Wednesday, March 30, 2011

Upward Trend, No Cath, Voluntary Moves

A lot has happened over the past few weeks.  Rachael is showing that she recognizes various people and is regularly expressing emotion.  In a discussion with Valarie, one of Rachael's most excellent nurses, it was learned that after we leave, Rachael often cries.  When she cries, she displays the sorrow on her face, tears flow and she often opens her mouth as if to cry aloud but hardly any sound comes out. After a bit of time has passed, she stops crying and can even return to a more joyful state or she may simply lay quiet.

At times, even when we are with her, she is disconsolate.  Any attempt we make to appease are futile.  Then, after a bit of time, all is ok.  Often we are able to abate her grinding with a large rubber ring placed inside her mouth.  Any stimulus to the inside of her mouth tends to stop the grinding.  This was not the case one month ago.  We found that if we are consistent with the oral stimulation, she eventually will stop.  As mentioned before, there are times when her frustration is due to how she is laying.  When repositioned, she ceases and expresses contentment.  It's nuts.

So I guess the best way to explain the upward trend Rachael has been offering is to take it by the various physical indicators:

Voice
She is using it much now.  She is not able to make intelligible words; however, several folks, Nancy included, have heard an unmistakable 'Yes' from her at times.  This is very new so we will be watching for it.  She has gone from no sound at all to making sounds that look as though she is exercising both her tongue and vocal chords.  Her voice is gaining strength each day.  She is swallowing on command as well.  Her bolus swallowing is not yet working so she is not able to swallow food as she is not at all conscious enough to chew yet.  Her laugh is getting louder.  What was just a big smile with a rush of air a few weeks ago is now chortles, giggles and an occasional louder quake of laughter.  When we sing or some of her favorite music is playing, she makes a unique repetitive sound that we assume is her attempt to sing.  All in all, her voice is getting stronger but before therapy can work on that, we need to have better swallowing from her.

Eyes
You might remember that Rachael contracts to her right side.  This includes the muscles of her eye.  In the early stages they pulled so far to the right that you barely could see the iris. She is now frequently bringing her eyes to 'mid-line' which shows muscle control and a change of muscle 'tone'.  As it is now, she is 'toning' to the right.  It is great to see her regularly looking straight ahead.  As far as blindness goes, we do not have any indication that she sees.  She does react by squinting when we wheel her toward direct sunlight.  Yet, though she may be able to tell from very bright to normal light, we detect no indication that she is actually seeing.

Arm, Legs and Hands
The right contraction or toning is head to toe.  Her right leg prefers to be bent up, her right arm is at home bent up to her chest.  Her head is pitched so far to the right that her chin will rest on her shoulder.  To give you an idea, and go ahead and try this, lay down, bend your right leg up and contract the muscles, do the same with your right arm up to about your breast bone, contracting your muscles tight then tilt your head so that your chin is on your shoulder.  Lift your shoulder up, straight up to your chin.  Now hold that position for about 3 hours.  I can only do it for a few minutes.  She is like that most of her day.  If she were to remain like this without attention, she would suffer contractures Nancy has saved Rachael from contractures, which is when the muscles shorten in response to the contractions and are frozen in position.  Nearly every day she has been working Rachael's head, arms, legs and feet to keep the muscles active.  The sovereignty of our Lord rules.  You may not know this but Nancy finished Massage Therapy School about a year ago.  Following that she took lessons in Active Isolated Stretching from Aaron Mattes, a world renown sports medicine expert that has developed stretching techniques that are showing incredible promise in healing a variety of ills related to body stress and inflammatory issues.  Utilizing the techniques God had her learn last year, Nancy has helped to keep Rachael's range of motion.  Aaron is a born again believer and begins his sessions with that fact so that no one is in question of where he stands.  AIS has helped greatly in PT and OT results and is responsible for her ability to respond as she has.  Shane, a student of Aaron's has visited us several times and brought Rachael to sweet levels of calm by stretching her with these methods.  I have seen her spasm free from his work.  If you have a loved one suffering from TBI and is contracting, find out about these techniques.  The result once contracture has set in is to cut ligaments.  Not a good option.  We are expecting splints this week for her arm and leg.  Her feet might need to be treated with botox to relax the muscles so that they do not turn in.  There are times, very often, where her right ankle is turned so far left that it is at a right angle!   Can you imagine how that would hurt!  Still, Nancy has been able to stretch Rachael's feet to keep this from being permanent so far.  Nancy is showing me these techniques so I am able to now assist in her absence.   We also learned a method of very lightly massaging specific areas of her neck, arms and legs to cause relaxing.  Using this technique, we are able to get her head centered.

