Henry Aaron....

Not much to report....

Well I say that but....small gains; back on the trach collar Saturday.  One step towards breathing without assistance, but on her own.  This will be a good week to make some progress.  I will see tomorrow how our buddy is doing.  She had a BIG snooze today so maybe she is storing up energy for the physical therapy this week.  

Today I visited M in the morning (Sleeping) and then went to see a baseball game at the First Energy Park, the Lakewood Blue Claws vs the Greenville Drivers.  It was good to be out in the sun watching baseball.  Melissa and I were looking forward to going together to watch the game.  Thank you Marturano Recreation Company for the tickets.  Great seats, first row right behind home plate, just on the first base side.  I was able to share the other 3 tickets with a young man and his 2 small boys.  They just had to sit next to my sorry butt (there are always buts). 

So tomorrow starts another week with much to do at her own pace, no rush, but....  Melissa we miss you at home.  No pressure, at your tempo, breathe and be reborn.

*The Blue Claws won 4 to 1

**Yes I had a Coca Cola & a hot dog—I know I am a vegetarian but hot dogs are not meat per say—at least prime cuts (no judgement please)

Jackie Robinson Day....

I am tired of being tired....

Melissa still loves my sense of humor, although maybe she is just playing with me.  When I told her “I am tired of being tired”, she smiled.  Communication at this point in time is really tough and at times frustrating.  Hand signals and mouthing words are not easy to interpret or discern.  Although today I was there when the Speech Therapist switched out her “gearing” and I heard her talk, albeit much like she had inhaled helium.  No matter is was the finest melody I have heard in some time.  The therapist asked her who I was and she thought and said,”Mr. Potter.” (Not the banker in “It’s a Wonderful Life” BTW)

M is in and out of confusion when it deals with memory and details.  This is to be expected. She did draw me a map of something or maybe it was a revision for 130K that someone needed to draft.  Her drawing was wonderful, but I had no idea what it represented.  Arrows, lines and circles with annotations; very rough but what does this say or mean.  Her writing is in cursive, and very small.  Cursive; wow, I thought it would be easier to write in standard drafts person AWL CAPS.  It is very noticeable that she has a eye/hand coordination deficit. But that is nothing new to her, she said she wasn’t good at that anyway.  Have you seen her play tennis lately?  Actually she is better than me, but I am better at “Tidily Winks”.(showing my age). AWL these things can be recalibrated, not a problem, but in time and when the brain is ready.  Remember “Hal” in “2001 Space Odyssey” was running the show and right now Melissa’s body is receiving signals from a computer that is rebooting/repairing.  Stay tuned....

She had a good Physical Therapy Session today.  She was learning to sit up erect without assist and marching in place to get those upper quads activated.  She has homework while she is lying in bed to flex her feet and move her arms—activate those muscles who have been on vacation.  AWL in AWL I am very pleased with the determination of the Care Team and Melissa’s willingness to engage.  The people every level of care, the people in the trenches so to speak, don’t get paid enough for what they do to get you healed.  Ready to re-enter our laser paced world.  I am humbled by their dedication and compassion.  

*finally got the tangles out of her hair, she has pigtails now, cute—not fashionable, but cute. 

**She is still planning her escape from Stalag 17

***It is day 42 by the way—I can be cryptic 

No place like home, homes....

I wanna go home....

Dorothy, ET and M wants to only go home.  I get it and I want Melissa home too, but as I explained to her, she has some goals to meet and muscles to prime; not mention to master the breathing thing that we AWL take for granted.  Coming home is the prize at the end of the slow race, it is very doable if she does not despair, which she will every so often.  I did when I was in the hospital recovering from open heart surgery.  The Care Team and Melissa have some "boxes to check" before that happens.  AND after "breathing bootcamp" she still has acute PT to get up on her feet and mobile.

She had a good day today.  I have noticed that about 3 pm she has some memory deficit.  She asked me again about the Wires and tubes she is connected to.  Minimal compared to the ICU unit and her first 2 weeks.  You have to have patience and go through it all again; this is expected.  Her brain is trying to retain new things coupled with recalling old things.  She was very fascinated with my Garmin watch that shows my pulse when I select that function.  I was explaining she has that on her monitor behind her but she wanted my watch on her wrist, I think we are going "steady".  

