It's always amazing to me how God orchestrates things, but especially when life is a little more intense.
Today (Thursday) I was at home for a short time while I prepared for some work I needed to do when Matt's very good friend, Peter called. Peter has been Matt's friend since 8th grade and is the truest of true friends. I had Peter on my mental list of people to call, but had not gotten to him before he called our house.
He was hoping to hang out with Matt like they've done for a number of years. Since Matt was in the hospital that wasn't going to work. I had the opportunity to mention Matt's situation and Peter thought he would be able to come and visit Matt. Not only did he and his dad come visit, but they were kind enough to drive me back to the hospital, visit, and then bring Laura home!
God shows up in so many "coincidences" that you really have to be blind NOT to see Him at work.
An update on Matt's status - Thursday afternoon he tried to breathe without complete support of the ventilator, but was having spells of apnea (no breathing) and was not successful. The plan is to keep him on the ventilator for another day and try again. He also is running a temperature so there is some concern about possible infection.
Tonight Matt watched some Tim Hawkins videos on You Tube - his favorite. He was fairly responsive and interactive. He's using sign language that he picked up at school. I'm impressed with his ability to try and communicate without his voice.
He's in some pain from time to time, but calms down quickly when pain medications are given.
To all who are praying, thank you. It is very much appreciated.
Thursday, June 28, 2012
Matt Man
I haven't had to post personal messages for quite some time. I've tried to keep the medical information to a minimum.
Yesterday (Wednesday) we brought Matt in for an elective surgery to help with his drooling. The surgery went well! He was in recovery for a little while longer than expected, but that was partially because he didn't wake up fast from the little anesthesia he had.
Once he got to his room, he was alert and responsive. He was in some pain, but doing OK overall. He was having a tough time coughing and needed some suctioning. It was no big deal for a while, but his O2 sats (oxygen saturation levels) were going down. As the afternoon and evening wore on, the sats got worse and he was having to be suctioned more and more. His pain level was fine and all the rest of his vital signs were fine.
Eventually his nurse called for respiratory therapy to help with suctioning and his airway. They put him on a bi-pap machine to force air into his lungs. Unfortunately his O2 sats weren't as high as they would have liked. That meant he needed to go to ICU.
The trip from his room to the ICU was mildly eventful as he started to become less responsive. By the end of the elevator ride, his nurse, the respiratory therapist and the nursing assistant who were bringing him down, were "running."
A little aside - We've all seen and "ER" type show and how they run with a critical patient. Let me say that reality is a little different. You can't run with a hospital bed, a bi-pap machine and an IV pole. You can move more quickly and work hard to get him stable and they did. They handed him off to the ICU staff who got him settled. This was the "please step out in the hall" moment of the evening.
We now return to our story - Once in his new bed, I was allowed back in and they took some blood to get his oxygen level. I could see the dark color of his blood which is supposed to be bright red and I could see the looks on the faces of the staff. The levels came back way too low and they decided to intubate him which means put a tube down his throat so they can hook up a machine to help him breathe.
There were no less than 8-10 people in his room working quickly to get that done for him. I sat in the corner and watched my own version of "ER" played out on my son. I'm thankful to God, that I understood enough of what's going on so that I wasn't being freaked out. I was definitely concerned, but OK enough to watch this happen.
The part that bothered me is what Tim had said the day before Matt's surgery. It went something like, "I hope Matt's surgery goes OK, cause I would rather have him drooling than dead." When your 9 year old has a premonition-like comment, it weighs heavily on you. You wonder if you made the right decision to help your child by putting him through this.
He became more stable throughout the evening and night. I eventually left his room to get a little sleep. He's not out of the woods yet (Thursday morning) as he spiked a temperature overnight. His breathing and O2 levels are a lot better, but he's got the temperature and some crud in his lungs.
So we are back to the wait-and-see or should I say pray-and-see stage. The thing I didn't mention above is how I waited so long before I started praying. We have access to the creator of the universe and yet so often I forget to ask for his help. After the craziness, I opened the bible on my iPod and it was at the verse in James that says "is any of you in trouble? He should pray." Yep that's us, we're in trouble and we're praying now.
