Our afternoon visit with Ben was cut short by a meeting with the psychiatrist working on Ben's case. She invited him to attend so he could spend time with us on the condition that he would sit in a certain chair (one that reminded him of school). Even his desire to be with us couldn't overcome the fear he had of sitting in that chair and 50 minutes went by without him. We could hear him crying in the other room but the psychiatrist was very firm with him....in effort to help him face and overcome his fears.
We were left with a short 10 minute visit with our very unhappy son.
On the bright side, a friend of ours flew Alyson to Honolulu so she could be with us during the week long fall break. We are excited to be reunited with her!!
Friday, September 28, 2007
Wednesday, September 26, 2007
Another Update
Well guess what? My brain suddenly cleared from the fog....and...I had an epiphany!! There is a medical library on campus, that guess what....has internet access!!! You guessed it. It sure took me long enough, but there should be no excuses now!! I am one smart cookie...when my brain isn't tired and full.
Benjamin has had several good days in a row now. His personality is starting to return and he is joking/teasing his mom and dad, and the staff. It is wonderful that the staff is beginning to see the fun and gentle pre-teen that he truly is. He is eating, drinking, showering, talking, opening doors...all those things we take for granted were a struggle for him. Now he is able to do them normally. He is still having difficulties with school associations, both verbally and physically. He cringes at the mention of school, pencil, classroom, etc. and his hand is "paralyzed" and literally useless for the rest of the day if it even so much as touches a pencil. Sitting on certain chairs is hard, as well as entering specific rooms such as the sensory room on the ward. He still has quite a severe and active head bob/tic and we are hoping that those will decrease as his exposure to things increases.
He looks good and says he feels great! He has mentioned to me that the prayers of God's people are working. We encourage you to continue praying up until his release and until his transfer home has been completed successfully.
Saturday we had a tiny scare in that the nurses overdosed him on the anti-psychotic drug, Risperdal. The drug is supposed to relieve the bad/illogical thoughts in his brain. With the accidental overdose, came a temporary condition called "Dystonia" where his muscles in this left arm and neck contracted and moved involuntarily. It was off set by an administration of Benadryl and so far, has had no lasting effects.
We are looking forward to next week as Alyson has fall break (one week off), and she will come to Honolulu to stay with us. Ben has promised to work hard and in turn, we are hoping that the doctor's will grant him a few hours outside the ward to head to the zoo or waterpark for some family fun .
Our goal is to have Ben healthy enough to be released by his birthday, which is Oct. 25. Of course, we are hoping for sooner but to ease any further disappointments, we are thinking worse case scenario.
Again, I cannot say enough how much your prayers mean to us!! I cannot imagine going through this alone, and with no hope or Jesus in our hearts. How do non-believers do it?
Benjamin has had several good days in a row now. His personality is starting to return and he is joking/teasing his mom and dad, and the staff. It is wonderful that the staff is beginning to see the fun and gentle pre-teen that he truly is. He is eating, drinking, showering, talking, opening doors...all those things we take for granted were a struggle for him. Now he is able to do them normally. He is still having difficulties with school associations, both verbally and physically. He cringes at the mention of school, pencil, classroom, etc. and his hand is "paralyzed" and literally useless for the rest of the day if it even so much as touches a pencil. Sitting on certain chairs is hard, as well as entering specific rooms such as the sensory room on the ward. He still has quite a severe and active head bob/tic and we are hoping that those will decrease as his exposure to things increases.
He looks good and says he feels great! He has mentioned to me that the prayers of God's people are working. We encourage you to continue praying up until his release and until his transfer home has been completed successfully.
Saturday we had a tiny scare in that the nurses overdosed him on the anti-psychotic drug, Risperdal. The drug is supposed to relieve the bad/illogical thoughts in his brain. With the accidental overdose, came a temporary condition called "Dystonia" where his muscles in this left arm and neck contracted and moved involuntarily. It was off set by an administration of Benadryl and so far, has had no lasting effects.
We are looking forward to next week as Alyson has fall break (one week off), and she will come to Honolulu to stay with us. Ben has promised to work hard and in turn, we are hoping that the doctor's will grant him a few hours outside the ward to head to the zoo or waterpark for some family fun .
Our goal is to have Ben healthy enough to be released by his birthday, which is Oct. 25. Of course, we are hoping for sooner but to ease any further disappointments, we are thinking worse case scenario.
Again, I cannot say enough how much your prayers mean to us!! I cannot imagine going through this alone, and with no hope or Jesus in our hearts. How do non-believers do it?
Friday, September 21, 2007
Another Good Day
Short and sweet today...Ben was able to go to class (on the psych ward) and complete his assignments in class, slept well, ate and drank to the staff's satisfaction, made his own lunch with the other children...pizza ... AND... offered to make another for the staff!! That's huge!!
