Monday, March 05, 2012

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)!


Gr8Life said...

That is wonderful that Apria is being so helpful!
What a very stressful transition it's been.
It's a good thing you are so observant and obviously a wonderful mother to notice that although his stats were o.k. that he wasn't himself.
Sometimes it is so hard to put your finger on what is not right. It is really a tough guessing game when they can't tell you anything! I so wish my kids could at least talk so I could know if I'm guessing at the right things. It would make it SO Much Easier!
I got really tired of the Pulmonologist we had been using. So ast year I changed over to Dr. Arparna Rao at PCH. I REALLY like her. She has been wonderful for us. It is really nice to know your Dr. cares.
I hope you are able to relax and enjoy your upcoming spring break. I hope it works out well for all of you.
I have to say that Eric has impressed me! What a wonderful little man that he would be willing to give up Birthday gifts for donations to the Ryan House! What a giving, kind and good boy you are raising! Good Luck at the Birthday Party ;-)

Susan said...

Apria being WONDERFUL?! Well that is something! Hooray for you for figuring out the problem! I hope Jack continues to do well on the vent. I'm not sure when your Spring break is but I hope there is enough time before you leave that you feel more comfortable so you can relax. You deserve it!

10 years! Happy birthday to Eric! You crack me up with your comment about the party. Only crazy people do the kinds of things I do. You're too smart to get yourself into that situation. I'm sure the kids will have a blast at whatever "germ infested place" Eric chooses! I love that he wanted to do the donations to Ryan's House. That is so sweet!

Christy said...

I'm glad you got it all worked out. You are a smart cookie, my friend.

I totally agree with your disappointment in the pulm. But I'm really glad that Apria came through and that the RT has done a great job and cares. That's huge.

I can't do birthday parties, either. And having parents I don't know well in my house feels really weird. I'm lamer than you - I take them to a playground and rent the shelter thingy. I'm all about working some energy out of the kids. Run them I say!

Happy 10th Birthday to Eric!