Mrs. PotterIx speaks....

"So let it be written, so let it be done."

On my visit with Melissa today, she told me to relay this message.  

"I am not very social right now.  I need my rest.  I am very tired.  I am not feeling like myself."

"I only want to see Family members.  I am tired."

Melissa is struggling with her impediments at this time.  She needs the energy to focus on her therapy and healing.  There will be time for AWL to visit, but not right now.  I opened the doors for people to come for a visit, but it is too much for her to process.  WE have to respect her wishes.  I felt the same way when I was recovering from Open Heart Surgery.  People stare at you like you are a ghost--shadowy visage of your former self.  The next 2 weeks are crucial in her path to mobility and recovery.  She has come so far on her journey, but there is more to travel.

Sorry.  I will ask later how she feels about visits.  I watched her struggle today cognitively trying to find numbers and letters on a sheet of paper trying to literally connect the dots.  It was a challenge mentally, she finished, but not without pauses and apprehension.  You can tell from her facial expressions she is confused why this simple exercise is so much mental work.  

Please respect her wishes.  Thank you.

*swallow test with barium on Thursday--a HUGE event in the process of eating and drinking.

**Pray/Positive thoughts about the vocal volume; it works hand in hand with swallowing and eating, they are very related.

***DO NOT whistle backstage when Yul Brynner is in a show, he was REALLY superstitious; but of course he has passed.  Whistling was a way the Sailors (stagehands of the old days) signaled changes in scenery which might ruin the show or cause harm to the actors

10 Weeks and 2 days....

"New Room, New View...."

Melissa has been moved to room 7 Bed A Floor 4, Wing 4A.  Her old room was for someone who need the vent etc. but now she has been Decannulated, fancy term for no tracheostomy.  BE GONE nasty tube, but necessary tube in the process.  Her incision site on the base of the neck is healing quickly, you hardly notice.  BTW she is snoring now, which is a good noise to hear.  I miss waking up at night to tell her to roll over.

It is amazing how the body heals quickly for some things.  The Brain is a real process though, that is going to be very progressive on its own terms.  So keep spinning those gears because we are in for a long Stage or not, who knows but the Patrone of this race (her brain).

Speaking of healing, Cairo had a very gnarly procedure last Thursday.  Her Recovery is amazing, waiting for lab results.  I was SO sad AWL weekend for Our little friend.  I have and will not tell Melissa until I know she is ready. But Cairo is secretly doing things she is not supposed to do.  She seems to have her energy back, Spring in her step.

Melissa can talk but if you visit her you need to make her speak up.  A whisper is not good enough.  It is all about breath control and learning to push that air out.  So make sure you ask her to speak out, no whispers.  Walking is getting there and she says her arms are strong.  She told me she is not herself yet.  Understandable. 

*pray/believe for leg strength and mobility/walking

**always pray/believe for no pressure inside the brain

***pray/believe she will pass her swallow test this week so she can have liquids & soft foods

Helen Hayes Week One....

"you're such a Boy Scout...."

Melissa has been at the Helen Hayes TBIR for one week.  She has made many considerable advances.  These Care Givers mean business and they strive for progression-it is aggressive but not like a Drill Instructor at a Marine Boot Camp.  It is more like your Coach, Teacher or co-workers who support your efforts because they know you are capable of meeting goals.  "That was good but next time I know you can do better if you try this...."

1.  WE already know that Melissa can walk with assistance for long stretches at a time.  Her leg strength will build with her confidence and inner stability.  She knows she needs to work on posture and looking up, not at the floor.  Looking down is a defense mechanism for safety, which she will overcome.  Posture will come with more use of "the core" that has been on vacation while laying in bed.

2.  Her Trach has been downgraded to the size just before no trach, the site is covered to heal.  The Trach  is "plugged" with the red plug, so she now breathes through her nose and mouth.  Melissa will now need to learn how to strengthen her lungs.  She swallows small pieces of crushed ice after it melts in her mouth.  These daily tests are for the next big swallow test to see if you can take on a liquid diet and soft food.  This might happen at the end of the week or beginning of the next week.

3.  She is learning how to use her vocal cords again with air being pushed over them.  We AWL take this for granted, but she is learning to take deep breaths to push air out so we can hear what she is saying.  She is doing well, but needs to really focus on this aspect because her Care Team needs to hear what she is saying.

