Day 46 – Grayson’s Condition

Dear family and friends

Here is a picture of Grayson with Regina this evening.

Today was a good day.

As the antibiotics take hold, the infection is starting to wane and Grayson remains strong. He had a full night of sleep last night. Perhaps it was the fact that we worked him hard all day! Nonetheless, he needs his night rest so he can take full advantage of the therapists during the day.

He is now starting to walk "laps" around the floor, and his distance is increasing daily. His PT friends wished he wasn't quite so impulsive (that looks interesting – turn left now!), but as he gains more control he will be able to keep himself from falling when something (or someone) turns his head. His posture while walking is even improved from yesterday. He also spent more time batting a balloon back and forth. He seems to enjoy the balloon time, and he really concentrates. It is great work for him.

Today his physical therapist was pleased that he did repetitive exercise successfully for the first time. Grayson was never much of "rep" person, but it is something he will have to become if he wants to increase his strength.

As 2009 winds down, I look forward to 2010 with great anticipation. Many are saying "good riddance" to 2009, and calling it a rotten year. True, some bad things happened in 2009, but some more are likely to happen in 2010 also. The richness of God's gift of a year of life usually comes with a few "growth opportunities" lurking in it. At Thanksgiving, Regina and I were unsure if Grayson would live. At Christmas, we wondered if he would ever walk and talk again. Now he is walking and starting to talk. I am thankful for all of the wonderful gifts that the Lord gave us in 2009, and I look forward to His surprises in 2010.

Pax!

Brant and Regina

Day 45 – Grayson’s Condition

Dear family and friends

Today was another good day.

Due to his infection, Grayson now has to wear a mask when he is outside his room, and all of us need to wear one when we are in his room. In spite of all of this, he is still progressing remarkably. Today he continued to improve his walking, becoming even more stable, and holding his head up very well. We now walk beside him just in case, and to do a little steering. He walked our 350 foot course twice today, the last one at quite a clip. He also practiced getting himself out of bed, standing up, turning and sitting in a chair. The problem for the team here is that he is so strong, that he frequently completes the exercise before all of the instructions are given.

On the occupational therapy front, Grayson batted a balloon back and forth with this therapist for about 15 minutes. He also reached high for cones and stacked them. As he is right handed, he always reaches first with his right hand, but he has very little finger control in that hand. When we asked him to reach with his left, he was much more able to grab and hold the cones. As you may recall, he has shown weakness in the right side since the accident.

We are starting to talk about the removal of the tracheostomy. Since we have a holiday weekend approaching, I doubt that anything will be done this week, but we are at least having the conversation. Perhaps next week we can get it out, and he can be a bit more comfortable.

The Lord has blessed us richly this week. Grayson is now on a very steep learning curve. Let's ride that curve as long as we can!

Pax!

Brant and Regina

Day 44 – Grayson’s Condition

Dear family and friends

Today was a good day.

In spite of his infection, Grayson's fever has been improving. It is now at a manageable level and he has resumed the full course of therapy. Today he had all forms – physical, occupational and speech – and we had quite a day. During his physical therapy, Grayson walked with his therapist on one arm, and me on the other. All we provided was a safety net so he didn't fall. He walked the full length of the corridors in his wing without stopping – 350 feet! After that he did some additional exercises in the gym, then we walked him back to his room and he promptly went to sleep for three hours.

In occupational therapy today he started to work on strengthening his hands. He now has a device in his room that he can use to work on that in his spare time. As his gross motor skills are improving, we would like to see a similar improvement in his fine skill, like his fingers and hands. Occupational therapy also covers basic life skills such as dressing, washing grooming and using the rest room. Grayson is now actively engaged in assisting his care givers in all of these activities.

In speech therapy, Grayson got the biggest treat of all – several sips of water! He was so happy! He also said several new words today there including his first and last name (the last is much easier!), and my personal favorite was his response to the question of where he went to school – USC of course.

His infection was cultured and it turned out to be that particularly nasty staph bug – MRSA. Because he can cough it up, we now have to wear masks when we are with him for the next several days. This is frustrating for him because we start to all look alike. We hope we can get past this non-rehab part quickly.

Thanks again for all of the love, encouragement, support and prayers. God may work in mysterious ways, but I am surprised and delighted every day by that work.

Pax!

Brant and Regina

Day 43 – Grayson’s Condition

Dear family and friends

Today was a day of recovery.

At 11:15 AM today, we passed another milestone – it has been 6 weeks since Grayson had his incident.

Grayson spent much of the day sleeping. He was running a fever most of the day, and the antibiotics were chasing bugs in his lungs and in his belly. The good news is that both were on the wane, and that the guys in white hats were winning the battle.

Grayson did manage to get one session of physical therapy (PT) in, as well as one session of occupational therapy (OT). Normally he would get two sessions, but he slept through all of the others. He is so tired, and the fever has just wiped him out.

After spending 26 hours at the hospital, I went home to prepare our belated Christmas dinner. After a day at her office, Regina came by to see that things were under control, and then came home to join us. At the 11 PM shift change, Regina went back to the hospital, and Jesus saved the day – Jesus the sitter had agreed to stay on until 7 AM. Jesus is one of the great sitters that we have benefited from. Regina came back home to have desert and all of us will have an opportunity to sleep at home tonight.

Blessings to all as we continue our Christmas celebration!

Pax!

