We really cannot go anywhere!

Since we have the hospice care, Jagger does not really go anywhere, and since he does not like being in a car seat,he has not problem with that. He was not always that way and before he was 4 months old, we drove to Hilton Head and to Orlando, but after that even the shortest trip was a total nightmare.
Well, we had to go to the pulmonologist, one of the rare specialists we have not seen yet, but since Jagger's disease will affect his breathing at some point in the future, our genetic nurse asked us to go see Dr. B, since she specialize in Mitochondrial kids.
Unfortunately, she is located on the other side of town about 30 minutes drive.
The way there was not too bad, but Jagger was getting really agitated the last few miles.  The appointment went really fast and we did not have much wait, which is always a plus with Jagger.
Dr. B. was really good, she explained to us how the disease is going to progress (respiration wise) and gave us a few tricks to try to help with his secretions. She even prescribed a new drug since he has some sort of allergy to the Atropin (well more like flushing and increase heart rate). Hopefully that med will work, but only time will tell and we can always give Atropin if we must, we just have to watch him closely.
I will not go in details on everything she said about his disease, but it is not going to be fun and just the simple task of breathing is going to become more and more difficult for him:(
Anyhow, Jagger fall asleep at the doctor (see pictures) but he woke up when we tried to put him in his car seat, and then the fun started!!
The 30 minutes drive home was awful, he was screaming and arching, and he was almost getting out of his car seat on his own despite the seatbelt! Unfortunately when he gets like that, there is very little we can do, so I just tried to get home as fast as I could (safely of course) so we could take him out of the seat.
One effect of his disease is that when he gets upset or  agitated it is very difficult and takes a very long time to get him to calm down, and usually requires the use of strong medications.
Today was no exceptions, after we got home, we had to give him morphine several times just for him to get back to baseline.
So moral of the story, unless it is an absolute must, we are not taking Jagger anywhere, and I am sure he is thankful that he gets to stay home and away from the car!

Laughing baby

Most of our posts are usually when Jagger is in hospital, so I figure for a change, I would post a short video of him laughing. We took it a couple of days ago!

Happy 17 month birthday

Yesterday, February 14, Jagger turned 17 month.
Some quick stats:

• Current weight : 18 pounds 12 oz or 8.5kg.
• Current lenght: 31 inches  (~81cm).
• Number of teeth: 12 (not all completely out yet)
• Favorite toy: Scout and Sophie
• Favorite book: the gift of the ladybug and Max der Elephant im Zoo
• Favorite thing to do: cuddling with daddy while sleeping or watching sports
• Favorite person: DADDY
• Least favorite: bath time, changing, not being held

Happy Valentine's Day to my two favorite people

People keep asking us how we are doing. I am a very private person and don't like to share my personal feelings too often but let me just say the following:

Every morning I wake up, looking over my right shoulder and happy to see Jaggy cuddled up in daddy's arms. Every morning I breathe a sigh of relief, happy he is still with us and I commence my day with three goals: 1. give him 1000 kisses, 2. tell him that mommy loves him more than anything and that he is my absolute favorite person in this entire world, 3. keep him happy and pain free. (Although I usually stop counting after about 100 kisses most days these goals are met).

At the same time I hope every day that today is not the day I have to say goodbye to my sweet baby, the love of my life.

Our days are like an emotional roller coaster..happy, sad, joy, pain, content, anger, love, frustration...

Our unique situation has taught us to cherish every moment from the smallest accomplishment to the biggest smile. Everything counts.

So Frustating

One of the hardest thing about Mitochondrial diseases is how quickly things can go from good to bad to really bad with no warming, to me it is one of the most frustrating parts of his disease (along with the fact there is no cure of course).
Last Sunday, right before Superbowl I almost made a blog entry just to say that Jagger had a good week and he was very happy and smiley all week and things were as good as they are going to get right now!
But I did not have time, so I figure I will post Monday morning, and just like that, on Monday morning, he started his spasms again, the same thing that landed us in the hospital a few weeks ago.
So Annett called our hospice nurse right away, and we increased his medication doses immediately to make sure we keep it under control.
It seems that it worked, but the bad part is that we had to double some of his meds, and as you probably know from earlier entries in the blog, we cannot keep going up on the meds forever as the higher dose the more chance of respiratory failure.
The good news is that as of now, Friday evening, he has not had any spasms since Monday.
However, we can see that the disease is progressing slowly. He does less and less with his legs and has already lost a lot of muscle mass. His legs used to look like those of a soccer player, strong and defined with of all the kicking he used to do.  We still have PT for him once a week and try to do exercises each day but we are not sure how much that is actually helping.
He is also having a hard time sleeping at night and when he does fall asleep, he is very agitated in his sleep, so I am sure that it's not really restfull sleep he is getting.
Secretions have also been a big problem for him. We have suction machines at home that we use several times daily but it is becoming very difficult to control his secretions, so we talked to our nurse and we might have to try meds to see if that helps!
Tiffany (our nanny) babysat for us on Wednesday while Annett was at a self defense class and I was able to have a rare night out, I went to see the Pacers play with a few friends. It was fun even if they got beat pretty bad! But it was nice to get out for sure!
That is all for the weekly update!

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.

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!