Foley Cathater
The dreaded but necessary Foley!  Well it was removed earlier this week.  I had nothing to do with this one!  We are trying to retrain her bladder.  There has been some success but if too much time goes by, she is 'straight cathed' and voids via a tube.  Once finished, it is removed.  This is better than having the Foley in her all the time.  Much less discomfort for her, less hassle for everyone.  Yet, getting the tube inserted is an incredibly difficult task.  Rachael is a very strong girl.  We continue to pray that she now will be off the catheter for good.

Storming
Remember that storming I was talking about?  We have not seen it in about 2 weeks!

Heart, BP and Vitals
Rachael has been on two drugs that help to keep her heart rate down and blood pressure normal.  We have noticed that her heart rate has been dropping to the 40's at times so the orders were changed and now she gets the 'lopresser' once a day instead of two times.  It looks like her brain is being able to better regulate her heart.  Her temp has been normal for several weeks now.  Remember from January through half of March she has had what we call a fever.  Folks call it a neuro temp.  It seems to be gone.

Voluntary Response
Thought I would save the best for last.  Today, she was able to repeatedly swallow on command and raise her arm on command for the therapist.  This is big.  We are pray that she continues.

Congnition
This is the wildest part.  She laughs at jokes, image or picture jokes.  She has several CNA's that she loves and as soon as they show she starts with the big smile.  Sometimes things are said that are funny but given in an off hand way not at all addressed to her and she laughs.  She is understanding what is being said with a much higher frequency than before.  Just like the laughs, she knows often when we depart and she cries if we are leaving.  We have taken to quietly sneaking out with no audible clews (keys, bags etc.) to lead her to know we are going.  As it stands, we believe that her reactions to pain, fear, joy  and sorrow are all exagerrated.  This is in accordance with higher levels of cognition.  We are anxious to get the official word that she is a Ranchos 4!  Keep praying.

So slowly we are on an upward trend.  Rachael is not at all at a plateau.  Her big broad smile, her laughs and just her lovely way have endeared patients and staff at Heartland.  It is not uncommon at all for someone to take time out just to hang with her for a while or to console her when she is down.

Our plan is to get her home soon.  There is much to do before then to prepare the house for her.  I will be posting more on that later.  Nancy has some incredible insights the Lord has offered her in her journal and we will be getting that up soon.

Nancy and I had a date night courtesey of a family whose child Nancy taught.  They set us up with Christ Tomlin tickets.  We needed to be there that night.  It was great.

Prayer Requests

  1. For Ray Dick of Calvary Chapel Bradenton as he adjusts to the loss of his wife Elaine

  2. For Rachael to begin to have full bladder control

  3. For the grinding to stop.

  4. For quick setup at home for Rachael's return

  5. Continued healing and most of all...

  6. Praise to the author of our faith, our creator, our savior, our father and our friend Jesus Christ!

Wednesday, March 23, 2011

Agitation, Laughter and Progress

Sorry about the delay in posts.  One or both of us have been spending most evenings down at Heartland with Rachael and by the time we get home, eat (thanks to those who have blessed us with meals) and get basic tasks done, it is after 10:00.

