Mom Update, July 8, 2010, Thursday

What a GREAT day mom had today!!! And it was 2 great days in a row too!! She spoke her first word today!!!

"OW!!" in response to pain. Claudia was rubbing her arm (with the edema) and she said, "Ow!!" 3 times!

This is a long update that starts with our notes from the Family Care Plan Meeting...the end of the meeting to the beginning of dragging the therapists into mom's room to prove she can respond is priceless!!!

Family Care Plan Meeting notes:

(speech therapist): Multi sensory stimulation...doing anything she can to get a response out of her but nothing...comes twice a day for 15 minute interval..
Noise makers, broadway music, massaging, manually opening eyes...at end of 2nd week... in morning and after lunch time—inconsistently moving...arms, legs, half open eyes...

Looking to discharge her from speech therapy next week...

She wants to discharge her...because she needs to respond — showing no response —

Medicare audit regs work in a way that if no progress and improvement in a session by someone at the facility —

Claudia - if this is a crucial time — why stop therapies...??? How to heal if no help or stimulation?

On this unit, it is not uncommon to discontinue services and then have them continue again – but they need to catch her responding –

They can get glimpses or windows of change — and if they do, therapy is reinstated

They meet regularly as a team on all the patients here — people on and off therapy on this floor constantly —

Due to Health Care laws and rules...if mom is not able to follow a command and not responding to therapy...she gets discontinued until she DOES respond...but how can she respond if there is no therapy to help her do so??? Our system stinks for people who can't advocate for themselves through traditional response to therapy....!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Federal Government — Medicare — 1-800- number — Andrew Cuomo in charge of Medicare and Medicaid now.

Claudia asks, "Who do we write to in order to do something about this???" says, "We'll take it to Obama if we have to!!"

We have a right to appeal through IPRO — when she is discharged from services before the 100th day — since she is not coming off Medicare we don’t automatically get the notice for appealing the discharge from therapy...
Usually off Medicare but not therapy — her case is opposite
(the social worker) will send us the appeal paperwork

(Speech therapist) = all she is getting is reflexive not purposeful movement —

Social worker- playing with her ear yesterday and she lifted her hand to move social worker’s hand

Response is not on command and not consistent enough to continue on Medicare

Respiratory Therapy --
Small changes in level of support — dropped her level of support and had to raise it back up – still on high levels of support now. Up and down changes — not significantly lower than North Shore — SMIV now spontaneous breaths but not on own — machine gives her a delivered breath like a pressured support — CO2 levels if high than not enough ventilating and CO2 levels build up —
Claudia - How is this different from sleep apnea?? Answer: not different from sleep apnea — obesity hyperventilation syndrome — you hypoventilate so lungs are not expanded enough so higher levels of CO2 —

When on vent and trach — sleep apnea is not considered or an issue — being on a trach and vent is like bypassing the sleep apnea

Trachial Milasia — distention of trachea — complications — does not effect vocal chords... 90% of time—hole even closes up...

Nutritionally — She has skin impairment on back — not a bed sore yet — now it is a deep tissue injury (bruise of sorts) — gets treatments daily...just on demafits (cream)...THIS wound was a 3 and is now 0.5!!!!!!!!! It is getting better rather than worse and is almost gone!!

What are they doing for back sore/bruise so it doesn’t turn into a bed sore and open wound?? Mom is on an air mattress that distributes the pressure on her back... Pressure support for back sore area – The medical Nurse monitors it — and Dr. — It’s not the contact with the bed that causes the sore –but the pressure on the area – so the air mattress helps this

Left arm is not usually on pillow — DO IT!!!!!!!!!!!!!!!! (we tell them this all the time!!!) This arm has the edema and needs to be elevated.

Mom’s hearing aids were left in her ears for her shower last Saturday ($6,000)!!! Luckily, the repairs are covered by insurance!!! PTL

Dad: If head is tilted and there is air leakage in trach, is this a problem?— Answer: no big problem — they will fix it — it is monitored by Respiratory and Nurses

Allergies = Respiratory monitors secretions and checks to see color and texture and amount etc. to see if anything is needed

She is not swallowing sinus and head drainage from allergies...due to trach so may need more suctioning...

Down 8lbs since she came here... — less weight = easier breathing.... (Dad says kiddingly, "Give her diet pills then!!") [They can't if this is what you are thinking!!]