Yesterday (Wednesday) we brought Matt in for an elective surgery to help with his drooling. The surgery went well! He was in recovery for a little while longer than expected, but that was partially because he didn't wake up fast from the little anesthesia he had.
Once he got to his room, he was alert and responsive. He was in some pain, but doing OK overall. He was having a tough time coughing and needed some suctioning. It was no big deal for a while, but his O2 sats (oxygen saturation levels) were going down. As the afternoon and evening wore on, the sats got worse and he was having to be suctioned more and more. His pain level was fine and all the rest of his vital signs were fine.
Eventually his nurse called for respiratory therapy to help with suctioning and his airway. They put him on a bi-pap machine to force air into his lungs. Unfortunately his O2 sats weren't as high as they would have liked. That meant he needed to go to ICU.
The trip from his room to the ICU was mildly eventful as he started to become less responsive. By the end of the elevator ride, his nurse, the respiratory therapist and the nursing assistant who were bringing him down, were "running."
A little aside - We've all seen and "ER" type show and how they run with a critical patient. Let me say that reality is a little different. You can't run with a hospital bed, a bi-pap machine and an IV pole. You can move more quickly and work hard to get him stable and they did. They handed him off to the ICU staff who got him settled. This was the "please step out in the hall" moment of the evening.
We now return to our story - Once in his new bed, I was allowed back in and they took some blood to get his oxygen level. I could see the dark color of his blood which is supposed to be bright red and I could see the looks on the faces of the staff. The levels came back way too low and they decided to intubate him which means put a tube down his throat so they can hook up a machine to help him breathe.
There were no less than 8-10 people in his room working quickly to get that done for him. I sat in the corner and watched my own version of "ER" played out on my son. I'm thankful to God, that I understood enough of what's going on so that I wasn't being freaked out. I was definitely concerned, but OK enough to watch this happen.
The part that bothered me is what Tim had said the day before Matt's surgery. It went something like, "I hope Matt's surgery goes OK, cause I would rather have him drooling than dead." When your 9 year old has a premonition-like comment, it weighs heavily on you. You wonder if you made the right decision to help your child by putting him through this.
He became more stable throughout the evening and night. I eventually left his room to get a little sleep. He's not out of the woods yet (Thursday morning) as he spiked a temperature overnight. His breathing and O2 levels are a lot better, but he's got the temperature and some crud in his lungs.
So we are back to the wait-and-see or should I say pray-and-see stage. The thing I didn't mention above is how I waited so long before I started praying. We have access to the creator of the universe and yet so often I forget to ask for his help. After the craziness, I opened the bible on my iPod and it was at the verse in James that says "is any of you in trouble? He should pray." Yep that's us, we're in trouble and we're praying now.
Sunday, May 13, 2012
Jamaica 2012
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Saturday, April 21, 2012
'Time is Now,' for Improved Services
You may have read the Fox 9 report on Friday April 20 regarding the Vikings Stadium. In it, the commissioner of the NFL, Roger Goddell, is quoted as saying "the time is now" for a Vikings stadium bill to get done.
Minnesota lawmakers were also quoted:
”The reality check is this is the year to do it,” Sen. Julie Rosen said. “We cannot wait until next year.”
"We cannot have this decision delayed another year,” said Rep. Morrie Lanning. “It's time for Minnesota to make a decision.”
It's interesting but I agree with their quotes. Yep, "the time is now," "The reality check is this is the year to it," "We cannot wait until next year." "We cannot have this decision delayed another year," "It's time for Minnesota to make a decision." What they've got wrong is the topic. It's not the Vikings stadium, it's providing adequate services to people with disabilities.
I agree that the time is now for Minnesota to make a decision about whether or not they value the citizens of this state that can not care for themselves or need assistance to navigate their daily lives. 'We can not wait until next year' as we watch single mothers struggle to make ends meet while trying desperately to care for their disabled child. 'We can not have this decision delayed another year' while individuals sit at home in their wheelchair waiting for someone to help them use the toilet because their PCA (personal care attendant) funding was cut or eliminated.
