Sunday, December 22, 2013

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!


Monday, July 8, 2013

"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 4th 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!







Thursday, June 13, 2013

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
 

Monday, May 20, 2013

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.



Monday, April 22, 2013

"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!








Saturday, April 20, 2013

Energy For Like Walk- Atlanta. Moves Like Jagger



This post is way past due, but the last weeks have been pretty crazy. Jagger is back in the ICU with the start of lung failures (post on that to come in next couple of days)
In top of it, we are officially involve in the real estate transaction from hell, we are suppose to close on May 23rd but so many last minute crazy events happened since we signed our contract that I am not even sure what will happen!
So let’s get back to the walk!
It was such a great event, and it was so rewarding to see all our hard work (as I m a part of the organizing committee) paid off!
Everything went as plan and we had a larger crowd that expected.
We estimated that 800 people showed up and we raised almost $80,000 (we are still counting some of the money from the day of the walk).
I was also able to meet a few of my fellow facebook Mito families and it is great to finally meet after talking online for so long!
I also wanted to thank everyone that came and walk with our team (my host family came from Indiana and Arizona and my high school friends came from Indiana), everyone that donated to our team and everyone that took a minute to check our Moves like Jagger page and shared with their friends to raise awareness.

Of course, the only thing that would had made that day better for me, was if Annett and Jagger were able to participate, and I hope that next year, Jagger will be leading “Moves like Jagger” at the 3rd Annual Atlanta EFL walk.


 The UMDF also had a EFL walk in Evansville on May 4th and some of my high school friend started a team and walk that day. Thank you very much to Allison, Augusta, Michelle and her husband Craig! It is so cool to see Moves Like Jagger team going "National" :)


Great Crowd at the Walk


 Everybody is dancing!!


Moves Like Jagger Team (Libby, Riley, Rebecca, Stacy, Sebastien, Tisha
Leslie, Tiffany, Christine, Don, Samuel. Only missing on the pic
are Madeleine-photo shy and Gabe-stuck in traffic)

Team Shirts from the back

And we are walking, along with 800 of our closest friends :)

Even the Chick-Fil-a cow was there!

Moves Like Jagger Evansville Team (Augusta, Allison, Michelle and Craig)

Wednesday, April 10, 2013

Sleepless in...

We finally did Jagger's sleep study. It went exactly as expected. Jagger couldn't sleep with all this stuff on his face and whined till almost 2 am. He did sleep for about 3 hours but did none of the weird breathing noises he does at home. Well let's just hope this study shows something because we have no intention of repeating it. I think subconsciously we kept delaying it because we knew how challenging it would be and honestly we have enough day to day challenges with him we don't need any more. We are also in the hospital so much with him going there voluntarily for non illness related issue takes some convincing. Also we are a bit anxious regarding the results. We know a bpap or cpap would ultimately help him breathe better but it's another piece of equipment and he would have to wear a mask at night. Not exactly sure how that will go since he hates anything on his face except for our kisses and he still only sleeps snuggled in daddy's arms.



Sunday, March 17, 2013

Energy for Life Walkathon-April 20th, 2013

After we found out that Jagger has a Mitochondrial disease, we were able to find a lot of good info from the United Mitochondrial Disease Foundation (UMDF).
Of course, since I can't stay still, I decide to get involve with the UMDF. I first attended the symposium in DC last June and it was such a great event, along with 3 other Mito parents, we organized a small symposium synopsis in Atlanta upon our return to be able to share the info that was presented in DC with all the Mito families that could not make it to DC.
Another event I am currently involve with is the Energy For Life (EFL) Walkathon. I am in the organizing committee and I am the Co-Sponsorship lead.
This is the second year for the EFL walk in Atlanta but we did not participate last year as we were very new to the Mito world and not aware of the walk!
However, this year on top of helping to organize the entire walk, we also created a team to support Jagger and join the walk. We decided to keep the same theme as our website: "Moves Like Jagger". After all we will be walking/moving!
The walk is on April 20th, 2013 at Centennial Park in downtown Atlanta. It is right between CNN Center, the World of Coke and the GA Aquarium, so there is plenty to do after the walk if you have never been to Atlanta.
The registration opens at 8 am and the walk starts at 10 am. It is 1 mile thru the Park with beautiful landscaping and great skyline views of the ATL.