We have noticed very similar symptoms from her regarding both the storms and general discomfort.  They are profuse sweating, grinding of her teeth, strong contractions and sometimes crying.  The storms usually are accompanied by a low grade fever and very high heart rate (120+).  The discomfort is with a heart rate in the low 100's, no fever.  On any given day, we might have several hours of these symptoms, usually the discomfort oriented ones followed by a period of relaxing then a mood change to smiling or laughter.  It is all so random.  For instance, yesterday she laughed and smiled nearly all day.  Today, most of the day she was in a discomfort type state, agitated and not too responsive.  Later this evening she calmed down, laughed some and began to relax.  Sometimes changing her position will alleviate the symptoms, sometimes not.  There are occasions where I can divert her attention by softly speaking to her and sort of guiding her to relax.  Nancy has had success with massages.  We had been spending the late evenings with her to see if the distress was related to eating or bowels.  This has not proven to be the case as we can not identify a correlation between eating and symptoms.  Another possibility is her feet.  They are contracted but are still able to be flexed.  I have found that moving her foot or slightly suspending her right foot by placing a pillow in the crook of her knee helps.  It is just difficult and frustrating to find a resolve.  When she is not in this agitated state she is joyful or very quiet.

We have found she laughs at certain things that are said that she use to laugh at before.  Jokes made around her regarding things she is very familiar with will get her laughing, sometimes even when she is frustrated or agitated.

Hanna is a gem.  She is learning quick and jumping in to help when we are moving Rachael or performing other tasks that require both Nancy and I.  Even when we are not working to serve Rachael, Hanna is talking to her.  Today she played her Fluteaphone for her.

Keep Nancy in prayer for strength and discernment of when she has had enough for the day.  She will go until she hits the wall.  Rachael has a terrible problem of grinding her teeth.  It is horribly loud and persists for hours.  When we are with her and she is agitated, we have to hear it.  It is difficult.  Please pray for both of us to have patience.

Nancy bought some teething rings today for Rachael to bite on when 'bruxing' or grinding her teeth.  The funny thing is that when we put in betwixt her teeth, she stops.  So it falls out.  Then she kicks in again.

The staff is overwhelmingly grand at Heartland.  Praise God for CNA's.  The work they do is a blessing to the families and the patients.  Several have found a special place in our hearts.

Progress:

  • Rachael pointed  today.  Not voluntarily but she has the ability to localize those muscles.  We are hoping that she will be able to point soon.

  • She is raising her arm on command but only at certain times in the day.  We need to have her do it at any given time to count as repeatable voluntary.  Her response to commands such as 'raise your arm' is related to her state of calm or agitation.

  • She is responding by laughing at jokes, words, phrases and sounds .  I have not researched this aspect of coma but think only cognition would seem to promote a laughing response to such stimulus.  Daniel got her going the other night when making a sound that use to make her guffaw.  Nancy has sang several kid songs or silly songs to her that have always made her laugh and still do.  She laughs at a lot of things I say that are meant to be funny.  Picture jokes, jokes that offer a verbal image seem to make her laugh the most.  Please pardon my candor but mentions in the guttural terms of passing gas make her laugh too!  What a great thing that she has laughter!

  • We played Casting Crowns live today for her and she began to make verbal sounds.  We thought she might be trying to sing.  It was a fun time.


We are not sure when she will be leaving Heartland.  There are several things that are left to be done.  Setting up the house for her arrival is a big one.

We again want to thank you all for your words of encouragement and most importantly your  prayers.  This list continues to grow.  If you are reading this and have someone in your family that is a patient of TBI, we would love to add you to our prayer list and be in contact with you.

