And the award goes to.......

Jagger is and always will be the center of our universe. Our lives evolve around him and he is most happy and content with mommy and daddy. He craves our affection and hates being alone. Pretty much nothing changed since the day he was born:). He loves to be held, cuddled and kissed which we gladly do all day long. And honestly I am glad he lets us because he is so adorable, we cannot resist! It really is impossible to walk by him and not give him a kiss or touch him.

He continues to sleep in our bed and now that we have a big king size bed it's even better. He sleeps right in the middle cuddled between mommy and daddy both holding his hands and giving sandwich kisses. He really loves it and is completely content waking up like this every morning and so are we:)

Sebastien is still Jagger's absolute favorite person but I am trying my best to steal this title:) But one thing never changed. Jaggy is and always will be mommy's favorite person:)

Any Given Sunday

Until reverently our household was pretty much divided. Colts vs Broncos or rather Peyton. Now that the Colts are out of the playoffs we can finally focus all our attention on the Broncos/ Peyton. We are hoping that the sports gods are kind this year and grant another Super Bowl victory to Peyton Manning. Yes, for those of you new to this blog, we are huge Peyton fans. After all Jagger's middle name is Peyton after Peyton Manning who according to Sebastien is the greatest player who has ever played the game:) So good luck Peyton on February 2nd. We are cheering for you 200%. And in case you would like to change your key play word from "Omaha" to something else. I have two suggestions for you: 1. "Jagger", 2. " Timbuktu". I think the latter will most definitely confuse your opponents. Lol. 

Once upon a time (Hospital Stay 19,20 and 21)

It's been forever since we posted. Not because we didn't try! It's been a crazy year and honestly neither Sebastien or I had the desire or emotional strength to relive everything again for a second time. It's is hard to describe to others but to sum it up. Life has been extremely exhausting!

Sebastien already posted a little about the house but that's just a small part. 

The year started with several hospital visits and pneumonias (see previous posts). Once we started bipap around April/ May things improved significantly. His lungs were starting to heal and look healthy. Then our nanny got sick right around the time we decided to look for a new house. Many homes were visited twice, once by Sebastien and once by myself as we could not go together. We took Jagger along ones which was very very difficult. 

Our nanny continued to miss more and more days of work and ultimately had to leave us around the time we found a new house due to her health. Moving was a disaster. There was no time for organizing/spring cleaning. Everything was packed mostly by my parents and myself. With my parents help we finally moved around July 4th weekend it was a mess but honestly there was no other way if we ever wanted to move. I am still busy organizing, cleaning and decorating 6 months later.

Then we decided to get nursing. Since our nanny left we had been without help for weeks which had  put a huge strain on Sebastien and my abilities to do our jobs. We both stayed up many many nights till 3 or 4 am just to finish our work when Jagger is sleeping. The whole nursing thing ended up being a disaster also. Usually Sebastien is the one that dramatizes everything but I think he would agree with me. It was one headache after another. 

To make it brief, nursing agency took forever to get doctors orders, insurance approval and find us a nurse. We had two that never showed up. And then two others who quit after 3 days. And one who kept quitting and coming back. The one thing we didn't want and which we made very clear to the nursing agency was that our house is not a revolving door. We want one nurse and one nurse only and not someone new every week. That concept seems completely foreign to them. Also meeting the nurse prior to her coming to start working was another foreign concept. Maybe Sebastien and I are anomalies but to us it seems logical to ensure customer satisfaction. 

After a few weeks of extreme frustration, disappointment and many headaches our insurance decided we no longer need nursing and they denied everything. It didn't help that our nursing agency got orders signed by a doctor that we never met and who doesn't know anything about Jagger. So when our insurance reached out to the doctor to get clarification about prescribed treatments they never heard back and hence denied everything. Two months and two appeals later they now approved it again for 90 days. After that we will see. But a month after approval we still don't have a nurse!