The NFL commissioner went on to warn the governor that inaction on the stadium brings "serious consequences" for both the Vikings and the NFL.
"Serious consequences?" What? like job loss or the team has to move? Yes those are hard things, but "serious consequences"? How about the serious consequences of choosing between food and medications? How about the serious consequences of getting a kidney infection that leads to kidney failure because you couldn't get to the toilet in a timely manner? How about the serious consequences of giving your child the wrong medicine that almost kills them because of severe sleep deprivation from being up for 36 hours at a time?
Come on commissioner, let's get real. Teams move. Look at the Browns, um I mean Ravens. Seems to me they were once in Cleveland. Hmm, I think that city now has a team called the Browns. Looks like even after all of the 'serious consequences' it worked out for two cities when the Browns moved.
Alright so I ranted about the stadium issue, but what about a solution for both parties? After all, I'm not in favor of folks losing their jobs even if it is related to football.
I can't believe that there isn't anyone in this state smart enough to come up with a proposal that will allow a stadium to be built AND get some additional funding for those folks who literally can NOT take care of themselves?
I keep hearing that there's no good way to structure the tax burden we will have to impose to get a stadium built. Why on earth does it have to be taxes? Look, either stadiums are money makers or they're not. Based on all of the talk, I'd say they're not. However, the owner of any sports team stands to gain a PILE of money if he/she can sell the team with a new stadium.
So instead of making the citizens of this state pay for the stadium, let the owners borrow the money from the state. I'm sure you've heard of the concept - take out a loan to build a house or make improvements on it. Then you have the owner pay back the loan WITH INTEREST. Take the interest from the loan and put it into programs for our most needy citizens.
This will make everyone happy - the owner and the team get a new home. The owner is set to make a PILE of money when he/she sells the team. The disabled get the services they need from the interest of the loan.
The commissioner is right - "The time is now." We need to take care of our most vulnerable and if the Vikings get to play their game in the process, I'm all for it.
Minnesota lawmakers were also quoted:
”The reality check is this is the year to do it,” Sen. Julie Rosen said. “We cannot wait until next year.”
"We cannot have this decision delayed another year,” said Rep. Morrie Lanning. “It's time for Minnesota to make a decision.”
It's interesting but I agree with their quotes. Yep, "the time is now," "The reality check is this is the year to it," "We cannot wait until next year." "We cannot have this decision delayed another year," "It's time for Minnesota to make a decision." What they've got wrong is the topic. It's not the Vikings stadium, it's providing adequate services to people with disabilities.
I agree that the time is now for Minnesota to make a decision about whether or not they value the citizens of this state that can not care for themselves or need assistance to navigate their daily lives. 'We can not wait until next year' as we watch single mothers struggle to make ends meet while trying desperately to care for their disabled child. 'We can not have this decision delayed another year' while individuals sit at home in their wheelchair waiting for someone to help them use the toilet because their PCA (personal care attendant) funding was cut or eliminated.
The NFL commissioner went on to warn the governor that inaction on the stadium brings "serious consequences" for both the Vikings and the NFL.
"Serious consequences?" What? like job loss or the team has to move? Yes those are hard things, but "serious consequences"? How about the serious consequences of choosing between food and medications? How about the serious consequences of getting a kidney infection that leads to kidney failure because you couldn't get to the toilet in a timely manner? How about the serious consequences of giving your child the wrong medicine that almost kills them because of severe sleep deprivation from being up for 36 hours at a time?
Come on commissioner, let's get real. Teams move. Look at the Browns, um I mean Ravens. Seems to me they were once in Cleveland. Hmm, I think that city now has a team called the Browns. Looks like even after all of the 'serious consequences' it worked out for two cities when the Browns moved.
Alright so I ranted about the stadium issue, but what about a solution for both parties? After all, I'm not in favor of folks losing their jobs even if it is related to football.
I can't believe that there isn't anyone in this state smart enough to come up with a proposal that will allow a stadium to be built AND get some additional funding for those folks who literally can NOT take care of themselves?
