Thursday, July 19, 2012

Update

Many of our friends and family members have been asking for an update.

We are still at PCMC.  Bogey is making some progress, albeit slow and stressful.  After several days of guessing and ruling out, the doctors have pinned this hospital visit on tracheomalacia.  He is on a high flow nasal cannula and that seems to help as long as he doesn't have fluid buildup.

His heart seems to be functioning better than when we first arrived 16 days ago.

We have been so blessed to have such great doctors here and they have been in touch with the masters at Stanford (Dr. Axelrod is a saint, by the way...he's helping Ace man my panic attacks...and rule out the theories I dream up as to what is going on with Bogey.  Hey, I've only missed the last 3 episodes of Grey's Anatomy--I know what can go on in the medicine world.  That, coupled with what I read online is a recipe for some, shall we say, "creative?" scenarios.)

We've got a room at the RMD Salt Lake, and it comes complete with $.25 Diet Coke.  I had a nightmare one night that I actually paid $1.25 for a can...not even a bottle...but a can of Diet Coke.  It was tragic.  Thankfully it was only a dream. I'll never be able to buy the cans ever again unless they're on a serious sale.

It has also been such a blessing to be closer to our children and family.  Ace and I are able to trade off being with them and being here at the hospital.  When I went home last week, my kids and I were able to meet Elder D. Todd Christofferson.  It was so funny because when I had my kids shake his hand, they were all "star struck" and Mulligan said, "Hey, I've seen you on TV!!"  It was a very special day, one that I will never forget.  My testimony of the priesthood was strengthened.

The other bonus of being closer to home is that our kids can come to visit too.  When Bogey and Double Bogey saw each other, they just started cooing and smiling at each other.  It was the cutest thing ever.  They have sure missed each other.  It was also good for Gimme to see her other baby brother, and give him some love.


So, now the goal is to wean the high flow to 4 or less (currently we're sitting at 7), go to oral meds, and bolus feeds...oh, and in doing all of this, his lungs need to stay open.  We're still needing prayers.

(p.s. I love that I can ask for prayers and know that so many of you, our friends and family, are turning to our Heavenly Father and asking for His blessings on Little Bogey.  That means so much to us.  I wish I could explain in words how much that helps...your prayers are being heard, and we are feeling the love. Thank you, a million times over.)

3 comments:

Wendlelyn said...

Thinking of and praying for you all daily.

The Story of Life said...

Wow, you are amazing. I can't believe all that you guys are going through. Prayers are heading your way!!

Justin and Kristin said...

This seems like such a hard road and long too. I hope he keeps doing 'okay' and only gets better quicker, so your family can be whole again!