05 April 2016

Day 2333 – Grayson’s Journey

Today is a milestone day. Today marks the 200th day that Grayson has skied since his injury in 2009.

In November of 2009, we had no idea if Grayson would ever walk again – he was a writhing mass in ICU in the aftermath of a brain injury so severe that life itself was a question mark. Yes, he is still severely cognitively handicapped. He still requires round-the-clock attention. That will not go away. But he doesn’t simply exist – he is enjoying life! He laughs, he listens, and he skis. Oh, how he skis! When he skis, he is like a bird on wings, freed from the bonds of his injury. He is so fun to watch. His form isn’t perfect, but he can go just about anywhere on the mountain – and go he does! 58 days last year, and 43 days so far this season and it isn’t over yet!

It would be inappropriate of me not to give credit to Disabled Sports Eastern Sierra, its founder Kathy Copeland, Mark Spieler, the wizard of all things that slide on snow, Cara Leonard who asked all of the right questions when I first called, and Laurel Martin who always knows the appropriate answer. For all of your work, counsel, education, and flexibility in dealing with us these past 6 seasons, Regina and I are eternally grateful. To all of the other staff, interns and volunteers that give their time to ski with us, you all hold a special place in our hearts. Thank you seems inadequate. I will just say the we love you all – because we do!

For all who have kept Grayson in their prayers, and who have not forgotten him, thank you! This is a long road, and we have only traveled the first leg. It is a journey, not a destination!



29 June 2014

Day 1686 – Grayson’s Journey

Dear Family and Friends

Grayson is home!

He was discharged at 2:00 PM this afternoon and, after a stop at the pharmacy for some antibiotics, we arrived home around 3:00. Most of our morning day was spent waiting to be discharged, then the last two hours were spent waiting for the antibiotic prescription we needed before we could leave. It is always frustrating to see how long the simplest of things seem to take in the medical world! The good news is that we made it home and all is well.

We were home in time for me to make it to the 3rd anniversary of my 40th high school reunion. I went to such a small school that all of the classes around us knew each other very well. So this year, as last, the classes of 1972, 1973 and 1974 all gathered for a reunion filled with much merriment! It was great to see all of these friends again. It has been even more wonderful to reconnect with these folks and see what wonderful things have happened in their lives. While most of us had been out of touch before the start of these reunion weekends, many of us are now communicating again. Ah the wonders of Facebook! We gather for brunch tomorrow before heading back to our various corners of the globe.

As I head off to bed, Grayson is sleeping peacefully – all snuggled in his own bed. Blessings abound!



28 June 2014

Day 1685 – Grayson’s Journey

Dear Family and Friends

Good news and bad news today. Fortunately, the bad news is not terrible and the good news is plentiful!

First the bad news – Grayson has to spend another night in the ICU. That isn't so bad for Grayson as he gets to watch WAY more TV then we would allow! Regina, on the other hand, will be spending her night sleeping in a chair with one eye open, next to Grayson. The reason for another night is simply the slow adjustment to the removal of all of the "stuff" and general caution – ventilator weaning, catheter removal, wound care, gradual adjustment to non-sedation, starting to sit, stand and walk again, eating, passing fluids – you get the drill.

The list of good news is far longer! He was weaned off of his sedation mid-morning but kept on a drug to limit anxiety. His vent was removed at half-past noon and that changed his mood from agitated to happy. This afternoon he stood and was moved from his bed to a chair. All IVs were stopped at that point. He had his first meal (clear liquids) since a light breakfast Thursday, and his catheter was removed this evening. All in all, he is almost ready to come home!

The plan for the morning is to have him walk around, as he is only tethered to the EKG and BP machine. After that, it is time to be discharged – something that always seems to take way longer than it should! As unusual as it is, it appears that he will be going from the ICU to home. Youth is a wonderful thing when it comes to rapid recovery!

We visit his cardiologist next week for a follow-up, and this device (his third since 2004) should be good for another 5 to 7 years. For the next 2 weeks we will need to keep his left arm from moving over his head (not a small task) but we are now in recovery mode!

Regina and I thank you for your prayers, thoughts and kind words. This was a scary reminder of those days in 2009 where we lived in the ICU for 3 weeks. Fortunately, this was a much easier trip.



27 June 2014

Day 1684 – Grayson’s Journey

Dear Family and Friends

The news from the hospital is GOOD!

