Friday, December 14, 2012

Brighten a Child's life this Christmas!

In such a sad day for our country, I figure maybe we can all do something to brighten the life of a child!!
So please read the following and help me out, I would really really appreciate it!
Back in September 2011, during one of our admissions to the hospital with Jagger, I met a wonderful lady in the elevator. She was moving her belongings as her grand son Dalton was being transfer to the ICU.
A few months  later when Jagger was intubated and in the ICU, we heard some ear piercing, heartbreaking screams coming from the room next to us.
We found out it was Dalton and the screams were because the nurses were changing the dressing on his stomach. It was something extremely painful that has to be done every 2 days:( We became friends with Zandra ( Dalton's grandma) over our stays in the ICU and shared a few meals with her in the ICU family lounge.
She has been taking care of Dalton for a few years after his mother passed away at a young age.
Each time we got admitted to the hospital after that, we met up with her and stay in touch on a weekly basis via text when we were home.
Dalton condition is GI related and very serious ( but that is all I will say to  respect his privacy). A few months back, they were transferred to Pittsburgh and put on a transplant list. That is the only hope for any kind of decent future.
This is even harder for Zandra and her husband as their house/belonging, friend, family  etc are back in Georgia.
 Dalton has been in the hospital for 17 months now and he will have to spend his second Christmas in a row in the ICU.
That is really not fair for a 11 years old. He should be home decorating a tree and hanging up his stocking.
So I was thinking maybe it would be really cool if everyone on my friend list/or reading this blog send him a Christmas/Holiday card. I know  he loves to get mail.
It will only take a few minutes of your time and cost just a stamp and it will make a child very happy!
Now if you want to send a little something along with the card, feel free to do so, but nothing to eat as he cannot have anything by mouth and is 100% G tube fed!!
Address is
Att: Dalton Robinson
Transplant Floor. 7B
Children's Hospital of Pittsburgh
4401 Penn Avenue
Pittsburgh, PA 15224

Please share with everyone you know (on your  Facebook wall is a good place to start), let's get him as many cards as possible!!
And leave a comment if u sent one so I will know!
Thank you so much!!

EDIT 12-20-12:
This is a small Christmas miracle, but Dalton will not have to spend Christmas in the hospital, he is being transfer to a Children nursing home next to the hospital so he can heal before being put back on the transplant list.
So he still have a long way ahead of him before he can get the multi organ transplant that he needs, but the nursing home will give him a bit more freedom!
So if you already sent a card of package, no worries, everything will get transfer and if you have not yet and still want to, here is the new address:

Dalton Robinson

Lemieux Children's home. 

Thank you so much and Merry Christmas everyone!

Thursday, December 13, 2012

EPI 743- TRIP 2 TO AKRON (December 9th-11th, 2012)

Sorry it took so long to write this post. We had been very busy since our return with the upcoming holiday season.

First of all I would like to state for the record that I will never ever travel during football season on a sunday or monday or thursday. It is challenging enough traveling with a child who needs extra TLC, I really don't need another adult with me who is only partially present and more concerned with his phone and checking the latest score. I consider this more of a roadblock than an asset. So for the sanity of all involved parties we will avoid any future travel on football game days.

Even though we drove to Akron the last time around, this trip we decided to fly and then decide which method is the lesser of two evils for our subsequent trips since we have to go back at the end of January and then every few months after that. Ouch.

It seems quite simple, buy the ticket, get hotel, and rental car and off you go to the airport. The reality however is much different. Flying with a special needs child and ton of medical equipment is quite challenging and requires lots of prep time. In fact we started planning this trip as we were driving back from Akron the first time. We needed all new medical equipment for him: portable oxygen concentrator, new portable suction machine, portable battery operated nebulizer etc. The FAA has very strict rules what equipment people can bring on board and use during the flight. In order to get all these things I spent hours calling supply companies and doing research on the Internet. Our regular supply company didn't have a continuous flow oxygen concentrator. They had a pulse only machine which is not good for Jagger. The pulse only concentrator only works if the patient takes a breath. During that breath the machine delivers an extra boost of oxygen. The continuous flow concentrator can deliver oxygen on a continuous flow. No breath is needed. Usually when Jagger gets really upset and in distress he holds his breath so having an oxygen concentrator that does pulse only is useless. We found out that Delta works with a company that provides oxygen concentrates to flying passengers. That is all nice and dandy if they wouldn't charge an arm and a leg for this. Renting a concentrator with extra batteries for one week would have cost us well over $500. Ridiculous! I was able to find a local medical supply company who was willing to rent us the concentrator for 1/4 of the price. Hallelujah.

