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Thursday, November 29, 2012

Ohio Day 5 and 6

Day 5 Wednesday
We spent the day in the hotel room letting Jack rest ALL DAY. I gave him his breathing treatments, cpt therapies with the vest and suction. He took three naps and was happy each time he woke up. Mom left to get food for lunch and dinner.  Nothing exciting happened and I almost lost my mind being cooped up in the little hotel room. I stayed busy taking care of Jack. If it wasn't for getting out of the room and going one floor up to do laundry I think I would have. Being in this hotel room is soooo very different   than being at home. At home there is always something that needs to be done like dishes, laundry, bills, insurance paperwork, cleaning, cleaning and more cleaning and take care of Jack. The hotel room is straightened and laundry is done. There are not any dishes because we are eating take out. Jack is resting and I've seen every NCIS and Duck Dynasty on TV. If I have another day like this one, I will write more. LOL

Day 6 Thursday
We spent the morning getting ready to leave the hotel room for Jack's appointments today. It is always a  huge task getting Jack ready to go any where. His bag has to be packed with diapers, pads, wipes, formula, water, meds, syringes and extensions. His bag should have everything he needs to survive while away from home. We got to the hospital and it was like a maze getting around. It reminded me a lot of the way LeBonheur used to be before the new hospital except it was labeled better. the PT evaluation went well. We only had to do the first part that concerned rolling, trunk strength and head control. The second part was about balance and walking which Jack can't do. It really didn't last long at all. While we have been in Ohio Jack's O2 tank decided to leak. I went looking for his extra O rings that typically are the culprit when the tank leaks and couldn't find them. I asked the PT for help with the  leaking tank. She went to Respiratory dept. and got someone to come back to PT to help me. James, the man that came was pushing 100yrs old but was extremely knowledgeable and helpful. He fixed Jack's tank for us. While we were waiting on the O2 repair. The PT told us that Jack is the second child enrolled in the study at Akron. I think not so many have been enrolled because things for the study are just getting up and going in Akron. I think there are a lot of behind the scenes arrangement going on between hospital, Drug company and FDA. We also forgot to pack Jack's bath chair. It has been difficult giving him baths. I will not forget on our next trip!  Jack's next apt was way across the hospital in the Heart Center.  Jack got an EKG. It didn't take long at all. We found our way back through the massive maze that is Akron Children's Hospital to the garage. On our way back to the hotel we stopped at Target. I bought some supplies to organize Jack's medical records better. The medical record notebook I keep for Jackson came in very handy with our visit with Dr. Cohen on Monday. Organizing it will also keep me busy! We got dinner and went back to the hotel. I got Jack settled and he went to sleep. Mom and I ate dinner and now I am typing to all of you! Have a good night! Thank you all for your prayers!

Tuesday, November 27, 2012

ohio trip day 1, 2, 3 and 4

Day 1
It was a CRAZY day! Mom, Dad and I packed the car. John took Elizabeth, Wesley and Daisy Mae (the dog) to my sister-in-law's house. God Bless her! I love you, Lynn! Y'all know I married John just to have Lynn as a sister-in-law! LOL The good bye's to the kids were hard. Even though I have a college degree, I don't have a fancy career to go with it like I thought I would. I will probably never be employed outside the home because of the care Jackson requires. My children, home and mito are my jobs. The good bye's to the kids were, oh so very hard for me! Knowing that I would not see them for at least 2 weeks was just excruciating for me.  It was not hard, however to say bye to Daisy dog. I love her but she is a cat turd and garbage eating dog. LOL John also had to pick up Jack's prescriptions he would need while we were gone. Walgreens had to go round and round with insurance to get this done. Why can't anything just be simple?  So with the car packed to the roof with two weeks of supplies for Jack we set off towards Nashville with Mom driving. I sat in the back next to Jack so I could feed him, entertain him and meet all his traveling needs. Jack would cough and I would suction. I hoped that he wouldn't get sick before our trip but it happened regardless of my efforts to avoid illness. I  just prayed I wouldn't get car sick. I can get car sick quick!!! I am so used to driving myself everywhere that the least little change will make me nauseated for hours. I was so blessed not get car sick.

Day 2 Sunday
We drove from Louisville, KY to Akron, OH. It was uneventful until Jack decided he was really tired of his carseat. He threw the kind of  fit only Jack can throw when he is tired and wants his momma. Believe it or not that sweet little angel can throw a BIG fit when he wants something he is not getting (like being held/snuggled when he is sleepy).  I took him out of his car seat and he immediately calmed down and eventually fell asleep. I know...I know it was not a safe move taking him out of the seat. We didn't know what else to do. Nothing I did "fixed it" for Jack. He was not a happy boy and we didn't have the time to stop and let him snooze. We got to the hotel earlier than I excepted (thanks to John's lead foot) and moved in. We let Jack rest and ordered pizza for dinner. Jack and I collapsed early. I had a crazy dream Sunday night. I was shopping at an antique mall. I was with a whole group of people and we were all just having a blast looking at all the old junk. Somewhere along the way I bought an old, very large, very heavy upright piano. I then pushed it through the store for the rest of the shopping trip/dream. It doesn't take a degree in Psych to figure out what that dream meant. LOL