4.  She is getting good occupational training on simple things like clothing yourself to how to get in and out of a chair and to stand at a table.  She is good at pulling off her socks and the pulse oximeter off her finger. (good way to get the attention of the Care Team if you are in need; I taught her that one)  She also asked me to take the seat belt off while in the chair so she could get out and in to bed.  I said "NO, you can hurt yourself and I could get hurt and then thrown out of the hospital".  She said in her soft spoken voice, "you're such a Boy Scout."  That was funny.  Yes I follow the rules and besides that they have a camera and someone watches the rooms AWL day long.

I expect to meet with the Case Manager tomorrow and get their assessment of "joys and concerns".  Melissa is not one for long visits, she rests much, which is to be expected, her brain and body are still healing.   Plus I want her to use that energy in her therapy sessions.  By the end of the day, which is about 3:30 for her, she is caput!  Zzzzzzzzzzzz.... 

Stay tuned, I think next week will be telling.... 

*I am very pleased with HH TRIB, thank you Pam for mentioning them.

**pray for strong breathing, stability physically and mentally and begin eating REAL food and not the ensure they administer.  I always tell the nurses to sneak in a cup of black coffee to wake her up (always gets a laugh, like "what are you doing, smoking crack!?!")

***mention little Cairo in your prays/thoughts as she is having a surgical procedure Thursday, poor pup, she is a tough girl and has not had a great year either.  Although she still eats like a horse and plays like a puppy.  And she is really giving Nina a lesson at Spring Lake.  Cairo is the Alpha at 308 Pitney, now that Ben Buddy Ben is off on his new journey with Alex in heaven or maybe some nice piano bar in the here after singing songs.

720 inches....

The Red Zone...

I saw Melissa walk 20 yards total today that’s 60 feet to those who think in feet and inches. It was with some assistance and she needs to work on standing tall and not looking at her feet but she walked and that made me proud of her. I also watched her Pedal the cycling machine for 15 Minutes. So I am very encouraged by the progress that I see in her physical attributes. I also watched her occupational therapy today where she did many arm exercises and agility things to distinguish rights from lefts  ups from downs. Still she persists in taking off the “pulse ox”. What is it with a band aid and sensor on your finger with a small diameter cord—give it a rest, please!!!  Ha ha.... Today was a good day and no Melissa you cannot have a glass of water, got to pass the swallow test.

Tomorrow I am taking the day off to go hang with Cairo and Nina in Spring Lake.  I miss Cairo and I am sure she is missing me in her own standoffish way.  Got to love her she does not waver.  And Nina will be ecstatic with her high pitched w[h]ine—it hurts our ears and may shatter a few wine goblets in the cupboard.

Now, you who want should visit Melissa.  Helen Hayes Hospital TBIR 4th FL Wing 4A.  Don’t stay long and it is best after 3pm.  Please don’t disturb her PT schedule from morning to early afternoon.  2 people at a time, no flowers or food.  If you touch her use gloves please.  She may be indifferent to your presence, but it is time to ease her back into her world of friends.  I will be there most days from 11 to 5 or 6.  Sometimes it is nice to have a break to breathe though, if we can coordinate that is awesome.

Here is to continued success in the following weeks.... (raise your glass of a beverage of your choice)

*pray for swallow test to be a success & brain function to right itself in good time

**had a Dream last night Melissa was at home and speaking/walking, I didn’t even notice her trach and feeding tube were gone-I was very happy in my dream.... I believe in this dream

I want to go home....

I know, I know....

So the Care Team at Helen Hayes is “kindly” aggressive in Melissa’s rehab program.  She is busy 4 times a day with some type of rehab coach.  I will get a complete report Monday or Tuesday from her Care Manager.  Going home now is not an option.  She has to be mobile and swallow, end of story.  No time for ”pity parties” or dis pare or you will miss the train to recovery and reintegration.

So I tell Melissa everyday when she asks when she is going home, I say you have to get with the program here and try at your pace to get “rolling”.  She needs to focus on mobility which leads to home.  I will continue to reinforce that with a positive spin.  There is no time for favoritism, codling or giving in, this is not summer camp—this begins a new life.

I know she can do this and I tell her everyday I see her, you are strong you can overcome.  

*pray for the fog to lift from her brain and her eyes 
**add a HUGE dose of patience to override frustration, this is not going to switch tracks from the local to the express; it could

#smallsteps #marathon #breathe #patience #confidence

First Full Day of TBIR....

Is that Jack Benny or Cairo....