After calling around again for suction machines, we ended up buying the one our friend Shawna recommended. The one we had was terrible. It barely suctioned, was super heavy and bulky. Whoever said (mainly our supply company) that all suction machines are created equal was very wrong!! Our new portable one is way stronger than any of the stationary ones we have. Actually it is so strong that it can leave Jagger gasping for air at times if we suction too long.

We also bought a nice foldable dolly made especially to roll carseats. We did not want to risk taking his special stroller as they would not permit it on the plane and with all it's moving parts it would be ruined as checked luggage. We however cannot carry Jagger around for long. He is so heavy and cannot support himself it is like carrying a 26 pound sack of potatoes with stretched arms out front of you. This gets very heavy very quickly and extremely painful for back, neck, arms and shoulders.

Even though we usually run late for everything or just on time we did manage to make it to the airport with plenty of time for TSA to double and triple search our luggage. Since we hand carried all his supplies, formula, equipment and medicines we expected to spend some time at security. To our surprise TSA was actually quite easy. They screened his equipment for explosives. They also screened his formula and Meds separately but they didn't make us taste any of it:).

The plane ride there was pretty uneventful. Jaggy was an angel. Slept for some of the flight and the rest he just looked around. Getting all our stuff into and out of the plane however was a disaster. Usually the person holding Jagger cannot do or carry anything else which leaves the other person (mainly me) carry all our stuff or rather all of Jagger's stuff. We also took Jagger's car seat in the plane since he needed a seat and cannot sit on the regular seat. However the carseats was too big to wheel through the isle to our seat so we had to disassemble everything at the plane door while holding up a huge line behind us. After I managed to bring all our stuff and the car seat to our seats I also wiped down the whole row with Clorox wipes. Having a medically fragile child makes you become a germaphobe, not by choice but by necessity.

As usual, it was raining in Akron when we got there. Took us some time to get all our stuff off the plane but flight attendants and the pilot helped out.

Our hotel was about 20 minutes away and only about 15 minutes from the hospital.

We rented a suite so we could have a fridge for his Meds. The other rooms have mini fridges which isn't big enough.

Our appointment went well and pretty quick since this was just a follow up.
After meeting with Dr. C went to get and EKG and blood. Omg. We waited over 45 minutes to get blood taken and of course things were screwed up in the system as they ended up billing or insurance instead of the study.

Jaggy was still pretty exhausted from the trip and as soon as we got back to the hotel Jaggy took a nap until the evening. Some of it with me and then with daddy. We all take advantage of these nice king beds at hotels. Our bed at home is much much smaller and due to the fact that Jagger sleeps with us nobody has any room. We learned to adjust though as there is no way Jagger will ever again sleep by himself. He needs to be suctioned constantly and needs 24/7 attention. And besides Jaggy's favorite thing to do is to cuddle with us:)

We met our friends Jeremy and Cindy for dinner. As always it was nice to see them!

We left Tuesday late afternoon and since hey kicked us out of our room at 1pm we decided to have lunch at the hotel restaurant and hang out there until it was time to leave. It was right before Christmas and there were several Christmas parties going on. Very loud and entertaining but boo didn't seem to mind. He took a nice snooze in daddy's arms.
It started to snow as we drove to the airport! Lovely just what we need potentially getting stranded in Akron Bc of a blizzard! Security again was quite a breeze. This time getting ourselves and and all our stuff onto the plane was also much more organized, less frantic and less yelling. We made sure we did not repeat the same mistakes as on the way there and it definitely helped that there was no football game or any other sporting event causing unnecessary distraction. Lol.

We already made plans for our next trip in February. First thing, we need to find a smaller car seat which is no wider than 18 inches to fit through the isles. Being able to roll jaggy to the seat directly will help tremendously. We also need to figure out if we are going to rent the oxygen concentrator again since Jagger did not need it and it was a pain to carry. Of course if we decide no to take it he for sure will end up needing it.