At 2:30 PM yesterday, Grayson underwent a 4 hour procedure to replace his implantable cardioverter defibrillator (ICD) and both of the leads. (The ICD monitors the heart through a lead that is placed in the heart, and should therapy be needed, it can be administered through another lead.) Both leads had become compromised since their original placement in 2004 and needed to be removed. The battery in his ICD was also at end of life, therefore the device needed replacement. The ICD is surgically implanted in his left breast about 2 inches above his nipple and the leads run from the device, through a blood vessel into his heart. As you might imagine, this procedure is delicate and fraught with some risk. The procedure was done under general anesthesia.

The procedure was successful. Both of the old leads were successfully removed with no damage, new leads were placed, and a new ICD was successfully implanted and tested. Grayson is young relative to the general population that receive ICDs. As a result of his youthful, tight skin (ah don't some of us wish!), it is a bit more difficult to squeeze this additional stuff inside his breast and have the skin stretch over easily. It was accomplished, but we expect that Grayson will be more than a little sore when he wakes up.

Which brings up the next point. His team of physicians felt that recovery would be significantly enhanced should Grayson be kept out under mild sedation and comfortable with pain meds for 12 hours following the procedure. We concurred with their judgment. We saw Grayson after he arrived in the ICU for his overnight stay. He was sedated and sleeping, and looking angelic. He was on a ventilator as is protocol for the sedation. He showed some signs of discomfort, and pain medication was administered. Given that he was going to be kept in a sedated state overnight, Regina and I thought it best to get rest. We headed home to eat and get to bed. We'll be back at the hospital at 7:00 AM to be there to wean him off the sedation and to extubate him. Regina's presence is a great calming force for Grayson. She will manage his transition from sedation to awareness with great skill – as always!

So tonight Regina and I are both home, and I am minutes from going to bed. Tomorrow we expect to be a long day at the hospital, but we hope we will all be home tomorrow night. Stay tuned!

And while seemingly not a great birthday present, the gift of life is the best present of all. Happy Birthday, Grayson. We'll celebrate your birthday over the weekend!



26 June 2014

Day 1683 – Grayson’s Journey

Today is Grayson's 29th birthday! It is incomprehensible that 29 years have passed since his birth. So many memories. So many gifts of love from Grayson and all of our children.

It has been 7 months since I have last posted. I have put in a lot of Facebook chatter about our ski adventures, but the blog has gotten too much to maintain on a daily basis. Or weekly or monthly for that matter!!

Today Grayson is off to the hospital for a necessary replacement of his implantable cardioverter defibrillator (ICD). These devices have a battery life of between 5 and 7 years, and Grayson tends to chew up the batteries on the early side. This will be his third since the first was implanted in 2004 during his freshman year at USC. The last replacement was three weeks prior to the incident that became the subject of this blog 1683 days ago.

We are hoping for good care as he will be at the Keck Hospital of USC – don't alumni get extra special treatment? We can hope! He will be in the hospital overnight and if all goes well, we will all be home on Friday. When Grayson is in the hospital, so is Mom. Regina will be by his side to make sure he doesn't pull out his IVs, PICC lines and monitoring devices. Sleep is something that she will get after he gets home. If ever any of you wonder why we celebrate Mother's Day, now is a good time for some introspection. A Mom is there for you until she can no longer carry the burden. That is a lot of hefting for a lot of years. Perhaps we ought to appreciate our Mothers monthly or weekly, rather than annually on Mother's Day. Just a thought.

Today, we ask for prayers – that God will guide the skilled hands of the doctors, nurses and technicians to care for this sweet and very challenged young man. May His will be done, and may Grayson return safely to his cozy bed at home as swiftly as possible. Amen.