Brant and Regina

Day 42 – Grayson’s Condition

Dear family and friends

Today was not so good.

Grayson has contracted an infection in his G-tube site, is running quite a fever and he has become quite congested. He woke up at midnight Sunday morning after 2 hours of sleep, and finally fell back to sleep at 9:00 PM Sunday. He was frustrated and tired all day long, but wouldn't fall asleep. Add the infection, fever and congestion, and he was quite miserable, and made it so for his caregivers and Regina also. I got one of those looks and a hug that said, "Fix it Dad!" when I arrived. He will likely be down for a day or two as he recovers from this setback. One unusual and good result – he is sleeping and it is nighttime! Perhaps this will be the break in his sleep pattern so he can be alert during the day for therapy? One can hope. God does work in mysterious ways!

I was reminded by one of the comments on my last posting that tonight is the annual Flintridge Preparatory School Alumni Gathering. He has not missed one since graduation, until tonight. Lift a glass on his behalf, ye lads and lasses! With help from his caregivers, and guided by the healing hand of God, perhaps next year.

Pax!

Brant and Regina

Day 41 – Grayson’s Condition

Dear family and friends

Today was a good day.

Today was the first "regular" day here in the acute rehab program. It was a regular Saturday, which means Grayson gets occupational, and physical therapy twice today, but not speech therapy. Due to the Christmas holiday, he will also get therapy on Sunday this week – something not usually done.

Grayson likes the newness of the various therapy disciplines. Today he tried his hand at stacking cones, throwing and catching a ball, kicking a ball, batting and catching a balloon, some exercises (he didn't tolerate that too well) and a lot (for him) of walking. He walked two thirds of the perimeter of our floor with assistance, in two installments. He walks relatively well. His biggest problem is that he is putting his feet one in front of another, instead of keeping them about shoulder length apart. He will learn this in time - he loves being up!

He still sleeps too much during the day and not enough at night. His lack of restful sleep at night makes the therapy less effective than it could be. Fortunately, he had two opportunities to do therapy today, and the second one was right after a 4 hour nap.

He is still very restless at night, and his continually increasing strength and control, make him more dangerous than ever to himself. When Regina and I take a night off, we sleep in dread of the phone call saying that something happened. We have been fortunate so far that the staff on duty when we are away have mostly been competent. This is a new facility for us, and we are still becoming acquainted with the staff, so we remain nervous.

I promise not to bore you with too many pictures, but here are a few from today. This first is one of Grayson stacking cones, the second he is catching a ball, and the third is him walking the hallway with his pit crew – one holding him on each side, and one following with a wheelchair. All of this continues to give me cautious optimism that we will have a better outcome than I feared just a few weeks ago.

Blessings to all of you on this second day of Christmas. I hope that your celebration was everything you had hoped it would be, and that the true spirit of Christmas is still living in your hearts.

Pax!

Brant and Regina

Day 40 – Grayson’s Condition

Dear family and friends

Merry Christmas to all! Today was a good day.

Today was good, but all family traditions went right out the window. The rib roast is still in the fridge, along with all of the side dishes. The presents are wrapped, and are sitting by the place that the Christmas tree is traditionally located at our house. The stockings were stuffed and by the fireplace, but this year the individuals opened them up as they were home and available, instead as a group over coffee first thing in the morning. The meal and the gift exchange will happen, just not on Christmas day. I am sure it will be before the Feast of the Epiphany, the date of the first Christmas gift giving. The disappointment that each of us felt in giving up our traditions this year was small compared to the joy we have that Grayson is still with us and improving.

Regina was at the hospital all day Christmas Eve, coming home for maybe four hours before being called back at 4:00 AM. Grayson was restless, and the staff was having difficulty handling him. I relieved her at 2:00 so she could go home and get some rest, and am spending the night tonight.

Grayson's sister, brother and brother's girlfriend came by and visited Grayson today. His brother pushed Grayson around the floor in his wheelchair. Here is a picture of them on their "rounds", and another of Grayson smiling for you. Notice the festive hospital clothing Grayson is wearing. He wore that hat for a solid two hours!

As Christmas day winds to a close, it is our greatest wish that all of you that have been so kind and supportive of us during this difficult time be rewarded just as richly as you have blessed us. May the joy of the miracle of the birth of Jesus remain with you throughout the coming year.

Merry Christmas!

Brant and Regina

Day 39 – Grayson’s Condition

Dear family and friends

Today was mostly a good day, with a minor crisis.

The crisis was that during the night, and probably when I was wrestling with him to keep him from falling out of bed, he pulled his feeding tube out. The crisis here is that Grayson is already down 40 pounds since arriving at the emergency room on November 16^th. While some of that is good, 40 pounds in less than 6 weeks is too much, and now we had no way to get nourishment into him. Fortunately, an operating room opened up late today, allowing the doctors to reinsert the feeding tube. After an 18 hour interruption, he is being fed again.