I keep hearing that there's no good way to structure the tax burden we will have to impose to get a stadium built. Why on earth does it have to be taxes? Look, either stadiums are money makers or they're not. Based on all of the talk, I'd say they're not. However, the owner of any sports team stands to gain a PILE of money if he/she can sell the team with a new stadium.
So instead of making the citizens of this state pay for the stadium, let the owners borrow the money from the state. I'm sure you've heard of the concept - take out a loan to build a house or make improvements on it. Then you have the owner pay back the loan WITH INTEREST. Take the interest from the loan and put it into programs for our most needy citizens.
This will make everyone happy - the owner and the team get a new home. The owner is set to make a PILE of money when he/she sells the team. The disabled get the services they need from the interest of the loan.
The commissioner is right - "The time is now." We need to take care of our most vulnerable and if the Vikings get to play their game in the process, I'm all for it.
Wednesday, February 15, 2012
Good Dad Days
As with most parenting, really, really good days are few and far between.
I've had a couple this last winter that I wanted to share with you.
The first involves the 7 year old. He loves to play goalie when it comes to hockey. At the beginning of the season, he was told that his goalie training this year would involve "skating out" as the team had already been assigned a goalie and it wasn't him. He took it in stride and became one of the "skaters."
I helped him dress for the first game of his season last fall. As I was going to fill his water bottle, one of the assistant coaches stopped me and said, "It looks like Andrew might have to play goalie." I said, "Why?" It turns out our goalie hadn't shown up yet. I told the coach that Andrew would do it, but I didn't want to tell him and then take it away from him so we should wait until the last minute in case the goalie showed up.
With 10 minutes to go before game time, guess what happened? The goalie didn't show up. I told Andrew he was going to be goalie and he pumped his fist while saying a big "Yesssssss!" We quickly changed him from a skater to a goalie with some help.
As he got on the ice, I thought about the fact that he had not practiced goalie for about 6 weeks or so. I figured if the other team scored 5 or fewer goals, that would be a good game for Andrew. By the end of the 1st period, he had a shutout! By the end of the second, his team was up 2-1! Mid way into the 3rd, our team scored again. I was getting nervous and excited because he was doing so well! All of the parents around me were impressed with his play. The other team got one more break away - their 5th - and this time they scored. Andrew had stopped the other 4 breakaways! The final was 3-2 our favor!
At this point, I must back up and mention that the goalie showed up during the 2nd period. The coach left him on the bench for the entire game.
In the locker room, Andrew was getting a LOT of high fives and "atta boys." He had played very well. I was very proud.
When we got to the car, I congratulated him one more time and told him how proud I was of his play and the fact that he was willing to play goalie even though he had not been chosen to be the regular goalie. At that point he said that he was a little sad. "Why," I said. He replied that he was sad because the regular goalie had not gotten to play at all. I said, "Andrew! I am MORE proud of the fact that you cared what happened to your teammate than the fact that you played well. I am very impressed."
Here was a 7 year old who had played phenomenally for his age and had received a lot of praise for doing so and his biggest concern was how his teammate was feeling. I would love to tell you that I taught him that, but I can't. He may have learned it from me, but more likely it is something God built into him. Wow!
The second large proud dad day was this week. Our oldest who is almost 22 has been an intern at a local company since September. This week was his second "mid-rotation" review. It's a time where his real supervisor talks with us about his job performance. The first review he had last fall in the "building and grounds" area was moderate. His supervisor had some good things to say and some areas to work on.
The supervisor from this rotation in the kitchen walked in and said that he had no complaints so we could all leave the meeting room. He was actually pretty serious. He went on to say that Josh has mastered everything that he has asked him to do! He practically guaranteed that if a company called for a reference for Josh, he would ensure Josh would get the job! This was a dramatic improvement from his first rotation.
We learned that Josh likes the area better. We learned that tasks that are in a predictable order each day are better for Josh. He still likes some variability, but if it's in a specific pattern, he works hard and gets the job done - even when some speed is required - a very hard thing most of the time.
He had even taken some initiative to complete an extra task that was not required of him! We have been working on initiative for a LONG time.
When I left the building and got in the car, I was so pumped that I cried! Yep, I couldn't believe what I had just heard. It was very rewarding to know that the time Laura and I have spent working with him had shown some dividends.