While all this was happening Jagger's health declined significantly. He started having major struggle breathing mixed in with severe pain crises and we ended up in the hospital again in October. This time around though not for pneumonia but atelectasis. His lungs are collapsing because he is too weak to take deep enough breaths. We spent thanksgiving in the TICU for the second time since Jagger was born, so it looks like that his our new family tradition, Thanksgiving in the ICU. We went home the weekend after Thanksgiving but things never improved. Breathing was terrible. Struggling everyday. Doctors started to hint that it's disease progression. We knew this was coming but our hearts still filled with sadness and anxiety. Another hospital stay right before Christmas confirmed that the disease is progressing (Sebastien will post more about that). We were able to do an MRI even though he was awake. Conversations again started to center around further interventions and if we want to Trach him.  I hate talking about it or thinking about it. But I agree with the Doctors. We have to think about it to prevent making any rash decisions in an emergency. It's just extremely difficult because the only reason I would ever consider putting tubes in him is if it improves his quality of life. But no one can guarantee this to us. So we could just potentially prolong his suffering. Its a decision no one should have to make!

After 20 stays we can do it all even de-access a port!

Trauma Room, waiting for an ICU bed, Hospital Stay 21

Let's get on a chair for a few minutes- Hospital Stay 21

Look who served Thanksgiving lunch at CHOA! The Champ himself.

Taking a walk with Mom- Hospital Stay 21

I even got to see Nemo but I was so tired I couldn't keep up with his swimming!

"Steel" magnolias

I am finally starting to catch up with the posts, so this is probably not news to anyone but I still wanted to post it on the blog!!

Well, we have a new home for Jagger aka Jagger's Palace lol. It has a beautiful magnolia tree in the front yard and is surrounded by many tall pine trees. 

We loved the old place, but it was a townhome and has 3 stories so as Jagger is getting bigger and bigger (about 35 pounds), it is getting harder and harder to get him up and down the stairs, so we have to move.

It took us a while to find the perfect home for him and we ended up looking at 18 homes but we found the perfect one.

Unfortunately , it was a sale by owner and not to get into details it was the real estate transaction from hell, we even had to get a lawyer to get it done (which cost us more money of course).

But now we have the home, it is a ranch with hardwood floor and very wide hallways and door frames which is great for his wheelchair/stroller.

Even the home inspector said that he never saw such home before and it was build for handicap people for sure!

We will be able to move him around a lot easier and we even have a backyard. Now, Jagger doesn’t really like to be outside, but we will try now that we have a private yard for him.

The owner left the house very very dirty, messy and left a lot of her stuff she did not wanted anymore, so it took us a while to get everything ready and we were able to move in on July 4^th weekend thanks to Annett's parents who were such amazing help!

UPDATE: We have now been at the house for 5 months, and we do love it

It is so much easier with Jagger, and he gets to see a lot more since he is not stuck into one room most of the day!

We still working on getting a ramp so we can get the wheelchair to the back patio, so when the weather gets better  we will be able to take him outside.

Front of the house

Back Patio, hopefully we can take Jagger to it soon!

Kitchen before

Kitchen After. Annett surprised me with an island while I was on a business trip!

2013 UMDF Symposium, I am on my way!

It is that time of year again, Symposium time.

This year it is in Newport Beach, California, so it is not the best location for all of us East Coast Mito families but it is a rotation, so it is fair to everyone. Next year will be a lot closer since it is in Pittsburgh!

Last year in DC was great, I truly learned a lot and met some many great families that understand what we dealing with on a daily basis.

In the last year, I became a lot more involved with the UMDF and I know have a lot more about Mito and how to care for Jagger, so I am not sure what I will get from the symposium this year, but I am confident I will come home with new knowledge that will help Jagger.

I am also looking forward to see some of the Mito families I met in DC last year, it is the one yearly opportunity for families to meet.

When you have a Mito child, you really don’t have a lot of time to go out or travel at all.

I really wish that one day Annett will be able to join me, but for that to happen, the symposium will have to be in Atlanta, so maybe I will talk to the UMDF about that!

I will try to live tweet and Facebook as much of the symposium as I can, and as last year, I will be posting my notes and audio files of the presentation I will be attending on the blog (but it will take me a few weeks for sure, since we are so buys right now).

