We are home!!

So we are home! Finally walked through our front door around 10pm Friday night.
We waited until we could see cardiology before getting discharge.
Jagger last EKG and Echo was in November and with his heart condition he was overdue for one.
Good news is that his heart function and thickness are the same as in November so his heart is stable. The very first symptom/health issue we had with Jagger was hypertrophic cardiomyopathy back in December 2010 when he was 3 months old so we always have to keep a close eye on his heart!
After the echo we also had to wait for his IV antibiotic to finish running and fill paperwork.
So we finally got home around 10 pm!!
Jagger had a pretty good night and today we can tell he is very happy to be home as he has been smiling most of the day!
However he has been vomiting a lot and has a hard time with mucus!!
Hopefully it is related to not have moved out of bed for 3 days!
We are also seeing with side effect of the antibiotics with major diarrhea!!
So vomiting and diarrhea!! It's a fun time over here but hey at least we home:)

A better day! (hospital-TICU stay day 3)

Super quick update.
Keeping it short as Annett and I are exhausted tonight. But of course Jagger is super hyper and wide awake!!
I made a quick round trip to Nashville today for work, but Tiffany came over to help Annett.
Jagger had a pretty good day and the doc even commented on how much better he looks! So it looks like the antibiotics are working on his pneumonia.
Started regular feeds again and hopefully he keeps those down so we can start talking about being discharged.
More update tomorrow. For now time to try to sleep for a few hours before the next time someone come in for vitals or trash emptying or feeding pump refill, etc :)

Here we go again!

Just a quick update!
While I was in Cali for work, Jagger started to spike another fever and get very agitated. His heart rate was also elevated so Annett took him to the ER for our second visit there in less than a week:(
Well this time he got admitted. Of course all that has to happen when I was in a plane trying to get home!!
We are in the TICU, the step down ICU. Since he is not on oxygen this time, we not in regular PICU, but with his complex condition and all the meds, they can't take care of Jagger on the regular floor so we are in the TICU!
He has aspiration pneumonia and he is on strong antibiotics, however the Doc is keeping a close eye on him to make sure he doesn't have a blood (line) infection in his port! That would be very bad!
But he is already starting to look a little better so hopefully it is only pneumonia!
On another note, the doctor and the pharmacy were shock at the high dose of Valium he is taking!
The doc said he never saw such a high dose on a kid that small and that the same dose on Annett or I would cause us to be totally incapacitated and not able to react to anything!
And to think that it barely doses anything to poor little Jaggy!
If all goes well, we hope to be home Friday or Saturday but with Jagger you truly never know!

The Vest aka lean mean pooping machine

We are still trying to figure out the ideal setting, duration and time when to do the vest. Jagger started having more reflux and vomiting since we started it. Probably because it shakes his whole body. We will continue to experiment to find optimal speed and duration.

On the upside, the vest helps him poop. Without fail so far everytime we give glycerine and he struggles we hook up the vest and within 5 minutes he poops and quite a lot!!! It kind of makes sense as he vest stimulates his whole torso an unexpected but much welcomed side effect. :)

It's 3 am and...

Spent Thursday night at hospital. Jagger had been extremely tired and lethargic the last few days, started developing a fever and had breathing difficulties or rather was breathing funny. We thought that there are three possible reasons for this: 1. Disease progressing ( Sebastien's theory), 2. Robinul dose ( meds to help with secretion) too high which causes his breathing discomfort ( my theory) or 3. Pneumonia or some other infection.

I had already decreased robinul dose that day and gave several breathing treatments. By the time we got to hospital Jagger was actually better but decided to check in anyway to rule out any infection.

Thankfully everything came back negative, no infection and no pneumonia, so after some breathing treatments and Iv fluid we went home at around 3:30 am.

Jagger seems better now. The decreased dose of robinul may have done the trick. His breathing is much better and he seems a lot more comfortable and at least we know it wasn't an infection ( at least not at that time).

10 signs you spend way too much time at the hospital:

1. You know the key words to say to bypass ER waiting room, get admitted and seen by a doctor in a few minutes. ( keywords: difficulty breathing, heart problem, immune compromised.

2. You get to the ER or your hospital room/ floor and the nurses say: "welcome back".

3. You know which hospital bed is the most comfortable just by looking at it.

4. You are fascinated by all the machines and equipment and wished you had wall mounted suction and oxygen in every room in your house.

5. You tell the nurses how to do their job, which syringes and what tape to use and really prefer to do the procedures yourself.

6. You ask at the front desk if they have a frequent visitor card so that you can collect some points or maybe get the 10th stay for free.

7. You know how to make beeping Mashines stop by pressing the right button or changing the parameters.

8. You find entertainment or rather obsess about the monitors and know what SpO2, Bpm mean.

9. When you get to the room you find your preferred bed, several pillows and blankets all ready.

10. When you speak to your family, friends and colleagues about your child's condition they think you speak Chinese and are impressed with the honorary medical degree you have earned.

Sneak peek

Thanks to the tiny sparrow foundation (www.tinysparrowfoundation.org) and our photographer Catherine and her wonderful assistant from Mylife Photography we had our first ever family photo shoot. We wanted it to be as natural as possible so decided to do most of the shoot in our bed. After all that is where we spend the majority of our time with Jaggy. I do have to thank another mito family for the inspiration. Autumn is a little girl with Leigh's disease just like Jagger. A few months ago Sebastien showed me pictures of a beautiful photo shoot of Autumn and her mommy in a white dreamlike bed. I was inspired and said I want something like that with Jagger but it will have to be in our home.
The other inspiration came from the Beatles. Their music video to the song "Give Peace a Chance" was filmed in bed. No fancy gimmicks. A simple bed with white sheets. When I was little and saw this video it stuck with me until today. It was so simple but genius.
The challenge now was to make our bed look decent enough for a photo. Shoot. I think with Catherine's artistic eye (and some photoshop) we were able to capture several beautiful lasting images of Jagger and us. And thanks to Sebastien's master skills with the iron we had mostly wrinkle free sheets:).
--A little side note: labor division in this household is based on skill and not gender. When we merged households Sebastien brought most cooking supplies and the iron. I provided African art;) and tools such as power drill, hammer wrench etc. To this day Sebastien doesn't like me using his iron and I don't like it if he uses my power drill.--

Here is one of the images of us and Jagger as a small preview. Will post more once everything is done.