Miriam's friends from Hampton Cove Publix Supermarket dropped by this morning. They left a vase of beautiful flowers and a beautiful card. She is loved by everyone. Anyone surprised?

Day 85 - 3 weeks after returning from Shepherd Center

Dear Family and Friends,

I was on call the past weekend and Miriam had a rough week.

Last Wednesday evening, I received an urgent phone call from her sharp and compassionate Internist about Miriam being severely dehydrated.

Two weeks into the skilled nursing facility, she had lost 8 pounds. She was not getting adequate PEG tube hydration. Miriam needed urgent intravenous hydration and blood tests were needed. I drove back that night and started her IV line.

Thursday 2:30 am, I received a phone call from the nurse at the skilled nursing facility (SNF). Miriam's BP went up in the 200's because that is how she responds to pain and discomfort. They were compounded by dehydration and urinary tract infection. Her heart rate was in the 130's and her liver enzymes became mildly elevated.

Thursday morning, Miriam was admitted to Huntsville Hospital followed by more IV hydration and IV antibiotics. Her caring Internists did an excellent job and Miriam recovered the next day.  While she was there Friday morning and afternoon, her cancelled scheduled Botox injection to her jaw muscles and her left ankle muscles were performed by her Neurologist. 

Friday evening, Miriam was back at the skilled nursing facility (SNF). Her urine became clear, her vital signs have stabilized and her lab values have improved. 

 Miriam's trach collar has been capped for nearly 2 weeks. Yesterday, the trach collar was removed by the respiratory therapist. It is now covered with gauze and will eventually close as it heals. She has been breathing through her nose without problems and without aspiration. Although she remains in coma, Miriam seems to open her right eye more frequently, for more prolonged periods, and appears to slowly track more and more. God remains in control. 

I was moved to tears by our neighbor who has visited Miriam frequently and read to her Miriam's favorite book, the Bible. Miriam's friends from the Hampton Cove Publix Grocery also came to visit her. They gave her a bouquet of flowers and a heart warming get well card. My family and I are deeply grateful to all of you who have been earnestly praying for her and our family. 

Every time I see Miriam opens her right eye, I remind her of Joshua 1:9  "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go."  Mark 11:24 "Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours."  

Knowing Miriam, it is our prayer that God will use this horrific storm in our family to touch lives so we can glorify Him. We continue to Commit...Trust....Rest....and Wait patiently upon the Lord. Psalm 37:5,7 

In His Time,

Alex

One Week Back in Huntsville

From Alex:

Dear Family and Friends,

Miriam has had her trach collar capped 24/7 for 6 days in a row now. She seems to be tolerating it well. Her O2 sat ranges 94-98%.

Her Baclofen dose has been reduced to 62 mcg from 66 mcg. This has helped restore some of her muscle tone. It is hard to strike a balance but she needs some muscle tone for PT, OT and ST. On the flip side, we lost ground on the gradual casting of her left foot and ankle deformity. The bivalve cast no longer fits properly due to spasticity. She doesn't have as much spasticity elsewhere due to baclofen pump. She is also grinding her teeth intermittently and may damage more of her teeth. Oral surgery removed two of her remaining loose lower front teeth due to high risk of aspiration. Botox injection is being contemplated this coming thursday and the goal is to weaken her jaw muscles, not paralyze them. This will save her remaining teeth.

Two nights ago, Miriam opened her right eye and I started talking to her and showing her pictures of friends and family who went to visit her in Atlanta's Shepherd Center. She looked straight at all of the pictures as I was scrolling and narrating them one by one. I was so excited. Her right eye stayed open for several minutes. I have not seen her do that again but she still opens her right eye intermittently. Her right eye would occasionally track. 

Please continue to pray for functional recovery so we can go back for rehab at Atlanta's Shepherd Center.

In His Time,

Alex

1 Peter 4: 12-13
Dear friends, do not be surprised at the painful trial you are suffering as though something strange were happening to you, but rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when His glory is revealed.

Back In Huntsville

From Alex:

The neurologist that is managing her Baclofen pump infusion increased her dosage slightly by 10%. Although 10% increase is small, it seems a lot for petite Miriam.  That sedated her heavily and she now has severe muscle hypotonia. She is basically like a rag doll. Her muscles are just so floppy along with her joints.  This morning, the occupational therapist thinks she may need a few more days of adjusting to that increased dose. If not, her joints are easily subject to internal derangement. The neurologist may have to decrease her dose slightly. 

