Friday, August 31, 2012

Our tiny sparrow

I just want to post the link and instructions again as I don't know if folks reread my entry from the other day.

Tiny sparrow made a very nice slide show for us which they posted on their website on August 29, 2012.

Jagger tiny sparrow foundation page

You need flash player to view the slideshow so if your looking at the website from your iPhone or iPad it will not work. The first picture of the slideshow is a profile of his face in black and white. You need to click the arrow in the middle of the picture to start the show.

Thank you again tiny sparrow and our photographer for these beautiful memories.

Thursday, August 30, 2012

The center of our universe...literally and tiny sparrow

It shouldn't take long to figure out that I am talking about Jagger. He is indeed the center of our universe as our lives evolve around him. Even though this can be challenging at times, I wouldn't want it any other way.

I want to say thank you again to the Tiny Sparrow Foundation and our wonderful photographer, Catherine, for capturing some beautiful images of our family, especially Jaggy boo. I call this photoshoot "the center of our universe" because Jaggy is in our center for several of the images and he truly is our universe; he is the love of our lives. Below are a few more photos and the rest can be seen on the Tiny Sparrow website :
Jagger Tiny Sparrow foundation page

Our entry should be on the top (for now). If you read this entry at a later date, our photos and slide show were posted on their website on August 29, 2012. I absolutely love love love the first picture of the slide show of his face (you can see his long eye lashes nicely). Click on the arrow on the picture and it will start the slide show. You need a flash player for the slideshow to work, so if you are using an iphone or ipad you will not be able to see it.

Ps: had to get a pic of his feet. I absolutely love his feet (but only his). His big toe is usually flexed (part of is muscle tension/spasms) but it is his trade mark.

If you are considering donating to an organization, please put Tiny Sparrow on your list!!!! They have been amazing to work with and we are thrilled with our photos. We will also be getting a photobook from them.
Our photographer travelled over an hour to come to our house and we didn't have to pay for anything. They are creating so many beautiful lasting memories for so many families who are facing the unthinkable: loosing a child. This photoshoot was a nice distraction between Jagger's intensive medical care and his hospital stays. We had a lot of fun doing it and of course were anxiously waiting for the results/end product. These days, usually when we wait for results it's his genetic testing or lab work and those are never good or rather status quo. You really dont look forward to those, you rather dread to know as somehow when you think it can't get any worse, it usually does. So Thank You Tiny Sparrow and Catherine for these beautiful photos. We will cherish them forever.

Monday, August 27, 2012

Je suis irr├ęsistible

The beauty and challenge of working from home is to stay focused and not get distracted by our beautiful angel.
It is literally impossible not to go see him every few minutes and play and cuddle with him.

Between work and errands Sebastien was running around like "a chicken with its head cut off" as he likes to call it. Well after speaking with me for a few minutes this afternoon he rushes off leaping down the stairs towards his office while telling me he has so much work to do and needs to call a customer asap. Not even 30 seconds later I hear yodeling, high pitch singing, clapping and feet stomping. I knew exactly what happened and at the same time wondered what happened to the "ASAP". Daddy ran into Jaggy and the nanny on his way to the office (which is on the first floor of our home) as I don't think yodeling is a new communication technique he is using with his customers :). Jaggy must have been awake so Sebastien couldn't resist cuddling and playing with him. Jaggy is just so irresistible. Always has been and always will be! Not sure what it is but I blame his blond hair with semi curls, his long eye lashes and big brown eyes.

Sweet home...

We finally got home Sunday afternoon. Doctors left it up to us if we wanted to stay or go. Jagger was doing better and with all the coughing around us, we decided to go home and hopefully work on his recovery from there. Main thing really is to keep him hydrated and coughing. After laying in the hospital bed for yet another four days, his secretions pooled again in his airway so we just need to make sure he coughs them up and we standby with the suction.

Weekend is the worst time to be in the hospital. Nothing is really happening, the cafeteria has barely any food and mostly leftovers from the week and no hot water. It is as if all patients go home on Friday and return on Monday. Every time we are here over the weekend we wonder about this. I really shouldn't be complaining after the hospital and operating rooms I have seen in Africa with dirt floors, insect crawling everywhere, broken cots or thin foam mattresses on the floor. It makes me cringe every time I see it.