Day 3 Monday
John, Mom, Jack and I went to Akron Children's Hospital today. We saw the "The
Wonderful Wizard of mitochondrial disease", Dr. Bruce Cohen. After I saw the 15 page contract, I started second guessing our decision to participate in this drug trial. The idea that Jack might get the placebo and not take his Co-Q-10 made get me worked up. The way the study works is 1/3 of the participants will have placebo and 2/3 will get EPI 743 the first 6 months. The last 6 months of the trial everybody will get EPI-743. After I realized Jack really had a shot at getting EPI 743, I was less nervous. I was hopeful! There were other tests that Dr. Cohen did like a general neuro exam. Dr.Cohen also did a Newcastle score on Jackson. in order to qualify for the study the patient has to score between a 15-60. Jack scored a 34. Don't ask what's in it, I can't remember. The test questions of what I remember seemed very subjective in nature. I think it is just a way to try measure changes (good or bad) in the patient taking the EPI. I don't think the Newcastle score was as important as the genetic dx. We have more visits to Akron than I originally thought. The trial requires several visits for various tests.  Visit 1 lasts the longest and is the screening visit/baseline visit.  We will travel back to Akron at 4 weeks, 13 weeks, 26 weeks, 30 weeks, 39 weeks, 52 weeks. Each visit we will see Dr. Cohen, have  blood drawn and various tests. Jack had blood drawn at this first visit. Jack will have a PT evaluation on Thursday.  He will have his MRI on Monday. I hope before we leave I get to see the MRI or talk to Dr. Cohen about changes (if any) in Jackson's brain. We were going to try to get the MRI on Friday but Jackson has come down with a cold and we want to give him more time to get over it before sedation with MRI. If Jackson is congested when it is time for the MRI they will not sedate him. The sedation is necessary  for Jack even though he doesn't move. I think it would be very traumatic for Jack to be restrained in a strange place with a very loud machine and no momma in sight. I am very curious to know what Jack's brain looks like 5yrs after diagnosis. He has only had two MRI's. He had one in 07 after his initial onset. He then had another 6 months later. Every time I ask for records for this second MRI LeBonheur says they don't have a record of it. They also act as if I am making it up that Jack had a second MRI. Well, I have only one thing to say about's a copy of the bill you sent me. I had another crazy dream. I dreamed I was in a perfectly good commercial airliner. Where we were flying I have no idea. Why I jumped out of the plane I have no idea either. I remember falling and pulling the cord to make the parachute of out of the pack on my back. When it came out it was pretty and I slowly drifted to earth. It doesn't take a degree in Psych to figure that one out either. LOL

I also got word late tonight that Jack's mito buddy, Eric Clement passed away. I met Eric, his mom Meghan and his Aunt Amy during my visits to Nashville. He was a sweet, bright, angel faced boy! He will be greatly missed by everyone that knew him. Jack's other mito buddy, Taylor is  still in the PICU at Vandy. She is fighting mito with all her might. These two situations just made me realize how important this drug trial really is. I am so grateful for this opportunity to try EPI 743. This opportunity to just have a chance at trying a drug that may offer so much for those with mito is truly an answer to prayer. Since the day I heard the words mitochondrial disease I have prayed for a cure, treatment, something for mito. I hope that my efforts today will eventually lead to cure in the future for mito. I saw a segment on the Today Show the week of Thanksgiving about Mrs. Barbara Bush and her daughter Robin that she lost to leukemia in the 1950's. She fought like a pit bull against cancer. She sought out the most modern treatments for her daughter. She said "look how far medicine has come with pediatric cancers".  She thought if Robin was dx now with the kind of leukemia she had she would live. I know they can't cure all cancer now but cancer medicine has made just remarkable advances since Mrs. Bush's daughter Robin was diagnosed. It was an inspirational story. My Super, Big, Huge, Amazing Dream is to one day have a hospital for mito like St. Jude is to pediatric cancer. I want a hospital with millions in the bank solely dedicated to mito research.

Day 4 Tuesday
Jack woke up with pink eye. I called Dr. Frizzell and got a script sent to a Walgreens near our hotel. I got Dr. Cohen to give Jack a script for antibiotics so the bacteria won't have a chance to get hold of Jack while the cold virus runs it's course. It was a day of rest for Jack. He needed it. He is still fighting his cold. I have had to suction a lot. I am getting out a lot of thick mucus. Jack can't mange his normal secretions so the suction is necessary so he doesn't choke on his on secretions. No tests, no appointments or travel today. We spent the day in the hotel room waiting to here if Jack go in the study "officially". About 1:00 we got the official word that Jackson is accepted into the drug trial. I am super excited! We also got part of the plan for the rest of the visit. Thursday-PT evaluation and Monday-MRI

Monday, November 19, 2012

Meat Order Pick Up

Jackson had a very big day today. He went to the pulmonologist. We just got refills on meds and a sinus xray to check for sinus infection. Jack has had lots of drainage lately. I just wanted to check on it before our trip. Then he ran errands with me and Elizabeth all day. His nurse is out sick. It was hard on him going with me on the errands. The errands I had to do were all drive through errands but he was in his carseat a while after sitting in his wheelchair for several hours. He was beat! We came home and he slept.
If you ordered a Ham, Turkey, or Boston Butt from Jackson, I am going to pick them up in the morning. You can pick up your Ham, Turkey or Boston Butt at the following locations #1 Wendy's Parking lot at the Stateline Road Exit off hwy55 at 10:00 #2 Bartlett (stage/barlett road) Kroger Parking Lot at 11:00-12:30 #3 E.A. Harrold Elementary (Wilkinsville/West Union) at 1:00pm #4 Millington Kroger (hwy 51) at 1:30-3:00. If you can't make these pick up times please private message me, text me (568-2788) to make arrangements to get your meat treats! Thanks so much for all of your support! Jack couldn't get to Ohio without you!