BI-pap The management techniques that we use for Kalair are not a cure for SMA and we know
that. When she was diagnosed, all of the data told us that she was going to suffer, and die soon. In
that order, I read heart-wrenching story after story, and virtually none of those babies just slipped away in
the night. At that point, I almost completely believed the doctors that she was going to die. (Almost, accept
that I had this little bright eyed, strong willed angel ordering me around that didn't seem inclined to go
anywhere) I couldn't just accept that she was going to suffer and die without trying to find a way to extend
her good time and greatly reduce her
suffering. The management techniques that God eventually laid at my feet (our local hospitals in Kansas City did not offer anything but hospice) have had the wonderful side effect of making Kalair so healthy and comfortable that we can see that she may indeed live a very long life and get to stay here and wait for that cure that seems so near and yet so far away. Even if the cure never comes, Kalair continues to let us know that she is living, not dying. She is here living her life; none of us knows how long we will live, and we don't know how long Kalair will live either. I always say, that the BiPAP, the In/Ex, and the diet make Kalair so comfortable and healthy, that should she be one of the ones who's heart stops in the night, I will know that these techniques are the reason that she was able to live such a comfortable life and go so peacefully when her time came. Even if I knew for sure that her heart would stop soon, I would choose these techniques to avoid trauma and suffering. Your doctor is right about one thing, BiPAP won't save SMA children if their time has come, but what she does not understand is that it can save them soooooo much discomfort while they are here. (At least she did acknowledge that they would feel better in the daytime if they rested on BiPAP at night) One of the side effects that often occur is that they would live a longer, as well as more comfortable life. I don't want you to be misled into believing that most of these kids who are living without respiratory support have a good day, kiss you good night, go to sleep and slip away in the night. The majority of them seem to slowly suffocate through underventilation and aspiration. When these children start to suffer mightily, they are usually put on 24 oxygen and morphine to try to reduce the suffering. (Even though these things won't save them when their time comes either) They often go on for months this way. The dying process is often not quick and easy on them. The ones that go the quickest are usually the ones that are in the hospital with a major pneumonia, fail extubation, and the family decides to do no more and take them off of the vent. If a child does not have a major pneumonia, things can go on for a long time. I believe that you may have been misled into thinking that doing nothing further for him will be easier on him. That said, if you "as a family" have made the decision that you are going to "let nature take its course". I will respect that and not try to push anything on you that you don't want, but make sure that you are clear about it please. Sometimes the folks who live everyday with NIV, or who have trached children, get a reputation for "pushing" their beliefs on people who don't want to go that route. I think that this mostly comes from the family often not being comfortable clearly telling their friends that they have made the decision not to intervene further and don't want to hear anymore about the management of SMA and have decided that it is the child's time. If you have reached that point, I still send you love, and you still have my prayers.
Erinne went through a horrific experience the summer of 2001, and she was at death's door more times than
could count. Everything that could go wrong after a surgical procedure did. Her lungs totally quit functioning
and even a ventilator could barely sustain her. The doctors were really at a loss as to what to do with her --
her SMA coupled with the lung failure left them grasping for a cure or a treatment. Fortunately, for Erinne,
they just took her hour by hour -- the only goal was to survive through the next hour. I had my SMA family
supporting me and giving me suggestions. They encouraged me to take charge of Erinne's care. Once I started
telling the doctors what I wanted done with Erinne, and began following Dr. Bach's protocol, Erinne turned the
corner. She was hospitalized for 101 days. She was in the ICU 94 days and on a vent for 85 days, with 3 failed
attempts to get off the vent. They wanted to trach her and, knowing what Dr. Bach said about it being
unnecessary to trach type 2 kids, I stood firm and said no. I will tell you, it was a VERY lonely road I
walked during those dark days. I did not have the support of the medical community behind me 100% of the time.
I prayed A LOT. I could not accept that God's Plan was time to take Erinne to His Heavenly Home. I believed
(and still do) that Erinne had so many lives left to touch that her life here on Earth was not finished yet.
Now, despite all of that, Erinne is a happy, bubble kindergartner. She loves to go to Chuck E. Cheeses. She loves to sing in church. She is in a power chair, but that does not faze her, or the children in the neighborhood as she drives up and down the sidewalk. She has a MEANINGFUL, fulfilling life. Please don't let a doctor tell you to not use medical intervention to help your child. Erinne got a feeding tube last summer because she could no longer take in enough calories to help her heal. The only regret that I have about the feeding tube is that I wish I would have had it done sooner! She is stronger, after getting the tube. Now she eats just for enjoyment and she eats what a typical 5 yr. old eats: chicken nuggets, pizza and French fries. I give her the special amino acid diet supplements, vitamins and all of her meds through the tube. When she gets sick (and she has had pneumonia 8 times!) she does not get dehydrated because I can push the fluids through the tube! Listen to your heart -- you know what is best for your child. Having SMA is not a death sentence. These precious kids can live a fulfilling, meaningful life.
Brandi- She is the only child at her school who is physically disabled at all ... I fought like heck for that! Our school system likes to put all of their "special needs" children in one school and I just stood up and refused. Unfortunately, I have been the only one to do so, otherwise Jensen would not be the only child in a wheelchair around there. So they knew they had to do what I requested since it was an accessibility issue and not one of medical (like needing to be cared for or special medical equipment or medical needs) or of her mental capabilities. I told them that if Jensen was getting to the point that she was unable mentally to keep up with her peers then I would agree to move her to their "special school", but I refused to move her just for THEIR convenience. The summer before last they made a restroom handicapped and made ramps for the music and art rooms. I was so happy! I won!!! But not without a bit of a struggle ... and let me just reaffirm what I've heard on here before ... THE SQUEAKY WHEEL GETS THE GREASE!!! I promise ... fight for what you think is right.
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