God bless and Praise our Lord for the grace of the gift of  faith!  Eph 2:8

Monday, March 21, 2011

Elaine Dick Wrote These Words To Us

Elaine Dick wrote these words to us on Febrary 22.


 elaine says:



To Nancy and Burt, Daniel and Rachael,
We are praying without ceasing. I have some understanding with which Rachael is going through, i was in her state, not electrocuted, yet under the care that she is getting for nine months and then another 6 months, and two years of rehab, miracle after miracle as we/they watched God move. I had no awareness much time through this, yet there was one thing, i loved and actually remember, i remember my mom and dad and Ray in the later years of things happening again and being in that state, , i loved to hear their whisper in my ear. Ray would sing softly some words. Jesus love you, i love you. Some things were very over stimulating even in my recovery time and some things i had no reaction too, yet i do remember moments. Anyways, this is not about me, this is about what is happening in the spirit realm and the battle is being won, one inch at a time. God is glorious. Oh Lord have mercy, my heart goes out to Nancy and you Burt, because i know it is exhausting, i seen the weariness and the tiredness in my parents when they took care of me day and night and now I even see it in my husband these days, still taking good care of me. There was/is always a peace and a joy, even in their frustration at time. Yet it is God’s love that gets us through, it is His power and His strength and His mercy. Oh Lord we love you. Today, please again, as you have, arise within Nancy and Burt, give them all they need to take care of their child, Your child, Lord take care of them emotionally and spiritually and physically, may you be their guide, their eyes, their wisdom, their power and strength and may you give them a joy unspeakable, and may we see you move once again today, Father God, we will praise you and not stop praying, Continue that good work, oh God, we stand on your promises. They are yes and amen. God bless you all. God only knows your pain, no one else does. No one knows this journey that God has you all on. We may have had similar experiences, yet the answer is still the same HOPE Of GLORY for today and forevermore, Amen.

Love and prayers,
Elaine

Friday, March 18, 2011

A Long Week

With the ER Scare behind us, Rachael was blessed with several good days.  The storming of the ER night was greeted the next day with smiles and laughter.  The 16th was a busy day as Nancy, with the great help from the staff at Heartland, tried to find a cause for the emergency the night before.  In the end it was decided that it was a false alarm in reaction to the symptoms associated with a fistula.  These visual symptoms were brought on by other means.  Nancy and others at Heartland have verified that all is well.

Rachael continues to display 3 main manifestations of emotions: laughter, tears and frustration.  We have learned that simply turning her to a different position can alleviate the frustration and tears at times.  Upon other occasions, nothing seems to help.  Her feeding formula has changed as Nancy noticed that shortly after feedings, she became frustrated.  We met with the dietitian yesterday during a care meeting to discuss the options. Imodium and a new food formula were offered to help ease Rachael's stomach.  I stayed late tonight to see if the new formula would have a negative impact but she remained pretty much unchanged after the feeding.

Yesterday, prior to our Care meeting, a Physical Therapist from a rehab equipment company demonstrated a type of light neuro massage that helped Rachael to relax.  With a brain injury, contraction problems occur when an avalanche of signals coming from the brain tell the cells of the muscle to contract.  No signals are getting back to the brain to cause it to send another signal to relax.  With the technique that was demonstrated, we noticed immediate relaxation of the contracted right side.  Rachael leans strongly to the right, her arm and leg contract on that side.  It is not a permanent fix.  We learned tonight; as with so many elements of this season, it is not consistent.  Thursday was a big day for focus on rehab.  We hope to get a splint on her leg to help with lessening the impact of the contractions.  The Physical Therapist and others in the room commended Nancy on keeping Rachael flexed, stretching her out and working the muscles.  Rachael laughed and smiled all day.  Nancy had a blast.

Nancy.  She is amazing.  I have had several staff members tell me that my wife is just that, amazing.   She is an inspiration to these folks.  Many of them are an inspiration to her.  One nurse, Sunilda is a blessing to both Nancy and I.  She is a very thoughtful and Godly woman and the Lord has used her in our lives.