Since Regina has been doing most of the daytime supervision, I have not been able to see Grayson interact with the PT staffs of the facilities that we have been in. Today I was there when Speech Therapy, Recreational Therapy, Occupational Therapy and Physical Therapy arrived to work with him. What a hoot! When physical therapy took him to the gym to assess him and get a baseline, the first thing they did was to have him pick up a cone (shaped like a small megaphone) and hand it to me. Using his shaky hand, Grayson picked up the first cone and slowly handed it to me. When he was asked to pick up another and also hand it to me, he picked it up then put it to his mouth like one of the USC Yell Leaders – very funny! His PT announced that we have a comedian in the unit. Next they wanted to see how well he could stand and walk. They wheeled him over to the parallel bars, put a safety strap on him, and then asked him to stand up – which he did. When he was asked to take a step, he put one foot in front of the other and walked the length of the apparatus. I about fell over, as did the PT dude. On request, he turned around and went back the other way. I was sure impressed!

His vocabulary is now up to 3 words. I mentioned that he learned, "Hi" the other day. Yesterday he started using "Mom". Today was a bit more painful, when he said to Regina, "water". He about broke my heart on Monday when he saw me take a swig out of my water bottle, opened his mouth and pointed to it with a pained expression. I have been very careful to let all of the care givers know not to eat or drink around him, because he is still not cleared to take food or liquid by mouth. Looking for the good news – he is starting to speak!

Even at 4:00 AM, it is still Christmas Eve, since I haven't gone to bed yet! Grayson is showing remarkable progress. It has been an awesome week! The Great Physician is working his will, and is blessing Grayson with greater quality of life every day. This year, Christmas has taken on new meaning for us. Gifts of "stuff" are just not that important this year. Gifts of true love, friendship, caring and life have all taken center stage, and have overwhelmed us. May the blessings and wonder of Christmas, continue to bless you and your family until next Advent!

Pax!

Brant and Regina

Day 38 – Grayson’s Condition

Dear family and friends

Today was a wonderful day!

As I announced earlier, Grayson moved to an acute rehab facility very close to our home and even closer to Regina's office. This is a beautiful brand new facility, with a caring staff and a set of goals that are aligned with ours – to get Grayson to the highest level of functionality that we can in order to maximize his quality of life.

Tonight we spent most of our time getting him settled in – something that takes a while when changing facilities. I'm spending the night to be a resource to the staff as they adjust to our very active, extremely tired young man. Regina is taking a few, well deserved hours off.

The reason that we are here is the progress Grayson made during the last 5 days. Something in him has started to waken, and that is exciting. We anxiously await the wonders that the Lord is revealing to us daily as Grayson starts this new journey.

With each new care facility that we participate with, I keep thinking of this line from My Fair Lady – "All you need is faith, hope, and a little bit of luck." I'll leave you with a clip from Flintridge Preparatory School's 2003 production of My Fair Lady, with Grayson as Alfred P. Doolittle singing, With a Little Bit of Luck. Enjoy this good old bit of fun from Grayson's past!

Pax!

Brant and Regina

Breaking News – 23 December

Just in time for Christmas – Grayson is moving to an acute rehab facility just a few miles from home! The ambulance has been called to transport him this afternoon. More details in the regular posting later tonight.

Praise God!

Brant

Day 37 – Grayson’s Condition

Dear family and friends

Today was a good day.

Grayson had a good night last night. Even though he didn't sleep a wink, he was not a bother to the staff. The reason was that he was being rolled around in the wheelchair all night long. He didn't fuss and he was looking around holding his head erect most of the night. He flirted with the nurses, touched the hand rails, explored the "machine" (the soft drink machine – he is fascinated by it), and reached for and touched anything shiny. Bottom line – he was out of bed, and that must be a great relief – even to his caregivers who were only too happy to push the chair rather than fight with him in bed.

Unfortunately, this left him at an even greater than usual sleep deficit by morning. Like a young child, he fought sleep until it was too much, finally giving up the chair for bed at 12:15 PM today. After 3 hours of sleep, we rousted him again for physical therapy. He was so tired that about all he could was go back to the chair. He rolled around until he was again exhausted, and we laid him in bed around 7:00 PM. He immediately rolled on his side and looked like he was going to sleep. Then he slowly started tossing and turning, and the battle was lost. He was back in the chair by 8:30, after 45 minutes of personal hygiene, changing sheets, gowns, etc. I left around 9:15 and kissed him goodbye as he was fighting to stay awake in the chair. I hope he manages to get some sleep tonight. He needs his rest in order to concentrate on his rehab.

Speaking of rehab – it looks as if moving day is about upon us again. Grayson has progressed so well and so fast, that he is about ready for acute rehab. We started exploring facilities, and we think that we found a great one very close to home. That was absolutely wonderful news because it is even closer to Regina's office, allowing her to go have lunch with him, and visit before and after work. The other facility we were looking at is a wonderful one, but it is located even further away than our LTAC facility – another 20 to 30 minutes down the road. He was actually approved to move to the facility further away today, but we have delayed it a day or two to try and move to the closer facility. Grayson may get to acute rehab by Christmas! Considering that a week ago I thought we might be looking at rehab by Easter, if at all, this is indeed something to celebrate.

I am finally able to write something Regina and I have been sensing for a few days, but were afraid to say – Grayson is going to walk again. I just know that he will, and I base that on the progress of just the past few days. How much more of him will the Lord give us back? Stay tuned – that has not yet been revealed, but according to Jeremiah 29:11, He has a plan!

Pax!

Brant and Regina

Day 36 – Grayson’s Condition

Dear family and friends

Today was a very bad day, and a very good day.