I did learn the hand signal for bed pan today, that's good to know because everybody poops as we say.  I am slowly learning how to read her lips AND she responds really well to multiple choice answers.  The book I am reading suggested that Yes and No answers do not challenge the person to process and deliver.  Keep it simple but don't talk loud and don't talk like she is 8 years old.  Be ready, it could be frustrating like talking to Cairo and expecting a response.

On the "M" Scale today was a 5 out of 10, no I will say 6 because I learned the bed pan hand signal from her.  Tomorrow I am bringing Cairo to visit, we will see how that goes for the 2 of them.  I am sure Cairo will be happy and then, "where's the treats MOM?"  

The Care Team is great and very engaged; their mission is to get her out of there in time--off the trach tube, speaking.  Her Mother came today with Al for a visit.  Mrs. Ix trimmed M's finger nails--very much needed.  The nurse told me today to bring her brush, she would brush her hair out; she has been wanting to do it AWL day long.  Will do.  One should not look like Medusa at TPL and Contractor meetings, could be intimidating.

AWL in AWL we had a very good day today.  

*continue to pray/believe/positive thoughts for healing, no fevers and breathing normal.  Also strong legs and arms.

**pray/believe/positive thoughts for her Care Team to use their knowledge and training to assist M in her healing.

Day 39....

One step forward one step to the side & back....

ONE STEP FORWARD

For those who are not in the know; yesterday Melissa had a very good morning with the physical therapist.  She was practicing getting up and down out of bed with some assist to a walker.  Then she practiced rotating towards her BIG Comfy Chair to sit and help her and strengthen her lungs.  They asked her to march in place picking up her feet/legs.  She is learning how to use her legs again.  She is like a fawn trying to get up for the first time.  I was so happy for her and we shared a big smile as she sat looking at me.  

She also got very good at pushing the call button for assistance.  At times she forgets what and where the BIG Red button is on the remote.  She had the staff hopping.  I asked her a few questions to pull files from her memory.  Like "what was the address of Adrian Avenue?"  I got the answer an hour later and did not realize it until I asked Mrs. Ix that night when I got home.  Melissa used her fingers to show me 2-0-1-0.  She had forgotten again how many days she was in the hospital, no problem this will all sinking when those circuits are connected.  I read her from a book, but she was tired and wanted to rest.  Probably what happens when you read this report.  Zzzzzzz

ONE STEP TO THE SIDE

In the afternoon yesterday I saw a shift in her body language. She was agitated and restless.  

ONE STEP BACK

The next morning I got a call from the hospital about the change in her condition.  She had a fever and was not breathing well.  She was struggling to fight something and the energy used to get those lungs strong again went to battling an infection.  A chest x-ray was taken to reveal that her right lung was blocked by "goo".  She was breathing with one lung.  By the afternoon she was breathing fully with both lungs.  Another chest image will be taken early Wednesday and the Pulmonologist will "weigh" in on the next step.  The infectious disease doctor said that she had sepsis and that is being treated aggressively.  My Father had sepsis at age 84 and beat that after he had his course of antibiotics.

This will happen no matter how much WE want it.  Melissa, her spirit, her body is in control of the rate at which she recovers.  I choose to focus on what I saw in the morning yesterday.  She made great strides (pardon the pun) from the time I saw her after surgery.  Also when I saw her in EXCRUCIATING pain June 15th.  She has made so much progress and this will take time.

#marathon #smallgains #breathe #faith #patience

*If you are a believer, then pray that Melissa's Care Team is well rested and using their wealth of knowledge and training in her care.  If you have another form of belief ask for the same.

**In addition add--strong lungs, motor skills, vision, comprehension and let her brain heal.

***Thank you AWL for your concern and outpouring of love and devotion.  It is greatly appreciated.  It is time for Cairo and Nina's last walk. 

Week sIX.....

Friday was a good day of rehab “2.0”.  Melissa had a physical therapy session and they got her up on her very weak legs and with assist she moved 24” on her own.  Her legs are strong, her arms need work, especially the right arm.  When I arrived she was in her BIG chair snoozing.

