Jason Michael Brewer
"JJ"
Jason
MARCH UPDATES
Saturday, March 1, 2003: Jason ate some pudding yesterday. He did pretty good with the first bite. But, then started coughing after the 2nd and 3rd bites. He says it hurts to swallow. It takes a lot of muscles to swallow. We take it for granted and don't realize how hard it is. But, he is trying. We need to get him to practice swallowing more. He just doesn't want to do it. He had his hearing test. He is completely deaf in his right ear (his ear drum is fine - this is a neurological problem). The audiologist informed us that there is no operation to fix his hearing problem - but is referring him to ENT (Jason heard every word she was saying - I am filing a complaint - she should have taken me aside and told me the bad news, instead of bellowing it out in front of him)- she stated she could recommend a hearing aid - but, she knows a boy his age would not wear it. She is probably right about that, I doubt if Jason would wear it. We will see what ENT recommends. He was very down in the dumps yesterday afternoon - he did not even want to get out of bed last evening. He did cheer up some, when relatives and friends showed up and played with him. He was okay when he went to sleep. I felt so sorry for him - as yesterday (for the first time) he pulled up this web site and started reading (from the very beginning) the updates (this was before he went to the audiologist appt)- he got as far as Feb 17th and then we had to go to his appt. He did not want to talk about any of it, with me. I asked if he had any questions. He said "no". Maybe he will talk to someone else - I don't know. The doctor's are now talking about feeding him a different way. Instead of being hooked up to the feeding bag on the pole, they will take a big syringe and just poor it into his G tube that way and he won't have to take that pole with him every where he goes. He will definately get the trach out Monday. Then I can take him any where in the hospital without of nurse. We can go for a walk. Hopefully, by the time we leave here, he won't have the feeding tube, either. Thanks so much for all your prayers and thoughts. We are not out of the woods, yet. Please keep them coming. I'm still praying a lot. We went to mass last Sunday and I'm planning on us going this Sunday. Father Mark is great!
MESSAGE FROM GAIL: I want to thank my stepson (Scott) and daughter-in-law (Beth) for my wonderful present last Saturday. They hired a massuse (sp?), who came to the Ronald McDonald House and gave me a 1 hour full body massage. It was wonderful!!! I have never had one before. It relieved so much tension and stress. I could have fallen asleep and slept for hours. The Ronald McDonald house said this was a first for them - we had to set up in the laundry room - because guests are not allowed in the bedrooms. But, they were very accomodating. They let us close the blinds, put up a blanket on the window of the door and put a "do not enter" sign on the door (for 1 hour). I loved it. Thank you so much!!!!!!!!!!!!
I also want to thank people for donations that they have handed me personally. There are so many to thank that I hope I don't leave anybody out. My friday night bowling league donated the 50-50 to me, the VFW dart league donated money to me and the VFW Post, the Newark Eagles, personal donations from numerous people (that have just handed me donations),Pizza Hut, Duke & Dutchess of Hebron - friends and relatives. Thank you so much. We have been here 8 weeks and a day. I try to only eat 2 meals a day. People/charities donate and make meals at the Ronald McDonald house for the residents and their guests. Now that I'm working part-time, it costs for gas to get back and forth. So, these donations are coming in handy. Thank you all so much.
Keep praying and keep Jason in your thoughts. He has come such a long way - so fast. He is amazing everyone. I am so very proud of him.
Tuesday, March 4, 2003: Jason was in a rotten mood yesterday. When I left to go to work he wouldn't brush his teeth or do anything for himself and didn't want anyone else to do it either. He was being difficult. He was in a bad mood all day. He didn't want to brush his teeth before he went to bed either. But, James had to come in and count to 5 and then he brushed. I guess he is entitled to a bad day (like us) every once in a while. He did his therapies groaning and moaning. They did not take out his trach. The ENT people checked him out - his vocal cords are fine - but, they want a cat scan of the right side of his face (ear) to see if there is possibly a bone fracture obstructing a nerve to his ear, eye, mouth - as he is numb on the right side and in case they have to do surgery, they will leave the trach in for a couple more days. I hope he has a better day today. I need to get to work. More later.
MESSAGE FROM JASON:i am still here at the hospital i am not having much fun exept for the fart machine i am i want to thank every one for sending messages to my site and for keeping me in there prayers umm i dont no anythings else to so i am going to leave now byebye.