RCP - like IEP - all that is done for the resident —
1. Incontinent (check and change 2-4 hours)
2. Hoyer lift - to move her (machine with claws) 2 person transfer
3. Full assist to dress ...
4. Moved to geriatric chair larger for sores
5. Cream on back
6. A & D on feet
7. Bed lifted for support
8. Removing hearing aids at night and put back in morning — bedside drawer
9. Float heels on pillow consistently

Just finished Vancamiacin on 7/6
Will check to see if bowel infection is still there in a few days

If she moves her mouth, is this good??? Shelby sees mouth movement and says this is good

She is not in a coma now — not considered to be by them — because she is responsive

Sedatives to get out of system — how long??? —

John: What are we looking at??? How long will she be like this???
They don’t know—no answer—

She has been through a lot of trauma — she needs to heal...she could be tired...

Blood sugars are good — and have been —

RECREATION THERAPY WILL CONTINUE!!!!

Speech Therapy's discharge date is Tuesday — as of now – until further notice —

Family Health Care Determination Act - Dad will be her surrogate—he is appointed
Changed as of June 1st — primary decision maker — Let hospitals...know...

MEDICAID is this forever???

Medicare is always prime and always there – Medicaid pays what no one else does — Medicaid covers home care...

Medicare/Empire/Medicare Supplement/ Medicaid (Medicaid is last payment source)

Still gets Blood Pressure meds now — Zocore for high cholesterol

Team meets weekly as a CORE and as a Team on Thursdays...
Families — are not invited formally — but they can meet with us any Thursday –

Jen will follow up with IPRO re: therapies...
Social Work meets with Rehab once per week also...

Family Care Meeting over.

Went back to mom’s room:John told the therapists that he’d show her that mom opens her eyes and responds sometimes—he dragged her into the room and told everyone else to come see what mom can do too!!! Anthony and John shook mom and she opened her eyes widely!!!!! Then Claudia rubbed her hand in front of physical therapist and speech therapists and mom orally said, “OW!!!!!” 3 times!!!!
Anthony tried to wipe her lip and she held it tightly shut!!! Deliberately!!! We were screaming!! She did everything she can do AND in front of the Speech and Physical Therapists!!! This means she showed them she can respond!!! She bought another week of Speech Therapy and possibly Physical Therapy as well.

IF WE DON’T WORK WITH HER, NO ONE WILL other than Respiratory Therapy.

We began the “Love Notes to Dotty” book as Mrs. A suggested, yesterday. When we arrived this morning, Claudia, John and I looked in the book and here is one note we found:

Dear Mrs. Gilman
aka Dotty
I love that you like music and musicals...I grew up with my mom having us watch movies such as My Fair Lady, The Sound of Music, The King and I etc. etc. When I do your care, I hum to the old tunes...I’d sing–but I’m afraid you would cry at my lousy voice—humming sounds better :) OH! By the way–DUH!! I’m Kristine, your night shift nurse.
Love,
Kristine
P.S.
I believe in miracles too.

SPEECH THERAPY TODAY:
Speech therapist came in for 20 minutes and dropped ice cold drops of water at the top of mom’s head from a wet cloth that the speech therapist squeezed—as the drops fell, mom grimaced and speech therapist told her to tell her to STOP, I told her to say NO...she did neither. But then the speech therapist asked her to wipe her face—she lifted her right hand to her chin once out of 4 times being wet. She moved her mouth but randomly. The speech therapist told her to help her wipe her face and she placed a cloth in mom’s hand and did hand over hand full prompting to help mom wipe her face.
Mom opened her eyes 4 times or 5 during speech as well. No difference in response whether her eyes were open or closed. The speech therapist said we need to get her to consistently follow at least 2 1 step commands—Lift your hand. Open your eyes. Open your mouth....
The speech therapist used a moist sponge stick on mom’s lips too and asked her to lick the water from her lips with her tongue—mom moved her tongue 1 time but not on lips.

The speech therapist wants a family member or close friend present at Speech Therapy every day around 1-3 p.m. She said mom responds better to all of us then to her---and she said this is a good thing!!

THANKS FOR ALL THE PRAYERS!!!!! Keep praying please!!! More now than ever!!

(PS Dad is a mess still....he can't cope well without her...he cries every day...keep him in your prayers too please)

I am reminded tonight, of a "peppy" hymn called, "Look what the Lord has done"

"Look what the Lord has done, look what the Lord has done.
He healed my body, He touched my mind,
He saved me just in time.
O, I'm gonna praise His name, each day He's just the same.
Come on and praise Him, look what the Lord has done____."

"For I will restore health unto thee, and I will heal thee of thy wounds, saith the LORD;" Jeremiah 30:17