The speech therapist tried to cap her trach and see if she could tolerate it to try and speak.  It was a good attempt the therapist said and will be the focus of their sessions; get her to breathe through that mechanism without the aid of the very  small amount of moist oxygen she gets. The therapist will work on exercising her brain to see what she is processing mentally.  Melissa does not retain much.  Example.  She wanted to know what had happened.  I explained to her Friday and she understood.  Saturday she had no idea what we talked about on Friday.  She asked how many days she has been in the hospital and I told her.  She was counting on her fingers—she comprehended.  Saturday she had no idea how many days in the hospital(s).  Melissa has much work to do and it will take “some” time.  Fasten your seat belts.

Friday in the later point of the afternoon she was trying to get out of bed.  She tried to pull wires off and the I V out.  Pulled her trach collar off twice.  Simply, she went from communicative to restless.  Saturday she continued to be restless and agitated.  Tried to get out of bed and pulled her Vitals cord out of the wall; not knowing she is attached to a Monitor and an I V stand/tree.  Saturday was a struggle, it breaks my heart to see her like this.  It is part of the journey WE are on.

I cannot wait till Monday because for 5 full days she will have speech-physical-breathing therapy.  This will be a very telling 6th week. Then if needed another week. Her next stop after “breathing bootcamp” will be 3 hours of intense therapy every day to get her mobile and communicative.

Don’t be discouraged, keep moving forward in your support.  Pray and think the best possible. 

**taught her how to use the call button—might be dangerous for the Care Team.

Moving on up....

 Moving on up....

Moving on up is our theme for today.  Melissa has progressed to the next level of care.  She was transferred to a LTACH.  For those who do not speak Acronym that means basically breathing bootcamp. The new Care Team will assess her breathing, motor skills and communication skills. She will have a team weening her off the trach collar and breathing on her own through the trach then eventually normally.  This will not happen fast and it certainly may not happen completely when her next step comes in the process, Physical Therapy.  But the hope is that she can leave the LTACH without a trach.  Fingers CX’d.

There will be a team working on some motor skill functions and a team working on speaking when the collar is off.  I am not a lip reader and if my sister Angela were here she would be a great resource.  I am very hopeful for Melissa, if, she realizes that this will be a daily grind as they say in sport.  I know she can do it as determined as she can be at times.

Although this is not Neuro ICU, the Hospital is restricting visitors to a very small list of immediate family.  It is all about germs and possible infection.  Be patient on visiting the patient.  

Continue to pray, visualize, send good vibes or whatever you believe in—focus on these things again.  Inner Brain Pressure normalization—strengthening her lungs to breathe—no fevers—absolutely no infections—regain her muscular strength. #marathon

Today was not about a marginal gain this is a podium placing, but not on the top step yet.  She can raise her arms high for the publicity photo, but a little more work and she gets the top step on the podium with the flowers and trophy.

*LTACH is not latch spelled wrong, but Long Term Acute Care Hospital

**the Pope of Pitney Avenue. Aka/Triple B. Benedict say goodnight where ever you are....

TDF One, Melissa 5....

“First week of TDF complete, 

Fifth week our Our Tour begins”

Can you believe it has been a month?  Well we are starting week five with some very small gains, Gr-8!.  Today Melissa was taken off the ventilator and put on the “trach collar”. She breathes on her own with some moist oxygen flow. She has been on that since 12 noon which is a record right now for her.  Although she may get a bit tired and they will put her back on the vent to assist if need be. Let’s hope she can keep the record going.

She is coughing up gunk from her throat  through the “trach”.  Good thing. She sat in a BIG Comfy lounge chair for about 4 1/2 hours to get those lungs to expand and contract.  BP is good and her oxygen level is 100%. One of the Care Team members said she was laughing at what was on the TV, of course not audibly, but physically.  Good job M!

Still lethargic at times due to the brain pressure.  She has her bright moments and then tired moments. When I came in this morning she was resting with Wimbledon on the TV; sure it was one of the nurses choices not hers.  She does not have the motor skills to do that right now.  She watched the Tour de France Stage after Wimbledon; I made the choice.  We follow that every year; it is one of the things we enjoy together.  I make her cheat sheets of the team jerseys so she knows who is on what team. OR she is only being polite and enjoying it because I do. OR she is hoping that I continue to sharpen my Photoshop skill. Definitely had a good day today and yesterday based on the past few weeks.

After talking to the doctor in charge of the floor today, there are some things WE still need to focus on. 