Regina arrived at the hospital this morning to a very self righteous case manager who was definitely not like the rest of the staff. Regina was told in no uncertain terms that, "Grayson is not appropriate for this facility and must be moved." She went on to say that she was the expert in this matter, and she would not listen to anything that Regina had to say. Until he was moved, she stated that we would have to stay with him around the clock. Nice way to start the day.

Fortunately for us, the physicians are in charge of patient care. Grayson's managing physician assured Regina that he would not be moved until it was appropriate to do so. This was some consolation to a morning of shattered hopes. After all, we have only been there since Thursday night, and to have this sort of greeting first thing Monday morning was highly disturbing.

As is typical of these silly humans, perhaps we forgot about the person we are all there to help – the patient! It is not the comfort of the staff or the maintenance of the status quo that they should be interested in. As Regina worked within the system to try and make the best of things, I took the opportunity to have a very nice chat with the administrative director of the facility. I believe that he and I came to an understanding about patient care and goals. He thanked me for bringing it to his attention so it could be worked – another teaching moment for management. For the record - both Regina and I are home tonight.

Speaking of the patient, Grayson continues to make remarkable progress. The physical therapists were back today. First thing, they got Grayson in a chair, and he was rolled all over the hospital, and outside into the parking lot, He reached out and touched things, and thoroughly enjoyed the experience. He said, "Hi" today – his first word since the incident.

Tonight, since his sitter is a big dude, the PT staff allowed us to put Grayson in the chair and roll him around the hospital. We put him in the chair at 5:00, and when I left at midnight, he was still in it. He was being pushed all around the hospital. He reached out to every staff member he encountered, he loved watching and touching things. Since he has stockings on his feet, the floor where he has traveled is spotless. However every dust bunny in the place is now in his bed!

His facial expressions are very animated, but we are still trying to figure out what he as telling us. One thing I know for sure – he would do just about anything for a drink of water or a taste of real food! Now we have to eat and drink out of sight, or we risk the pained expression and open mouth that will break your heart. If you had told me a week ago that Grayson would be doing these things, I would have considered you loco.

So now you can see why it was such a very good and very bad day. Fortunately, they are all God's days and He continues to shower us with his blessings.

Pax!

Brant and Regina

Day 35 – Grayson’s Condition

Dear family and friends

Today was yet another good day with the same continuing challenges.

Grayson continues to gain strength. Today, for the first time since he was hospitalized he was able to squeeze Regina's hand with his left hand. Since the incident, his right side has been more severely affected than his left, and he was unable to do so with his right hand. He was also starting to use the fingers on his left hand to pick up an object. It is interesting to watch him stop thrashing about and focus every fiber of his being on being able to do something – raise his hands over his head, touch my nose, ears or moustache, or pick-up and hold something. Today, I think he misinterpreted my request to touch my hand. He slowly reached out, took my hand, and pulled it to his mouth and kissed it. OK, I lost it.

Last night we had three phone calls after I posted my blog about how hard the staff was having managing him. I believe that last night I said that if I could do it, anyone could. Well, that was yesterday. Today he has gotten even stronger, and it took Javier and me working together to keep him from hurting himself for several hours today. This was after Regina and Lauren had been there doing the same thing earlier today. Last night, there were four people there to keep him safe. He is getting so strong that he is becoming dangerous to himself. He so badly wants out of the bed we are finding it nearly impossible to keep him in it. However, like the dog chasing the tire of a passing car – what would he do if he caught it? If Grayson gets out of bed, we will be picking a 215 pound adult off of the floor (yes, he has lost 35 pounds since he was first admitted on November 16^th). Worse yet, if he were to fall out of bed when his aide was momentarily distracted, he could sustain a serious injury to add to his already deep trouble.

My dear cousin Doug mentioned in his comment yesterday that this blog gave him targets to pray at. That was great, Doug! So here is another target for you: Lord, please keep Grayson safe from his emerging strength; that his caregivers be ever vigilant; and that if a fall should come, his head should land on a soft pillow in his bed. Amen.

Pax!

Brant and Regina

Day 34 – Grayson’s Condition

Dear family and friends

Today was another good day with some challenges.

The goodness is that Grayson continues to gain capability and strength. We are getting little glimpses that give us hope. Today he reached out and tenderly touched my face, and the faces of his brother and sister. It was such a moment of peace in the storm of all of the churning. He also sat in a chair for 25 minutes during physical therapy. Additionally, he raised his arms above his head several times on command today. Clearly he has moments where he is able to understand basic commands and can execute some that require the use of some basic motor skills. As I said earlier, this gives us some cause for cautious hope.

That strength thing is great, and difficult. This is now the source of the challenges. The staff needs to gain an understanding of how to manage Grayson as he becomes stronger, and has more ability to control his actions. I received a call just before midnight that there were 4 people in his room trying to keep him under control. Clearly we will need to work with the facility managers to teach the people entrusted with his care in the ways to handle him. If I can do it, I know it can be done!

Today Regina wrote, "I give him to God every day – and God is giving him back a tiny piece at a time." I couldn't have made a more astute observation. I give thanks for the gifts that He continues to bestow upon us.

Pax!

Brant and Regina

Day 33 – Grayson’s Condition

Dear family and friends

Today was a good day, with some challenges.

Grayson had some more periods of clarity today. During those periods of clarity for Regina, he was looking around the room and focusing, he raised both arms on command twice. For me he imitated me raising my eyebrows, and then repeated it twice when I asked him to. The coup de grace was when Regina said, "Smile if you want me to read to you." Then he did! She read to him for several minutes before his attention span wore out, and he became restless. He churned on for a few hours before falling asleep.

