Wednesday October 31

Happy Halloween,
Days like today mark the time of the journey.
Donna is well.  She works hard and shows steady progress.  New developments this week include her no longer needing to wear a splint on her right hand at night.  This thrills her as she wore it with an understanding of the help it was providing for her but never really liked it.  It is another item from early days to disappear (this one from early on at TIRR).  She doesn't have to wear it any more because her right hand movement has reached an activity threshold that no longer requires it.

Her leg remains fine and her walking on the cast (with help) improves.  Great to see.  She is now over a week with the cast and it only stays 4 weeks total so time flies in positive ways.  She had some special angels that painted her toes just prior to the surgery and with an open toe on the cast she looks great :-)

Not a lot more to say other than the dog days of therapy continue and her therapy expands to more independence.  Starting today, she needs to seek out the nurse for her medicine and ask for the specifics by name.  She doesn't take much medicine anymore but that gives you a flavor of the independence theme.  One such activity is a new group she started work with this week that goes out on trips into the community and handles things themselves.  This week they went to NASA for a behind the scenes look with an astronaut.  She told me that she explained to him she was an engineer and that she wanted to know if they have good opportunities for chemical engineers in the space program.  He told her yes and I still haven't been able to figure out if she is planning a second career or had someone else in mind.

I continue to meet people of great challenge.  I became aware of one case that was too close to our story this week.  Amazing people who I admire deeply and who in conversation we can lift each other up.  I wish I could do more for them but that time will come.  All these stories refresh our awareness of our blessings and Donna and I so look forward to Thanksgiving, a day that we always appreciate but one in which we will have more to thank for this year than ever before.

With the pace of activity slower, this blog will move to Sundays only starting this Sunday.  Thanks to all for your interest in Donna

Regards
Bob

Sunday October 28

Donna is good.  Her surgically enhanced right leg is doing well.  The pains of the first day after the surgery have steadily dissipated and she keeps walking with assistance on it.  The cast is heavy and will almost surely result in some stronger leg muscles when it finally is removed.  As Donna works through the revised walking mechanics of a foot that actually gets to 90 degrees, we talk about how it will all feel different again is a few short weeks when the cast comes off.  More challenge but progress to a good solution.

Donna's focus issue right now is what we have been calling Ataxia.  Ataxia is an uncontrolled muscle contraction and Donna has been experiencing something like this in her hands.  It makes things like picking up a glass of water and drinking it smoothly very difficult.  Her Doctor in Galveston has taken a close look at her and believes there is a reasonable chance that this isn't Ataxia at all but may be an adverse reaction to some of her medication.  Being a medication minimalist (which I like) he has removed one of the most logical culprits from her rota.  As some of you may remember from a month or so back,  Donna had a pretty delicate balance going with her medication and the last changes resulted in almost a week of lost therapy due to extreme drowsiness.  They stopped the medicine Friday and all good on the drowsy side so far.  We are watching those shakes closely but limited change so far.  We've become a big fan of straws.  For Donna,  they act a bit like a moonpool (only the drillers out there will understand)  absorbing all the movement.  We pray the solution is this simple, we'll know more over the coming weeks.

Well we have begged for increased therapy intensity and our prayers have been answered plus more.  Changes to Donna's schedule have given her more time in the more intense therapies, and exercises that she needs to do multiple times a day add more.  Our outings at doctors appointments over the last 2 weeks have negated some of that intensity time but it will now come in its full glory.  If that wasn't enough, her physical therapist now has her stand in a standing frame ( a device that stands her upright on her weight and holds her there) in at least one of her group sessions a day.  These sessions were some of her less intense physical time, but that all changes now.  This is what we want (Donna agrees) so despite the daily challenge and fatigue we smile.  Donna's day includes 8 hours of therapy a day and Breakfast, lunch and dinner.  When it all wraps up at 6pm she really has had a full day.

On a lighter note, it was awesome today to see Donna in church with her glasses on singing along as she followed the songs.  All I could think of was that this was a sight we could only pray for before.  Church services also had me jumping today.  Many people have asked me "when you bring Donna to the bathroom, which one do you use?"  My standard answer has been the mens room, as guys seem to be less traumatized by seeing Donna wheeled in than ladies tend to be with me walking in with her.  Well today at church I had the rare opportunity (out of need) to go to both the mens and ladies room twice over the course of the time we were there.  Quite the experience but it is amazing how little I seem to be phased by it all and Donna is so wonderfully flexible, she just rolls with the punches.  I just thought that humorous image of us going back and forth would give you all a chuckle.  it did for us.

