Living with Trache

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> just trying to call the spade as I am seeing it

Exactly what we need, thnx!
 
texastc thank you. We would prefer you call the spade!

I feel awful asking, but isn't TT husband caring for her too?

If you can spare the time to give some regular short updates on this thread about how things are going it will be enormously helpful to so many. Yes it's only one person's experience, it is so different for others. But that's why any amount you can write about the journey of adjusting to and living with will be so important. We don't have many vented PALS on this site, and so far there have been some very different experiences for each one. So the more information we build up here of the way it may be for each person, the more help we are to future PALS until we hope one day this site is abandoned because a cure is found. Until then, we are the best source of the truth about living with this monster there is.

Give TT a big gentle hug for me!
 
Tc is Tracy's husband Tillie. TC thanks for sharing. It is helpful and we care about how you two are doing sending best wishes
 
OMG I had it mixed up and thought TC was TT's sister!

:oops::oops::oops::oops::oops::oops:

Thanks Nikki!
 
We are in the hard part, where the stoma is sensitive and every motion makes mucus. No pain, just mucus. They tell us that this will improve over time. Just be patient.
 
Getting Gabapentin for spastic muscles. Chest and arms tigthten up and disrupt my sleep.
 
Hope the hard part doesn't continue and start feeling better asap.

Take care,
Brad
 
Hugs Tracy you are one brave lady and I truly hope this 'hard part' is over soon and you start to really feel all the benefits. Thanks for updating us, keep it up!
 
hope this all settles down for ya tracy and you get comfortable with all the new changes, sending good energies your way and also to TC your a great guy! love ya chally
 
still hanging in there. thanks chally. still having a lot of secretions, suctioning...rough go of it. the suctioning takes the air from her lungs every time...very tiring...over and over and over. shes being a trooper for sure.
 
Get an ambu bag and give her several good, deep breaths in a quick break if suctioning is taking longer than she is comfortable with. Do the same after suctioning to help her get oxygenated more quickly than the BiPAP can. Waiting for a machine breath can seem like forever when you are deoxygenated. A hint for caregivers: You may have been told to hold your breath while suctioning in order to guesstimate how long your PALS can go before needing air. Wrong. The closest you can come to Tracy's level of oxygenation is to completely exhale first, and that won't account for the fact that she is not only not inhaling but is having any remaining air/oxygen suctioned out.
 
she is not on the bipap during the day. we make the suctioning quick..havent timed it but prob 5-10 sec max. o2 not dropping below 90 during but heartrate up to 100 or so...minor trauma she calls it... were told to hold breath but thats not fair i dont think...i can hold breath pretty good...
keep em coming...im learning!
 
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