Sorry it has been so long since the last update. Chad has been doing really well. He is very responsive when talked to. He really seems to enjoy his nice long showers. Weather permitting (which isn't often) he gets out in his wheelchair and enjoys the fresh air. Last Sunday, his feeding tube came out and had to be replaced. It was just replaced on 2/23, and is supposed to last for about 6 months! No plans for Easter, just hanging out with the family. Hope everyone has a great Easter and please stop by any time.
The
Global Ischemia Foundation has a fundraiser scheduled on
April 18, 2006
Chevys Night
Chevy's in Westgate will offer during the evening to the Global Ischemia Foundation. Anyone bringing flyers to the event will help out the Foundation as Chevy's will donate 15% of the proceeds. Download a
FLYER and come join us between 5:30 and 9pm at 1502 Saratoga Avenue San Jose, CA 95129.
Phone: (408) 871-9110
Not much new with Chad. He has good days, and not so good days. He doesn't seem to laugh as much these days. Hopefully this is only temporary, because the smiles and laughter mean so much and helps me through! Sunday, the
Global Ischemia Foundation, whose goal is aimed at finding a cure for people with brain injuries had a "massage-a thon" fundraiser event this past weekend. I indulged myself in a massage and it was heavenly! If you want to pamper yourself, check it out for yourself:
Therapeutic Art. Maryann generously donated all of her time and she is amazing! Chad would love and benefit from this too! I have to see if I can convince her to come to the house and work with Chad!!
During the night Chads feeding tube came partially out. I called after hours care immediately and was advised to call home health office when it opened in the morning at 8:30. It had always been my understanding the a GI tube needed to be reinserted fairly quickly or the opening could be compromised and may require a surgical procedure to replace. The advise nurse said that even if I were to take him to the ER in the middle of the night, they wouldn't have a surgeon until morning anyway! The morning required numerous phone calls to get anywhere. I was first given voice mail to leave a message. I contacted the nurse that used to be Chads home health nurse (until he was discharged from home health). She was on vacation but helped anyway. She called me back saying that Chad could not go to the Gastroenterology (GI) clinic because the insurance would not cover it. He went there last March for tube replacement! She made more calls and said that the head of the GI department said Chad had to go to ER because his tube was partially out! Ambulance transport was arranged. After being in the ER for awhile, the Dr. came in, looked at the tube, said he was going to call the GI clinic to see what they want him to do. AFter some time, a nurse came in and said that the GI clinic wanted Chad brought to the clinic!! After some discussion, a nurse endoscopist came to the ER from the clinic and replaced the tube. X-Ray's were taked to check placement. The nurse said that the stomach acid breaks down the balloon that holds the tube in place in 6 months to a year. I inquired about replacement prior to rupture as preventative, but he said that is not done and replace when tube is no longer viable. The tube is Chad's only means of hydration, feeding and medicating...his life line.
Chad did really well throughout the entire ordeal. He stayed relaxed, some smiles and a few laughs. As always, the paramedics from AMR were super. They always treat Chad with kindness and dignity.
January 16-22, 2006
Chad had a great week. He had his personal best this week, standing for 35 minutes in the standing frame. Tues he seemed to be coming down with a cold, but quickly recovered.
January 5-15, 2006
Chad continues to do well. His moods fluctuate from happy and vocal to tense and breathing hard. We all enjoy when he is responsive, laughing, smiling and voaclizing. When he becomes very tense and breathing hard, you feel so helpless. It seems to happen most often in the middle of the night. I don't know the cause and all I can do is try to stretch him, move him and talk to him to calm him down.
Sorry there had not been any entries for awhile. I couldn't get past this one!
Today marks two years since that fateful morning when I received the phone call that would change our lives forever. The past two years have been one HUGE rollercoaster of emotions: devastation, fear, anxiety, sadness, lonliness, doubt, deceit..... The first 11 months were spent in various hospitals, almost losing Chad again on July 21, 2004 when he became septic and went into shock. He has been lovingly cared for at home since Dec 3, 2004 surronded by family and friends. Over the past year at home he has remained relatively healthy. Chad has times when his temperature fluxuates; or he becomes very tense, sweaty and breathing hard; or his head and eyes roll extreme left or right for a brief period. We have no idea what these mean and no guidance. Family and friends do their very best to maintain Chads health, body, range of motion until the day that embryonic stem cell treatment becomes a reality.
