Vent Update

I think the words "if it's not broke, don't fix it" might be appropriate when it comes to switching Jack to a new vent.  The transition has been anything but smooth.  We went back to the pulmonologist last Wednesday for Take 2.  This time, we had all necessary pieces (for the most part) for the vent and we kept Jack's mode of ventilation the same as it was on the LTV.  He seemed to do better, although his heart rate was still a little high.  After hanging out at the pulmonologist's office for a few hours, we headed home.  Through the night and the next day, Jack was okay - sats okay, but not himself.  I was ready to throw in the towel and say forget it.  Then, the light went on when I noticed that Jack's breath rate on the vent didn't go above the set rate - which meant the vent was not sensing his own breath and was giving him no support whenever he took his own breath.  Jack's respiratory muscles are so weak that his own breath is very shallow.  The vent should sense when he takes a breath on his own and kick in and give support with the breath (in other words - it should compensate for Jack's shallow breath and blow in enough air to make it a productive breath.)  Imagine taking a breath and not getting any results.  No wonder Jack was stressed out.  I conveyed my observations to the RT at Apria (who has been absolutely WONDERFUL) and someone came out and adjusted the "trigger" mode on the vent and it was instantaneously better.  Jack had a good weekend and seems to be adjusted to the vent now.  His heart rate is still a little bit elevated, but it's hard to say whether it's related to the new vent.  At this point, it's a guessing game which is made more difficult by the fact that the main character can't articulate how he is feeling.

I have to say, I'm disappointed in Jack's pulmonologist. He has not made one phone call since we left his office on Wednesday asking how Jack is doing.  That bothers me - a lot.  This is life support we are talking about, I'd think you'd want to know how your patient is doing.  The doctors in this city never fail to disappoint me.  *sigh*.  That said, as much as I complain about Apria, they have been fabulous with the transition - especially the RT.  I've texted her on her personal cell phone, emailed her and called her relentlessly this last week and she's been more than patient with me.  She truly cares.

Added to the stress of switching Jack to a new vent is knowing that we will be leaving him at Ryan House for six whole days while we head to California for Spring Break.  The timing for making the vent switch wasn't well planned on my part.  I am scared about leaving Jack for that long, but everyone keeps telling me I have to try it - that I won't know if I don't try it.  But, it's so very hard.  Two of Jack's nurses and several of my friends have all agreed to check up on Jack while we are gone, so that makes me feel a little better.

In other news, my "baby" turns 10 years old next week.  Hard to believe that it's been almost ten years since we made the move from St. Louis back home to Arizona.  Eric really wanted a birthday party with his school friends this year.  We agreed, but unlike my super creative friend Susan, I'm not hosting the party at my house.  Nope, I go all out and pay lots of money to some germ infested place where the kids can jump and bounce for an hour and then eat greasy pizza and sugar laden cake.  Lame, I know.  But, Eric did choose the place and he is thrilled, so it's all good.  I even convinced Eric that it would be a good idea to forgo gifts from his friends and, instead, ask everyone to make a donation to Ryan House. Surprisingly, he was perfectly okay with it.  Now, I just have to psych myself up to socialize with parents that I feel so disconnected from.  The party is Sunday.  Wish me luck!

That's the latest and greatest from here. Have a fabulous week my friends.

Jack at IKEA - looking happy (and red-faced)!