We would love for everyone to come walk with us, but we know it is not possible, however you can register as a Virtual walker on our team, even if you cannot be present.
The goal of the EFL is two folds, 1) raise funds to find a cure and 2) promote awareness of Mitochondrial diseases.
So if you are in a position where you can make a donation as big or small as you want/can, that is great, but if you can't please just spread the word about the EFL walk and Mitochondrial disease and feel free to leave us a comment on our EFL page.
Here is the link for our team, we hope a lot of you will join Moves Like Jagger!

EFL Atlanta, Moves Like Jagger

See you on April 20th!



Friday, March 15, 2013

Barbershop

Aside from bathing and changing another challenge regarding personal hygiene is cutting Jagger's hair. He doesn't have head control and constantly moves. We cannot (and don't want to) take him somewhere to get his hair cut so this is another skill I have to learn. I don't know anything about cutting hair but decided to at least buy a real hair cutting scissor. Not sure it really makes a difference because according to Sebastien I butcher his hair every time. Oh well I never claimed to be a hairstylist and the good thing about hair: it grows back!!

Let's just say my latest attempt was pretty unsuccessful. I used his wheelchair to prop him up but by doing so I was only able to cut about 1/3 of his hair. He now had a mullet as I can't reach the back and the front is a bit crooked as he kept turning his head.

Considering the difficulty we are having cutting his hair I can't imagine what we would do regarding his teeth. I hope he never has to go to a dentist because they would have to sedate him for sure and we cannot do that.

Friday, February 22, 2013

Waiting to exhale....

We went to see Jagger 's pulmonolgist today. I was pretty excited that I was able to get an appointment with her so quickly. Usually she is booked 4 months in advance. The recent hospitalizations made it very clear that we need to do something differently to care for his lungs. It has been almost a year since we saw Dr. B. we hate to take him out of the house for doctor visits where usually nothing gets accomplished or we learn nothing new but this one was important. We really needed her help to figure out a plan to keep him from having all these pneumonia episodes. No one else has been really helpful with that. Our hospice solution to everything is increase his medicine doses for the narcotics ( eg. Methadone and Valium). I finally told them we disagree with this approach if his pain and discomfort is due to and infection. By now Sebastien and I can usually tell when he's coming down with something and just increasing his Meds will not help his breathing or irritation if the underlying condition/ cause is an infection and will not keep us out of the hospital. This is what I call tunnel vision! Just because he is in hospice or has a terminal illness does not prevent him from getting other infections which can and should be treated.

Dr B. gave us some good ideas and came up with a plan to help clear his lungs and heal them! I does involve more Meds but all inhalation so that's ok.

I was very much looking forward to this appointment expecting her to give us some answers/guidance. Which she did! She is also very knowledgable about mito which helps tremendously. Overall a great visit. Let's see if her plan works!

"oh happy day, oh happy day"!

Jaggy has been smiling non stop since we got home from The hospital this past sunday. He was actually also pretty content in his car seat in the way home.
Sometimes Jagger smiles and laughs after his Myclonic seizures but this time he was smiling just like that. He would see me and smile:)





Thursday, February 21, 2013

To bathe or not to bathe that is still the question!

I think we need a new bathing solution for Jaggy. What do you guys think? Lol

Trying to coordinate getting a bath chair from our DME company and Medicaid. Oh joy. Let's see how many denial letters they will send this time. Still dealing with payment issues for his stander.



