Tuesday July 31

Today we were just like the family that expected company for dinner, we got all ready, all systems were go and then the company cancelled at the last minute.  All indications were that Donna was moving to TIRR today but after 5 pm we finally got the word that nope, not today.  With luck hopefully tomorrow, as the 12 days since it was recommended by our current hospital, continue.  Donna has improved over this time even with small amounts of therapy so it is all a blessing.  Its all rest before the push.

Donna had great moments of clarity today.  Some of the highlights involved her identifying me just by the sound of my voice, it was the first time I heard the word “Bob” come out of her mouth (sweet).  She also identified her mother as her mother in law and despite the fact that she quickly corrected the comment; it will serve as a great source of abuse for some time for them both J.  When Donna said she hurt, we asked where and she said, “hurts everywhere”.  I guess that is what so much bed time does for you.  This evening we had a good chat and she asked me “what is good?.  I relished the question as I ripped off a list of about 20 things.  She was a little taken back but I think was impressed.  I meant it all.
She still has moments of lost focus and these are easy to pick out because she fills them with math.  Still a good trend.

For those who worry about me, I took a break this evening for a few hours and relinquished the time with Donna to attend a program at church. It was great and stocked up on a lot of quality supportive hugs.  Many thanks to the St Maximilian Youth group who, like so many, pray for all of us.  I think we underestimate how hard it is to not be here and stay on task, sometimes that is the higher calling.  We are anxious for Sarah and Nate coming here late tomorrow.  I told Donna about them coming and she was all smiles.

We’ll prepare for that dinner party again tomorrow but realize we have no control over whether the guests will actually show.  We’ll rest and have dinner anyway and count our many blessings.  Thanks to all.

Bob

Monday July 30

Well there are good days and then there are days that just fill you full of hope.  Today was one of those fill you full of hope kind of days.   All of those of you who feel like you may be Donna’s number 1 will now have to take a back seat to her new favorite, Katrina the speech therapist.  Katrina got in early and had another banner session with Donna in which Donna smiled at her the whole time and did much of what she asked which involved much non-verbal communication.  We are so pleased with her progress.

Little could prepare me for the afternoon when Donna suddenly became very clear and aware.   The frustrations of her not understanding what is going on has been tough on us both the last two days, it gave way to calm and coherence.   I was able sit and talk with her while she kept confirming that she understood.  I got to reassure her of all the help and support she is getting and that she is doing so well.  Despite all the nods of her following me, I asked if she understood me at the end and she solidified my excitement when she said a single word “Understand”.    I don’t think we are done with the frustration of the pace of progress but it was great to feel she understood.  Her awareness continued throughout the afternoon, it was awesome to have her fully there.  Later as the evening took over she lost that focus but our tanks were fully charged with hope and potential.  It sure felt like we were turning a corner.  We’ll take it a little at a time and hope it can stay steady.  She had one more tidbit for us when at 8 pm she told the nurses “ go to bed” which served as a dismissal to turn out the lights and beat it.

Now I know this is a bit confusing so let me try to explain.  The process of regaining consciousness isn’t a light switch.  It is very common for a person to start to have periods of consciousness between time spans of less.  What we want to see during this stretch are increasing periods of consciousness but it is rarely a straight line, more of a trend.  Several days ago we were overjoyed at very short spurts of awareness.   The last few days we have seen this grow and for a while today it was very clear.  We just look for continued progress and a good trend.   I personally believe some of the therapy she has received in recent days has made a big difference.

We also got the word today that Donna is moving to the Medical Center (TIRR).  All things seem to work out.  We are very blessed.  With the progress she has made here with limited therapy, we are very excited for her to have the chance to drink from the therapy fountain.  This is a  living example of the power of prayer.  Thank God.  Our move could come as soon as tomorrow and we’ll throw the support model out the window and redraft it.  Nothing could make us happier.  I pulled rank tonight and insisted I would spend the night with our girl.  It may be my last night for a while as I won't have that option at TIRR.  She sleeps well at night now but as they work her hard, I'm sure that will continue.

Much work left but days like today are sure easy to swallow.

Thank you all for the many prayers and the undying support.  We have great faith and know Donna is clearly in God’s great hands.

Bob

Sunday July 29

After weeks of trying to make Donna comfortable in so many ways, a caretakers dream happened this morning at 5 am.  Donna woke, got my attention by speaking and I wiped her down with a towel like we have been doing for weeks during one of her sweaty spells.  She looked at me and said, “ Helps so much”.  Suddenly weeks of effort by all were fully validated.  A few minutes later she was comfortable and back to sleep but not me.  I was too happy about our reemerging Donna.