The second day of the New Year. This year has come in like a lion with heavy rain and wind. Chad had another quiet day, watching as the Christmas Decorations were taken down. I think we will leave the lights up in his room. It gives a little festive mood to the room. Thank you to Chads Friend Desiree for tracking down and returning Chads Christmas Ornaments. Every year I would get each of the kids a special ornament with the year and or their name. When Chad moved out, I gave him his ornaments. His roommates had packed up his belongings when he got sick and those were not included. One of the ornaments was from the Waterford Crystal factory from a trip to Ireland. Although we didn't recover all of them, I am very grateful to Desiree for what she was able to return.
Happy New Year everyone! Chad spent a quiet New Years Eve at home with mom watching the festivities on TV. He stayed up until midnight! Chad has been home a little over a year now and even though this past year went well, we are all hoping and praying that this year will be even better for Chad and our friends that are in a similar situation such as Katheeen Davey. We are all working towards that elusive goal of unleashing the healing powers of the brain. Mike Davey has founded the
Global Ischemia Foundation to work on finding a cure for this type of devastating injury. Our hearts go out to Mike and Kathleen and there two adorable daughters.
This week has been fairly routine. Chad and his family bid a fond fairwell to Eric, one of his therapists. Eric has been working with Michelle, the lead therapist for about 6 months, doing his internship. He passed his exams and is moving on. He will be greatly missed. He was awesome with Chad. He will be a fantastic therapist
Merry Christmas! Chad had lots of visitors today, both family and friends. Some of the friends he hasn't seen in quite awhile and it's always nice
when they stop by!
The last several days have been fairly routine. He still has his tense, sweaty times, but other than that, he has been doing well. Family on the paternal side has started arriving from out of town and have been dropping in to visit. Chad loves to have company, but he tends to get very quiet when there is too much going on all at once.
Chad gets a surprise visit from Santa! Chad was a bit sleepy!
Chad started off the day with a shower, some stretching and then therapy. He set his new best record. He stood for 35 minutes, good head control, actively turning head and moving eyes back and forth (to quote his therapist!!) This was his best standing therapy to date!! His was in a great mood the remainder of the day.
Chad's maternal Grandparents have been on a cruise for the past two weeks and got back this morning. They came by for a visit in the evening and Chad gave Grandma a big smile. Brought tears to grandma's eyes. Grandma helps take loving care of Chad two afternons every week, so I'm glad she took some time to enjoy life.
Today was fairly routine. He slept in the morning and finally woke up early afternoon. There was a little break in the weather so he was able to get out back for a bit. He was in a great mood today.
Since the weather was so bad, Chad didn't get to go out back today. Instead we brought him out in the livingroom for awhile. He was treated to some neck adjustments today while sitting in the recliner.
Chad had therapy today and stood for almost 25 minutes. He did very well until His B/P started to drop towards the end. The rest of his day was pretty routine
Today was fairly routine. Chad had sweat alot during the night and was treated to a nice shower this morning. Since he was awake most of the night, he slept most of the day. He still has it backwards!!
Chad was pretty sleep most of the day. In the evening he was awake and in a good mood. He sat in the livingroom recliner for a couple hours in the evening. He would laugh occasionally when talked to. After he was back in bed, his tone increased and he was breathing hard and sweating.
Chads day started with a nice shower. He had therapy in the afternoon where he stood for about 20 minutes. He slept most of the day again. No matter how much you try, when he gets into that deep sleep, you cannot wake him! His sister jumped on the bed with him and was pinching him, making fish lips with him, anything. All he did was turn his head away from her!
