Our Son is Dying

[Karen87]

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

[ModKonnie]

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

Hi Karen,

You are not the only person on earth dealing with this, but I am so sorry you and anyone have to deal with such heartache. It's okay if you don't want to be positive here--that's why we are here. We want you to tell us how you feel, whether you are angry, sad, blue, terrified, or however else you may be.

Sometimes, people try to be "too positive" because they don't know what else to say.

There are people here who "get it." Sometimes we have lots of people posting in this forum, other times, people simply read what is being posted.

Feel free to keep us updated on what is going on, and I'm sure there will be others here to talk to. You've come to the right place. We will be here for you.

As far as your son, is he aware of what is going on? How is the rest of your family doing? We will be thinking of you.

ModKonnie

[Karen87]

Hi Karen,

As far as your son, is he aware of what is going on? How is the rest of your family doing? We will be thinking of you.

ModKonnie

Thank you for responding. His lung xrays were good so no pneumonia. That's good except now we still need to figure out why he has had a low grade fever off and on since the bigging of August or so. Only time it elevated was a week ago to 103 but that was down to 97.8 by evening with just one dose of tylenol and one dose of motrin spaced out and hooking him up to his feeding pump with water to make sure he was hydrated. His white count was a bit elevated so she let his infectious disease doc know. I don't know if they will need to run more in depth blood work or do a xray or scan of his back to look for any signs of possible inflamed areas on the spine where maybe the bacteria have gotten off the rods and taken hold causing the beginnings of possible infection. When we asked where he sorta stood the pulmonologist said that she views, at this time, his pulmonary status as stable. She said that with our son the main thing pulmonary wise is to hopefully avoid "tipping" him. That things like colds, flu, a severe bout with allergies etc....anything that would cause the possibility of a respiratory infection, could tip him. He could stay stable or something could occur to tip him and then we would have to deal with that. I asked how I would know if something was going on. She said that if we are having more and more low end sats, if we can't bring them up with the breathing treatments, if we find we are having him on the oxygen more and then if that's not helping...then we would need to address it...see what's going on. I did ask her about the right lung. Took in with all my notes a print out of one of the pics from the CT scan she had given me previously. I asked about the whole thing regarding the air movement, the air sacs and what happens if they aren't doing their job...she confirmed what I'd read that when they don't do their job, if they collapse, then bacteria can get trapped and cause infection/pneumonia. She said that in the lower half or so of the right lung the air sacs are not moving due to the compression by the spine and ribcage. So got my answers to my questions. Still sorta left in the mode of "hanging" on the edge...the whole thing of it could drag on like this or all the sudden he could get sick and it really go down hill. In some ways I think that is probably the most stressfull.

As far as our son being aware of what is going on....he's aware of his surroundings, we are able to determine if he is not feeling well or if he's happy, not happy etc. He can still watch a whole nascar race, still laughs at the animee he and his dad watch or other things he watches. He responds to us etc...he is like a child in someways but then with the cerebral palsy he's always been that way...so for him I would say he's pretty much the way he always has been...He is "there" cognitively in a lot of ways...remembers, anticipates, has his likes/dislikes...at the appt. while waiting to be released from xray we walked up and down the hall. It's right outside of OR so people kept coming down the hallway in scrubs...Our son gave them his gopher look...the wrinkled brow and pursed lips saying "don't like you". He knows that people in scrubs are not a good sign. Last surgery for the spinal infection the anesthesiologist (sp) came in just before and our son took one look at him in scrubs, gave his look, and then threw up. The guy said "is he sick?" and we said "no...he doesn't like people in scrubs...they are bad as far as he is concerned". So he is aware of life I guess...does not talk...cannot hear...so as far as being aware of what is going on...I'd say no or highly doubt it. When dealing with a child or young adult with severe cerebral palsy where there is no way for them to communicate verbally, when they have never heard anything the whole process of dealing with stuff becomes very difficult because you can't tell them what is going on, you can't verbally re-assure them, and you can't know what they may or may not know or sense. Years ago our son was terrified of umbrellas opening. He was 10 years old. We worked with him for 1 year or so...we made games of umbrellas...bought a sponge bob one...put toys in it and then opened it and they fell out...then graduated to just a black umbrella and eventually he got to where he would laugh at them. Why was he terrified of them...have no clue. So a lot of it is guessing and just trying to do the best we can I suppose. With this the only thing I think he maybe grasps is not feeling well when he's having trouble breathing...it being uncomfortable when we cath him...doctors doing stuff which he's dealt with his whole life...so when it comes down to things turning sour I guess the only way of conveying anything will be the same way you would with an infant or very small child...without words that he can hear...with touch and trying to convey something that way. I don't know if that's a plus or not...not sure if it would be worse having him know things weren't going in a good direction and having to deal with his actual vocalization of fear, anger, pain etc.

Thank you again for taking the time to respond...I do appreciate it.

