Whewww...what a day/Kira update

kirafaesmom · #1 03-12-2009, 08:47 PM

I don't know about Kira, but I'M exhausted! We spent the majority of the day up at DCH; first to see our pediatrician, then to see the ENT. Today was our "maiden voyage" without warm mist. I couldn't bring myself to completely leave it behind, so I had it in the van and used it to and from the hospital. I'm a little nervous as the last time Kira was on the HME, she plugged horribly. Recently though, her mist had come undone and she seemed to do well, so figured what the heck....lets try to lighten our travel load a bit! After a day in clinics, here's the result. 1) We got rid of the GJ tube and now are back to a G only...yeah! 2) Having the pediatrician consult with the ENT we were SUPPOSED to see, but didn't....and to follow up on what seems to be some moronic information from the ENT we did see a couple of weeks ago. 3) Got Kira's stitches taken out around her trach stoma (none of them disolved on their own). That was NOT fun for Mom...glad Dad was there. She bled quite a bit, but otherwise handled it rather well. 4) Came up with a plan to switch to the HME during the day utilizing saline nebs instead of being hooked up to the mist all day long....yipeeeeee! Now if Kira will just cooperate......We don't have to go back to the ENT for another 6 weeks. He said her trach looked awesome. Now if we can keep dialing in her seizure control meds, we'd be doing great!

I met the most amazing foster mom as we were leaving the clinics today. They currently have two full care kido's, and they only live a couple of miles away! What an amazing woman; "retired" and moved here from England, only to realize she couldn't stop doing what she loves! I would have loved to talk to her longer, but we were at the tail end of our day and Kira had been off mist for HOURS and was starting to sputter quite a bit after the suture removal. I did exchange info with her though.

babybear · #2 03-13-2009, 07:46 AM

Well, it sounds like you had a pretty good day. Kira sounds like she's doing really well.

I'm curious about the mist, we were told that portable mist is a "no-no" since water could get in the trach while I'm driving. What kind of apparatus do you use? Also, do you find that the saline nebs help? I've just started using them with Gabriel, but I haven't done enough of them yet to see if they really work.

JWorthington · #3 03-13-2009, 09:46 AM

Wow Michelle, sounds like an exhausting day. Sounds like Kira is doing ok and good that you got a new friend, it always helps to have someone local to call on.

Julie

TommysDad · #4 03-13-2009, 10:05 AM

Sorry to hear about the stitches not coming out on their own, but all-in-all, it sounded like a wonderful day out and good news to boot!

Let us know how she tolerates her HME. She's going to LOVE her freedom! Watchout mom

~Maggie

kirafaesmom · #5 03-13-2009, 01:40 PM

Quote:

Originally Posted by babybear

Well, it sounds like you had a pretty good day. Kira sounds like she's doing really well.

I'm curious about the mist, we were told that portable mist is a "no-no" since water could get in the trach while I'm driving. What kind of apparatus do you use? Also, do you find that the saline nebs help? I've just started using them with Gabriel, but I haven't done enough of them yet to see if they really work.

We use the same set up as home as we do "on the road" with one exception. At home, our FisherPaykel is hooked to a CPAP to provide the air flow.(no compressor). On the road, we load up the FisherPaykel into her luggage on wheels, plug it into the battery we purchased for it and hook the O2 up at 2 liters. In the beginning, we didnt have a choice as she would seriously plug after even 20 minutes off the warm mist. Now, I think we are far enough post-op to start messing with it. So far, we've not been off the mist for long, so haven't needed the saline nebs much; but whenever we did need to break up some plugs, the saline seemed to work really well inbetween albuterol nebs. We especially used the saline nebs when her seizures were bad this last week and she did very well. So well in fact that now I'll start with a saline neb, and if it's not enough to open her up then I'll do a breathing treatement. I'll let you know as we wean off the mist during the day.

LKN · #6 03-13-2009, 01:56 PM

Sounds like a long day, but a pretty good day. I hope you can all get some rest!

kirafaesmom · #7 03-13-2009, 02:22 PM

Quote:

Originally Posted by JWorthington

Wow Michelle, sounds like an exhausting day. Sounds like Kira is doing ok and good that you got a new friend, it always helps to have someone local to call on.

Julie

I cannot WAIT to be rid of the mist during the day! I've been so nervous about going away from it though. Nothing like an ambulance ride to the ER with serious plugs to make you think twice about going without mist! However, I figured it was about time to put my big girl panties on and start at least trying her off it. As far as her trach has gone, she's done amazingly well...far beyond my expectations for sure. Her trach actually makes her MORE stable than before, so I'm looking forward to getting her (and ME) out into the community more....