I will post a Jagger update next, but first, I wanted to make sure everyone that read this blog is aware of what is going on with this poor little girl.
It makes me so sad when my friend Shannon shared that story with me, and as she put it, the Special Needs kid community is very resilient and so strong, so this story has actually gain national coverage over the last few days and I hope we can all make a difference in this little girl life.
I know there is nothing more we can do about Jagger condition and we just have to let it take it courses and make him as comfortable as possible, but that little girl could actually have a life if she get that transplant and for the hospital to refuse the transplant because she is "mentally retarded" as they put it, is not only unfair but should be illegal.
Where is this society going if a child is treated differently because of the color of their skins, their religious background or their mental state?
We cannot stand for this!
Please read the story below and if you want sign the petition
http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/comment-page-1/#comment-2092
http://www.change.org/petitions/director-of-public-relations-allow-the-kidney-transplant-amelia-rivera-needs-to-survive
Tuesday, January 17, 2012
Thank you
I honestly had no idea after I put that blog online last night, how many messages, texts, comments, facebook posting, prayers,offer for visits and help we would get.
We are thankful to have such great friends and family, thank you everyone for your support, we really appreciate it.
We are thankful to have such great friends and family, thank you everyone for your support, we really appreciate it.
Monday, January 16, 2012
Lucky Man
I am sitting here typing on my laptop at the foot of Jagger bed, he is finally sleeping, well drugged out to be exact and Annett is taking a well deserve rest on a very uncomfortable rocking chair in our ICU room.
And I wonder how can life be so unfair, my little crevette (shrimp in French), my little boo, is 16 months old, we should be at home having fun, kicking a soccer ball in the yard ( he is half French and German so you know soccer was going to be his sport), he should say Mama and Dada, walk around our house like a tornado and try to climb on every table and chairs but instead he is laying on a ICU bed struggling and hurting with every breaths he takes.
Now the tears are pouring down my face as I realized that I will never take him to his first day of school, his first soccer game, his first Colts game, his prom and high school graduation, to a few road trips to look at colleges, I will never meet the first girl he takes home, I will never attend his wedding and babysit his kids, my grand kids.
This disease is taking his life and there is nothing we can do about it, how is that fair!
Sorry I had to rant, but as you read this, if you have kids, please take a moment to tell them you love them and that you are so lucky to have them in your life.
But I am lucky too, because on September 14th, 2010, I saw the most amazing, sweetest face I ever see, and for the last 16 months, this little boo taught me so much about life, about fighting, about courage and about joy.
It did not matter how much he was hurting or how bad of a day he had, when I walked into a room and he saw me he always had the biggest smile on his face and for that reason alone I am a lucky man!
And I wonder how can life be so unfair, my little crevette (shrimp in French), my little boo, is 16 months old, we should be at home having fun, kicking a soccer ball in the yard ( he is half French and German so you know soccer was going to be his sport), he should say Mama and Dada, walk around our house like a tornado and try to climb on every table and chairs but instead he is laying on a ICU bed struggling and hurting with every breaths he takes.
Now the tears are pouring down my face as I realized that I will never take him to his first day of school, his first soccer game, his first Colts game, his prom and high school graduation, to a few road trips to look at colleges, I will never meet the first girl he takes home, I will never attend his wedding and babysit his kids, my grand kids.
This disease is taking his life and there is nothing we can do about it, how is that fair!
Sorry I had to rant, but as you read this, if you have kids, please take a moment to tell them you love them and that you are so lucky to have them in your life.
But I am lucky too, because on September 14th, 2010, I saw the most amazing, sweetest face I ever see, and for the last 16 months, this little boo taught me so much about life, about fighting, about courage and about joy.
It did not matter how much he was hurting or how bad of a day he had, when I walked into a room and he saw me he always had the biggest smile on his face and for that reason alone I am a lucky man!
What to do now? The decision a parent should never have to make
This is probably the hardest thing I ever had to write in my life (at least for now). I will try to hold my tears as I type this, but we have done so much crying already today that Annett and I are both mentally and physically exhausted already.
We knew for a few weeks now that Jagger condition is terminal, but we were secretely hoping for a miracle, but mostly for maybe a couple of more years with him.
Unfortunately, it seems that will not happen.
