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