The downside of the road to consciousness is something I have been thinking/worrying about for weeks.  It is the frustration and confusion that has to be associated with trying to understand what is going on and dealing with it.  I think most of us can understand the challenge, waking and not knowing where you are, how you got there and why everything doesn’t work right.  Well later today I saw some of this.  It is bittersweet as it is a step in the growth process but very hard for Donna.  As she is not yet at the point where we can really explain the whole thing to her, the best we can do is comfort her.  My solace is that she is surrounded with love and prayers, we all know she is a tough lady, and I am confident we can work thorough it quickly as she continues to improve, all pretty hard on us (and her) though.

Sundays tend to be slow days and today was no exception.  Donna got a lot of rest which she will need as we start back into the therapy regime tomorrow.  She shows us something cool most days in these sessions so I welcome them very much.   I am also confident that the resolution of our move must happen soon.  As you might imagine, she has charmed most of the staff and they all love doting over her improvements.     It will be a big week with Donna moving, our support model changing and Sarah and Nate making a short trip to Houston on Thursday.  Sarah has been very busy at work and I believe we will have a hard time separating her from her mom for the short time she will be here.  Then she will be off for another few weeks of commitments in Alaska.  I know many will want to see her but I suspect there will be little free time, just a warning for all.

Thanks so much for all the help and support that has flowed from my passing insurance comment a few days ago.  Just another indication of the support for Donna which never ceases to amaze us.

Off to a big week of change.

Bob

Saturday July 28

A quiet day today with Donna.  She continues to improve in small ways and her speech seems to be the showcase item today.  While she still has a good way to go, the priceless moment was when the respiratory tech decided to give her a treatment (she doesn’t like the mask) and the nurse and aide decided to move and adjust her (which involved a roll) at the same time, that she chose to say rather boldly “Tell them to leave me alone”.   All were stunned and the pregnant pause was broken by Donna repeating “ Tell to leave me alone” just in case anyone felt it was a fluke.  All were pretty thrilled to hear her and all worked quickly to comply; a rare moment of unhappiness from our girl who has been so willing to comply with all.  Later this evening she got my attention and grabbed my shoulder and said “up” and proceeded to try and pull herself up to a sitting position.  She didn’t quite get there, but it wasn’t for a lack of trying.  All ways in which she seeks to reveal herself and we find it thrilling.

The therapy staff here takes the weekend off so with a blessing received yesterday, John and I took it into our own hands to get her up on the side of the bed on our own today.  We were pretty fired up to do it and it went pretty well.  We knew we weren’t quite up to the standard of the professionals but it was a great effort and Donna kept her hand into doing well.

I have to say that the engineers feel a bit humbled thinking about how we have been trying to verbally communicate with Donna for a while and never thought to just ask Donna to nod or shake her head.  It took all of a few minutes for the speech therapist to carry on a conversation with her yesterday that way.  Still feel kind of silly.  I bet that speech therapist would have a hard time designing a separation vessel!  Despite being slow to that party we have jumped on that bandwagon and gotten some great answers today. 

Steady as she goes here.

Regards

Bob

Friday July 27

Well it is amazing sometimes how the simplest things can bring a tear to the eyes of grown men. 

I think Donna decided that today was the day she would instill in us great hope.  It came in several ways.  While sitting on the edge of the bed and continuing to improve in her muscle control, she chose to put her hand on John’s shoulder and it sure sounded to me that she said, “I love him”.   But the high point of the day came when a new speech therapist, who Donna clearly liked (she kept smiling at her) stepped her through a session where she asked her to answer questions by just nodding or shaking her head.  When she had answered 5 questions in quick succession by nods and shakes of the head, John and I were awestruck.   We felt she was right there and we were very filled with hope.  The power and potential of therapy was readily apparent for us even though the sessions at this facility are short.  More will be forthcoming.

The funniest part of our day came from a well-intentioned effort on my part in sourcing a fan for Donna to help with her hot spells.  Well I found a great bargain at Walmart and ended up with an 18” fan that has enough power to be on “tool time”  (for those old enough to know what that is).  It is too strong even at the lowest setting such that we have to put it far across the room.  I think the high setting is labeled “hurricane”

No news emerged on our next facility and we now know it will be next week before answers happen. 

We are still riding the thrill of seeing Donna go.  Hooray for a great day.

Bob

Thursday July 26

Well my niece tells me she doesn’t go to sleep till the blog is posted and I told her that is a bad idea as it is usually the last thing we do.  Ab, tonight you go to bed early.