1.  Bringing that inner brain pressure down to normal levels.  Work that—really focus on that.

2.   White blood cell count was a bit up and needs to be normal.

3.   NO MORE ventilator, she needs to breathe with the collar on and if they are confident she can move to the next step in breathing.

4.   Bring on the motor skills—get those arms and legs stronger and more coordinated.

So inner brain pressure, white blood cell count, breathe with out the ventilator, motor skills.

Alright, there you have it.

* #breathe #patience #faith/positive-thoughts (remember whatever guides you) #marathon (full or half???)

**a French rider is in the maillot jaune now with Bastille Day tomorrow—Vive la France!

Not Happy, probably ANNOYED....

Picture Cairo's expression on M's face....

So let me tell you what it is like from my perspective; yes I know it is not about me, I get it.  But (there are always buts) when I get the face that Cairo displays, in the photo above, on M's face, I know she is not happy, probably REALLY annoyed.  My Grandmother Dobson often displayed that face when she was annoyed and not humored. Yes, you AWL have seen that face if you have know her for some time.  That is what I got both visits today.  I am sure she is, somewhere in that head, fearful and uncertain about what is going on. I think that AWL of us would be in the same state of mind if we were in her shoes.  But I got to believe that beyond this veil of uncertainty and fear there is real HOPE.  She is doing much better on the breathing without much ventilator assist. Her BP is good/stable for now.  And the fever seems to be gone.  So you AWL are doing a Gr-8! job.

Tomorrow decisions will be made and I ask that number one on your list of things to pray about or generate positive energy is:  Ventricle pressure to subside and become normal.  I think this may affect many of her bodily functions and also creating that "look". I did not sleep last night much because I know what is on the menu for Melissa medically. I know that if two or more people agree on one thing it will be defeated.  So let's beat the pressure deep inside her brain and the area of injury to come in line with your prayers and positive thoughts. I have seen actual medical miracles happen in my own family and I know it is possible. I have seen the bright light of healing. I have seen her beautiful smile, however fleeting, you have also friends.

So on your List:  Pressure in the Brain, I am adding, dissolve any blood clots (pretty much part of the routine when you don't move much), NO more Fevers and normal blood pressure values. Basically we need a semi-not totally, which I jokingly referred to many times with my Parents in their last days, a "Lazuras moment".  She is in some sort of "cave" right now....waiting to be called out.

*there were no New Testament Characters harmed in the writing of this blog.  The use of Cairo's photo was granted by her Pupperooni Agency in Annecy FR.  Melissa Ix is a member of ASLA.  #breathe #believe and as always #hydrate

Marginal Gains....

Another day with marginal gains

Hey Sports Fans, not much has changed.  Still battling a fever which was much better today, a “gain”. Still trying to ween off the ventilator.  Today she was on minimal assist from 8 to 3 and then she got tired.  That’s good; huge “gain”.  So today was an emotional win for the team.  #YAAAS

Tomorrow I will get in early to talk to her Care Team.  I want to get any updates of future procedures and thoughts about strategy to conquer the fever and pressure seen in the ventricles.  Another cat-scan this Thursday or Friday.  More information is good thing for me to process and educate me on this unbelievable situation.  

So hang in there; focus prayers and thoughts on fever, breathing and bless her Care Team that they are well rested and making sound decisions.  So y’all have your work cut out for you.  AND believe in a complete healing for Melissa.

*Cairo definitely knows something is wrong.  Pray for her comfort and patience.  She is a good girl, just very concerned.

Day 1 of week 4....

We love to sparkle....

Fourth of July, eh....  I never liked the holiday celebration; when I was a child very afraid of fireworks and hated picnics with bugs.  Scary stuff.  But sparklers seem to be safe???  And just like sparklers they are exciting when they are lit “do their thing”, but fizzle out quickly.

The last 2 days have been like that for Melissa.  She had a great afternoon with her Sister trying to communicate, also calling a couple of good friends on the phone.  Is this the awakening time and steady progress up her recovery ascent.  No.  The body and brain had to much stimulation and it must rest.  Rest/recovery is paramount.  If she does have a very lucid time period/day, we as loved ones need to remember that this may be too much for her to process.  Encourage rest, be at peace and “breathe” both in physical and also the soul.  “Worry for nothing.” There isn’t anything she needs to be bothered with WE have it covered. Now having said that, it is a tough concept for one to embrace who is a “giver”.  This will be her biggest challenge; to let someone take the lead in planning, providing and caring.

