Quality of Life

The new buzz word of 2000??? So what does it really mean? I think it's all relative.  You can put ten families in one room and I think they would all define that differently b/c it is dependent on the situation.  This is always the statement drs. use when they are talking to parents of kids like mine.  At times it can be really hard to define b/c the boy's quality of life often get meshed with my feelings of "saving' them b/c I'm so afraid of losing them.  So it is a constant head check of whose quality of life you are thinking of.  I'm not sure if I'm even making any sense but bottom line, it's so so freaking hard.

That being said, I have had the whole spinal surgery on my mind constantly. Since our last hospitalization I felt like "how could I possibly let me kid die b/c he is running out of lung space, I gotta do it" Since my decision though I find myself waking up at night in fear of losing him b/c of my decision and having to live with that for the rest of my life.  Well on Monday, we had a big appt. with the Pulminogist that was supposed to seal the deal in my decision.  But it was total opposite, but for the better.  First of all, the back story is I previously changed drs. b/c I just did not like her views at all.  She ended up leaving the country for a yr for work and recently came back.  Since Avery is part of her home bound program I had to see her.  Needless to say I already had it in my head what she would be saying (no back surgery and to trach him). Turns out giving people a second chance worked out.  First off, she was upset with how much time he has been spending inpatient and that was her first goal of change.  Her belief is that when he goes inpatient the teams are too afraid to make changes and so what we have been doing for the past yr has not been working so time to make major changes.  She completely changed my view on her already!! Obviously she is not afraid to rustle any feathers.  My kind of girl...

Many of Avery's meds we eliminated. yahoo.. With kids like Avery once they acquire a medication they pretty much own them b/c people are afraid to change them.  Well not her.  She got rid of most of his nebulizer treatments which are so exhausting on him and may not even be effective.  She changed it to just dou nebulizers three times a day.  Much easier.  Something nobody else has done is look at him as a whole.  She combed through his 50, 000 chest X-rays and saw how wet he is on all his X-rays lately.  When he is inpatient they always say that they look fine.  Apparently not.  So she prescribed lasix by his tube twice a day and kept his PRN IV lasix dose for when he is very wet.  Whereas most drs. are busy trying to cover their own asses and don't want us using them.  So instead my kid is drowning, great.  Also she totally agrees with my NO trachea stance, YAY!!!! She also said that while she is not sure the surgery will be a big fix for him and it has ALOT of risks, it's still worth seeing the specialist and seeing what he recommends.  She also increased his bipap settings and recommended that when he starts getting real sick we should put him on for 24 hrs straight(hmm, this will be a bit of an issue with Mr. personality).  Basically she said we can do this ALL at home instead of living in the hospital where they are doing the same thing.  So now I love her :).  She is realistic and is not afraid to make the changes to accommodate us and our situation.

I know no dr. is going to save my kids. I'm very realistic and  I know this disease will win in the end. BUT I can choose how their quality of life will be in my terms.  Many people can look at my kids and say "what kind of quality of life do they have?" well spend 5 mins with them and you will know!!! While it is very difficult to make the best possible decisions for them and not my heart, I know in the end it will be about them.  Right now Avery has such a quality of life.  He is happy and loves school and knows when he is home or in the hospital and trust me he is not happy in the hospital.  So for now we are hoping this drs. plan will keep our lil guy at home and be able to continue his happy family life for as long as he wants to be here.

I forget to tell you that we decided on an alternative wish, a 27" IMAC computer.  We already got it in too :) what is even better is that his school is going to be Skyping circle time for the days he is not there.  They already have all the parents consents and we will be ready to go soon.  I think it is a perfect alternative.  Below are some pictures and fun he already has been having with it.  Now that's "quality of life"