Thursday, March 15, 2012

We are home!

Jagger was ok overnight without oxygen. He was very agitated and did not sleep until 4 am but his breathing was good and his stats were normal.
We talked to the Dr. Ka (ICU doc) this morning, RSV and flu tests came back negative however he still think it was some kind of illness as Jagger got better quickly on antibiotic, steroid and IV fluid.
Dr. K (our neuro) stopped by this afternoon and he also think it was a bug and not the disease progressing in the brain stem (which is a great news!). We cannot be sure 100% without an MRI but if it was his disease he would have not gotten better on fluid and antibiotics.  However as it is the cause with mito kids, Jagger will probably not get back to his pre illness (last week) baseline.
One of the bad things about the disease is that each time Jagger have a " Mito crash" such as this respiratory illness he just had, he never get back as "healthy" as he was before and end up a little weaker each time he gets sick :( 
We were also warned that if we have to intubate him for any reasons( surgery, etc) it is very likely that we could not take him off the ventilator since his breathing is now weaker.
It was kind of expected news but it does reduce our options in case of major crisis.
After an exhausting 3 days in the ICU it's nice to be home!

Sleeping in the ICU

Wednesday, March 14, 2012

Still Waiting ( ICU day 2)

Still no test results so hopefully we will get them tomorrow. We should also see our Neurologist tomorrow. 
Jagger is about the same, very tired and sleepy but wakes up with pain spams every so often. 
His secretions are also getting thicker so it is even harder than before to suction him. 
He is off the Heliox and high flow oxygen, he is just on regular oxygen for tonight ( and a low level :1/4 liter only)
Here is a pic of Jagger chilling on his hospital bed:
 [UPDATE 9:00 pm]: Jagger is off the oxygen. It was such a low level and the cannula was bothering him, so the RT decided to take him off and see how he does. Hopefully we will not have to put him back on it.

Tuesday, March 13, 2012

Not the best way to celebrate a Birthday

Well it is only fitting that we ended up at the ICU on my birthday, after all we were at the ICU on Annett's birthday too back in November.
Jagger has not been feeling well for a couple of days, but yesterday  he was really not looking good and his breathing was getting a little labored.
We gave him some pain meds and did a couple of breathing treatments but that did not seem to help much.
So about 2 am this morning we called our hospice nurse, she gave us a couple of tips on what we should do. After 1.5 hours, he was still not better and was spiking an high fever, so we drive to the ER.
We were in the ER from 4 to 8.30 am, and they were still worrying about his breathing so they started him on high flow oxygen and Heliox (which is a mix of oxygen and helium, and easier for the lungs to breath) and transferred us to our second home in Atlanta, the ICU.
They took blood and  nasal swaps to run several tests, and we still waiting on results.
The doctor think that Jagger might have RSV or the flu, which would explain the wheezing breathing and the fever.
Believe it or not, that would actually be a good news, I know it is crazy to think that RSV or the flu would be a good news, but if it is not one of those, it more than likely mean that the disease has progress to the brain stem and Jagger will have a very difficult time controlling his breathing on his own from now on. It is the normal progression of the disease but we were hoping it would happen that fast.
So we are going to be in the ICU for a couple of days at least waiting on test results and  to see how his breathing progress when they turn down the oxygen level.
We expect our Neurologist to stop by tomorrow and he might have some more insight on the situation.
Tiffany just came by and brought us sandwiches for dinner, which is very nice, I went to the cafeteria to eat mine as you cannot eat in the ICU rooms. Upon my return, I got the best Birthday present ever, I got a smile from Jagger, it was not a big one, as the poor kid is exhausted and I m sure in some high level of pain, but it was a smile, and it made my Birthday a million time better:)

Monday, March 12, 2012

Thank you Peyton

As I am sure everyone knows by now, Peyton Manning is no longer an Indianapolis Colts. This is a very sad news, but it was expected even if I was hoping until the last minute.
A few of you have asked me why I like football and why I am a Colts fan! Well, it has a lot to do with when I was in High School and College as an exchange student and lived in Indiana.
Here is what I wrote about Peyton departure on Facebook the day it happened:

I have been a Colts since 1993 when I came to the US  lived in Indiana, my friend MJ and I used to drive to Indy on Sundays to watch them play live.
 I was a Colts fan when Aaron Bailey dropped Harbaugh Hail Mary and we came one play from going to the SB. That night I was at the airport cheering  on the team when they returned from Pittsburgh.
I was a Colts fan spending all my dollars as a college student to get season ticket to see Peyton go 3-13 his first season.
I was a Colts fan when Vanderjagt missed his first ever  post season kick in the dome, and once again we came short of going to the the Super Bowl.
I was a Colts fan celebrating in the freezing cold on Monument Circle on February 4th 2007 and the next day at the Super Bowl parade after we finally won the SuperBowl.
I was a Colts fan when the RCA dome was blown up and I have a piece of the field and of the roof on my wall!
I was a Colts fan, a sad one for sure when we lost to the Saints in 2010 and could not add another World Champions banner.
I was a Colts fan when my son was born and we decided to give him Peyton as a middle name.
I was a Colts fan this past season when in order to watch the Colts play I had to go to a restaurant with the Sunday ticket.  And despite only winning 2 games I was proudly wearing my #18 jersey every Sundays.
I have been, I m and will always be a Colts fan thru thick and thin. But tonight my heart ache because it's the end of an era.
We will never be able to thanks Peyton enough for what he did for the Colts and the state of Indiana.
If he does play again, I truly hope he wins another SuperBowl!
Godspeed Peyton.
In honor of Peyton, here are some pics of Jagger in Colts gear:

Saturday, March 10, 2012

It's a mad mad world

So this has been a pretty emotional week. Tears were shed by both Jagger and daddy. It's the end of an era. Sebastien took Peyton's departure news much better than I expected but I guess having a terminally ill child puts everything else into a different perspective. Or maybe he finally learned that no matter how loud you scream at the television or stomp your feet, you will not be able to change the outcome of the game or in this case, the press conference. lol

Caption: Daddy and Jaggy praying or rather begging to the sports gods for a speeding recovery and return of Peyton to lead the Indianapolis colts to a second super bowl championship title (yes daddy is wearing colts gear:)) I guess the gods did not listen to my sweet angel (who is also named after number 18) or my hubby, the biggest french colts fan to have walked on this earth. What a shame.

Thursday, March 8, 2012

Are we jinxing it???

It has been a while. It has been pretty quiet here. Good days and bad days. Usually things always go down hill when we post good news like the video below of Jagger laughing. Within a few hours of posting we had to give him morphine 3 times in 24 hours which is a lot. But things have settled again. We still have not yet toured the hospice facility which offers us an alternative to home and the hospital in a crisis situation. Anyway, the jinxing it applies to everything really. Guaranteed that Jagger will either vomit or pee or his tube will leak all over the bed as soon as I finished putting on fresh sheets. There are days when I change our linens a minimum of three times and of course he gets changed that often too. We have everything double or triple and even that sometimes is not enough. I have to do laundry every day unless we decide to sleep on plastic :). I am amazed the washing machine is still functioning, of course I probably just jinxed myself making this statement. lol.