Today Nancy was visited by some moms from her class at Calvary Chapel School.  They were a huge blessing to Nancy on a not so good day with Rachael.  Rachael smiled briefly today and remained frustrated or distressed throughout the day and into the night.  It is hard to see her like that.  Nancy was looking at a long hard day when these moms showed up and literally brought her to tears when she described how they jumped in to help and touched her heart with the thoughtful gifts and encouraging words.  Later, we opened an envelope and we both were astonished at what they left.  We simply welled up with praises for the school, the moms and our Lord.  Thank you so very much for your generosity and thoughtful gifts.  Calvary Chapel School is not a School, it is a family!  I just called and Rachael has been having a very good nights sleep.

Nancy wanted me to share this:

The other day this elderly woman in a wheel chair was sitting alone in the family room at Heartland.  The room is a bit rustic by design, giving off a late afternoon sunset orange ambiance blended with a sepia tone that comes from lots of wood and tinted light.  There are round tables, a 'bar', popcorn machine, a couch, a flat screen TV and two internet computers.   It is a clinical attempt at eclecticism.  It is comfortable in contrast to the fluorescent bright, sound bouncing patient rooms. Oh yes, there is also coffee.It is not the best coffee available in town, but it is the only coffee available at Heartland, with the exception of course of Rachael's room.  We have setup a small coffee maker.  Rachael responds to the grinder and often smiles when she hears it grinding the anticipatory cacophony of many beans pulverized.  Music it is, to the right ears.   So on St. Patrick's day, there was the kind and lonely lady in her wheel chair and she softly asked for a cup of coffee.  A family member of another resident informed her that the coffee was old and cold.  I felt sorry for my sister in need of a barrister.  Finally I told her that I was going back to make a brew and would love to bring her a good cup of Joe.  She delighted in this and said she would either be in the family room or in the dining room eating.
Now caffeine is a drug and it stimulates  the body due to the fact that the body is doing what it can to get it out of our system.  It is a poison to our temple and the temple is kicking it out.  Our heart rate goes up, the BP  notches ever higher, we move faster, all to get rid of caffeine.  Proudly thinking, "Wow, what a great way to show Jesus to this woman."  I bounded off to perform this great deed of giving an old woman fresh ground poison to lift her spirits.  Of course, in the name of our Lord.
Well I made the coffee and briskly walked down the hall knowing that I was doing a great deed for this kindly aged comrade of caffeine.  She was not in the family room so I swept into the wheel chair packed dining room like Gene Kelly doing anything and set the coffee on her table.  In character I said "One cup of coffee for you ma'am, will there be anything else...."
"STOP!" shouted an alert aide as she lunged for the coffee over the table; "She can not have coffee!"
My sweet treasure who stirred thoughts of all that was good from the Greatest Generation abruptly had her coffee taken right out of her feeble fingers.  Then in a harsh tone with an affect reserved, I would think, for her most ill behaved great grandchild but directed to the aide  "Never mind her she does not know what she is talking about!"  Those that could turn their heads, did.  For a moment I felt as though I was Moses and these were my people, yearning for freedom from this decaf tyranny. The aide was Nurse Rached and I was McMurphy ready to rally the patients and take on the oppressors.  Then I noticed the sudden change in the old woman's countenance.  It scared me.  I lost my affection towards her and gathered my senses.
In a sweetly stern tone I was informed that this woman often tries to get people to give her coffee.  It is not at all good for her.  I then learned an important fact about nursing and rehab facilities.  There are manipulators waiting for unsuspecting do-gooders to give them candy, coffee and other contraband.   Many folks in these facilities are on very restricted diets.  Always, ALWAYS check with someone prior to giving them anything.   Even a glass of water.

Sobering it is that a time may come in our lives when we are not allowed to have a cup of coffee.  Be thankful for chewing, swallowing and being able to sip a cup of coffee or tea.  Be thankful for all things.