Grayson continues to gain muscle strength. This is both good and bad news. The good news is that his strength will do wonders for him if he gets into a rehab program. In the meantime, he is a handful to manage. Most of the nursing staff is quite petite, and they are a little bit afraid of him because of his age, size and strength. Fortunately, we have learned how to manage him, and the staff is learning also. This is part of the adjustment period that will take a week or so to run through.

Regina and I are encouraged by Grayson's progress in the last week, but still understand that he has a long, long way to go to become all he can be after a trauma of this nature. We trust in God's plan. That's all we can do.

Pax!

Brant and Regina

Day 32 – Grayson’s Condition

Dear family and friends

Today was a hard day, but a good day.

Today was a hard day because of the adjustment to a new environment. The staff has to learn to understand Grayson and his needs, and we need to adjust to their routines, procedures and personalities. Grayson looks pretty docile sleeping in the bed, and that can be deceiving. When awake, he is a handful, and this staff didn't have the previous shift to bring them up to speed on what to expect. He was moved twice today to bring him closer to the nurses' station (yes he is in his 3^rd room since arriving there late yesterday!) They now know that a sitter needs to be 1-on-1 and can't also be assigned to watch and tend to 2 other people at the same time. The sitters on duty today learned what to do, and what not to do. So, as I said, it is an adjustment all around. That adjustment is hard, but necessary. Regina spent 14 hours there today working with Grayson and the staff. Grayson (and I) are lucky to have her strength, stamina and determination to get him through this to be all that he can be.

Today was a good day because Grayson is showing a few signs of improvement during his periods of clarity. I must caution that these are little signs, but he continues to gain strength, he is able to track voices and look around slowly. Some capability looks like it is returning, and that is indeed good, no matter how small.

Blessings to all of you as you finish the hustle and bustle and excitement of preparing for the Feast of the Nativity. This year we have a deeper appreciation for Christmas than ever before.

Pax!

Brant and Regina

Day 31 – Grayson’s Condition

Dear family and friends

Today was a busy day.

After a day of dressing changes, physical therapy, final examinations and discharge authorizations, Grayson finished his stay at the hospital at 3:30 today. Regina made the ambulance ride with him to his new long term acute care (LTAC) facility, and this was his first time outside the hospital since November 16^th – one month ago today. Unfortunately, he only went from one hospital to another. This new location has perhaps some of the friendliest folks I have ever met, so our expectations are quite high. First appearances are that we made the correct choice in facilities. So far the only downside was that getting there from home at 6:00 PM took an hour. When we left him this evening, he was resting peacefully.

I have a new found respect for my friends in the journalism industry! Another correction or clarification to one of my blog postings – this one from yesterday: My statement "leap out of bed" was a bit misleading. While I tend to talk that way, in reality, Grayson, left alone for a few minutes, will in fact throw his leg over the side rails and pull himself out of bed and fall on the floor. Having just taken my 253^rd personality profile, it has once again confirmed that there are perhaps 3 or 4 people on the planet that are more optimistic than I am, and I speak and write that way. I need to remember to bring a reality check back in for you, and point out that Grayson will be extremely fortunate to have the capacity to be able to walk or speak again.

Is it really Day 31 already? Thank you for all of your continued prayers, notes, and other gestures of kindness. We are truly blessed by all of you – you give us strength. May the blessings of God continue to extend the miracle we have already witnessed in the life of Grayson.

Pax!

Brant and Regina

Day 30 – Grayson’s Condition

Dear family and friends

Today was a bit melancholy.

For Grayson, today was little different than most other days. The same pattern – a few hours sleep, followed by 15 to 30 minutes of clarity, then several hours of churning. The churning appears to be getting more "productive" as he is further away from the sedatives. "Productive" because he is getting stronger and he is able to turn over, leap out of bed, try to sit up and the like. The reason "productive" is in quotes, is that none of this is consistently good with cardiac telemetry, feeding tubes, catheter, etc. Strong, however, is good. It will do him service if he is ever able to respond to commands and tolerate rehab. It just requires a bit of extra work on the part of his caregivers.

Tonight is our last night here. Tomorrow Grayson will be transported to a long term acute care (LTAC) facility roughly 20 miles away. We will miss being just 1.8 miles from home. We trust that the facility will have the same caring people that we have come to take for granted here.

Change can be good. Change makes us grow. Change is scary. Our lives have been changed forever by the events of a month ago. Now we are changing locations. Let us hope and pray that we made the right choice of facilities, and that the staff will learn to love Grayson the way that we do. We trust the Lord to keep him safe as we say "good-bye" to our home-away-from-home of the past month.

Pax!

Brant and Regina

Day 29 – Grayson’s Condition

Dear family and friends

Today was another milestone. As of 11:30 AM PT, we are entering the 5th week of our journey.

Today was a tiring day.

Grayson slept very little today. He is not sedated, and he is strong. His agitation is not as angry or frustrated as before. He now "churns" more in slow motion and more calmly. But he still is going and going, kind of like the energizer bunny. Sleep comes occasionally, and for 2 to 3 hours at a time, then a short period of clarity, followed by hours of churning. Why? Your guess is as good as mine. Today Regina was with him on her feet for over 12 hours, and he slept less than three hours during that time.

