where his right hand became numb and weak and the right side of his face drooped.  The event comes on quickly and passes fairly quickly and my dad seems to recover in about a half hour.  So what does my dad do after he suffers this event on Wednesday?  Why, what any 77 year old health nut would do - he gets on his exercise bike and rides it for 47 minutes!  Then he proceeds to have another episode.  My sister, who is at the house with my dad convinces him he needs to go to the emergency room.  My nephew drives him there. My dad walks in and tells the front desk he thinks he's having a stroke and they rush him back and within a matter of seconds there are seven people in his room checking him out.  Hint: if you find yourself in the ER and want to bypass the eight hour wait in the waiting room ... just tell them you think you are having a stroke.

They admitted my dad to the Neuro-ICU - same place my mom ended up on more than one occasion.  Not a fun place to be and just a little too much deja vu for us.  They determined that he did in fact suffer a mild stroke and they said within a few months he should be back to his "normal" self.  The "stroke team" attending was flabbergasted that they discharged him from the ER in Texas. Her comment was "well, you are very lucky to still be here!"  He was supposed to be discharged today but he went and had three more episodes while waiting to be discharged. So, they are keeping him for observation.  He is being managed by the stroke team at Barrow Neurological Institute - about the only medical facility in Phoenix that is ranked nationally.  I'm comfortable with the medical team  - at least I'm comfortable with the attending.  How comfortable can you really be with a bunch of residents? As we head into the weekend, you know nothing will get done as far as figuring out what is going on.  They'll monitor him and if he continues to have these episodes, hopefully they'll come up with a plan on Monday.  If he makes it through the weekend without any episodes, they'll probably discharge him.  My dad is frustrated because (1) he doesn't like being confined to a hospital bed; and (2) he wants to know what the heck is going on and how to make it stop.  Our thinking is, if he's going to have more episodes, he needs to have them in the hospital, not at home because he'll just end up back in the hospital anyway. So, we wait.

Have a fabulous weekend my friends!