As I said at the top of this post - Good Dad Days are few and far between, but these two will be etched in my mind for a long time!
I've had a couple this last winter that I wanted to share with you.
The first involves the 7 year old. He loves to play goalie when it comes to hockey. At the beginning of the season, he was told that his goalie training this year would involve "skating out" as the team had already been assigned a goalie and it wasn't him. He took it in stride and became one of the "skaters."
I helped him dress for the first game of his season last fall. As I was going to fill his water bottle, one of the assistant coaches stopped me and said, "It looks like Andrew might have to play goalie." I said, "Why?" It turns out our goalie hadn't shown up yet. I told the coach that Andrew would do it, but I didn't want to tell him and then take it away from him so we should wait until the last minute in case the goalie showed up.
With 10 minutes to go before game time, guess what happened? The goalie didn't show up. I told Andrew he was going to be goalie and he pumped his fist while saying a big "Yesssssss!" We quickly changed him from a skater to a goalie with some help.
As he got on the ice, I thought about the fact that he had not practiced goalie for about 6 weeks or so. I figured if the other team scored 5 or fewer goals, that would be a good game for Andrew. By the end of the 1st period, he had a shutout! By the end of the second, his team was up 2-1! Mid way into the 3rd, our team scored again. I was getting nervous and excited because he was doing so well! All of the parents around me were impressed with his play. The other team got one more break away - their 5th - and this time they scored. Andrew had stopped the other 4 breakaways! The final was 3-2 our favor!
At this point, I must back up and mention that the goalie showed up during the 2nd period. The coach left him on the bench for the entire game.
In the locker room, Andrew was getting a LOT of high fives and "atta boys." He had played very well. I was very proud.
When we got to the car, I congratulated him one more time and told him how proud I was of his play and the fact that he was willing to play goalie even though he had not been chosen to be the regular goalie. At that point he said that he was a little sad. "Why," I said. He replied that he was sad because the regular goalie had not gotten to play at all. I said, "Andrew! I am MORE proud of the fact that you cared what happened to your teammate than the fact that you played well. I am very impressed."
Here was a 7 year old who had played phenomenally for his age and had received a lot of praise for doing so and his biggest concern was how his teammate was feeling. I would love to tell you that I taught him that, but I can't. He may have learned it from me, but more likely it is something God built into him. Wow!
The second large proud dad day was this week. Our oldest who is almost 22 has been an intern at a local company since September. This week was his second "mid-rotation" review. It's a time where his real supervisor talks with us about his job performance. The first review he had last fall in the "building and grounds" area was moderate. His supervisor had some good things to say and some areas to work on.
The supervisor from this rotation in the kitchen walked in and said that he had no complaints so we could all leave the meeting room. He was actually pretty serious. He went on to say that Josh has mastered everything that he has asked him to do! He practically guaranteed that if a company called for a reference for Josh, he would ensure Josh would get the job! This was a dramatic improvement from his first rotation.
We learned that Josh likes the area better. We learned that tasks that are in a predictable order each day are better for Josh. He still likes some variability, but if it's in a specific pattern, he works hard and gets the job done - even when some speed is required - a very hard thing most of the time.
He had even taken some initiative to complete an extra task that was not required of him! We have been working on initiative for a LONG time.
When I left the building and got in the car, I was so pumped that I cried! Yep, I couldn't believe what I had just heard. It was very rewarding to know that the time Laura and I have spent working with him had shown some dividends.
As I said at the top of this post - Good Dad Days are few and far between, but these two will be etched in my mind for a long time!
Saturday, October 22, 2011
MN Vikings: That Doesn't Work for Us!
Perhaps you've heard that two Minnesota Lawmakers want to give the Metrodome to the Minnesota Vikings. What a brilliant idea! It's creative, it's new, it's fresh and it doesn't add a new tax burden to anyone in the state!
Unfortunately the Minnesota Vikings have said that won't work for them. They want, no they're now demanding a NEW stadium. "Even stadium opponents understand the facility no longer works for the team, our fans of the state," team spokesman Jeff Anderson said.
