Members Karen87 Posted September 28, 2010 Members Report Share Posted September 28, 2010 Hi. Ok...maybe after several weeks of googling I may have figured out what the clue was as to what words I needed to use. At first I thought this was just a site related to grieving and dealing with someone that has already died and then saw this section of the forum.Our son is 17, almost 18, born with severe cerebral palsy. Life wasn't too bad once we got past the initial shock of it all...there was no obvious signs until 4 or 5 months old...with a diagnosis at 9 months old. We jumped right into the whole therapies, working with him etc. I would say that over all he's had a good quality of life up until he was 12 years old. He developed sudden onset scolisos due to puberty. At 13 had spinal surgery, at 15 grew another inch and the vertebrae rotated as well as the entire ribcage. That caused a piece of the hardware to press on the skin from inside resulting in infection. The piece of hardware was removed, 6 months of dual antibiotics to clear up the infection but still bacteria on the rods and remaining hardware which cannot be removed safely. On long term antibiotics to keep the bacteria confined to the rods. He has an76-85 broad curve scoliosis to the right, a stable kyphoscoliosis curve and a stable lordosis curve. The right lung is compressed between the ribcage (pushed back) and the spine. There is very little movement and it's smaller than it should be. The left lung does most of the work. He is now on daily breathing treatments, monitoring of 02 sats, heart rate. When needed we have oxygen for comfort or to help make it easier for him to breathe.His right kidney is pushed up and back higher and shows some early signs of damage but because it's felt that the lungs will be what fail and because there is nothing that can be done structurally we just sorta monitor it. His bladder has reached the point that sometimes he empties...sometimes he doesn't...so we have to cath if he doesn't go after 12 hours. We have been told that if he gets the flu, pneumonia or any respiratory problem that even with antibiotics he may not be able to fight it. We've already seen this year the affect of spring, allergies and for two weeks he was on and off oxygen because he was working so hard to breathe. We have an appointment this week with the pulmonologist and I have more questions. I suspect from what I have read and researched that the right lung is not in good shape in terms of the air sacs and that as they basically stop working that then is when we may see the infections...which is my question to the pulmonologist...that even if we avoid the flu or a severe cold/respiratory issue is that right lung failing. I guess that's it. We met with Palliative Care because the pulmonologist wanted them involved. We talked...we discussed what we want for our son and it came down to no heroic measures...no extreme measures to keep him alive...primary goal comforta and pain control when it comes to that. We were apporved by Make a Wish...looks like our son will be able to watch his Nascar races and animee/cartoons/movies on a bigger screen. I wanted it for the races...I wanted him to really see the cars up close as possible.I am here because after months of just trying to live life each day with this hanging over us, no one to really talk to that can "relate" or "get it"...I just want to talk to others who are in the same boat. The sorta isolated feeling is getting to me....I know I can't just sit and cry or rant and rave...won't accomplish anything...at the same time I'm tired of being up all the time or trying to be so that others will be ok...it's like if others think I'm doing ok then that makes them feel better...so they don't have to think about it I guess. I have discovered that most want me to be up, positive, oh the doctors don't know...they said my child wouldn't live and they did and they are living a happy full life etc etc etc...all the while I'm just trying to wrap this around my brain and deal with it. It's weird...people think it's great he is getting a big screen TV...I'd much rather buy him one then it be because he is so severe medically that he qualifies for Make A Wish.Ok...just wanted to get this on here...need to turn son, give meds, hook up to feeding pump, check temp...been running a low grade one...sounds like his nose is all stopped up...saline time...thank you to anyone that reads this and I really hope this is the spot...this is a place where I can feel like I'm not the only person on earth dealing with this.Karen Link to comment Share on other sites More sharing options...
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