Friday, January 27, 2012

Missing daddy

I guess I should contribute as well from time to time. So far Sebastien has been the one diligently updating the blog. We are at home and Jagger is doing ok. He started his crazy movements again. Never stops moving when awake and twisting and bending his body it hurts just to look at him. Something you've only seen at the circus. He is not crying though so instead of increasing his pain Meds we decided to start him on movement disorder Meds. He was on them before but we didn't know if they were indeed working. Well we know now. Other than that Jagger misses his daddy terribly. Daddy went on a business trip for a few days and neither mommy nor Jaggy are happy about it. Daddy is Jagger's favorite person. When daddy is here Jagger's world is at peace.
On another note, we took the IV out today. Since he has a port it is quite easy to access and deaccess as long as you have the right tools. We even were able to do a pt session today with our wonderful therapist.
Now we are waiting inpatiently for daddy's return so that Jaggy's world is back to normal and mommy can eat and brush her teeth without screaming baby background music.

Sunday, January 22, 2012

Resting at home

So it's been a couple of days since the last post.
We are home. We were discharged on Friday late afternoon. It took a while to work out all the details and to make sure we have all new meds and equipments needed at home.
Not sure if they will ever read this, but we wanted to say thank you to the PICU team, they were great as always. Special mention to nurse Carol and Karen and to Dr. P.

Jagger has been OK since we been home and has not suffer from any spasms since Thursday!  
He still has a lot of secretions that he can't eliminate on his own so he requires suction several times a day but Annett is getting really good at it.
One of the hospice nurse came by on Saturday to check on him and see if we have all that we need. She also called the medical supplies company to get more oxygen tanks and to come check on our concentrator as it did not seem to work.  They came by later that afternoon and we are all set with the oxygen now.
Saturday evening was pretty nice, we took turn holding Jagger and were able to all sit down and have a family dinner. First time since 2006 and our wedding we all eat together. We had Shabu Shabu and everyone loved it.
Annett parents left later that evening and they are driving back to New York today. They are planning on coming back in about 5 to 6 weeks, hopefully we don't need to have them back here as an emergency before then. 

Jagger had a good night and did not wake up until 10am this morning.
He got to spend a little more time with my parents and brother this morning and we left for the airport early afternoon.
Of course it was pretty sad goodbyes as this is probably the last time they get to see Jagger. We will try to get them back over here in a few months but again it is impossible to make any plan more than a couple days out with Jagger condition so we shall see.
So after I got back from the airport I got to spend all afternoon with my little cuddle body. We watched football for several hours ( well I watched and Jagger slept most of the time! lol). For the few moments he was awake today, we even got some really big smiles, which are awesome!

Thursday, January 19, 2012

Family time (Hospital Stay Day 5, ICU day 4)

Today was a better day. Jagger only had one episode of spasms in the morning. It happened when I ran home very quick to pick up my parents and brother. 
Annett gave him Valium right away to see if maybe that would work better than morphine. 
And while it is hard to tell if it worked or not, he was better in about 45 minutes and the spasms were a little less violent so maybe the Valium is the way to go. 
We will see what happened next time. The less morphine we give him the better  as his tolerance is building up pretty fast. 
On the other hand, while we can give morphine every 2 hours or so, Valium can only be given every 5 hours at most and we cannot give it at same time of morphine due to risk of respiratory failure. 
Dr. K came by today and said we will still try to tweak meds as needed until we find a good regiment and we only have to use morphine for breakthrough or rescue.  We not quite there yet but we might be close. Once we figure that out, we will probably be able to go home as there is not much more they can do for us at the hospital. But they said as long they are not tight on bed, we can stay in ICU at our discretion.  We really don't want to go back to the regular floor as we can manage him and his pain about the same at home than on the regular floor. 
In ICU, we have great attention from his nurses and can get meds in less than 5 minutes if needed. On regular floor it can take up to 40 minutes to get the med needed and if he is
Having a spams episode we cannot wait that long for sure!
We did inform the doctors that we decided not to intubate Jagger if
He goes into respiratory failure. An amazingly hard decision to make that no one should ever be faced with but we are certain it is for the best and will guarantee him the least suffering possible. 
Dr K and the palliative care team are also working on a new medication plan we can follow at home. 
We new to have exact plan for "crisis" pain control for both his gtube and IV. We will also probably get a morphine pump. We already have so much equipment for him at home, that our place looks like a mini hospital and I might be able to open a neighborhood urgent care clinic! Lol