We have had so many acts of kindness, warm sharing of prayers and uplifting signs of support that I woefully doubt I am capable of responding to them in even the most minor way they justify.  I fear that people may feel they don't make a difference but nothing could be farther from the truth.  I do pledge that when we get some minor semblance of normal life and I get off the road and reduce my sleep locations, I will do my best to let you know how much it is all appreciated.  Thank you

We keep going...
Bob

Wednesday October 24

Donna's surgery went very well on Tuesday am.  The doctor did a great job and it is awesome to see Donna's ankle at an easy 90 degrees in the cast.  It also fills us with hope.  Donna just prior to the surgery asked her surgeon whether doing this surgery would allow her to hike and garden with confidence.  He said,  "He was confident it would" to which Donna said "ok let's do it".  After all we have been through, it was very difficult on all of us to have her asleep under sedation and I can tell you there was no more beautiful sight than seeing those green eyes open afterward and she asking how it went.   After a woosy day,  today she is aware and generally pain free.  With her cast walking shoe on, she was up on the leg today and reacquainting herself to the full leg mechanics of walking with an ankle in a good position.  A few new aches and pains (things are heavy and the movements are now new) but no question that this is what progress looks like.  Also surely the weight of the cast will build a few leg muscles. Some people will come to Galveston and cut it off in approximately 2.5 weeks to measure her for a special custom ankle brace.  Then they will refit the cast with hinges for the last week and a half while the brace is made.  Her surgeon says she need only wear the new brace till she walks more than sits.  Then no more brace at all.  I like the way this guy thinks.

We also got good news on Monday regarding Donna's eyesight.  Despite still having some double vision, the doctors noticed material improvement in her eye muscles over the last 6 weeks.  The amazing brain (especially in Donna's case) recognizes the double images and is filtering out the extra image in her right eye such that she rarely needs her eye patch.  This explains a lot as we kept wondering why she didn't need it more.  They keep telling us it may become more of a problem as the images collide (improvement) as she may not as easily be able to filter out the image any more.  The eye patch ( and the pirate jokes) may return for an encore performance. Ahoy matey

After a few questions I received regarding liquids, I realize I neglected to share that Donna finally got her full release to thin liquids about a week and a half ago.  It's nice. And closes a whole chapter of issues regarding swallow and retraining muscles.  It was a big achievement that I can't believe I neglected to mention.  We celebrated by traveling to a nearby Starbucks and having a couple of frozen coffee's and a chat.  Sweet, literally and figuratively.

So here in Galveston they check weight once a week, primarily to ensure that a patient isn't flying off the scale in one direction or the other.  So today I expected our good eating Donna (who has been enjoying dessert) armed with a new heavy cast to see a bounce up.  Well they told me that she was down several pounds.  I said that had to be false and after a reweigh....she was reading down still.  She was quick to tell me it was all the hard work but personally I'm not buying it.  Despite the flaw suspicions, we celebrated all the good news tonight with a special dessert I picked up from a nearby restaurant.   At least till next weeks measurement.  Fatigue still rules the days for a girl who works hard and then crashes.  She deserves the treat.

Thanks for all the support
Bob

Sunday October 21

Well it's been 4 full months and this is the 100th post to this blog.  Wow....  Donna is great.  She has gotten the hang of this weekend at home thing and fully enjoys it.  Her schedule was a bit loaded this weekend and lately rest is her big issue, so we may need to find her a bit more rest time.  I guess it is hard to be so loved:-)

We have asked for a more rigorous therapy schedule and it has arrived.  Almost every day after dinner now she is very tired and her support team tells me that it is a rare day that she does head straight to bed as I leave her in the evening.  Well for all of that effort she is seeing results.  Her strength is growing, her balance is improving and her right arm is improving materially.  She gave us two beautiful sights the last few days.  One was on Friday when she lifted her right arm to almost shoulder height and held it there (a few weeks ago she may have been able to lift it a few inches) and the second was Saturday when she locked and unlocked her chair brake with only her right hand.  I'm not sure you can understand the significance of this last one,  to do it she had to get her hand there, grasp the brake handle with adequate strength and then hold that grip while exerting adequate shoulder/arm strength.  It was huge and is a large indication of her potential to regain her prior form.  We have waited a long time for this.