So as Melissa continues to rest and battle, these are the things WE need to focus on in our prayers and meditations.  Defeat the fever that is on and off, and any bacteria that might be causing these symptoms.  BREATHE gradually without assistance with the machine.  Let’s pray for weening the machine assist and with positive progression go to none. Have a mental awareness and presence in order to assist her Care Giving Team in their assessments and treatments.  Keep the Doctors and Nurses in your prayers/thoughts so that they make sound decisions grounded in their experience and knowledge.  Finally, get the body motor skills activated so when it is time to get up and walk, use her arms and hands, she can do it with perfection. Focus on these things. ( WOW what a Fran’s Liszt, as I would say to Melissa.  We subscribe/support WQXR)

*people don’t worry about me, I have a new distraction to help me pass time.  The Tour de France started today; I am on it, but Melissa is my main focus.

She is my patrone, wearing the maillot jaune

Surrounded by here favorite things....

Moving to the next phase of Melissa’s journey.  She will be moved very soon to a “LTAC”.  For those who do not speak acronym (like me), that is a Long Term Acute Care Facility.  They will begin the process of weening her off the ventilator and give her mild PT for movement.  When this phase is done, however long it takes (you have 30 days according to our insurance; could be sooner depends on the patient) she will go to a Physical Therapy facility to work on her ability to get around.  I found a few near SPLKNJ, even one where I could ride my mountain bike for visitations, it is in Allaire Park.

Although I did not sleep well last night I am very confident for Melissa’s full recovery with some changes in her life.  She will need much support for not “diving” back into the flow of her old life. As a stroke victim you need to make changes and see life in a different light.  You may seem whole and readily able to handle the demands of life physically and mentally, but there is always a chance something could happen.  I live with this every day, I choose to acknowledge it but not be fearful.  I know, he rides a bike and he is crazy with an artificial valve and aorta stem repair to do such activity.  I was told I could remain active but with limitations in stress on my heart.  I have a personal “governor plate” on my activities.  I want to be around for a long time to torment you AWL. This will be Melissa’s real challenge—letting go and letting God (or whatever your higher power is in your life).

We will need to support her in this effort. You cannot jump back into the ocean if you forgot how to swim with a strong current.

News Flash

She has been moved to a “step down” floor which is actually one floor up and in a newer wing.  So maybe they want her to step up the pace. In any event she FINALLY has a room with a view.  Not bad ehhh....

Get on your bikes and ride....

So, yesterday Melissa peddled a machine called the Motomed Leto 2 Arm/Leg.  It is an E assist or peddle on your own machine.  She did 1.5 miles slowly.  But then again she takes her time to enjoy the ride.  I want to get from point A to point B quickly.  This really wore her out.  Before she started on the machine she said (lip reading) that I had to ride with her.  That’s the kind of togetherness we have.  

Today they finally pulled the nose feeding tube out and put in a stomach port.  This will enable them to give her more liquid food to build her strength back up.  The nutritionist will regulate the diet based on her needs physically. This is a good thing although I was hoping we would not need the procedure.  It is common and necessary.

Her Mother visited her briefly today with brother Mark.  She was glad to see them but was very tired from her procedure/anesthesia.  I stayed away today as I knew she would be tired and very sleepy. 

Instead I rode my bike 26 miles today for the first time since June 9th.  It was hot but I enjoyed every peddle stroke. Melissa would have wanted me to ride and continue my training for our next trip.  

Cairo lost one pound and I think she knows something is wrong.  I am sure our little “Moaning Myrtle” is missing her best friend. ( I will do for now, but the flow of treats is pathetic, I am sure).  “It is good to go to bed a bit hungry Cairo.  What?  Did you say where the sun doesn’t shine?” Cairo!”

Tomorrow will be a new day with better results and more steps towards the next goal.  Keep up the faith, belief in a higher power and a complete healing of mind, body and soul.

*BIKE-Koos
Searing Summer Sun
Road heat waves rise High
Sweat pours out

Evening Fireflies rise
Yellow Green light flickers bright
Conjures youthful memories