If you are on twitter, my handle is french_sebo and the hashtag that will be used by everyone there to post about the symposium is #UMDFsymp

You can search by hashtag and find all the post related to the symposium

 

Dazed and confused... hospital stay #18

Not even a month after our last stay we are back at the hospital. This is getting ridiculous. We are still exhausted and barely got our old rhythm back. Also, we had finally convinced hospice that IV fluids are good for Jagger and he needs them on occasion( took about a year of convincing), they came out last week to do a treatment. But as with everything else nothing is ever simple or without argument and we ended up at the hospital again anyway...argh. I am not going to go into a lot of details but sometimes I do think we should write a book about our experiences. So long story short, the treatment they had proposed was extremely excessive and actually very dangerous considering Jagger's heart condition. Sebastien and I are not stupid and do not blindly agree to things just because it comes from a health professional. So we did some quick research to confirm what our gut and intelligence already told us which was not to proceed and right we were. So we refused unless they did things our way which also was the right thing to do from a medical standpoint. I wanted to mention this as it is just one of many examples where Sebastien and I decide and advise health care professionals on Jagger's treatment plan and not the other way around even though we are not the ones with the medical degree. And to all those folks who read the blog and who do not have sick children to care for I just wanted to explain the difficulties and complexities we face every day and that we literally CANNOT ever relax or take a break! We have to make life or death decisions even at 3 am completely exhausted and sleep deprived.

Back to the hospital stay. Well once again pneumonia ( or so we thought because thats what they said in the ER) and back to the ICU. His white blood cell were at 27,000 that is the highest we ever seen with Jagger (normal for Jagger is usually below 12,000), so we know something was not right! They were going to send us to the regular floor but once we mentioned BiPap it was either the TICU or ICU. TICU was full so we ended up in the ICU which was actually a good thing. Turns out that he was starting to have lung failure/ collapse (atelectasis). Once again you have to love the inconsistencies. ER said pneumonia. ICU said : "lungs are collapsing we need to do BiPap as much as possible and have you thought about a Trach". Internally I was screaming: "WHAT, Trach?? Are you serious? " I am not prepared to have this conversation yet and I don't want to think about it. So we focused on the BiPap. Kept him on it for 12-15 hours round the clock. Even when awake. Of course this was a huge change for boo as he barely used it at home. Even though we had it and tried it a few nights here and there, we were not consistent and let him dictate. He has sensory issues and doesn't like anything on his face except for our kisses. Well those days are over. From now on 6-8 hours minimum every night! At the hospital boo did quite good but he was also too sick to fight so we were able to do BiPap between 8-15 hours every day and repeated X-ray showed significant improvement which mean that for now the bipap is working and extending his lungs to make it easier for him to breath and less likely to get pneumonias.
Once his lungs looked better for a few days and he was tolerating his feeds we were able to go home.
Let's hope this time we can go a little longer between hospital stays.

"Iceman"( yes Top Gun)....hospital stay # 17

Back again. Fourth time this year and it's only April. We actually went to the ER a week ago thinking Jagger had pneumonia but X-ray was clear and bloodwork was ok. They gave us antibiotics and steroids nonetheless. Antibiotics in case he was starting to develop pneumonia and steroids to open his airways and help with his funky breathing noises. Well sure enough we are back a week later with major pneumonia. Worst one he had so far and back in the ICU. We had a sleep study done as well and although it was normal we decided with the our pulmonologist and ICU docs that it would be a good idea to start bipap to help keep his lungs inflated.
So we started bipap. Oh boy. We were able to convince the doctors tht a full face mask may not be ideal due to his bad reflux and vomitting. But what they brought wasn't any better. Lol. Pictures say it all.

After 10 days in the ICU he was well enough to go home and we got both cough assist and BiPap from our DME company. Yuppy more stuff!! Thankfully they have nice equipment and a nice nasal mask that doesn't look like something from the last century or something they use in a laboratory. And this one actually fits properly! Since Jaggy boo still sleeps in our bed cuddling with daddy (don't think this will ever change) Sebastien was not looking forward to the BiPap at all. But we do what we have to for our precious baby boy!

Unfortunately he missed the Energy For Life Walkathon! But we had a great team walking on his behalf and many many generous donations!