This week will start with major therapy disruptions as we have two final doctor appointments Monday followed by her leg surgery on Tuesday am,  then it will be back to regular therapy work for a while.  I think she is ready for the surgery and are hopeful it will remove a big obstacle to a normal walk.

So let me see if i can make all of you parents chuckle.  The last 2 weeks we have made church services by just a few minutes despite rising hours before.  Its just a laundry list of things to do, Donna's stretch exercises, picking her clothes, shower, outfit has an issue move to outfit #2, breakfast, medicine, outfit #3, 10 minutes for me to get ready, load everybody....   Brings back memories of days long gone by.  Like those past days it is all busy but fun but we still have plans to improve the process.  We'll see how it goes.

In all the discussion we have with Donna now, I'm not sure she is really able to fully comprehend the journey we have all been on.  That's right "all" because I learn as I talk to people that so many of you have gone on it with us.  We feel the love.  Some of the conversations are amazing and so many of you face material challenges also.  I only hope we can be there for you as you have for us.

We plow on, we feel the prayers (thank you), and we remain very hopeful.

Regards
Bob

  

Wednesday October 17

Just a quick update here.
After running through the Doctors appointments of the last week and weighing multiple opinions, it is clear now that Donna will have surgery on her right leg to facilitate a normal walk.  The surgery (a short procedure with more pre and post activity than surgery) is set for Tuesday am.  Her surgeon really impressed us and has a great reputation.   The doctor has done this procedure over a thousand times so we feel very good.  I know there are questions about what this is all about so let me explain.  Donna's Achilles tendon is too tight to allow her to bend it to at least 90 degrees and beyond which is really desired for a normal walk.  This is not the direct result of the accident, it is the result of limited motion for a period.  The surgery involves some cuts in her tendon that will allow it to stretch and lengthen.  It will be casted in the stretched position and 4 weeks later the cast will come off.  The beautiful thing is the tendon heals itself and the other good news is that Donna will be able to walk on it with the cast the very next day so she can fully continue her therapy.

As a result of the feedback from her doctors, Donna is up and walking more aggressively (with assistance) in her therapy sessions already.  It is hard with her leg as it is but she is so determined and willing.  She listens to her therapists guidance and she has endeared them all to her (no surprise right).  It is making it all a harder day for Donna but it allows her to justify those desserts that she so enjoys.  The doctors appointments has caused us to miss a bit of therapy and that interruption will continue Monday and Tuesday of next week but should end there for now.

So lets talk about food because you can't really talk about Donna and avoid that subject.  She is a full fledged lefty eater now.  It started really ugly several weeks back.  A lot of work, not a lot of consumption and a lot of spillage. It truly is amazing that it has become a very neat and precise process with almost no spillage.  Just goes to show how motivated she is to get the food in her mouth and what a great learner she is.  Despite the good Lefty news, work on her right arm continues and is helping. She still wants to be a righty.  Slow but definite improvement is good to see.

Keep the prayers going for her please.  It was really special to hear her tell people in Galveston just how much she enjoyed going home last weekend finally and we so look forward to keeping it going.

Thanks to all,
Bob

Sunday October 14

There are just moments when you know you are getting closer to the end of the journey.  One of them was Saturday night as we were sitting in the our living room watching the LSU game and had nowhere to rush off too.  Gosh, we miss our home and how sweet it felt.  Looking at Donna sitting in her regular soft chair, it was possible for a minute to believe that all of this has just been a dream.

The truth is though we still have excitement. Friday as we were arriving from Galveston into Houston for Donna's Doctor appointment my car overheated as we pulled into the Doctor's parking garage.  Truth is I have been thinking about the potential for car trouble considering the usage, miles and the vintage of the Dodge Durango I have been essentially living in these past months (2004 with 142,000 miles).  Considering that I needed to drive Donna back to Galveston that evening, I knew we had a challenge.  After the appointment we hurried to a nearby Firestone where John met us and graciously gave up his car for the journey back.  All has been rectified.  It was good to know that we had a long list of people we could have called.  The idea of being stranded on the side of the road with Donna didn't look too appealing.

Not much to say yet about Donna's doctor appointment as we will see the second opinion on Monday.  More to say after the subsequent discussion.  We do remain optimistic.  One thing I can share though is that the doctor said she needs to get up on those legs and work aggressively now.  He even put it in writing to her therapist.  The easy days are over but we should see much progress.  Yeah!