Jaggy is still super exhausted. After partying till 4 am the first two nights, he has been sleeping for two days straight. Occasionally he wakes up, looks at us with his big brown eyes, is content with what he sees and goes back to sleep. We of course take the opportunity to give him sandwich kisses which he seems to enjoy.

I am not surprised he is so exhausted. We all are. The last two weeks have been kind of rough. If I had the opportunity to sleep for two days, I certainly would.

Caption for the pic: Jaggy on the way back home. He never sleeps in his car seat!

Sunday, August 26, 2012

The super bug

It is high time we get out of here. The longer we stay the more chance we all have if getting a hospital acquired infection. I always brushed this warning aside when the docs in the ICU told us we need to get out of here as soon as possible before he gets another infection.

Well just the other day I was reading about this superbug that killed several patients at the NIH hospital in DC (which I believe is also the site of the next Phase of the Epi trial). This bacteria was so persistent it survived vigorous isolation procedures, disinfection with bleach and even some of the plumbing was changed. It continued to spread killing 6 and infecting many others.

Reinventing the wheel and the dangers of technology

Seems like every day we reinvent the wheel because apparently it wasn't round enough the first time.

Everyday with shift change and a new nurse they somehow end up screwing up his schedule. Not sure if it's incompetency or the fact they rely too much on technology/ the computer. We do see a huge change in service compared to the ICU. During shift change they are supposed to give report to the next nurse but somehow I don't think this is happening here. It works well in the ICU. Not so well on the regular floor. We had everything from a nurse literally rushing into our room throwing his meds on the bed and leaving (no, not because there was emergency somewhere else) to nurses coming in wanting to give Valium or methadone again when he just got his last dose 1.5 hours ago. (This would never happen in the ICU. We had to beg the docs before to give Valium at 3.5 hours instead of the minimum 4 hour interval). Apparently the computer said to give it "now". Well this "now" was two days ago when we had to give an extra dose and ended up moving his 6 am dose to 4 am and hence the next one to 8. I know it can get confusing. At home we usually write everything down when it differs from routine because we end up forgetting what happened when, with all the other million things happening at the same time. Relying solely on the computer and no longer practicing independent thinking can be a very dangerous thing, especially in the healthcare setting.

I double and triple check everything at home (I had to throw Meds out before because I couldn't remember if I grabbed the right bottle and checked the label, because the bottles all look the same and the meds look the same). I expect the same at the hospital especially when they have a nurse AND a tech assigned to each patient. Honestly, every time we are on the regular floor we wonder If any studies have been done to show that having nurses AND techs actually improves patient care as we have yet to experience the benefit. To us it is more of an annoyance because it is another person constantly coming in and out of the room disturbing our sleeping angel.

This is why it is such a hard decision to come to the hospital, we can do so much at home with all our equipments, and while we always try to get admitted to the ICU if we must be admitted, this time since his breathing was OK (and it is usually why we come to ER), we had no choice but to agree to a regular floor admission.
And we truly saw the limitation of the "regular floor" for Jagger, simply put, he is way too complex for the regular floor!

Friday, August 24, 2012

Sleepless in...

We are still at the hospital. Everything was ok until about 4 pm. Jagger got a breathing treatment and then was super excited and awake. This turned to major agitation and whining around midnight and lasted till 4 am despite Iv morphine, motrin and extra Valium.
He was arching like crazy and his muscles were super tense. We thought maybe he is hungry since he has only gotten Iv fluid since wednesday afternoon so started some pedialite. I actually thought his magnesium/potassium levels may be low due to the fluid and nutrient loss but those where apparently normal. But I am still wondering if he needs extra of that since he has so severe cramps. His Iv nutrition which had been ordered for the night was never made so we had no choice but to try the g-tube feeds. He eventually fell asleep a little after 4 am. Who knows maybe he was hungry or the Valium did the trick.

Needless to say we are all exhausted. Still haven't caught up on sleep from last hospital admission.

Sebastien and I have been eating only one meal a day. We are too tired to eat and usually sleep through breakfast and lunch. The little energy we have left, we spend double checking everything the nurses and doctors do. Usually we get a little break from caring for Jagger and doing all his Meds while we are at the hospital but with all the mistakes so far, we really cannot relax one second.