Because his pain his only getting worst, the doctors have to increase dosing or find new meds on a daily basis.
there are a lot of pain med option we can try (even if most are not recommended because he is so little) but some of them can be dangerous for him.
We had a good talk with Dr. K and for him and the ICU docs, there are little doubt that the pain is cause by his disease progressing, and affecting his brain. All the tests they got back so far are negative, which proof that theory.
So the only thing we can do at that point is to control the pain with medications, but if we give too much we can cause respiratory failure, and if we give too little they have no effect on his pain, so we have to find the correct balance, but because all those drugs are addictive by nature, Jagger is building up a tolerance very fast and they have to increase the dosing constantly.
So very soon, we are going to get to the point, that in order to reduce his pain, we will put him in danger of respiratory failure, and he will need to be intubated.
From experience from November, we know that is he is intubated the odds are he will never be able to breath without the machine and then we will be face with a "pull the plug" type of decision.
We have not made our final decision yet, but Annett and I lean toward trying to get him as comfortable as possible with meds and that way we might be able to possible take him home where he will be able to take his last breath peaceful with us.
So we had to call our family today and tell them they should come and say their goodbyes to Jagger, not the easiest phone call to make. Annett parents are driving down and should be there on Wednesday am, and my parents and one of my brother are flying and will be here Wednesday, but they can only stay for 4 days.
This is not going to be a fun week for any of us, but I m glad they are coming to see Jagger one last time.
I have no idea when I will have the strength to update this blog next, but I will try my best to keep everyone updated and this is the best place for updates, as I will not have time to email or text everyone.
We knew for a few weeks now that Jagger condition is terminal, but we were secretely hoping for a miracle, but mostly for maybe a couple of more years with him.
Unfortunately, it seems that will not happen.
Because his pain his only getting worst, the doctors have to increase dosing or find new meds on a daily basis.
there are a lot of pain med option we can try (even if most are not recommended because he is so little) but some of them can be dangerous for him.
We had a good talk with Dr. K and for him and the ICU docs, there are little doubt that the pain is cause by his disease progressing, and affecting his brain. All the tests they got back so far are negative, which proof that theory.
So the only thing we can do at that point is to control the pain with medications, but if we give too much we can cause respiratory failure, and if we give too little they have no effect on his pain, so we have to find the correct balance, but because all those drugs are addictive by nature, Jagger is building up a tolerance very fast and they have to increase the dosing constantly.
So very soon, we are going to get to the point, that in order to reduce his pain, we will put him in danger of respiratory failure, and he will need to be intubated.
From experience from November, we know that is he is intubated the odds are he will never be able to breath without the machine and then we will be face with a "pull the plug" type of decision.
We have not made our final decision yet, but Annett and I lean toward trying to get him as comfortable as possible with meds and that way we might be able to possible take him home where he will be able to take his last breath peaceful with us.
So we had to call our family today and tell them they should come and say their goodbyes to Jagger, not the easiest phone call to make. Annett parents are driving down and should be there on Wednesday am, and my parents and one of my brother are flying and will be here Wednesday, but they can only stay for 4 days.
This is not going to be a fun week for any of us, but I m glad they are coming to see Jagger one last time.
I have no idea when I will have the strength to update this blog next, but I will try my best to keep everyone updated and this is the best place for updates, as I will not have time to email or text everyone.
Back in the ICU (hospital stay day 2, ICU day 1)
We are back in the ICU, quick background, Jagger has not been feeling well since new year day, but we had some good days and some bad one as predicted.
Last week was rough, so Dr. K upped some of his meds, and we actually had two good days on Wednesday and Thursday, when he was very happy and smiling all day.
Friday, he started to have some pain again, and on Saturday morning, we had to call our hospice nurse at 5 am because we could not control his pain.
We started a stronger regiment of pain med, and he was on Ativan and Morphine every 4 hours (but staggered so he had some med every two hours). Of course, that made him very sleepy and he spent most of the day in bed sleeping. In the late afternoon, his breathing was starting to be a little more forced, so the hospice decided to have some oxygen deliver to our house to see if that help.
It was not a great help, since Jagger does not like anything on his face, so it was pretty difficult to give him any oxygen.