Despite all of the anticipation and forethought of finally getting the weekend at home, it seems there was just no way to prepare for the joy of waking up in the morning and just seeing Donna there.  Sometimes you just don’t know what you are going to miss the most, and that was it.  Celebrating at our parish with our church community was great too.  Donna seemed to really enjoy it.  All day Sunday she was content just to sit and visit in the living room from her favorite chair.  To hear her talk about it, she had no idea how much she was going to enjoy it either.  Barring the unforeseen, weekends at home are now the standard and we couldn’t be happier.  John and I reminisced with Donna about how at the beginning we could not imagine this day.  I think Donna finds her sleeping time all just a bit hard to fully comprehend.  

This week is all about finalizing the medical plans for her leg and seeing if the therapy in Galveston gets us there.  

All good though.  We smile on.

Bob

Wednesday October 10

Not only is the PEG gone, Donna's amazing body has already healed the penetration.  Wow has God made an amazing thing, the body.  It took us a while on Monday to get it done, we were reacquainted to the process and pace of hospitals.  It was not a memory we wished to relive but all for a very good reason and a good result.  The doctor told us he needed to use a camera to verify the type of PEG installation inside her stomach prior to removal and Donna, most appropriately, took him to task on why they don't already know based on the files.   Poor resident.  He never had a chance.  She was right but we got past it and all went well.  Turned out to be a positive as we got a detailed look at her stomach condition.

The therapy team in Galveston has ratcheted up work with Donna's arm.  She has a long way to go but the potential is great and the people and means are there.  It exhausts Donna, fighting to use that right arm when a perfectly good left arm is sitting right there and is off limits.  She may actually be headed to restrained left arm therapy sessions where there will be no temptation to use the left.  Her commitment, focus and work ethic are no surprise if you know her.

Friday of this week and Monday of next we head to two doctor appointments associated with sorting out her right leg.  These are two doctor opinions on the same issue and we'll be discussing multiple options.  One is surgery and it will be one of a few tough decisions we will have to make.  I'm not too worried about making a good decision as we now have Donna to ask good questions and join in the decision process.  We already know the decisions will be about risk/reward and uncertainty.  These are subjects we understand very well from our jobs and we will hopefully be able to get good info from the doctors to make the right decision.  The good/bad news is that the staff in Galveston have increased her therapy time but these doctors appointments will negate that increase due to our time away.  A short reprieve for Donna as Physical therapy will probably increase in intensity afterward.

Tuesday was a tough day for me as it was the first day since the accident I didn't see Donna (her mother visited instead).  With the passing of a friend at our church yesterday, my heart went out to her husband.  The combined effect of his loss and me not seeing Donna, made it a hard day.  I sure feel lucky that I get to see her today.  All days together are treasured.  We would like to share prayers with our friend John.  Please send a few his way please.

So we go home this weekend for the first time.  We have grand plans of napping in our own bed and getting reacquainted with a place Donna has always loved.  It is hard to not feel blessed.

Regards
Bob

Sunday October 7

During this journey, rough times have often been followed by blessings.  This week has been no exception. A rough day Thursday led to a joyful Friday.  First we got word that the much anticipated removal of Donna's PEG stomach tube would occur on Monday am, and then not much later learned that efforts to secure us the overnight pass necessary to bring Donna home was worked out.  Wow how these events had us thrilled.

First the PEG, installed back in the ICU, this tube has been a lasting symbol of the stressful ICU days and in the last few months has been a constant aggravation to Donna.   For many weeks we have constantly talked about how it required her eating well, drinking well (swallow) and taking medication by mouth before removal could be considered.  Even then, wait time is needed to ensure these will all be accomplished.  Removal is a huge sign of success and relief for Donna.  Come Monday am it will be done and the last of the ICU remnants will be gone.

Next the overnight visit, a huge success to be able to bring Donna home over a Saturday night.  It makes the difference between her being able to come home or not.  She hasn't been home since the accident and it will allow us to attend mass at our own parish.  This gives us something to really look forward to.  Many thanks to the group of people who so understood the impact and fought for it for Donna.  We can't thank you enough for your help.

Donna continues to improve neurologically.  Her awareness and cognitive skills are getting downright solid.  Sometimes she fools people as the speech therapists have been working on her swallow and thin liquids and her speech continues to be a bit slurred.  The slurs lull people into wondering if the sharpness is there.  It is.  With much knocked out on the swallow and PEG side, attention will turn now to actual speech clarity.  Physically she needs more time and intensity in her therapy.   We explore the limits of the facility and will soon know if she can get what she needs.  We hope so because there is much to like here in Galveston.