Okay first full day in the Acute TBIR (traumatic brain injury rehab) was quite interesting.  Melissa had blue lips and a blue tongue.  At first I thought she had put something in her mouth, NOT.  She was tested by the Speech Rehab person with a swallow test.  It is an ice cube in the mouth I was told with blue color to see where the water was going.  Attempt 1 was a fail, but they have to start to see what is needed to get her to a swallow.  They have a plan set forth in that area.  The Care Team already stepped her trach to two levels away from, no trach needed.  They will be aggressive with the step down.  It is time for that hardware/plastic to come out.

Physical Therapy was there twice and they were impressed with her ability to get to a seated position on the edge of the bed.  The balance issue is not good when standing up with some assist; foot/stance placement needs work.  She was able to get in a wheel chair to rest, plus adjust her position by herself.  The PT Team was encouraged by her somewhat strength and will begin 1 hour of therapy tomorrow, split into 2 sessions at first.  They asked me many questions about our living spaces and access, plus Melissa’s favorite recreation things to do; #1 travel & #2 her friends.

Occupational therapy was there before visiting hours so AWL I know is tomorrow she has a session with them for an hour. They work on dressing yourself, maneuvering around the house and cognitive abilities.  They work on any reading and writing deficiencies.

So put this woman to work and get her on her feet and mobile.  No time to waste Melissa, it is “throw down” time as we say in racing.  The moment you challenge your opponents to try and overtake you or you try to “break” them.

#smallsteps #focus #rest #repair #recover #REHAB

*pray for a clear mind and focus for Melissa when she is working with her Care Teams.

**pray that her Team is rested and ready to challenge our sister & friend 

***corny but true and words of inspiration from my Scout Master: “the last four letters of the word American are I C A N, I can!” Let this be Melissa’s inner voice

****pray that I can stay awake driving home on the bee-U-tee-Full Palisade Parkway—yikes,

A Room with a view....

That look on Cairo’s Face....

Okay.  That went well.  Melissa is now in her next stage; the Queen Stage.  She needs to be ready for this challenge.  Her goals have been expressed and the Care Team has goals to accomplish also.  We have new system a new Team who care.

I hope Melissa in her next Stage of recovery let’s go and enables the natural flow of regaining her footing, like a newly born fawn she will struggle with weak legs.  In the end the spirit will empower those limbs to secure her footing and balance.  She will gain the freedom of mobility.  Her legs are strong and her will is even stronger.  Only positive thoughts and a healthy dose of support from us AWL will send her on the way.  The doctor today confirmed that she has vision challenges; I thought so.  But he said she is going to do well in the program.

Maybe the new Melissa will discover she does not want to be what she was or remember us fully; we don’t know.  All will be revealed in the next days, weeks, months and maybe years. The brain is a very complicated mechanism and research can only predict what others have experienced in their rebirth.  Each story I hear or read has different outcomes, focus and healing process.  It is an individual journey with few similarities, but we can learn from those who came before about their discoveries.

As Yoda would say, “in your choice wise may you be”

*“I must be willing to give up what I am in order to become what I will be.”
**This was a HUGE day for Melissa, but she will get what she needs—she is asleep💤💤💤

Cue the Deer....

***self to note, 3 slices of pizza lactose intolerant don’t eat

Stage 3: Lakewood NJ to Haverstraw NY 164KM

We interrupt the regularly scheduled program....

Some of you already know through modern communication formats and maybe even smoke signals; Melissa is moving tomorrow from the LTACH in Lakewood NJ to Acute Brain Trauma Rehab in Haverstraw NY; Helen Hayes Hospital & Rehabilitation Center.  Finally OUR insurance could agree on a “deal”.  I am sure Monte Hall is the CEO of Empire BC BS and Jay is the CFO; Carol Merrill is still in front of curtain Number 3 posing and I am sure underpaid.

I talked to Melissa much about what was happening and what will be expected of her mentally and physically.  She agreed that she is ready to gain her freedom and independence with every step she takes.  She is nervous and I am sure, still confused on the events of her injury through recovery, not to mention the timeline.  Melissa truly does not know the number of days in care of others.  Today also was a HUGE day as she did a big walk with the walker, then was out for 2 1/2 hours resting—which is good; the body is responding, repairing and recovering. She wants me to have a bed in her room—she wrote me a note today.  She also misses her “girls”; Cairo and Nina.  That was conveyed to me in a note today also.

I am looking forward to a new place to view, maybe see some elevation and the Hudson River.   Melissa will get a breathe of fresh air finally, she deserves it!