I think the meds are kicking in!!!
Thank you...Jesus!!
I think the meds are kicking in!!!
Thank you...Jesus!!
Thursday, September 20, 2007
A Good Day...it's a Relative Thing
A good day for others might be a job promotion, raise, visit from an old friend, or just...no problems to deal with, at work or home.
Yesterday, Ben had a good day. For him that means he was able to put on sweats, brush his teeth, open a door and sat on a chair for 5 minutes!!! Oh yeah baby, FIVE!! Good?...well GREAT I'd say...let me tell you...this kid forged mountains yesterday!
What seems oddly enough like an everyday-don't-even-think-about task has literally become an obstacle for Ben. He was unable to sleep the other night because his couldn't lie down on his bed. Someone else had touched it. He stood all night and went without sleep. He was very pale and exhausted yesterday when we visited him. It was all I could do to prevent myself from scooping him up and taking him home.
The other night after a second dose of the anti-psycotic medication...Ben looked at us in fear, tears rolling down his pale cheek...and burst out "something's wrong, something's really wrong in my head." I have to say, I kind of got worried about a drug interaction but the symptoms decreased and he was much calmer (though anxious and exhausted) yesterday.
I flew home this a.m. for a brief 30 hours or so to welcome Grandma and arrange the home for her to take care of Aly. I am flying back to Honolulu Friday evening to relieve Ed so he can return to Kauai and preach on Sunday.
Baby steps and small mercies.
Yesterday, Ben had a good day. For him that means he was able to put on sweats, brush his teeth, open a door and sat on a chair for 5 minutes!!! Oh yeah baby, FIVE!! Good?...well GREAT I'd say...let me tell you...this kid forged mountains yesterday!
What seems oddly enough like an everyday-don't-even-think-about task has literally become an obstacle for Ben. He was unable to sleep the other night because his couldn't lie down on his bed. Someone else had touched it. He stood all night and went without sleep. He was very pale and exhausted yesterday when we visited him. It was all I could do to prevent myself from scooping him up and taking him home.
The other night after a second dose of the anti-psycotic medication...Ben looked at us in fear, tears rolling down his pale cheek...and burst out "something's wrong, something's really wrong in my head." I have to say, I kind of got worried about a drug interaction but the symptoms decreased and he was much calmer (though anxious and exhausted) yesterday.
I flew home this a.m. for a brief 30 hours or so to welcome Grandma and arrange the home for her to take care of Aly. I am flying back to Honolulu Friday evening to relieve Ed so he can return to Kauai and preach on Sunday.
Baby steps and small mercies.
Monday, September 17, 2007
Ben Update
I apologize for the lapse in blogging, but it has been near impossible to connect to the internet for almost a week. Praise God we were able to resolve that today!
Sept. 11, after a traumatic flurry of events (including an MRI and Pediatric Neuro Consult--all normal, no organic explanation for the symptoms) Ben was admitted to the Child Psychiatric ward in Queen's Medical Center, Honolulu. It's aptly named the Family Treatment Center. He was admitted under the diagnosis of psychosis, acute anxiety and OCD. It is a locked unit with many rules and regulations but the staff seem knowledgable. It was hard at first to be denied access to our child and we were allowed to bend the rules initially but have now been restricted to visiting during the hours of 1-2 pm and 7-8 pm which is double the normal visiting hours.
After a week of not eating and drinking, we cheered as baby steps were taken with Ben's first sip of water. He was SO dehydrated and so dry. The physician's orders were to initiate an IV Bolus 3x/day and NG tube if liquids were not immediately ingested. At this time, the liquids remain an easier sell than food. His intake of the latter is still very minimal.
Today was a great day in the sense that Ben was able to have Prozac administered alongside an anti-psychotic drug named Rispiradol (?sp) that will help alleviate the delusional thoughts swirling around his brain. We were able to get him to eat honey ham today as well as 1 grape and 450ml of a nutritional fruit drink. He met his liquid quota for the day and we were extremely proud of him.
Our best case scenario for release would include a miracle...that would be release from the hospital in a weeks time. Ben is still considered acute and realistically will be in another 2 weeks. If things progress more slowly, he will be deemed a sub-acute case, and it may be another month or two before he is released. Of course, we are praying for the miracle.
A huge hug and thanks for those who have been faithfully praying for our family and supporting us in more practical ways. We cherish each and every one of you. To our family in Winnipeg and in the rest of Canada, we love you. Rest assured that we have friends that are family here that are constantly checking in on us. Three couples here alone in Honolulu have been tremendous in their support for us.
Please continue to pray to the Healer, and Calmer of Ben's fears. Pray for sleep for Ben as his nights have been hard. Pray for strength and clarity of mind for his exhausted parents.