The night was pretty agitated and by Sunday morning, he was struggling to breath, so we decided to go to the ER. He was taken straight to Trauma room and they accessed his port and gave him IV morphine, did a lot of deep suction and he seemed to calm down. We were given the choice to go home if we wanted. By that time, for some reason, he started to spike a fever (which is very rare for him). So just to make sure, we decided to stay for the night as his breathing was also still not back to 100%. At that time, we had no idea that it was the right thing to do.
So we got admitted back to 5East, a floor we have been to several times, we spend 2 weeks there in November, so it is like our second home and all the nurses recognized him, he is like a rock star on that floor.
All was well until about 3 am this morning, when he started to scream of pain again and his fever got up to 103.9 which is the highest he ever had. So the doc ordered more blood test and they increased his oxygen.
After several morphine doses and no results, they decided to transfer us to the ICU at 6 am this morning.
Of course the level of care in the ICU is so much better (and way more expensive for sure). He finally started to calm down by time we go settle in ICU. However all the pain med they giving him are only effective for a couple of hours max.
So they increase his methadone dose and morphine. The idea is to get to a dose of methadone (given 3 times a day) that works for him and in the mean time use the morphine as "breakthrough drug", great idea on paper but with Jagger and his unique metabolism that is not working. So by afternoon, we switch him to IV morphine that is going directly into his blood stream instead of his stomach. that worked for a few hours, but again he woke up screaming in pain, so they added Valium to his meds, and so far it seems to calm him down.
We know we will probably have another very eventful and difficult night, we just hope Jagger can get some rest and that we can control his pain better.
Last week was rough, so Dr. K upped some of his meds, and we actually had two good days on Wednesday and Thursday, when he was very happy and smiling all day.
Friday, he started to have some pain again, and on Saturday morning, we had to call our hospice nurse at 5 am because we could not control his pain.
We started a stronger regiment of pain med, and he was on Ativan and Morphine every 4 hours (but staggered so he had some med every two hours). Of course, that made him very sleepy and he spent most of the day in bed sleeping. In the late afternoon, his breathing was starting to be a little more forced, so the hospice decided to have some oxygen deliver to our house to see if that help.
It was not a great help, since Jagger does not like anything on his face, so it was pretty difficult to give him any oxygen.
The night was pretty agitated and by Sunday morning, he was struggling to breath, so we decided to go to the ER. He was taken straight to Trauma room and they accessed his port and gave him IV morphine, did a lot of deep suction and he seemed to calm down. We were given the choice to go home if we wanted. By that time, for some reason, he started to spike a fever (which is very rare for him). So just to make sure, we decided to stay for the night as his breathing was also still not back to 100%. At that time, we had no idea that it was the right thing to do.
So we got admitted back to 5East, a floor we have been to several times, we spend 2 weeks there in November, so it is like our second home and all the nurses recognized him, he is like a rock star on that floor.
All was well until about 3 am this morning, when he started to scream of pain again and his fever got up to 103.9 which is the highest he ever had. So the doc ordered more blood test and they increased his oxygen.
After several morphine doses and no results, they decided to transfer us to the ICU at 6 am this morning.
Of course the level of care in the ICU is so much better (and way more expensive for sure). He finally started to calm down by time we go settle in ICU. However all the pain med they giving him are only effective for a couple of hours max.
So they increase his methadone dose and morphine. The idea is to get to a dose of methadone (given 3 times a day) that works for him and in the mean time use the morphine as "breakthrough drug", great idea on paper but with Jagger and his unique metabolism that is not working. So by afternoon, we switch him to IV morphine that is going directly into his blood stream instead of his stomach. that worked for a few hours, but again he woke up screaming in pain, so they added Valium to his meds, and so far it seems to calm him down.
We know we will probably have another very eventful and difficult night, we just hope Jagger can get some rest and that we can control his pain better.
Saturday, January 7, 2012
Bad week
OK, so for 2012, we will try to update as much as we can, of course with Jagger we don't have a lot of time, but if anything is happening, we will update a lot for sure (such as hospital visit, etc) but I will try to update at least every week or every other weeks even if nothing is going on. Don't forget you can add your email (on top right side) to be inform when a new entry is posted. But still come check the blog once in a while as we will try to also add pictures.