Thursday, March 6, 2003: Jason is doing awesome, as usual. He is back to himself. Doing his therapies well. His grandma bought him a fart machine. He just giggles so much. I love to hear him (giggle-that is). They haven't given me the results of the last cat scan yet. Hopefully I will find out today and let everyone know.
Saturday, March 8, 2003: Well, guess what? He still has the trach in. The results of the cat scan are as follows: the ENT doctors read it here, then sent it to a specialist at OSU Hospital. The hearing in the right ear is not repairable. The most they can recommend is a hearing aid. Yesterday evening they did an EMG - to test the nerves and muscles. The 5th nerve is shot (that's the one that controls the feeling) and from what I understand the 7th nerve controls the movement and the EMG showed it was severed - but, they might be able to sew it back together for him to at least have movement on the right side of his face (smiling,etc). So, I have not heard back from ENT to find out for sure if they will do surgery. He did more talking yesterday. But, is not getting the swallowing down. They were going to do a swallow test on Friday, but cancelled it. He says it hurts to swallow. More later.
Wednesday, March 12, 2003: Sorry I haven't updated in a few days. It's kind of hard when I'm working. Jason had a great weekend. Not so many visitors. More one on one contact. He did a lot of talking. Yesterday they lowered the dosage of Amantadine (sp?) - this is the wake up medicine. They were giving it twice a day and now giving it once a day. He must be going through another stage - agitation again. Now, he's being stubborn and doesn't want to get out of a chair to go back to his room or do his therapies. They are tentatively going to do surgery on Friday at 12:30 (they will go in behind his right ear to try to fix the 7th nerve). It should take 3 hours - plus plastics will take off the surgical brace on his front bottom teeth.
Thursday, March 13, 2003: JJ is definately having surgery tomorrow (Friday) at 12:00 on his 7th nerve. It will take approximately 3 hours. They will go in behind his right ear to get to the nerve. They are not going to know exactly what shape it is in until they get in there. He has been doing pretty well in his therapy classes today. They started a program called "gotcha". He will be asked one time only to do something in therapy and if he does it without complaining - he will get a "gotcha buck". This also counts in nursing stuff - like his eye care, g-tube cleaning and trach care. This can buy TV time, video game time, something out of the grab bag or computer time. He earned 21 bucks between last night and today. If they have to ask him more than once, he gets nothing. It costs 10 bucks for each item. He was being kind of stubborn and hard to get along with, so they came up w/this program. So far, so good.
Friday, March 14, 2003: JJ's surgery went well. He came through it like a champ! It only lasted about 1 1/2 hours. If I understand this correctly: The doctors went in behind his ear through the boney canal - found the nerve - and discovered it was not severed. They removed the boney canal to free up the nerve so it could swell and do it's job. Apparently, it was pinched. It might take a few months for it to work. This will possibly give him movement on the right side of his face. He is sleeping on and off. He is in a little pain. They are giving him Tylenol #3. He should be ok by tomorrow.
MESSAGE FROM GAIL: I want to thank everyone for their continued prayers and thoughts. I want to thank personnel from MEDBEN (and thanks Ingrid for your hard work on selling those bunnies) for their donations and Patty Wilson's dance class at the Newark Eagles - thanks so much for your donations. This will really help me get through the next couple of weeks with food, gas and paying Ronald McDonald house for my stay.
Sunday, March 16, 2003: Jason had a pretty good weekend. He was kind of sluggish on Saturday. He wouldn't go outside. He perked up more today. We took him outside in the beautiful weather. He shot baskets with Jeremy. He made four in a row. It's hard to do with someone holding onto your gait belt. But, he accomplished the task.
Monday, March 17, 2003: Happy St. Patrick's Day! Jason got his trach out! Hooray!!!!!!!!!!! Plus we got rid of his net bed. Now he's not caged like an animal. He's earning lot's of "gotcha" bucks. I believe they will decide tomorrow if our departure date is March 27th or later. Normally, the school is to meet with Jason and myself the week he is to depart. But, next week is spring break. So, now we have a date of April 3rd to meet. He was stubborn today and did not want to swallow even after his trach came out. I think it is because he felt he was being forced to swallow and was showing them that he had control. I could be wrong. Starting tomorrow, he will be eating pudding again - he must swallow 5 times each meal. So, we will see what happens.