Chad finally seemed to get a bit more sleep last night. He had therapy today and stood for 20 minutes, b/p stable and fair head control. He sat in the living room in the evening with his family. He was awake but very quiet. No matter how hard we tried to make him laugh, he wouldn't. About the time we put him back to bed, he started laughing!
Up again last night. Slept most of the day until around 4pm. He woke up in a good mood. He stayed awake and responsive to stimulation all evening.
Chad was awake all night again. After his morning shower, he wanted to sleep. No matter how much we tried to wake him, he was out of it in a very deep sleep. In the evening we sat him in the living room recliner, where he fell back to sleep! He seems to have his days and nights turned around.
Chad was up all night. This morning he was very vocal. He went out back in his wheelchair for a bit this afternoon. The neighbors are getting a new roof, so it was quite noisy, but he seemed to like the cool air. He was happy the rest of the day, smiling and laughing.
Chads day started off with a nice warm shower with help from his brother and sister...THANK YOU! Giving Chad a shower takes almost two hours from start to finish. We have been asking for a blood sugar test for Chad, but it has not been done. Chads Grandpa brought over his machine and tested Chad-his blood sugar level is 93 which I understand is excellent! The last blood draw that had been done showed Chad had elevated hemoglobin and my reading on that always came back to diabetes which concerned me greatly. Thanks Dad for doing the test that required one drop of blood!
Chad fianlly had a good night sleep last night. He was in a great mood all day, smiling and laughing and some good sneezes!! He was doing great up until 10pm, when his great mood turned to tense, sweaty and breathing hard. His temp quickly shot up to 102.3 and heart rate 105.
Chad was awake what seemed like all night, laughing at the littlest noise. He stood again today for 20 minutes. His therapist said he was alert and relaxed and held his head well. After some relaxation, he was in a good mood again and laughing. He is not happy when his arm casts are on!
Chad had therapy today and stood for 20 minutes, tolerating well. The last time he stood was 11/28 and he only made it 13 minutes. Small steps! Chad has been in a great mood this afternoon with lots of laughing. The slightest noise or stimulation set him off into boughts of laughter.
Chad was very tense today, arms pulled in tight and heavy breathing. Even a nice hot shower didn't seem to relax him.
Chad came out front in his wheelchair to supervise his sister, brother and mother putting up the Christmas lights. It was a little chilly out, but he seemed to enjoy being out with us.
Today is the one year anniversary of Chad's homecoming. The year has flown by, filled with ups and downs, love and heartache, laughter and tears. Over all, Chad has done remarkably well this past year. We have been relatively successful in keeping his body healthy, despite lack of guidance or knowledge. We have muddled through to the best of our ability, but with no medical leadership, we can only do what we have learned on our own, through others in the same situation (thank you Mike and Kathleen) and by what our hearts tell us. It is always an emotional challenge. Somedays the rewards are plentiful....the days when he is feeling well, is responsive to stimulation and lots of smiles and laughter...keeps you going. The days when he is not feeling well, feverish, moaning, body wracked with muscle contractures, you feel so helpless and wonder if you are doing the right thing. We pray for a miracle, and hope that someday stem cells may hold the key to recovery for so many. Thank you to everyone who has followed Chads journey and for your thoughts and prayers!
Chad has been doing fairly well this week. Some days his tone is very high, which causes his temp to rise a bit and his mood to be very somber. He spoils us so much when he is responsive and smiling, so when he is tense, we all feel his pain.
On a much brighter note, Chads sister Ashley and the ladies of the West Valley Soccer team are off to Lassen County for the third and final round of the regional playoffs. The winner of this match will advance to the prestigious Final Four! Good luck tomorrow ladies!!!
Brandon Preece stopped by before flying back home to Utah. He made Chad a shadow box with drum sticks and a personalized note! For those of you who don't know Chad, he is an awesome drummer! Thank you for such a nice gift.
Chad stood in the standing frame for the first time in awhile. He stood for about 13 minutes and did fairly well. In the evening he was in a really goofy mood. He was very responsive with smiles and laughter and a lot of fun. We all love it when he is in such good spirits!
