More answers....

Again 2 that I can answer together.
Great questions! Please know that ANY question is always welcome. I don' want the tone of this to seem like I am defensive in any way. I get questions like this a lot, and I am answering them in a more matter of fact kind of way than anything else. This will be a long one folks, get comfy.
------
I love that you are doing this. ((HUGS)) Why did you feel getting a Vent was the best option for Emma? I ask because we were not encouraged to do that for our son. Having "met" Emma online, it doesn't seem as scary as it did when we first heard about vents.
-------

I come across your page from my friend's blog. Do u think there wil come a time where you need to put Emma into a nursing home where she can be better cared 4? Why does she seem to be bad compared to most people with CP? Many can walk and talk and have jobs and families. Why does she have a tube in her neck and a vent? Aren't u unfairly keeping her alive with artifical means? Is she even aware of things or is she just a veggie?

-------

I will do the second question first, as it will help explain the first one a little too.

I am sure when I am 90 years old or something and can no longer care for Emma on my own or with the help of my husband then a nursing home might be an option. We have always said if we are physically able then we will do it, becasue she is our child and if we didn't want the responsibility of parenting we would have never had children. Just because she has extra things to do doesn't mean it doesn't fall under the category of parenting. They do have a wonderful children's center about 30 mins from here, that I have heard great things about, but right now that is just not an option for us, we like to keep her with her family where in my opinion she belongs.


Why does she seem so bad compared to other people with CP? To me she doesn't. I know lots of people with severe CP just as bad if not worse than Emma. But you are right some very lucky people have it mildy. The way CP effects you can depend on lots of things, one being how the injury happened, and how severe it was. Emma went with very little to no oxygen for atleast 3 hours in the womb, that is how long it took me to get my "emergency" c-section when the found she was in distress (Yes, we did try a lawsuit, and no it never made it to court or settlement, long story I won't get into in this already long post)

She has the trach because the muscles that help her swallow do not work, so she fills up with secretions in her mouth that block her airway. The tube bipasses the mouth so she can breath. She has the vent because on occasion she stops breathing on her own (more on that in a min)

I don't feel we are unfairly keeping her alive at all. What would be unfair is to not help her. I had children to care for them, and do everything in my power to make their lives here on earth a happy, safe time. That is what I feel like I am doing. Emma can breath on her own, she can breath on her own for days, weeks, and even months at a time. She just forgets on occasion and the vent is there to help her for that. She is on it 24/7 because those spells are unpredictable, they could happen after she breaths on her own for 10 seconds or 10 weeks, just can't pinpoint when it will happen. To not give her the vent, that would be like saying an adult shouldn't use CPAP for sleep apnea at night or give an asthma patient an inhaler. It is not our place to give up on her life, its my place to help her fight. Only God can decide when she has had enough. Its just my job between now and that time to provide her with the best life I can.

No, she is not a vegetable. She has brain function. She is aware of her surrondings and what is being said to her. She just can't talk or walk or move much at this point because the portion of her brain that was damaged is what effects her muscles that make her walk and talk. The reason for her apnea is still not know as her brain stem shows up as perfect on all the scans. She might not be able to communicate with actual words, but she talks to us with squeeky piegon sounds through her trach, she cries when she is in pain, she makes cooing noises when you tickle her cheeks, she likes to watch tv and play barbies with her sister and will scream as loud as she can and cry if you move the picture of her angel boyfriend she likes to stare at.

Why did we think the vent was the best option for her?

Well to tell you the truth, at first we faught the vent. So much that we were denied a stay at a local hospital because we would not follow their recommendations of putting her on one. She would stop breathing and we would have to rescue breath for her. She died 2 times and had to have CPR for full arrest. The reason we faught it was it seemed like a death sentence, if we gave in on the vent it just seemed so final that she would always be on it, and a whole bunch of other emotions involved I can't really try to explain right now. But the doctors kept pushing to put her on one, very unsual since many doctors tell you to let go. But they saw she had brain function and a quality of life that a lot of disabled kids aren't lucky enough to have, and they kept suggesting it to fix what was wrong with her. She is a great canidate for the home vent program because she has great lungs, no changes need to be made to the vent on a regular basis and she uses little (NONE) oxygen and that doesn't change. Finally No more trips to the hospital every other week, no more CPR. No more fear if her next breath would be her last. I have no idea why we faught it for so long, I feel stupid for doing that now. Its just another machine, one more thing to lug around, but it is also her lifesaver.


Ok so there are your anwers, thank you so much for asking them. Got more? Post them, I love having something to write about, and I love educating not only those with the questions but all our readers. Thank you!!!

Emma playing with her sis



Emma making a really mad face and yelling because her Momma2 (Donna) gave her loud kisses and she didn't like it.