I had a brief chat with a staff member in Galveston who we have been enormously impressed with.  I shared how impressed Donna and I were with his patience, hard work and sincere care for the patients.  I asked how long he had been affiliated with the facility and he indicated over 25 years.  The next evening he and I had a short chat as I was leaving and he told me that he had only worked there for 14 years.  His earliest involvement was as a patient with a head injury worse than Donna's.  Like her, he had been in a coma for 6 weeks.  I was stunned and at the same time filled with hope.  Donna and I both so respect him and whenever we see him now, are just filled with inspiration and the tangible evidence that she can be just fine someday.  Wow...

I know most of you haven't seen Donna in a while.  She has blessed the release of this photo.  Hope it warms your hearts.

Bob

Wednesday October 3

Well its October and hard to believe how time flies in our journey with our girl.  Donna continues to get better slowly.  Her brain improvements continue to outpace her physical improvements.  This week hasn’t yet yielded more physical therapy time and intensity.  We continue to explore what is possible.  Our future decisions will be based on some of these outcomes. 

The brain improvements are most noticeable in her conversation and awareness.  In our evening time, we talk about all the things we used to discuss pre-injury.  It seems to help us both as she gets more engaged with the management of our lives and her own issues and I’m just thrilled to have her perspective and involvement.  It makes me realize how much I didn’t like making family decisions or considering options without her and it is such a joy to have those alone days behind us.  Also in her conversations she has been pretty “unfiltered” since the accident.  In other words she tells it like it is.   At times it has been a bit awkward, as she wasn’t shy about saying she didn’t like something or somebody directly in front of them.  For a while I thought we were going to have to put her back to work as a drilling engineer!  This has all pretty much disappeared and the more diplomatic, kind Donna has resurfaced.  She is as sweet as ever.  I guess we won’t be having access to all that good drilling department food.

Another reappearing component of her personality is her social skills.  At first she was a bit reserved and more conscious of her limitations.  Well that is gone and the old Donna is back.  I walked into a group session with her this past week where I wasn’t able to stay with her but before I walked out the door I watched her greet half the people by name and the other half she proceeded to quiz what their names were.  She wanted to know.  Now she wheels around the campus greeting the patients and staff by name.  Sometimes her short-term memory fails her a bit but she is a bit like the politician who has an assistant nearby so she can ask for the name reminders.  I’m that assistant. 

Another area of growth for Donna is appetite.  For those who know Donna there is no surprise here.  For a good while, the swallow issues really tapered her appetite and it was a concern as weight is closely watched in patients like Donna.  Well the last three weeks with less physical activity and a significantly improved appetite has seen her weight rise each week.  It is noticeable in her face and demeanor which are both looking great.  As her physical activity takes off, this new and expanded appetite will be important to keep her weight neutral. 

So here in Galveston she is past the evaluation phase and well into the “lets get it done" phase,  the next weeks will be busy but hopefully fruitful.  There seems to be little doubt that the next stop from here will be home (combined with outpatient therapy).  The big question everyone wants to know is when.  It’s in Donna’s and God’s hands.  My best estimate is that it could be as soon as later this month and could be as late as Thanksgiving.  Who knows, maybe even a bit later.  One of the issues we continue to work is the ability to bring her home for an overnight visit on the weekend.  It remains an unresolved, uphill battle but we do what we can.   I think it would help her so much and would let us go to our own church on Sunday am.  For now we just have to wait and be patient….  Yuk…..

Currently, I work in the morning and travel to Galveston every day during the week and spend dinner and a few evening hours with her, then travel back to Houston.  On Friday nights I stay in Galveston and pick her up in the am and bring her to the Med Center apartment getting her back to Galveston around 8 pm and spend the night again in Galveston.  Sunday is a day in Galveston where we do things in the town; church, lunch, dinner shopping etc…  We long for that journey that takes us home, me as much as Donna.  I’ve spent so little time there also.  The good news is that we know it is coming and we know that when we get there it will be a positive milestone like so many other steps we have experienced. 

Over the next 10 days we have 4 doctor appointments that will take us away from Galveston and hopefully frame for us the next significant steps in the journey.  We move in a good direction and we thank God.  Donna told me yesterday that she and another patient had been talking and they had decided that they weren’t unlucky but that they were actually “blessed”.  It was a joy to hear because, like us, if she can feel the blessing in the midst of her challenge, we’re doing ok.

Good Night

Bob