Thursday, March 20, 2003: Sorry I haven't updated for a few days. Jason had an MRI on Tuesday night. They just wanted more detail on his brain. He has been doing great in his therapies. They did a swallow test yesterday and discovered there is a problem with his swallowing. It's not just because he is lazy or doesn't want to. He can't. So, they are going to try a couple different things (if he'll let Michelle - speach therapist - near him). I will get to see what they are talking about tomorrow - since I'm not working on Fridays. We are still being discharged on Thursday, March 27th. I am learning and doing a lot of his care right now. He will be on tube feeds going home (since he is having trouble swallowing). More later.
Saturday, March 22, 2003: I am at home, today, cleaning Jason's room and the house for his homecoming. Have you ever seen a Christmas tree standing and all decorated in the month of March? Well, I have one in my living room! I get to take Jason out of the hospital tomorrow for a day pass. I asked him where he wanted to go or what he wanted to do and he said he wants to come home. So, I will be bringing him home for a few hours on Sunday. Some people get an overnight pass, but, my insurance won't cover that. They stated if he is able to come home for one night, he is able to stay home. Jason will be coming home on Thursday, March 27th, in a limosine. He is coming home in style.
Sunday, March 23, 2003: JJ had a great visit at home. I sat him on the couch with a pillow in his lap before I let Max (his yellow lab) at him. Max went crazy. He jumped on him and licked him all over his face and kept rubbing up against him. I had to calm him down. They had a blast! It was a very nice visit. Neither one of us wanted to go back to the hospital. He fell asleep on the way back. This week will be hectic. I am learning to care for him - giving him his medications and tube feedings. I'm hopeing that when he comes home, he will be relaxed enough, without people harping at him, and start swallowing and eating. We shall see.
Tuesday, March 25, 2003: Jason had surgery today. They sewed his right eye shut (half way). He can supposedly still see out of the corner. The drops and ointment did not seem to be working and they were a pain to him, nurses and myself. We had to fight with him too often. The liquidgel had to be put in every two hours, one of the eye drops had to be put in 4 times/day and the ointment twice a day. From the accident, his eye was scratched and it must be kept moist for it to heal. So, the only alternatives were to sew it completely shut or half way. They are trying half way first. It will be a minimum of 6 months. They'll keep an eye on it. Tomorrow, if he is feeling okay, he will be going to the mall between 10:30 until 2:00. Thursday we are out of here. I have a meeting with all the staff @ 1:30.
I just want to clarify something. I will not be paying for the limosine. This is complimentary to anyone who has been in Children's Hospital for 30 days or more.
Thursday, March 27, 2003: Hooray!!!!!!!!!!!!!!We are home!!!!!!!!!!We got home around 5:00. The limosine ride was great! My mom tried to tip the driver and he wouldn't accept it. The house was all decorated on the outside and inside with balloons and signs and streamers in the trees and even the road in front of our house was written on with welcome JJ, etc. He loved it. His face and eye brightened up. He was happy. Thanks to everyone who had a hand in the decorations. I was hopeing someone would do that for him and have a very nice welcome home. It will still be a long road, but, hopefully happier since we are home. I will meet with the school next Thursday to find out when he will start, etc. So, he will have a spring break starting today. In rehab, today, they had a graduation party for him. It was very nice. I want to thank all the Nurses and PCA's in rehab. They were wonderful. I would also like to thank the therapists and doctors. Children's Hospital is great! I am so glad he was there for his recovery. They almost took him to Riverside or Grant. I took him up to the 4th floor in the PICU (where he was in ICU for 3 weeks) and introduced him to one of the best nurse's (Deb). He thanked her for helping to save his life. They hugged. It was a great moment. I will continue some of the therapy at home until I can get him to Licking Memorial Hosp for his regular therapy which is to start next Friday. More later.
Sunday, March 30, 2003: It is so great to be home!!!!!!!!!!! It's also kind of scary. Because I am the sole person to be responsible for JJ's care (and in my absence-my Mom). Jason has been enjoying time with his friends - more one on one. He seems to be a lot happier. I'm not making him do his grueling therapy every day. He needs a little break. I'm having him do some simple exercises. So, he doesn't get stiff. I will be starting back to work full time starting Monday. My mom will care for Jason. God bless my Mom! THANKS, MOM. I will be soliciting more help from family - as it is not fair for my mom to do it all. She has a life. I will continue to update this website - maybe not every day. We shall see. A BIG THANKS TO MY NIECE MARCY FOR SETTING UP THIS WEBSITE! More later.
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