Karen

[ModKonnie]

Thank you for responding. His lung xrays were good so no pneumonia. That's good except now we still need to figure out why he has had a low grade fever off and on since the bigging of August or so. Only time it elevated was a week ago to 103 but that was down to 97.8 by evening with just one dose of tylenol and one dose of motrin spaced out and hooking him up to his feeding pump with water to make sure he was hydrated. His white count was a bit elevated so she let his infectious disease doc know. I don't know if they will need to run more in depth blood work or do a xray or scan of his back to look for any signs of possible inflamed areas on the spine where maybe the bacteria have gotten off the rods and taken hold causing the beginnings of possible infection. When we asked where he sorta stood the pulmonologist said that she views, at this time, his pulmonary status as stable. She said that with our son the main thing pulmonary wise is to hopefully avoid "tipping" him. That things like colds, flu, a severe bout with allergies etc....anything that would cause the possibility of a respiratory infection, could tip him. He could stay stable or something could occur to tip him and then we would have to deal with that. I asked how I would know if something was going on. She said that if we are having more and more low end sats, if we can't bring them up with the breathing treatments, if we find we are having him on the oxygen more and then if that's not helping...then we would need to address it...see what's going on. I did ask her about the right lung. Took in with all my notes a print out of one of the pics from the CT scan she had given me previously. I asked about the whole thing regarding the air movement, the air sacs and what happens if they aren't doing their job...she confirmed what I'd read that when they don't do their job, if they collapse, then bacteria can get trapped and cause infection/pneumonia. She said that in the lower half or so of the right lung the air sacs are not moving due to the compression by the spine and ribcage. So got my answers to my questions. Still sorta left in the mode of "hanging" on the edge...the whole thing of it could drag on like this or all the sudden he could get sick and it really go down hill. In some ways I think that is probably the most stressfull.

As far as our son being aware of what is going on....he's aware of his surroundings, we are able to determine if he is not feeling well or if he's happy, not happy etc. He can still watch a whole nascar race, still laughs at the animee he and his dad watch or other things he watches. He responds to us etc...he is like a child in someways but then with the cerebral palsy he's always been that way...so for him I would say he's pretty much the way he always has been...He is "there" cognitively in a lot of ways...remembers, anticipates, has his likes/dislikes...at the appt. while waiting to be released from xray we walked up and down the hall. It's right outside of OR so people kept coming down the hallway in scrubs...Our son gave them his gopher look...the wrinkled brow and pursed lips saying "don't like you". He knows that people in scrubs are not a good sign. Last surgery for the spinal infection the anesthesiologist (sp) came in just before and our son took one look at him in scrubs, gave his look, and then threw up. The guy said "is he sick?" and we said "no...he doesn't like people in scrubs...they are bad as far as he is concerned". So he is aware of life I guess...does not talk...cannot hear...so as far as being aware of what is going on...I'd say no or highly doubt it. When dealing with a child or young adult with severe cerebral palsy where there is no way for them to communicate verbally, when they have never heard anything the whole process of dealing with stuff becomes very difficult because you can't tell them what is going on, you can't verbally re-assure them, and you can't know what they may or may not know or sense. Years ago our son was terrified of umbrellas opening. He was 10 years old. We worked with him for 1 year or so...we made games of umbrellas...bought a sponge bob one...put toys in it and then opened it and they fell out...then graduated to just a black umbrella and eventually he got to where he would laugh at them. Why was he terrified of them...have no clue. So a lot of it is guessing and just trying to do the best we can I suppose. With this the only thing I think he maybe grasps is not feeling well when he's having trouble breathing...it being uncomfortable when we cath him...doctors doing stuff which he's dealt with his whole life...so when it comes down to things turning sour I guess the only way of conveying anything will be the same way you would with an infant or very small child...without words that he can hear...with touch and trying to convey something that way. I don't know if that's a plus or not...not sure if it would be worse having him know things weren't going in a good direction and having to deal with his actual vocalization of fear, anger, pain etc.

Thank you again for taking the time to respond...I do appreciate it.

Karen

Hi Karen,

I love responding to people. I love to hear their stories, even though most of them here are sad, but it makes me realize the value and worth of life, and it makes me realize there are still very good people in this world who love dearly and who are truly awesome.

So, I'm sure this is a silly question, but have they tested him for something as simple as an ear infection? I mean, sometimes, they concentrate on one thing so much, they could skip something else.

Also, I hate to ask this, but are they saying anything in particular about a time amount?

How are you holding up? Are you getting any time to yourself? Are you eating right? Sleeping at all? Do you get respite at all? Take care and let me know,

ModKonnie

[hotrod]

Hi Karen

I am so very sorry to hear about your son and his illness. I know only too well the lonliness and sadness of the caregiver who tries so hard to make sure everyone is OK and keeps a smile and and uplifted spirit when your soul is dying.

You are giving your son the most powerful gift of Love and I pray that you receive the solace and courage of spirit that you need to continue.

I have been in your shoes and I am oh so grateful that I was able to be there to the end!! Please take care of you rest, come here and share and know that you are in my thoughts and prayers

[nursereilly]

Hi Karen, I come on here alot even though I've only posted recently......I too am the mother of a severly disabled child and she recently passed away in August....so I can really relate to where you are coming from........my daughter turned 21 a month before she passed, so I know how you feel for sure........I am here if you need me since we both can relate being parents to severely disabled children......you may email me directly, or leave me a message on here if you'd like..... I'm sorry to hear about your son......Kellie (Di's Mom)