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