A quiet day with Donna.  The last two days she has shown much more determination and control with her therapy. This leaves us confident that the proper therapy regime is a key for her.  Any of the places we will go next will offer a more rigorous program focused on her needs.  We remain hopeful that we will see good improvements as part of that effort.  At times it seems that her limited speech remains consistent with math (her primary theme) and hard to interpret expressions but once in a while she will let loose with something perfectly in context that tells us, at least for a moment, there was more clarity.  A good example was today when the rehabilitation doctor shook her sternum and said “Hello Donna” in a loud voice and she shocked us all with a return “Hello”.

Donna’s only physical difficulty is periods of hot, sweaty moments.  She is getting a bit of a double doosey here as we were told that her brain healing will create such periods and she is also unable to take the hormones she was taking due to clotting concerns.  These are the moments we try to give the most comfort but it still has to be a drain for her.  Again therapy is a partial solution for this because as she is more stimulated, awake, and moving, we can address some of these issues better medically.  All success roads seem to lead toward therapy.

After a bath and quality hair wash today, she looked like a million bucks.  It had to feel really good too.

Well I know a bit what it must have felt like for the revolutionary army, as they knew they were in proximity of the battle but didn’t know when or how specifically it would actually come.  We expected insurance engagement today, and I think we just passed each other in that battlefield forest.  Unlike the redcoats, this opponent does not do battle on weekends so if we don’t engage tomorrow, we will probably engage on Monday.  Sounds so much more civilized, we’ll see.  I suspect not.

Steady as she goes here.  Prayers, and small steady improvement are all we ask for every day.

Thanks to all

Bob

Wednesday July 25

Our girl is good.  She struggles through the trials and tribulations of another day but always manages to slip in a few new items that make us smile or beam with pride.  Today she took a few choice opportunities to show off her ability to respond to some specific requests; a few when she sat on the side of the bed and a few additional when she was being evaluated by an external therapist.  Today marked the 40^th day of our journey and it is the day that the pulmonologist finally threw in the towel and told Donna that she won, she could have no bandage on her trach as it completes its final healing.  She is a real tribute to commitment as she has been relentless in her removal of anything that touches her neck. 

The biggest battles that go on now involve insurance companies and the location and timing of our next move with Donna.  Once again Donna has made herself too healthy to fit the criteria of this facility and needs to move on.  Several options remain on the table and they all involve a more rigorous therapy regime.  Sorry dear but you will soon long for the easy days of those Steve Wonder music workouts with Bob.

40 days in bed and we are happy to say that her body is in excellent physical condition.  Much effort and vigor has gone into that effort.  We intend to keep it so. We persevere through the challenges of fatigue, Donna’s continuous care and holding people accountable.  I have to say that most every skill I have ever learned has been applied.  You should be happy to know that my patience grows daily, albeit slowly.  I have come to believe our pace of personal improvement (Donna’s and mine), are directly tied.  I apologize to her often of my limitations.

I understand that several have questioned whether the names of our nurses really are Joy, Blessing, Grace and Mercy.  This is true, they are.  Amazingly we have a new nurse tonight, her name is Eden.  I promise I am not making this up.  Clearly God believes we are slow on signs and is making it abundantly clear.  Thank you Lord.

A few extra prayers appreciated as I face the challenges of the insurance obstacles.  We will overcome.

Bob

Tuesday, July 24 by John

While the trach has been out for a few days now, the bandage being used to cover where it used to be was a bit of a struggle today.  It needs to be taped over the healing hole in her neck, and she seems determined to get it off.  The bandage is easier for her to remove, and despite putting the mitt on her hand getting ready to sleep, she managed to use the little access still available to get it off.  Each attempt does at least provide another opportunity to check on the status of its healing (which is coming along normally, by the way), clean it up, and get her a new bandage.  It won't be too long before the bandage can come off.

My mom has not yet moved from the current facility, which provides yet another opportunity for patience from my family.

The past couple days have started to show some very subtle movements in the fingers on her right hand.  It's not all the time, and I must repeat that it's still very subtle, but even this small movement brings a little relief as it's been over five weeks now since I've seen any perceptible movement of this arm.  Perhaps as the nerves letting her know her right arm is in pain heal, the connections will hopefully bring a little good news with them to compensate.

My dad doesn't really talk too much about how he's doing, though I know many of you are also concerned about him.  He's noticeably seemed to be walking around easier and at least reports to us that he doesn't really have much pain moving around anymore.  We're keeping an eye on him and I assure you we're not forgetting to take care of him when we think he needs it.