Jagger seems to have taken this trip well. No major incidents or illnesses. We did shield him from as much as possible and nobody is allowed to touch him.
We in the other hand are exhausted. We used to travel a ton even internationally and it never phased us but this 2 day trip was exhausting. The packing alone is exhausting. It is a huge responsibility making sure we have all the supplies and equipment. Everything is carefully calculated and packed. If anything is lost, stolen, broken or forgotten is a huge deal which may end up costing many hours or days to get fixed. We cannot simply run to the store and buy new stuff. For example his special formula cannot be purchased at a regular grocery store. His suction canula are ordered from a medical supply store. His diapers are special diapers only available online etc etc. Then there are all the unknown environments everything that is not home (airport, hotel). At home everything has a place and we modified many things to fit our needs. We have a bed that raises so Jaggy sleeps at an angle. We also have wedges to tilt his body. His changing table is right next to the bathroom so we can wash him properly every day as he only gets a full bath once a week ( he is still not a fan). We have suction cups in our bathroom to clean his pump bag and so on. Whenever we are not home I am forced to become MacGuyver. I know it sounds funny but it is necessary to ensure the least amount of hiccups or problems. I have to scope out the scene and find a way to make the current situation fit our needs. At the hotel I used the door lock that was on top of the door to hang the pump bag from during cleaning ( I had forgotten our suction cups), I got 6 extra pillows to stuff underneath the mattress to lift up the head. So long story short, we dot get much rest when we take trips constantly finding solutions to potential problems.


Friday, December 7, 2012

Where is Waldo?.....I mean Jaggy:)

Our Mickey collection. We may need to rent storage or open up our very own Disney store. Lol

Thursday, November 8, 2012

EPI 743- TRIP 1 TO AKRON (October 25th-November 3rd)

This is long overdue, but here is the post about our first trip to Akron for EPI 743 drug trial.

First a quick background on the EPI med
There is still no cure for Mitochondrial diseases, but there is a drug trial for a med call EPI 743 (will be different commercial name when it comes out), it has shown to improve life of kids on it, and in a few instances even reverse some of the symptoms (however that was a very small study so those results should be taken with a grain of salt).
We have been trying to get Jagger in the trial since early March, we had it all set to go in June in Akron, OH (one of the very few sites in the country doing the trial and the closest to us) but then the Pharmaceutical company changed a few things in the protocol and it has to be approved by the hospital and the Institutional Review Board (IRB) and that took forever
In the meantime, the trial was moving from Phase 2A to 2B which required a known gene mutation and has a placebo element to it, meaning that half the participant will actually get a placebo for the first 6 months and not the drug itself.
So we could not get into Phase 2B since we do not have a gene mutation at this time, and we were not going to take our medically fragile/immune compromise child across the country to possibly get placebo.
So after months of waiting and sending medical records (almost 2000 pages), test results etc., we were finally admitted as the last patient in Phase 2A!!
 The trial consist of 3 visits to Akron Children’s hospital in the first 13 weeks, then a follow up every 3 months (which we can hopefully do in Atlanta, at least some of it) 

So we embarked on our big adventure.
For this first trip, we decided to drive, it gave us more flexibility and since and we were not 100% sure how long we needed to be there for the initial visit.
I am sure a lot of you drove long distance with kids, but with a special need child, it is a whole different ballgame! Annett was amazing at packing the car and despite being very very full with all the equipment we need for Jagger on a daily basis I was still able to see some of the road in my review mirror.
On October 25th early afternoon we took off for Akron. The plan was to drive 6-7 hours and spend the night in Lexington, KY.
Jagger did very well in his car seat for the first 4 hour or so (and we found out during the trip that was his absolute limit), and we made it without much trouble (even if the last hour was very difficult for Jagger) to Lexington.
After a fairly agitated night (pain crisis that required morphine) we took off for Akron. The remaining 6 hours turned into almost 9 hours of absolute nightmare.
We got stuck in major traffic in Cincinnati first then in Columbus. It started to rain about 1 hour after we left Lexington on Friday morning and rained nonstop until Wednesday afternoon, thanks to Hurricane Sandy. Jagger was super agitated and we were only able to keep him in his car seat for 2 hours or so. About 1.5 hours away from Akron, Mister Jagger decided to poop, so I had to find somewhere to stop to change him, but we were in the middle of nowhere.
So I pull in this old country gas station and we started to change him by the gas pump (only spot that was covered). And here come the TMI, but it was the most explosive diarrhea he ever had. It took an entire packet of 75 wipes and a beach towel to get him clean, it was all over his back, up to his neck and of course he was screaming and moving the entire time and it’s really not easy to change a kid in the back seat of a car! And the poor kid was probably cold, as it was no more than 45 degrees outside!
But after all those emotions, we finally made it to our rental house by around 9 pm. Since we had to stay several days, we decided to rent a house, so we could use the washer and dryer and it was actually cheaper than a hotel.