Wednesday, March 16, 2011

ER Scare

Late yesterday afternoon it was discovered that Rachael might have a problem with a fistula from her digestive tract.  Taking no chances, she was transported to the SMH ER and after a cat scan was found to be ok.  We are not sure of what caused the symptoms to appear and are seeking what God was showing us in this.  The event was a bit traumatic for Rachael.  She did well.  Upon returning to Heartland, we did get a wonderful word from a sister in Christ.  One of those type of things that are shared straight from God's word, penetrating and aptly spoken.  Nancy Rachael and myself ended the evening with a few moments of joy with Rachael offering audible laughter and a huge smile in response to some things we were saying.  Her smiles and laughs were timely, all most as if she knew what we were saying.  Who knows but God and Rachael?  Regardless, it was a sweet end to a rough night.

Thursday, March 10, 2011

A Lazy Rainy Day

Rachael was very relaxed today.  Normally her right arm is contracting and her right leg is bent but today she was very relaxed.  She was grinding her teeth but not with the ferocity of the 'storms' we have mentioned in earlier posts.  It is hard for her to relax her muscles on the right side.  Her brain wants to contract the muscles so it is quite an effort to relax them.  The PT folks, Physical Therapry, have been straightening her out by forcing her legs and arms down to relax.  She did that for a good portion of the day todayby her self.

She had a visit by her Grandmother Thelma her Aunt Lisa and her little cousins.   We figure with all the work yesterday, she needed to rest and Nancy predicted that today would be a laid back day for her.  With the rain in the morning, it seemed like just another lazy rainy day.  She needed rest and rest  she did.  We did get one smile out of her --  when we played a Lacrae CD!

Please pray for Pastor Ray and Elaine Dick of Refuge Calvary Chapel of Bradenton.  Updates on Elaine's condition are posted at http://www.bradentonchurch.com/elaine-update/.

Wednesday, March 9, 2011

A Picture Is Worth 1K Words

[caption id="attachment_314" align="alignnone" width="640" caption="Rachael after moving her head to the left."][/caption]

Rachael has not been able to move to the left.  Her muscle 'tone' pulls her to the right.  Today, for the first time ON COMMAND Rachael moved her head to the left 3 times while sitting in her chair and twice on the mat in Physical Therapy.  Praise God, keep the prayers coming!  This was a big stitch.  We pray that she will be able to repeat it consistently over the next days.

Monday, March 7, 2011

Rachael's Daily Schedule For Those Visiting

Close friends and family and WOLBI - Rachael loves the visits and it helps to stimulate her which she needs.  Remember to engage her in conversation, tell her about your day, mention something you remember her doing or you doing with her.  Sing to her, read some scripture, etc.  Make a conversation even if she can not respond right now.  She laughs, she smiles she does react some to what is going on.  Make the visit for her.  Talking to us and referring to Rachael in the third person is not good for her.
Please do not ask her:
"What did you say or what are you trying to say?"
Or say to her "Look at me" .  We are not yet sure about vision and she is now making sounds but does not speak yet  Please don't state in front of her what you think she is saying.  Aside from those points, make it a fun visit.  She needs the stimulation,.

Several folks have wondered what is the best time to visit.   Here is Rachael's Daily Schedule:
8:00-9:00 Speech Therapy/Morning routine/Review of previous night etc.
9:00-10:00 Bath, meds, food etc.
10:00-11:00 Physical/Occupational Therapy
11:00-12:00 Rest/Recoup etc.

The remainder of her day is open.  There are some activities that Nancy or I will take her to like exercise etc. but anyone can join in for that.
So Rachael is busy until about 12:00 PM.  If you wish to visit, you will make the most of your time by visiting in the afternoon.
Weekends are free but she is still busy until about 11:00 AM.
If you visit any day after 6:00 PM, you will need to enter via the side entrance nearest Sawyer.  You will need to push the labeled button to gain entry.

Please don't send flowers.  Real flowers can introduce insects into the room and Nancy has allergies.

Trache is out!! Hanna's First Visit!!