Well, Mr. Anderson, Mr. Wilf, Mr. Mondale and all the rest of you, do what the rest of us do, make it work!
It doesn't really work all of the people with disabilities that took a reduction to their budgets as of September 1st this year and will take another reduction July 1st 2012!
It doesn't work because they have less staff because the staff quit due to getting paid less, or they have to cut back in some other place just to take care of their family member who has a disability.
It doesn't work for those families who lost health care because the parents can't hold a full-time job because they're absent so much due to the poor health of their disabled child and they can't get state run insurance because they're just over the threshold to qualify.
It doesn't work for the adult children of aging parents who lost their home because the services that helped them take care of their parent were cut.
It doesn't work, but they make it work. They have no choice. They come up with creative solutions and have to find a way to make it work. It's time for you to do the same. You've been offered a gift. Take it. Christmas is here now. Take your gifts and be thankful.
Unfortunately the Minnesota Vikings have said that won't work for them. They want, no they're now demanding a NEW stadium. "Even stadium opponents understand the facility no longer works for the team, our fans of the state," team spokesman Jeff Anderson said.
Well, Mr. Anderson, Mr. Wilf, Mr. Mondale and all the rest of you, do what the rest of us do, make it work!
It doesn't really work all of the people with disabilities that took a reduction to their budgets as of September 1st this year and will take another reduction July 1st 2012!
It doesn't work because they have less staff because the staff quit due to getting paid less, or they have to cut back in some other place just to take care of their family member who has a disability.
It doesn't work for those families who lost health care because the parents can't hold a full-time job because they're absent so much due to the poor health of their disabled child and they can't get state run insurance because they're just over the threshold to qualify.
It doesn't work for the adult children of aging parents who lost their home because the services that helped them take care of their parent were cut.
It doesn't work, but they make it work. They have no choice. They come up with creative solutions and have to find a way to make it work. It's time for you to do the same. You've been offered a gift. Take it. Christmas is here now. Take your gifts and be thankful.
Wednesday, September 7, 2011
Full Circle
Yesterday I realized we had come full circle. I went to Vicki's first day of "school" at her new transition program. Let me start by saying the staff was great! Vicki will do just fine with them. They were enthusiastic and interested and engaged! We've had good staff for most of the years she's been in school so we've been very happy.
What upset me was the fact that I was doing the same thing I have done for the last 13 years - training someone on Vicki's technology to get her through her day. In addition to that, Vicki was doing the same thing yesterday that she has done for the last 13 years. Waiting, while I talked with her staff.
I also realized that she will be doing *many* of the same things she was doing 13 years ago - working on driving her chair, working on communicating with her electronic talker, waiting for someone to assist her with cares.
It was enormously frustrating to realize that she's been in school for all these years and she's still doing many of the same things she did as a 6 year old. It's not that good people haven't been working with her, it's not that she hasn't had good opportunities in a wide variety of settings. It's merely that her disability has kept her from progressing in many areas.
It seems to cap off the feelings I had at graduation. The rest of her peers are moving on while she remains pretty much where she was when she entered kindergarten. It's an enormously frustrating feeling. I want so much more for my daughter and yet it seems after all these years we are right back where we started.
What upset me was the fact that I was doing the same thing I have done for the last 13 years - training someone on Vicki's technology to get her through her day. In addition to that, Vicki was doing the same thing yesterday that she has done for the last 13 years. Waiting, while I talked with her staff.
I also realized that she will be doing *many* of the same things she was doing 13 years ago - working on driving her chair, working on communicating with her electronic talker, waiting for someone to assist her with cares.
It was enormously frustrating to realize that she's been in school for all these years and she's still doing many of the same things she did as a 6 year old. It's not that good people haven't been working with her, it's not that she hasn't had good opportunities in a wide variety of settings. It's merely that her disability has kept her from progressing in many areas.
It seems to cap off the feelings I had at graduation. The rest of her peers are moving on while she remains pretty much where she was when she entered kindergarten. It's an enormously frustrating feeling. I want so much more for my daughter and yet it seems after all these years we are right back where we started.
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