Since Sunday, Grayson is in a new area of the hospital and the staff doesn't know his routine. Today, to simplify things for the staff, they moved him from a private room to a semi-private room. The reason – so Grayson's sitter could also look after someone else. The staff had no idea how much effort Grayson is when he is awake, and they also assumed that Grayson would sleep through the night. Assumptions are not always a good thing to base decisions on without assurance that they are true! We'll see how everyone feels in the morning, but Grayson is certainly being a handful now. Fortunately, he has been going long enough, that he may just give them a break shortly.

We will probably be leaving here this week. I'm not sure of the date yet, but we are fast approaching our departure. We will be leaving a hospital 1.8 miles from our house and moving to one that is 20 miles away. This is a sign that he is getting better, but it is sad that he won't be as convenient. At our new facility he will be in much closer quarters with fellow patients, but have greater access to physical and speech therapy.

Unlike flow charts, time moves in one direction. I wish that there was a decision block that would allow us to go back and redo some things. Unfortunately this is not the case. I am grieving the loss of the past, while wondering what lies in store for us in the future. I am comforted that God has a plan.

Pax!

Brant and Regina

Day 28 – Grayson’s Condition

Dear family and friends

Today was a good day.

Grayson was moved from the Pulmonary Unit to the Neurology Telemetry Unit. He will probably only be here two nights or so before moving to a Long Term Acute Care facility. He had several tests run today and was sedated for most of them, so it was a relatively quiet day.

While I was at church participating in our Christmas concert this evening, Grayson had a period of some clarity with Regina tonight. He gave her several smiles and was able to track her in the room. These are encouraging signs, not that he will recover fully, but that he may have the capacity to learn some things to enhance his quality of life. And smiles are really good, especially for Moms and Dads.

It was wonderful seeing so many of you at the Christmas concert tonight. Thanks for the million hugs (I never exaggerate!) I brought them back to the hospital to share with Regina. This is a long road, but with God's help, and all of your love and support, it will be made easier.

Pax!

Brant and Regina

Day 27 – Grayson’s Condition

Dear family and friends

Today was not a good day.

Regina went to the hospital this morning, and was quite surprised to find that things were a bit of a mess. Grayson was agitated all night long, and after 10 hours the result was that, among other things, he had torn out his PICC line, his IV line, and was bleeding from where his legs had struck the side of the bed. While there was clearly some inattention from his sitter, there is a reason for the increased agitation. There was a rising amount of ammonia in his bloodstream, a result of reduced liver function triggered by the antibiotics he has been on for the past weeks. Today he was sedated, had his 3^rd PICC line installed, his medications were adjusted to eliminate the antibiotics, and new ones administered to reduce the ammonia. When we left him this evening, he was resting peacefully. We also had a conversation with the nursing manager to enable a teaching moment in patient care. For the record, after 27 days, this is the first time we have been displeased with the nursing staff.

We are expecting a quiet day tomorrow, as it is Sunday, and all non-urgent things are generally held until Monday. Let's hope this is the case after today's experience!

I realize that, in the blur of events at our house, we have entered the Christian Season of Advent, and the Jewish Holiday of Hanukkah. May your expectant waiting and preparation for the Feast of the Nativity, and the celebration of the rededication of the Temple in Jerusalem, bring us all closer to God, and may miracles, like those that form the basis of those holidays, also bless Grayson in his fight to recover.

Pax!

Brant and Regina

Day 26 – Grayson’s Condition

Dear family and friends

Today was a busy day.

Grayson had a PICC line replaced and several other ancillary procedures. A MUGA scan (a heart scan) was also attempted, but by the time he got to radiology, he was too restless. He slept a fair amount today, due to procedure sedation. His toe injury from yesterday seemed to be healing quickly.

During his physical therapy today, Grayson was able to focus his eyes and track for a bit. He was also able to blink on command and, once he was taught where his mouth was, open and close it on command. These are encouraging signs and, as a result, he will begin a bit of additional therapy to see if we can exploit some of these small victories.

Regina and I visited two more LTAC facilities today. At this point, there is one that appears to meet Grayson's needs better than the others, so the path here seems to have been made clear.

Sunday is our Christmas Concert at church and we are opening the concert with the hymn, "Once in Royal David's City". Since 1919, the Christmas Eve program at King's College Chapel in Cambridge opens with that hymn as the processional. The first verse is sung by a boy soprano a capella. When Grayson was in 5^th grade, he was chosen to sing that verse to open the Christmas program at his school. Here is a clip of that performance from 1996: http://reedhaus.com/video/once_in_royal.wmv

Sort of like his life, this performance had a shaky start, and the ending was just the start of another verse.

Pax!

Brant and Regina

Day 25 – Grayson’s Condition

Dear family and friends

First, a correction on yesterday's blog – Grayson was moved out of the ICU on Tuesday, as I said in my Day 23 entry. Yesterday I must have been tired, because I said that we moved out again. Losing track of time, combined with losing sleep, must be a sign of old age!

Today was a hard day.

Medically Grayson remains stable. Today there was an accident during his physical therapy, and one of his toes was injured, causing him a fair amount of pain and distress. He is quite large, as I have mentioned before. And even though he has lost roughly 20 pounds since admission, he still weighs about 230. Working with him to sit up requires 3+ people pulling and working hard to hold him in place. In trying to do so today, one of his toes got under a chair leg, and got caught. I not only felt bad for Grayson, but for the lead therapist who was mortified, and who left the room in tears.