Vocabulary Words:
Trache - Tracheotomy - Placing an opening in the throat to permit air flow.   A wonderful spot in our necks that God created to save lives.
Outer Cannular -The main trache tube.  This is the tube placed in the opening.  Once in place, an inner cannular is inserted into the outer cannular.   The outer canular is changed out once each 6 months.  The inner canular is changed out daily.
Stoma- The opening made in the throat for the outer cannular to be placed.

I am not sure of the correct spelling trache but I am going with 'trache'.  It varies on the web.  Regardless of the correct spelling, after this post we won't be worrying about it anymore.  There is so much that has happened over the past few days after Rachael's night at SMH that I will do the best to update you as efficiently as possible as this is a busy day at Heartland.

Following the night at SMH, Rachael took 24 hours to regulate back to her curent norm.  This lasted until Saturday evening. 
 Over the course of her healing, she has had what we call 'storms'.  These storms are characterized by profuse sweating, muscle spasms and grinding of her teeth.  These are very disturbing to watch but most likely are part of the healing of the brain to the extent that God wills.  We are beginning to feel that they are related to comfort.  Occasionally, when we have positioned her in bed or after a bath she seems to calm down.  As with all things so far it is inconsistent.

Our mouths and nasal passages moisten the air we breathe.  When a tracheostomy is performed and in use, the trache bypasses these God designed humidifiers and humidity needs to be supplied by machine, loosley attached to the trache.  When we move Rachael around in a wheel chair, we need to remove the humidifyer that is attached to the trache and cap her trache so that she breathes through her mouth.  Due to the level of recovery, the cap is not permenet as the gag and swallow reflex systems are not fully functional.  Saliva pools if not swallowed and can cause a choking, vomiting or drooling.  Capping is ok for a while if monitored but until Rachael attained a level of concsioness to swallow saliva and keep from 'aspirating' or not letting things enter her windpipe, she needs the trache.
On Saturday afternoon, Nancy took a break and I was by myself at Heartland for the day.  Yes, that last sentence reads like a portent for the manifestation of Murphy's Law.   About  2:00 in the afternoon on Saturday, I was preparing to plug the trache so that we could go for a stroll about the premises.  Part of the process is to remove the humidifyer which has a strap that was mingled in another strap around her neck.  So, I loosened the trache strap that holds the outer cannular in place so as to move the humidifyer up over her head.  Part of daily trache care possibly involves loosening the trache straps to clean the area around the stoma so it is common to move these straps.  Any slight movement of the outer cannular will cause a cough so you want to keep it still. When I loosend the trache strap, the outer cannular moved and Rachael made a terrific cough that popped the trache right out of the stoma!  Yes, she 'popped the trache'.  Nancy and I have had training in placing it back in which is no big deal.  However, neither the nurses nor myself could find a new outer cannular.  The one that popped out had been exposed to the air and clothing and in so doing, bacteria.  Well, there was an aire of nervous perplexity pervading the room as our next step was sans protocol thus leaving us to improvise.  With a few quick moments of  prayer, and discussion we decided to call Dr. Simon, Rachael's wonderfully gifted doctor.  Dr. Simon stated that she was going to remove the trache this week anyway so leave it out.  LEAVE IT OUT!  This is big to us.  For her to be off the trache!  First the vent, then the trache and now normal breathing of room air!  Nancy had been very stressed as she knew that the trache was to be removed this week.  Well, it popped out and moved up the schedule.  Nancy and I had planned to spend at least the first night of the trache removal at Heartland so Saturday night we spent the night with Rachael in the most uncomfortable 'recliners' that without anitomical downward force,  jeteson you from your reclined position , in more a launch than an inlcine.   Good for rising quick to assist.  I coded in Perl ( a most excellent programming language) and Nancy curled up for the night.  It was Saturday night that Rachael began to 'storm' again unrelated to the trache as the trache in is much more uncomfortable.  This lasted until Monday morning.  She is now back to stability.  No more trache!