Let's hope tonight is better although the way things are going right now it may be another long night.

15 diapers and counting

I have changed more poopy diapers in one day than I normally would in one month.

Jagger is suffering from severe diarrhea and some vomiting which I think is due to the antibiotics he is getting to treat his pneumonia.
The diarrhea got so bad we had to take him to the hospital on Wednesday afternoon. He only produced urine once a day at this point and his stomach was extremely extended and he was swimming in poop every hour or so ( he did manage to poop all over myself, the nanny and the X-ray table).

As usual we got seen pretty quickly however because his labs all looked normal and according to the blood work not dehydrated yet, they didn't want to admit us because the hospital was full and he was not critical enough. (Omg, the ignorance we have to deal with sometimes). On the other hand they had no idea what to do with his diarrhea and I refused to go home like this. He was not producing urine, I was barely able to feed him and he continued to have major diarrhea. He needed to be on Iv to replenish his fluids. They finally admitted us around midnight and good thing we stayed because it took him about 1 day on continuous Iv to get back to baseline. I also stopped at least one of the two antibiotics which I think was the culprit and things seem to be improving (he had been on antibiotics already for 7.5 days so I am hoping all the bacteria are dead by now). Of course they took stool cultures and checked for rotavirus and clostridium difficile but all came back negative. Thankfully!!

We will likely be here another day or two. Still super exhausted from last weeks hospital stay. Sebastien once again had to come straight to the hospital from his business trip.

This time we were admitted to the general floor. I didn't argue because I knew Sebastien was going to be with us overnight. They are completely overwhelmed with his medicine schedule and 30 some doses he gets per day. Despite being here last week the computer system still had everything wrong and we always end up repeating ourselves fifty times. And even with our medicine schedule nicely typed up and copied for them they still managed to screw up a few things and give the wrong doses.

This is why we carefully consider benefits versus risk every time before we get in our car and drive to the hospital. I have started calling it the death trap because each time we actually get to leave the hospital with him alive is a miracle in itself.

Monday, August 20, 2012

10 loads and counting

It is 2 am and I am still doing laundry. I have done over 10 loads in the last two days. Probably close to 15. It just never seems to end. Between our laundry, the sheets full of pee and/or vomit and Jagger's clothes which have to be changed several times a day, doing laundry is a never ending task. Of course since Jaggy is being held and cuddled 24/7 we usually end up with a fair share of his bodily fluids all over us. We are pretty used to this by now and are pretty much prepared for anything except for the latest situation. Antibiotics are causing jagger to have major diarrhea. However he doesn't poop on his own so yesterday we decided to give glycerine and despite several minutes of trying we used the vest to speed things along. Oh boy. What a mess. There was poop everywhere. Spilling out of the diaper. Both Sebastien and I stood there for a minute trying to figure out what to do. I know this is disgusting but it is our life. So Jaggy was literally swimming in poop. Of course I didn't think of using the disposal pads I took from the hospital so instead used every towel I could get my hands on. Big mistake because I was then stuck cleaning all the mess until 2 am Sunday morning. We somehow managed to wipe him clean but not without him protesting the entire time.
Anyway so the entire time cleaning up and doing the mountain of laundry slightly resembling mount Kilimanjaro at this point, I kept thinking of how lucky we are living in a place where we have running water, indoor plumbing and a washer and dryer in our house. During my travels to Africa, I have seen and met many women walking hours to the nearest river to wash their families clothes or stand in line forever at the local well to fill some jugs of water and then skillfully balancing them on their head while walking home. ( side note: I have also tried balancing/ carrying stuff on my head and have to say, it is harder than it looks but very practical and much less painful on your back. Maybe when Jaggy gets to heavy we can try that. Lol)
So the message of this post really can be summarized with this song: "Always look on the bright side of life....."

Saturday, August 18, 2012

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:)

Friday, August 17, 2012

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 :)

Thursday, August 16, 2012

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!

Monday, August 13, 2012

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. :)

Saturday, August 11, 2012

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).

Friday, August 10, 2012

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.

Saturday, August 4, 2012

Sneak peek

Thanks to the tiny sparrow foundation ( 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.