We were not actually with Grayson until 6:00 PM. His Aunt stayed with him today while we were touring Long Term Acute Care Facilities. Grayson will be moved out of his current hospital to one of these long term hospitals in the next few days. We will visit a few more before we make our decision, but the closest is about 10 miles away. While we were quite impressed with the quality of the care in these facilities, and their commitment to moving the patients along on their journey, the facilities are certainly more crowded. Not that Grayson cares at the moment, but privacy is a lot more difficult with 2 or 3 patients in a room. Fortunately, the staff was both qualified and caring, the physical therapy facilities were good, and one of the places smelled clean and nice – not like your typical nursing home.

For those interested, here is what we have learned regarding the continuum of medical care facilities:

Shirt Term Acute Care – a.k.a. the traditional hospital. Typically performs major surgeries, critical care and emergency care.

Long Term Acute Care (LTAC) – A fully functional hospital for acute care requiring stays of 3 weeks or longer. Typically has facilities for minor surgery, and a range of physical and occupational therapies.

Sub-Acute Care – A facility for patients that require a multi-disciplined approach to a complex medical problem, but whose condition does not require acute care.

Skilled Nursing Facilities (SNF) – The traditional nursing home or rest home, for patients that need rehabilitation or medical care that is of a lesser intensity than provided at a hospital.

So, Grayson is moving from Short Term Acute, to Long Term Acute. The goal from LTAC is to then move to a residential rehabilitation facility so that he me build life skills and become all that his new capabilities will allow.

Many of you have asked me how long it will take Grayson to return to normal. The fact is that we need to find what the new "normal" is, and truthfully, we don't know what his outcome will be. Based on the type of injury, and the level of damage, we are reasonable certain that the Grayson that we all knew is gone. Short of a miracle (and we are still praying!) there is a range of possibility for his outcome. At the high end, we are hoping that we can get him to a point that he may someday be able to live independently. At the low end, he could be institutionalized for the rest of his life. Between those extremes are assisted living, small group homes, large group homes, etc. As with all extremes, the answer is more likely to be in the middle somewhere. It has been suggested that we may wish to start playing kindergarten level games with him when he is lucid.

This is the burden we have been carrying for the past few weeks. We have not given up hope, and all miracles are welcome here – encouraged in fact! Grayson is blessed with a strong body and youth. He is also blessed with an increasing body of research into the repair of brain injury. All of this could contribute to a more satisfactory outcome. While odds may be stacked against him, I have faith that we will be guided to the best possible outcome.

I apologize that this posting has been so long, but I thought it was time you all knew just how difficult the road ahead for Grayson is. Hopefully this puts some context around our daily emotional roller coaster. Keep praying!

Pax!

Brant and Regina

Day 24 – Grayson’s Condition

Dear family and friends

Today was a full day.

Early this afternoon, Grayson was moved out of the ICU to the Pulmonary Unit here at the hospital. He will stay here until we are sure that he can stay off the vent. At that point, we may move to the Neurology Unit. Tonight, he went back on the vent for a few hours, so the move to Neurology may be postponed or cancelled. If the move is cancelled, he will be discharged from here.

We learned a lot today, and wish that we had understood much of this earlier. Today we made up for lost time! The hospital is also known as a short term acute care facility. Patients are moved along quickly to home, or, in the event acute care is still required, to a long term acute care facility. This is a facility that has many of the trappings of a hospital, but does not handle emergency patients or major surgery. We will spend the next several days visiting these facilities to determine the proper one of these for Grayson. The main thing for him is that acute care is available, and that his physical therapy can continue. Our expectation is that he will discharged early next week. We will certainly miss the location (1.8 miles from our house), but staying here is not an option.

Grayson's condition remains the same. Medically, his youth and strength are serving him well, and he is stable and rapidly recovering. The brain injury is our next focus. Perhaps his youth will serve him well there also.

Thank you all for your positive comments on this blog. I am surprised how many of you are checking it daily, but your love of Grayson has become obvious to me. Thank you for your continued prayers, supporting and loving words, and those ever-so-welcome hugs (whenever we come out of hiding!) I know that God has a plan for us. I just wish we could find out sooner!

Pax!

Brant and Regina

Day 23 – Grayson’s Condition

Dear family and friends

Today was a busy day.

It was moving day for Grayson – out of his home for the past 22 nights, the ICU, to his new quarters in the Pulmonary Unit. He will be there for a few days to make everyone comfortable with his ability to maintain his airway and keep his oxygen saturations up. Once we are assured that is the case, he will then move to the Neurology Unit.

Before the move, Grayson had his regular physical therapy, and everyone was quite pleased that, while his body was supported in a sitting position, he was able to hold his head up for several seconds. The PT crew cheered, and all the staff from the ICU came running into the room to see and celebrate, as after three weeks, they all know him and his story. He rewarded them all with a big toothy smile, as I about lost it. That effort was all Grayson had in him for the day.

So the roller coaster continues – an encouraging moment now and then, followed by long stretches of frustration. We continue to ask God for the patience that we need, and healing, however much we can have, for Grayson.

Pax!

Brant and Regina

Day 22 – Grayson’s Condition

Dear family and friends

Today was a long day.