I realize that many people following the blog check it late at night or early in the morning, so I hope my later than normal posting hasn't caused anyone to miss out on the days news.

John

Monday July 23

Our simple jaunt to the medical center for the MRI turned into a half day event when after doing very little for the doctor during a pre-MRI examination, Donna decided she was ready to move and be active during the MRI.  As most of you probably know, this doesn't work.  After several attempts and considerable time, they finally decided that in order to get the MRI they would have to give her a mild sedative.  All went well after that.  Personally I think she was trying to buy time out on the town and away from the hospital.  Results will take some time. Many thanks to my good friend Michelle who has patiently kept me company on these trips to the medical center. Her company really does steady me. The most popular question we get is "is she still in a coma?".  I know all these small movements make that confusing.  I spoke on this issue with the neurologist this morning and his answer was that below a coma score of 8 she is in a deep coma, above that she is still in coma.  This is good to hear as it preserves the hope in our minds that a material wake up could result in step change improvement.  We'll see.   She hovers between 8-9.  My brother John left today, my parents are on site and remain in our support and Sarah and Nate are about a week away from visiting.  The change is good for us.  Everyone has been so helpful.  John and Sarah remain deeply involved and it wears on us all but we take strength from each other and are still serving as a solid support team for Donna. Words from Donna continue sporadically, still fragmented and mostly math but we occasionally hear a different word.  Her favorite and clearest is "ouch".  It comes across loud and clear. I was talking with John this morning and I said to him wouldn't it be great if God could give us a sign that all is well and in his hands.  Then we had a good chuckle because we could imagine a time in the future when asked he would tell us "well, I sent you four nurses named Blessing, Joy, Mercy and Grace.  What more did you expect?". Those are some of our nurses. I guess we should just get it. I hold her close and she smells like Donna.  Sweet,   Bob

Sunday July 22

Donna had an uncomfortable day.  Slight fever lingers and her heart rate and actions seem to indicate she feels a bit more pain.  Pain is a tricky thing for her as it tells us that she feels more and we want that awareness but we also want to relieve it.  The relief has to come in a marginal way as we don't want to knock her out.   Discomfort is an interesting thing also.  She has started to make minor adjustments in the bed herself.  Simple things, a bent leg, a pull on her pillow, an adjustment of her gown.  These tell us that she feels more and has the growing wherewith all to try and influence it.  Also, a hard thing to watch but a sign of slow progress.   

Our travels take us back on the road tomorrow and off for her MRI.  Hopefully she will enjoy the stimulation.  Either way we hope so get some important information for her doctors.

I spent a little bit of time at a church function to get myself away from the hospital (I know the hundreds of mothers I have inherited approve).   I came away with a couple of learnings.  There are so many great people rooting for us, that I really do get a bit of energy from a good hug, and that there are so many other people facing important challenges in their lives who may not have all of your attention, may not write a blog but are doing an awesome job rising to the occasion.   They are impressive people.  

Finally, some of Donna's whispers have become more intelligible.  Those who know her well will not be surprised that a fair bit of what we hear is math.  That's right math and not simple stuff either.  Algebraic equations and powers.  That's our girl alright.  I suspect she has occupied her mind solving a big problem, the solution of which she will lay on us when she is good and ready.

Thanks for supporting her.  She looks good, her brain healing is in Gods hands.

Bob

Saturday July 21

Donna was consumed with getting her trach out and then suddenly this morning it was gone (the doctor removed it).  Her immediate response was a huge deep breath and a massive sigh.  She followed that with about 3 more and the most relieved look.  Rarely do you get to see someone so relieved so clearly.  You can add all of her support team to the relieved list as we were about worn out resisting her.  After a great peaceful nap, we noticed a much happier girl.

So as these little improvements happen for Donna we wonder where the coma stops and the brain healing becomes the controlling factor.  This is a murky area and by many measures her awareness at the current level indicates the coma may have ceased but the brain healing continues.  As she moves towards more therapy, hopefully this will be much clearer.  Personally we don’t dwell on it much, we just want more. We are very happy with her progress but we just don’t want to give the idea that she is ready to waltz home.  Her left side is very active but her right side improves more slowly.  Patience…

Not surprisingly she has charmed the nursing staff.  Several stop by when not working with us to just check on her.  These relationships are great and they care about her very much.  I know none of you are surprised.

We have plans to travel to the medical center Monday for an MRI and timing on her next move is still unclear but hopefully early next week.  This may shake up our support model but it is all about her. 

A good day

Bob