Hanna's First Visit:

It was not until the trache was removed that we wanted Hanna to see her.  With all the tubes and machines of her early stages of stabilization, it would have been too scary for Hanna.  Now that Rachael was without the trache, the final step in appearance that would be apporpriate for Hanna to see, we felt it was time.  Leaving the decision up to Hanna, we guided her down the hall.  Mildred, one of the housekeepers here and a most thrilling sister in Christ, sort of danced Hanna to the doorway for her to get her first glimpse.  Hanna was upset a bit so we let her return to the waiting room.  Later, Nancy brought Rachael down to the waiting room in her wheelchair and Hanna got to spend a very sweet and emotional time with her sister.  Realize that all of us in the family have been though this on a daily basis but Hanna has not seen Rachael since the night of the accident on January 1.  Within a few minutes, Hanna turned pro!  She was singing with Nancy and began talking to Rachael in a way so touching that I am not skilled enough to describe.  She was amazing.  She related stories to Rachael, 'remember whens' and the like.  She told Rachael about staying over at Reggie and Sara Green's house the other night with her friend Faith and about her crocheting that she has started.  It was non-stop.  Hanna began to push the wheel chair around and has already started to assist in basic duties with cleaning Rachael and looks for other ways to help.  Hanna Hinkle is an amazing young girl.  Only nine years old  and already denying the normal fears of such a time as this and digging in to help.  She is so sweet when talking to her sister. 

Rachael had a day of rehab work where they are working with her swallowing and relaxing her muscles.  The folks here are great.  She attended an exercise time here and laughed through it.  Also, a lady came by with a Shih Tzu and we placed the dog in Rachael's lap.  She felt the dog and busted out a huge smile.

We have much to rejoice in this day.  No trache, Hanna's first visit and it looks like the storms have ceased.  We thank our God our saviour and Lord Jesus Christ for all he has done up to this day and what he will do!  The people that we have met, the Christians that we keep bumping into, the sick and stricken that we get to share with, this is all to the Glory of God and we so appreciate His presence in our lives.  PLEASE continue in prayer.  I often ask God to make this room holy ground and in the name of Jesus Christ, all minions of the enemy be pushed away.

Tuesday, March 1, 2011

First Rehab Today

Rachael's first go at occupational therapy starts today.  Keep in mind that our goal is to get her to respond to repeatable commands by volunatry movements.  That is what we are after.  She is not there yet.  Her level of cognition has not changed.  This is the start.

She does experience a thing called 'storms'.  Evidence of these events are a very high heart rate (140-150) profuse sweating and jerky movements.  These are close to the same symptoms she shows when she is under discomfort.  We have found, thanks to the nurses at Heartland that she prefers to not lay on her right side.  It causes her discomfort.

Last night she had to be taken by ambulance to Sarasota Memorial Hospital as she had a 'plug' in her breathing.  This is mucus that has gotten to be large enough to cause her 'blood oxygen saturation levels AKA- her SAT' to be less than optimal.  Normal for her right now is about 93%-97% blood oxygen saturation.  She dipped to 85% last night.  We have seen this before and handled it via suction of the trache.  Last night was the first night this happened at the new facility without Nancy or I there.  They have there protocols to follow so they had her trasported to SMH.  The protocols for her will be modified today.  The gang at Heartland are kind and caring people.  We are all getting use to each other and Rachael as a patient there.  It is good to know that when in doubt, they will call 911 without hesitation.  We did not get back to Heartland until 11:30 or so.

Hanna will be seeing Rachael for the first time since the accident this week so please keep her in your prayers.  It is scary for her.

Rachael's Rehab schedule is currently Occupational at 11:00 and Physical at 3:00.  If you are visiting, she will be occupied during those times.  I just spoke to Nancy (11:53 am  March 1) and Rachael is comfortable with a regular heartbeat and good SAT.

Thank you for your continued prayers,

Burt and Nancy