We love you all.
Sept. 11, after a traumatic flurry of events (including an MRI and Pediatric Neuro Consult--all normal, no organic explanation for the symptoms) Ben was admitted to the Child Psychiatric ward in Queen's Medical Center, Honolulu. It's aptly named the Family Treatment Center. He was admitted under the diagnosis of psychosis, acute anxiety and OCD. It is a locked unit with many rules and regulations but the staff seem knowledgable. It was hard at first to be denied access to our child and we were allowed to bend the rules initially but have now been restricted to visiting during the hours of 1-2 pm and 7-8 pm which is double the normal visiting hours.
After a week of not eating and drinking, we cheered as baby steps were taken with Ben's first sip of water. He was SO dehydrated and so dry. The physician's orders were to initiate an IV Bolus 3x/day and NG tube if liquids were not immediately ingested. At this time, the liquids remain an easier sell than food. His intake of the latter is still very minimal.
Today was a great day in the sense that Ben was able to have Prozac administered alongside an anti-psychotic drug named Rispiradol (?sp) that will help alleviate the delusional thoughts swirling around his brain. We were able to get him to eat honey ham today as well as 1 grape and 450ml of a nutritional fruit drink. He met his liquid quota for the day and we were extremely proud of him.
Our best case scenario for release would include a miracle...that would be release from the hospital in a weeks time. Ben is still considered acute and realistically will be in another 2 weeks. If things progress more slowly, he will be deemed a sub-acute case, and it may be another month or two before he is released. Of course, we are praying for the miracle.
A huge hug and thanks for those who have been faithfully praying for our family and supporting us in more practical ways. We cherish each and every one of you. To our family in Winnipeg and in the rest of Canada, we love you. Rest assured that we have friends that are family here that are constantly checking in on us. Three couples here alone in Honolulu have been tremendous in their support for us.
Please continue to pray to the Healer, and Calmer of Ben's fears. Pray for sleep for Ben as his nights have been hard. Pray for strength and clarity of mind for his exhausted parents.
We love you all.
Sunday, September 09, 2007
Hug
2:30 in the morning and I am woken from my slumber by cries of "Help me, Help me...I need someone". Fearing that Ben had awoken from his sleep and was now plagued with thoughts swirling around in his mind, I bolted from the bed and bent down over his towel wrapped body on the living room carpet. I said "Mommy's here Ben, how can I help you?" His bleary voice replied, "I just needed a hug. I had a bad dream." My heart touched by a simple need, a smile drawn to my lips, and I was more than willing to respond to his feeble request. I whispered "You can call me anytime for one of those. Do you need anything else?" He sleepily responded, "I'm okay now thanks."
Anytime Ben.
Anytime Ben.
Saturday, September 08, 2007
When it Rains....
Wouldn't you know...it just doesn't stop!
Right on the heels of our "relaxing" weekend, Ben and Ed were both diagnosed with swimmer's ear. With Ben's adamant refusal to see the pediatrician, there came a flurry of 6 arms, 6 legs and additional body parts. Mom and Dad in a physical struggle to put shorts on Ben and literally throw the 12 year old over dad's shoulder and off away into the van. The brain is continuing to play its sordid tricks on Ben and as they drove away, I watched Ben repeatedly try to open the van door so he could leap out. My heart raced, then sank....I hoped the child locks were on.
Diagnosis confirmed and at 4 drops/3x a day, Ben's small life box is getting even smaller. His mind has tricked him into believing that he cannot eat or drink after the administration of any kind of medication...whether it's eye cream, ear drops, or oral suspension. The ear has to be healed by sedation for the MRI on Tuesday and so the struggle begins. The ear drops go in....and all logic goes out. Ben no longer eats lunch or supper and hasn't for the last 2-3 days. All food and drink after 9 a.m. is taboo. He eats 2 bowls of cereal before 9 in the morning. That is his last meal/liquid of the day for the next 24 hours. This is obviously a huge concern for us. If this continues, we will have no choice but to hospitalize him.
3 more sleeps until the MRI on Oahu. We are praying to be able to get on the plane without too much difficulty as Ben has been increasingly agitated and aggressive. With post-911 regulations and nervous airline employees, who knows what can happen.
Please continue to keep Ben and all of us in your prayers.
Right on the heels of our "relaxing" weekend, Ben and Ed were both diagnosed with swimmer's ear. With Ben's adamant refusal to see the pediatrician, there came a flurry of 6 arms, 6 legs and additional body parts. Mom and Dad in a physical struggle to put shorts on Ben and literally throw the 12 year old over dad's shoulder and off away into the van. The brain is continuing to play its sordid tricks on Ben and as they drove away, I watched Ben repeatedly try to open the van door so he could leap out. My heart raced, then sank....I hoped the child locks were on.