We did not do much on Saturday and Sunday, and just relaxed, some grocery shopping and I drive to the hospital to make sure I knew where it was for the Monday appointment.
My good friends Jeremy and Cindy that live in the area came and had lunch with us on Sunday; it was so good seeing them. We all went to University of Indianapolis together back in the days and we really don’t get the chance to see each other very often anymore so it was a great visit.
I did get a call from Dr. C on Saturday night, so that is usually not a good sign, but he just wanted to move our 11 am appointment to 7 am as he had to try to get out of town before the hurricane hit full force.
So very early Monday morning October 29th (Jagger usually doesn’t fall asleep until 1 or 2 am and sleep until 10 am so this was tough on him) we drive to the hospital.
We met with Dr. C and his nurse Hilary, we had to answer a ton of question and fill many forms to get started on the trial.
Dr. C did his evaluation of Jagger and they try to take blood. However that was not successful so we were sent to the lab on the other side of the hospital.
The lady in the lab was really good, but the orders were not put in the right way so after she was done and had Jagger blood, we realized we needed more blood, so we had to get him poke again:(
We then had to do a baseline EKG, and we were able to do it earlier than our appointment so we were back to the house by lunch time.
Jagger and Annett were very tired so they took a nap and I went to the Pro Football Hall of Fame. I have wanted to go there for a long time, so I was happy I finally made it there. It is a pretty cool place, and everyone that like football should check it out!

Tuesday morning we went back to the hospital to receive our first dose of EPI 743, and then we had to wait for 2 hours and do another EKG.
So in the mean time we went to the cafeteria and hanged out for a bit, as we were walking back to the heart center, we heard “Code Black” over the intercom and it turns out the hospital had a bomb thread! Their first ever, and of course when we were there! LOL
So the whole place was on shutdown and cops/maintenance people were going room to room checking for suspicious package.
We were still able to get the EKG done and then we went to the parking garage (attach to the annex and not to main hospital) so we were able to leave and head back to the house.

On Wednesday, we just took it easy, relaxed and started to pack.
While in Akron, we were able to see one of our new Mito Mom Friend Shawna and her adorable little boy Braylon. It is so nice to meet in person after talking all this time on facebook!
We also had a visit from my friend Chandra from University of Indianapolis. I have not seen her since we graduated (over 10 years ago) so that was great to catch up for a few minutes and she was able to meet Jagger, even if he was sleeping at the time of her visit!
We had the house rented until Friday am, but we decided to leave on Thursday morning and follow the same itinerary and spend the night in Lexington.

We still hit traffic around Columbus, but nothing near as bad as the way up, however Jagger was a lot more agitated and did not sleep at all (which is not good, as we can usually drive longer when he sleeps). Around Cincinnati, we had to stop to change him and Annett took over while I tried to calm him down in the back. Did not work very well, but we made it to Lexington around 10 pm.
The night was ok, and on Friday morning we left for home; however Jagger had another idea in mind, and was whining the entire time in the car, so we were not able to make it farther than Chattanooga and had to stop and spend the night at a hotel there. That was not plan, but if we did learn one thing with a special need child is that we MUST be flexible at all time, almost nothing goes according to plan!
Jagger was a bit better on Saturday morning and we finally made it home early afternoon on Saturday, it was great being home and I totally understand the saying “home sweet home”
We have to go back early December, and this time since we only have to be at the hospital for 3-4 hours, we will try flying.
That will also be a crazy adventure as we cannot take all his equipment with us in the plane, and it requires a TON of planning (especially with oxygen and meds).
But hopefully that will go well (and Jagger will not get sick with the all the germs in the place) and we can try to fly the next few times we have to go to Akron!!

 Annett and Jagger at the house in Akron
 Sleeping between Dr Visits at Akron's Children
 Ok, now I am awake! What are we doing here??
 Ready to go!!

 Hotel have big beds, I like that:)