So this week has been very difficult, for some reasons, Jagger has been very cranky and refused to sleep at night, and actually just spent most of the night screaming and crying. So we had to give him adivan and morphine quite a few times this week. It works only for a few hours, so he has really not be getting any sleep. Dr. K decided to increase the Respiridon to 3 times a day (it is a neurological pain/seizure drug) and hopefully that will work, if not the next step would be to increase the Methadone, but I rather keep that as a last resort.
Last night was a little better so I hope that tonight he will be OK and that next week we will get back to normal sleep wise.
It could however be a normal progression of his disease as a lot of "Mito" kids have difficulty sleeping or staying asleep, but we just hope that is not the case. He is also teething and the pre molars are coming out so that is causing him a lot of pain.
So this week has been very difficult, for some reasons, Jagger has been very cranky and refused to sleep at night, and actually just spent most of the night screaming and crying. So we had to give him adivan and morphine quite a few times this week. It works only for a few hours, so he has really not be getting any sleep. Dr. K decided to increase the Respiridon to 3 times a day (it is a neurological pain/seizure drug) and hopefully that will work, if not the next step would be to increase the Methadone, but I rather keep that as a last resort.
Last night was a little better so I hope that tonight he will be OK and that next week we will get back to normal sleep wise.
It could however be a normal progression of his disease as a lot of "Mito" kids have difficulty sleeping or staying asleep, but we just hope that is not the case. He is also teething and the pre molars are coming out so that is causing him a lot of pain.
Sunday, January 1, 2012
Happy New Year
Annett, Jagger and I want to wish you all a Happy New Year and the best for 2012.
We did not do anything for this new year eve, but we watched the ball drop in Time Square, it reminded us of the craziness. Annett and I were there a few years back and it is definitely something to do once in a lifetime, but it is pretty crazy!
2011 has not been a good year for us, it started with Jagger heart condition, then we finish the year finding out about his terminal mitochondrial disease and 3 weeks in the hospital. So we really hope 2012 will be better and while we are trying to stay optimistic, we also know it is a progressive disease so the odds are that 2012 will be worst than 2011, but we never know, maybe the disease can plateau for a while, that would be great!
I am not going to make any resolutions I cannot keep for 2012, so I will only make 2. First one is to take care of Jagger the best we can, and minimize his pain as much as possible and the second is to raise awareness for Mitochondrial diseases as much as I can. So few people are aware of those devastating diseases that I believe the least I can do is to try to reach out to all my friend/social networks and talk about Mito as much as I can.
So raising a kid is exhausting and very expensive but I think most parents do not have any ideas how much more difficult and expensive it is to raise a special needs child, so here are some mind blowing numbers about Jagger in 2011:
We did not do anything for this new year eve, but we watched the ball drop in Time Square, it reminded us of the craziness. Annett and I were there a few years back and it is definitely something to do once in a lifetime, but it is pretty crazy!
2011 has not been a good year for us, it started with Jagger heart condition, then we finish the year finding out about his terminal mitochondrial disease and 3 weeks in the hospital. So we really hope 2012 will be better and while we are trying to stay optimistic, we also know it is a progressive disease so the odds are that 2012 will be worst than 2011, but we never know, maybe the disease can plateau for a while, that would be great!
I am not going to make any resolutions I cannot keep for 2012, so I will only make 2. First one is to take care of Jagger the best we can, and minimize his pain as much as possible and the second is to raise awareness for Mitochondrial diseases as much as I can. So few people are aware of those devastating diseases that I believe the least I can do is to try to reach out to all my friend/social networks and talk about Mito as much as I can.
So raising a kid is exhausting and very expensive but I think most parents do not have any ideas how much more difficult and expensive it is to raise a special needs child, so here are some mind blowing numbers about Jagger in 2011:
- Doctor, Therapist visits: 59
- Surgeries: 2 (muscle Biospsy, ST and feeding tube placement, second one was port placement in chest)
- MRI: 2
- EEG: 1
- Trips to ER: 5
- Hospital Admission: 5
- Days in the hospital: 38 (including 8 in ICU)
- Miles driven to appointments or visits: 1950
- Medical costs for 20122: $236,000. We are very luck that we have insurance and only had to pay a portion of that, but it was still a very expensive year medically for us. I do wonder how families without insurance do it!
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