16 November 2013

Day 1461 – Grayson’s Journey

Hello again old and loyal friends!
It has been a LONG time since I last posted.
Today is the fourth anniversary of Grayson’s injury. Grayson continues is his existing state – not much change from month to month. Each day is different depending on whatever magic invades his brain that day. He is happy and comfortable and every morning is a gift! We are looking forward to snow in Mammoth and hope for a prolific ski season this year!
Life has been full, busy and eventful. While things are calm and stable with Grayson and our new life with him, life by its very nature presents new and exciting opportunities at every turn. As we entered 2013, I expected “more of the same” and not much change in 2013. God has a way of adjusting our expectations!
After 36 years and 8 days of working for the Boeing Company, the successor of the space business of Hughes Aircraft, I have retired effective October 25th. Now 3 weeks later, it still seems a bit unreal – especially considering the crazy and exciting special assignment I was working up until the last. That special assignment gave me the opportunity to visit and speak with friends and colleagues from all over the country – St Louis, Philadelphia, Houston, Huntsville, Phoenix, Seattle and Southern California. What a wonderful capstone to a career!
I’m writing this at 39,000 feet above mean sea level, and we are just passing over New Orleans. Regina and I are on our way to Miami where we will be embarking on a 7-day cruise to celebrate our 30th anniversary. I can hardly believe that 30 years have passed since that joyful day in 1983 when we were married. Wasn’t it only yesterday that we had our honeymoon? And that trip to Europe? And brought Grayson home from the hospital? And Austin? And Lauren? Cub Scouts, Girl Scouts and Boy Scouts? Confirmation? High School graduations? Wow! What happened to the time? One thing is certain as I watch my beautiful wife lay sleeping peacefully here beside me on the plane – our love endures and continues to grow. I’m not sure that I ever could have expected to have been so fortunate to have experienced the gifts of joy that come from a life of faithfulness to a woman that I love so dearly.
I sign off now over the Gulf of Mexico leaving you with a special public thanks to Lauren, our primary back-up, as well as Zack, Rita, Austin and Xixi, for all of their help in enabling our anniversary voyage – a gift beyond belief!

27 June 2013

Day 1319 – Grayson’s Journey

Our dear family and friends,

Today was Grayson's 28th birthday. When I went in to check on him about 6:30 this morning I found him sound asleep on the sofa in his room. He had gotten out of bed sometime after midnight, grabbed a book off the shelf and sat in the dark until he fell asleep. While this has only happened once before, I am thankful that we have a perimeter alarm on his bedroom door to alert us if he leaves his room.

He had a delightful day with his caregiver Maria. She has been with us for seven months and takes him on three walks up the canyon every day. She brought him a personal sized birthday cake and they shared it together while they perused her National Geographic coffee table book. I am so grateful that she has stayed with us so long and provides a familiar face for him each weekday.

This evening Grayson and I did things that he loves. I gave him his choice of dinner selections and he chose cheeseburger, fries and a chocolate shake. We spent time reading birthday wishes from friends on Facebook. He struggled but was able to tell me where he knew most of his friends from. One close high school friend noticed he was online and sent a message suggesting that they get together soon and "maybe... put some citrus fruit in the road for old times' sake". I can only imagine what that meant but it sure made Grayson smile. Thank God for old friends. Grayson's long term memory can still bring him joy.

For the last hour or so before I put him to bed Grayson was cracking up watching reruns of The Big Bang Theory.

Life for the three of us is settled into a familiar routine. Grayson is never left unattended. We take him everywhere with us. He still needs cueing to accomplish the simplest tasks of daily living. He still can't manage even washing his hands without direction. His speech if anything is worse than in the months immediately following his injury 3 ½ years ago in spite of working with him daily. Today when I asked him to tell me how old he is he answered 21. I told him that he is 28 then asked him again and his answer remained 21 each time. Yet last night before bed, I asked him what the next day was and he said "my birthday". As we have said before, his memory is like Swiss cheese. Sometimes you get cheese and sometimes you get a hole.

Those of you who knew Grayson well know he always had a book in his pocket (one of the reasons he always wore cargo pants). He was a voracious reader – anything from constitutional law, to black holes to anime. Today is no different. If he walks past any printed material he picks it up - novel, dictionary, comic book, or junk mail catalogue. I know some of that is just habit memory. Sometimes he just flips the pages – frequently with the book upside down or one in each hand. It's tempting to think that he isn't really reading anything but even with the book upside down he laughs appropriately. That's easy to understand when it's a comic book. Last week we were waiting for someone at a restaurant and I gave him my Kindle to occupy him (no pictures). I opened a book that was pre-loaded called "Bossy Pants" by Tina Fey. He started laughing on the first page. Since I have never read it, I checked to see what he was laughing at. Sure enough, the first page was hilarious. HE STILL CAN READ! He just doesn't remember what he reads.

Brant (in Texas and Alabama last week, Seattle this week) and I are grateful that we have been able to share 28 years with Grayson. It is a blessing and a challenge daily and nothing that we ever imagined. We are firmly united in our mission to make sure he is not only well taken care of but that he feels loved and cherished – because he is.