Monday, February 18, 2013

Hospital stay #s 14, 15 & 16 but who's counting. Lol

My new years resolution for 2013 was to reduce our hospital stays to 2 total per year. Well we already passed this number by mid February. I guess I should think about a new resolution:)
Jagger had been hospitalized twice for aspiration pneumonia and atelectasis and once for rhinovirus. The second aspiration pneumonia was bc we went home too fast after his rhinovirus. He kept vomiting for three days after every feeding despite only half strength. Lesson learned. Either we stay longer and wait till he tolerates his feeds for a few days adjusting up and down while keeping him hydrated on IV but risking further exposure to other bugs or go home on IV which is another challenge in itself bc our hospice doesn't provide IV fluid. We are trying to negotiate with them. Poor boo. His lungs need a rest!!
Since we were in the ICU at the end of January, we had to posptoned our trip to Akron for the EPI trial. We are schedule to go at the beginning of March now. It will be the "final" visit for the trial, but we still have to go every 3 months or so for follow up visits as long as we want to stay on the drug and it has not been approved by FDA (probably until end 2014 at earliest). We are trying to work with the team in Akron, to have 2 of the 4 yearly  follow up done in Atlanta, that would be a tremendous help for us!

I have to say though finally after 15 stays folks at the hospital are finally starting to get things together. They follow our instructions, warmly welcome our ER protocol and love our two page medicine sheet. We no longer have to say anything. Nurse comes in and automatically asks about our medicine sheet. Either she heard about it from another nurse or remembered from last time! I guess we have made quite an impression! With over 30 doses or so a day you have to have things written down! Anyway they love it! Our instruction/ medicine sheet consist of two pages which are laminated/ in a plastic sheet protector. One has a table which lists his medicines by time and dose. The other sheet lists all the Meds together by total dose per day and bulleted instructions regarding his feeding schedule, and other important information regarding his care. We developed this sheet as a quick reference for our nanny or anyone else who would have to care of him in the event shall anything happen to Sebastien or myself. I am also working on a true care manual but needed a cliff note version for immediate care.





Thursday, January 31, 2013

Foodie

I must admit I am a Foodie.
I just love food, I love to cook it and to eat it.
But with Jagger there is no much time to cook anymore, or to go out to eat.
I used to travel a lot for work, and I was very often gone the entire week, leaving Monday morning and coming back Friday afternoon, so we had a habit to go out to eat every Fridays evening after I return and we were able to catch up on each other week's event. And usually we ended up at our favorite Sushi place!!
But those days are over and I can't even remember last time we had a meal just the two of us, probably close to 1 year.
So to make up for it, I try to get some "fancy" food delivered once in a while and since we were having company for Christmas and New Year, I figure it would be a great time to order some food.
So I got a full 16lbs boneless leg of Prosciutto di Parma, Red Label, my favorite ham. If you never try it, you are totally missing out.
I also got some great Prime Ribs and we enjoyed them with Annett's parents and with my parents.
And last but not least, I was able to find a company in Hawaii that deliver fresh caught Ahi Tuna.
One of the many things I miss about Hawaii is the amazing seafood, and this place does it right. It is shipped between 5-6 hours after it is caught and you get it the next day. Not cheap, but they had a great special for the Holidays, so I ordered twice and we totally enjoyed some seared Ahi Tuna and some Poke.
Annett got me a Poke recipe book for Christmas so I had to try a few of them, but it is hard to find Tuna in Atlanta that is fresh enough for Poke and you cannot make it with any fish that was previously frozen!
But now that everyone is gone and that we been so busy, mostly being in and out of the hospital, I am finding myself eating frozen dinners! LOL, so I need to work on my next food buy!! not sure what it will be yet!! :)
So enjoy the pictures below and Bon Appetit!!

Must Try Ham!!
 Prime Rib "Before"
Prime Rib "After"
 Fresh Ahi Tuna from Hawaii
 Seared Ahi Tuna Steaks
3 kind of Ahi Poke and a Kona Brew to wash it down