Between his two grandmas, Jagger was held and rocked most of the day. 
I know he loved it, because being held is one of his favorite thing for sure. 
Annett and her parents stayed a little longer tonight and I was able to go to a local burger joint with my parents and brother. It was a nice little break and was good to catch up with my family for sure. 
After I got back and everyone went home for the evening, Annett and I started to discuss bereavement options and such. Nothing we want to talk about but we also need to have a plan as we do not want to have to make last minute decision under pressure. 
How much I wish that our conversation tonight could have been one of a regular family and we that talked about our next vacation destination or which toy we would buy for him instead of where should his final resting place be and what type of ceremony we should have:(

Wednesday, January 18, 2012

Uncontrollable Spasms (Hospital stay day 4, ICU day 3)

It s crazy how fast things can change with Mitochondrial diseases just a few hours after taking him off the oxygen and even getting a few smiles ( which was awesome and a sight I will never forget especially if those were the last smiles we ever get), while Annett went home to get us fresh clothes and supplies, Jagger started to have very strong violent spasms. He had a few spasms before but just for a few minutes and usually controllable with a small dose of morphine.
That episode yesterday lasted about 1 hour and we could not stop it with morphine and Valium. Even our nurse was shock by the strength of the spams.
The rest of the evening and the night were pretty quiet and Jagger got some good sleep.
Around 7.30, he woke up screaming hysterically and had another episode of violent spams. Doctors were able to witness it but nobody can tell for sure if it is muscle related or just neurological as his brain is slowly getting worst. So they have meds for both and he had 2 doses of morphine and an increase dose of Valium. Unfortunately none of it worked and the spasms went on for a little over 2.5 hours. I must say that has to be one of the hardest thing to see as a parent because he was in so much pain and nothing we could do calmed him down. I still believe none of the meds worked and he only stopped after over 2 hours because he was exhausted and fall asleep.
Dr K stopped by and said all we can do is to try to control the pain so they will increase his dose of morphine again and hopefully we can put a stop to those spasms.
He reminded us we need to decide about intubation or not if it is needed.
We think we made a decision on that matter but we will also discuss with our parents since everyone will be here tonight.
We were also really hoping to be able to take him home and manage all with pain meds but we are starting to rethink that, those spams episodes are so violent and scary we decided we want to stay in ICU until we get those under control for sure.
Annett parents made it here safely and I went to pick up my parents and one of my brothers at the airport.
Right before we made it back to the hospital, Jagger started to have another one of his spasms episode, this one was a little less violent and shorter, and maybe the morphine help that time, but we really need to talk with his care team tomorrow to see if we can do anything to stop those from even happening.
it's about 11 pm now and he is sleeping peaceful, hopefully he will for the rest of the night, and will not have any more spasms.

Here is a pic i took yesterday when he was smiling at us for a few minutes:

I took this short video to show one of his doctors that was not around this morning when he started his episode.
Now I warn you this is very difficult to watch, and I was only able to get the tail end of one of the spasms, he had them from over 2.5 hours this morning. In between each one you can see how he is breathing thru his stomach, which he only does when he is in a lot of pain.:(

Tuesday, January 17, 2012

Off the Oxygen (Hospital Stay day 3, ICU day 2)

It is not about 3:30 pm, and we just took Jagger off the oxygen about 1 hour ago and he seems to be doing ok without it, which is great news.
The night was a lot better, and he actually got some sleep and we were able to only give him Morphine twice at 10 pm and 4 am.
They also added Valium to his drugs and that make the morphine works better.
Of course as we were told yesterday, each medication increase can create a problem and with all those news meds, his blood pressure was a little low so they gave him a couple extra IV fluid bolus. The problem is that with his heart condition we have to be careful and not over hydrate him or that could put too much strain on his heart.
So again we are walking a thin line between taking care of his meds and hurting his body because of the toxicity of the medications.

Palliative care team came by today and said they will work on a plan so we can take him home. We will be able to give him IV morphine at home as needed. They also asked us to inform the ICU doc of our wishes, and while we still have to discuss a bit but we don't think we will have him intubated, we would much rather be able to take him home and manage with meds so he can go peacefully with us in his home if we can.

His pain reacted well to the methadone increase, so everyone is a little more optimistic this morning, but we know that we cannot increase drugs forever and at one point his heart will stop working we just hope that it will be as far as possible in the future.
With Mitochondrial disease, things can go downhill very fast, so we need to be prepared  in case we need to decide how much meds we give him to stop his pain.
Annett parents are driving down from New York and should be here sometimes tomorrow, my parents and one of my brothers are flying in from France tomorrow. It will only be the second time they meet, the first was our wedding, I just wish it could have been for a more joyous occasion.


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

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.

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!

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.

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.

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.

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:
  • 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!