We passed another milestone. As of 11:30 this morning, we are now into our fourth week of our journey. We have been in the ICU ever since we left the emergency room. That is about to change as we are about to move out of the unit. Grayson is off all of his sedatives. The breathing tube is out, and he is only using the vent at night to give his breathing muscles a bit of time to recover from the tube.

We will miss the ICU. The care here has been exceptional and loving. I know that many of the staff saw something in Grayson that reminded them of a son. Others saw him as a peer of their own age. Whatever the reason, they all became our friends and took wonderful care of him – and us!

It was great to see everyone in the choir tonight. I brought a bag full of hugs back to share with Regina. Thanks for allowing me to miss so much rehearsal time, and still sing in the concert!

We don't yet know God's plan for us, but we do know that there is a plan! We are human – we get discouraged and disappointed. But we take solace in knowing that He is with us every step of the way, and that your prayers lift us up daily.

Pax!

Brant and Regina

Day 21 – Grayson’s Condition

Dear family and friends

Today was a hard day.

Hard on the soul, watching our grown son so helpless. It is also hard on the soles of the feet, standing there keeping him from flopping out of bed or hurting himself. Regina said it beautifully today in her Facebook Wall Post:

"It is hard to see Grayson lying in this hospital bed now day after day. Arms and legs churning for hours. Unable to respond to commands. Such a completely uncertain future. Will he ever walk or speak again? So many questions and no answers. Just wait and see - wait and see. Even though it is hard, I thank God for patience and for the 24 happy years so far. 'I have a plan for you.'"

I couldn't have said it better.

Pax!

Brant and Regina

Day 20 – Grayson’s Condition

Dear family and friends

Today was not a bad day.

Grayson rested much of the day, with a few hours of his squirming. The main thing we worry about with his wiggling about is accidentally pulling on the myriad of tubes and wires, or pulling himself out of the bed. That is the main reason that we are staying with him at the hospital, as there is no way that the staff can spend full time monitoring him at the bedside. The alternative is sedating him, but as I spoke of yesterday, we are trying to keep him off of all sedations so we can finally perform a neurological assessment.

Grayson's right side seems more affected than does his left. His right eye, right arm and right leg are all less responsive than his left. His right leg also appears to have also lost more muscle mass than the left. Physically, he is healing well. Now we need to understand his neurological status so we can select the next facility for him.

Sleeping there peacefully tonight, Grayson looks just like he did three weeks ago, right down to the fact that he needs a shave. I'm struck by how quickly everything changed. Take this as a gentle reminder to tell those you love just how much they mean to you, and punctuate it with a hug.

Pax!

Brant and Regina

Day 19 – Grayson’s Condition

Dear family and friends

Today was a hard day.

Last night was particularly tough on Regina. Grayson has been weaned off of almost all of his sedation in order to be able to assess him neurologically. As a result, he was quite restless and churned about all night last night, and most of today. Keeping him calm and from hurting himself consumed big chunks of the night and day. Sleep is something she is finally getting at home tonight.

Grayson currently has no control over his limbs, or any apparent ability to focus or track with his eyes. He does appear considerably more comfortable with the feeding and breathing tubes out of his face. I was out of town this week, and was shocked when I returned and saw how much muscle mass he has lost in less than three weeks. His normally strong muscular legs have shrunk considerably.

Grayson will probably move out of ICU next week. From there it will be a short time before a move to rehab, so our new assignment is to find an appropriate residential facility for him – soon.

As always, we are so grateful for your prayers and notes of support. I can't stress enough just how important to us they are right now. Your faith continues to strengthen ours. Thank you.

Pax!

Brant and Regina

Day 18 – Grayson’s Condition

Dear family and friends

Today was a disappointing day.

Grayson slept most of the day, then in the late afternoon became restless. He is no longer sedated, and he became agitated this afternoon for about an hour. The neurologist is trying to keep him off of sedation as much as possible, so these episodes are to be expected as we try to assess Grayson from a neurological basis. Unfortunately, at this time he still seems to have little motor control, but we remain hopeful that this is a step in the recovery process.

I know that I have said this before, but Grayson is in God's hands. We thank each of you for your outpouring of love, prayers and offers of help.

Pax!

Brant and Regina

 

Day 17 – Grayson’s Condition

Dear family and friends

Today was a quiet day.

Grayson spent most of the day sleeping peacefully, therefore I haven't really much to report today.

Blessings on your day, and I'll give you an update tomorrow.

Pax!

Brant and Regina

Day 16 – Grayson’s Condition

Dear family and friends

Today was a good day.

That roller coaster keeps on going – up and down and up again. After a lot of sleep last night and today, Grayson appeared to recognize an old favorite stuffed animal. We are not yet sure if he was able to see it as we are not sure if his eyes are able to focus, or weather just the mention of his name was able to evoke a memory. However he smiled at the mention of his name. That smile means a lot to hungry parents. Maybe, just maybe, there is some healing?

Grayson's tracheostomy and feeding tube placement went without a hitch this afternoon. Those irritants are now removed, and tonight he is sedated. Perhaps Regina can get some well deserved sleep!

I know that I have said that this is a long road that we are on. The length of that road is starting to sink in. For your friendship, your support and your faith we are eternally grateful. We have said before that Grayson is in God's hands. We are comforted by that belief, and we know that your love and support is with us as we move forward.

Pax!

Brant and Regina