*pray for supernatural strength to meet the challenge of her program set forth by her therapists
Also we need to focus on getting the fear of breathing bound up and eliminate the tracheotomy—pass her swallow tests so she can take on real food.
FINALLY, no “stinking thinking” in her inner voice.  The mind can play tricks on you if you let it.  Silence the “inner Chimp”.  Positive, faith thoughts.

**a Landscape Architect/Designer needs a new landscape to survey in order to envision AWL the possible design choices 

***the Melissa I know is tough as nails; WATCH OUT!!!

“Where have you “bean”....

I know, I know....

Sorry been busy with insurance calls and working with Social Workers at the LTACH; in short it has been a very crazy week of fighting for Melissa’s Benefits.  I am VERY #disappointed in my Union’s carrier—Empire Blue Cross Blue Shield; #evilempire.  I am not a Jedi Knight.  I don’t have Yoda supporting me with “the force”.  It’s more like the Farce and reality of our health care in this country—a broken system of greed. (Cue Mr. Potter in Bedford Falls bank).
Insurance is not built on sound ground, a fearful choice of future.

Melissa is doing well. She is very antsy and wants to get out and home.  I get it.  But we have one more stop on our tour, Brain Trauma Acute Rehabilitation.  I will know soon where she will transfer for Stage 3 of the Epic ride she is on.  So stay tuned.  At this point I will open the visitation for AWL.  But I would like to keep the visits to 2 people at a time and not more than 20 minutes.  As she grows in strength and awareness, her toleration for energy spent will increase.  She may not remember if you visited from one day to the next, so don’t be surprised.  Melissa lives in the moment. She needs to get mobile to get her sense of freedom back.  She has strong legs and a strong will to overcome her circumstance.  Stuck in a bed is like a prison.  She can break those chains and be free.

*pray for supernatural intervention in the world of insurance policy

**the exotic appeal of the Lakewood NJ area was way over 2 weeks ago. A Scenic Designer needs new scenery

***a Landscape Architect/Designer needs a new landscape

Short & Sweet....

Short & Sweet....

Melissa had a good 2 hour stint Sunday with her trach plug and she was able to speak to us.  She is weak and I am sure there is irritation in her throat but she did very well.  AND as always when there is a big effort, the next day is a rest day.  That is fine, let the body and brain heal.

Things for you prayer warriors to focus on, you positive thinkers.

-Strong Lungs

-More movement with assistance out of bed.  Even if it is baby steps.  A Lazarus moment would be awesome and miraculous.

-Good sound peaceful sleeping at night.

-Heal that brain, reconnect the circuits in time, no rush whatever the body/brain needs.

-Pray for her Care Team, so that they are rested and using all their available knowledge and resources to get M “rolling”.

You AWL have been awesome continue your activity in support of this wonderful person.  I know you can and will.

*#focus #eyeontheprize #encouragement

**pray for water heater No.1, the dilithium crystals are shot

M’s Garden

Gray skies are gonna clear up....

Hmmmmm....

Today I took Cairo to see Melissa after I visited a playground site in Staten Island.  M was doing the construction management on 32R “the Swamp”.  I would have to say that after visiting both the site and Melissa, well there is much work to do.  Today was a bad day after a very bad night; in short she pulled her trach out and they had to fix that.  Not good.  She did absolutely nothing with the Speech Therapist today even though she came by twice.  AND she has an aide posted in her room 24 hours to make sure she doesn’t mess things up again to try to escape.  Sorry for the less than stellar news, but it is the truth.  Things can change tomorrow as this collaboration grows.  So we have that to look forward to.

One good piece of news, they felt like she is making enough progress and there is talk about moving her the “physical therapy boot camp”.  So there are 3 facilities that will reach out to me.  If Melissa doesn’t do the “two-step” for the next couple of days, then I think she will be good to move to the next level.

I won’t lie to you, this is very frustrating.  Try to communicate with someone who cannot talk, writes in another language and is confused half the time.  Oh but am I talking about myself again.  HAH, Melissa and I have a real special connection.  Mostly smoke signals and hand signals.  But it works.  I might be team captain, but she is the star player on the “I L”.

Can you figure out what she is writing.  I can see below her name and mine.

Who’s Boddlery?  HAH

Anyway, this is a real cliff-hanger for the home team.  Stay tuned.  Same Bat Station, Same Bat Channel.

*Gray skies are gonna clear up!  Put on a happy face.  Brush off the clouds and cheer up....

**Signed up for the NJ Gran Fondo Sept. 8th in place of our trip to Tuscany.  Melissa will be on my mind and in my heart.