Before the increased dose of baclofen pump infusion, Miriam would react to certain sound and touch stimuli. She would slightly turn her head to the left. She would open her right eye spontaneously during coughing spells. There were times when I would see her right eye stay open in the morning for a few minutes. Fortunately, she does not have respiratory depression yet with her increased baclofen dose. 

Big Springs Specialty Care (skilled nursing facility) seems to be flexible in trying to take very good care of Miriam.  I have been pleased so far with their care. This will help me a lot when I go back to work this coming Monday.

She is getting 5 days of OT, PT and ST.

Please do not give up praying for her. 

Matt 11:24 "Therefore I tell  you, whatever you ask for in prayer, believe that you have received it, and it will be yours."

Luke 18:1 " Then Jesus told his disciples a parable to show them that they should always pray and not give up."

On a positive note, Miriam's trach collar has been capped during the day time since last Sunday in Atlanta and this was continued here at Big Springs Specialty Care. They replace the cap with a Hygrofilter at night just like they did in Atlanta. I am thankful that the respiratory therapist and pulmonologist were willing to use the Hygrofilter. After a week of cap on and cap off, they may cap her trach collar for 24 hours and see how she tolerates that for another week. Eventually, they may just put a button for the 3rd week and hopefully that would be the end of her trach collar. 

Pray for the right dose tweaking of her baclofen infusion pump. Too much could lead to overdose and respiratory depression. Too much also leads to severe muscle hypotonia and internal joint derangement. It would be extremely difficult to do physical therapy, occupational therapy and speech therapy with zero muscle tones.

Continue to pray for functional recovery. If she emerges from coma and is able to follow commands, we would bring her back to Atlanta's Shepherd Center for 4-6 weeks of rehab.

Thank you for your love and unceasing prayers.

In His Time,

Alex 

A Birthday Note for Miriam

Dear Miriam,

Today is your birthday but you always told me that you did not want to celebrate your birthday anymore, so I won't say "Happy Birthday".

However, there are some things I do want to say to you my dear sister!

I never had any sisters....just brothers. I love them dearly, but how I wanted a sister!  In fact, when my baby brother, Gerald , was born I asked the nurse if she could please take him back and trade him for a baby sister! God had other plans! When I married my dear husband, in the package deal , came four sisters!!  Yeah!  For several years I lived close to you and Doris and you could not have been a better sister to me!  I have so many fond memories!!  Remember planning your wedding?

" I want to look like an angel for Alex!", you said!  Guess what?  You did!!   Remember making the centerpieces for your reception...all those feathers and pink flowers! It was a perfect day ...you were a Princess and you married your Knight in Shining Armor!

I missed you so much when you moved away from California, but we still had a sister connection and I knew I could always talk to you!  I think of our first trip to Knoxville.....Warren was maybe 18 months old and my boys were maybe 11 and 12? I can still hear you playing Indiana Jones on the piano to teach the boys....they can still play it!  Remember making those Siu Mai....we said the one looked like George Washington!  How we laughed!!

Over the years we had many trips to TN and AL and you would come to CA. So many wonderful memories....and there will be more!  Remember when the guys were at Annapolis and went to your home for Thanksgiving and we surprised them!? We all played "Rocky Top" on the violins......what fun we had! The one thing I could always count on....if I called to chat with you we always had a good laugh!  Cheered my spirits!

Sister, you are such a blessing in my life and I miss our chats! I can't wait for you to wake up so we can continue our story.

Forgive me but I have to say it...."Happy Birthday" dear sister!
I love you dearly....always have, always will!

God Bless You Miriam,
Love, your sister, Sally

Monday - Day 62

 Miriam has had another busy week of therapy. The permanent ITC was successfully placed last Tuesday and the Baclofen is working. Her spasticity is much improved and her neurostorms have resolved. They are working on her trach and plugging it for periods of time which Miriam is tolerating well.

 PTL for visitors! This week some very special friends drove down to visit Miriam and Alex from Knoxville, TN.  Meredith and her family visited and then Warren flew in from New York. Warren will accompany his Mom when she returns to Huntsville tomorrow via ambulance. Once Miriam emerges from the coma, she will return to Shepherd Center for the rehab program.

 Thank you all for your continued prayers------ please continue to pray that Miriam will wake up and be able to follow commands. Waiting is hard, but we continue to trust in an all-powerful, compassionate God who loves our dear Miriam  more than words can express.