Diagnosis confirmed and at 4 drops/3x a day, Ben's small life box is getting even smaller. His mind has tricked him into believing that he cannot eat or drink after the administration of any kind of medication...whether it's eye cream, ear drops, or oral suspension. The ear has to be healed by sedation for the MRI on Tuesday and so the struggle begins. The ear drops go in....and all logic goes out. Ben no longer eats lunch or supper and hasn't for the last 2-3 days. All food and drink after 9 a.m. is taboo. He eats 2 bowls of cereal before 9 in the morning. That is his last meal/liquid of the day for the next 24 hours. This is obviously a huge concern for us. If this continues, we will have no choice but to hospitalize him.
3 more sleeps until the MRI on Oahu. We are praying to be able to get on the plane without too much difficulty as Ben has been increasingly agitated and aggressive. With post-911 regulations and nervous airline employees, who knows what can happen.
Please continue to keep Ben and all of us in your prayers.
Monday, September 03, 2007
Waipouli ReVisited? Not any time soon.....
A long awaited weekend of fun and relaxation at the newest Waipouli condo resort in Kapa'a, took an interesting turn. (The resort is gorgeous by the way. We got the cheapest room and I thought they'd made a mistake and given us the wrong room).
Let's just start out by saying...I don't think the meds have kicked in yet...
We thought that getting Ben away from everything would help relieve his symptoms. Unfortunately the opposite was true. The resort was a minefield...of triggers....just like our lives everyday have become. Imprisoned to a certain spot in our living room, Ben is a prisoner of his mind in our own home.
The exits signs around the resort property, the kids in the pool, too many people...too many people...panic attacks....bathing 8-10 times/day, the exhaustion of not being able to sit down anywhere, anytime...the barrage of new lighting, sounds, odors, and illogical thoughts whirling around his teenage brain...another panic attack...the inability to use a different toilet in a new room....can't sleep on the bed, can't sleep on the floor....can't wear my favourite sweats because they touched that chair and are now contaminated....can't open the door, any door....can't bathe by myself, can't get my own towel...and please, wrap it around me...i can't do it...it won't let me
Imagine living life this way. It's become every day life for Ben and for us.
And so the weekend adventure became a living hell for Ben and Ed. Ben would not accept help from me...only his dad and so a potentially relaxing time became very stressful for Ed. Ed and Ben returned home every evening to sleep and would return every morning in an effort for Ed to get some relaxation. It didn't really work out for them.
After much conversation and wondering if the weekend was even worth it, we felt that regardless of us, our Alyson needed a fun break and she and I spent alone time together while Ed worked with Ben.
How we longed for a respite worker!
The blood test results all came back normal and I cried. I know it's great news, but I was hoping for something legitimate to show and to back up our concerns.
ps. my apologies about the lack of photos. my digital camera died a quick but uneventful death. it is surprising how long it lasted after the near death drowning in Lake Winnipeg (Canada) several summers ago. R.I.P. my little canon.
Let's just start out by saying...I don't think the meds have kicked in yet...
We thought that getting Ben away from everything would help relieve his symptoms. Unfortunately the opposite was true. The resort was a minefield...of triggers....just like our lives everyday have become. Imprisoned to a certain spot in our living room, Ben is a prisoner of his mind in our own home.
The exits signs around the resort property, the kids in the pool, too many people...too many people...panic attacks....bathing 8-10 times/day, the exhaustion of not being able to sit down anywhere, anytime...the barrage of new lighting, sounds, odors, and illogical thoughts whirling around his teenage brain...another panic attack...the inability to use a different toilet in a new room....can't sleep on the bed, can't sleep on the floor....can't wear my favourite sweats because they touched that chair and are now contaminated....can't open the door, any door....can't bathe by myself, can't get my own towel...and please, wrap it around me...i can't do it...it won't let me
Imagine living life this way. It's become every day life for Ben and for us.
And so the weekend adventure became a living hell for Ben and Ed. Ben would not accept help from me...only his dad and so a potentially relaxing time became very stressful for Ed. Ed and Ben returned home every evening to sleep and would return every morning in an effort for Ed to get some relaxation. It didn't really work out for them.
After much conversation and wondering if the weekend was even worth it, we felt that regardless of us, our Alyson needed a fun break and she and I spent alone time together while Ed worked with Ben.
How we longed for a respite worker!
The blood test results all came back normal and I cried. I know it's great news, but I was hoping for something legitimate to show and to back up our concerns.
ps. my apologies about the lack of photos. my digital camera died a quick but uneventful death. it is surprising how long it lasted after the near death drowning in Lake Winnipeg (Canada) several summers ago. R.I.P. my little canon.
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