This is a long e-mail update today. For that reason, I am opening with the scripture verse...
Matthew 5:3-12
3 "Blessed are the poor in spirit,
for theirs is the kingdom of heaven.
4 Blessed are those who mourn,
for they will be comforted.
5 Blessed are the meek,
for they will inherit the earth.
6 Blessed are those who hunger and thirst for righteousness,
for they will be filled.
7 Blessed are the merciful,
for they will be shown mercy.
8 Blessed are the pure in heart,
for they will see God.
9 Blessed are the peacemakers,
for they will be called sons of God.
10 Blessed are those who are persecuted because of righteousness,
for theirs is the kingdom of heaven.
11 "Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of me. 12 Rejoice and be glad, because great is your reward in heaven, for in the same way they persecuted the prophets who were before you.
(from New International Version)
Mom had a pretty active day today...moved all legs, arms, wrists, ankles...and a lot too! She opened her eyes frequently but all under a minute. She mouthed "Ow" and "What" but didn't speak out loud today. We had our Team Meeting and it went well. They spent 1 hour and 15 minutes with our family---8 of us were present (including 4 of the grandkids). After the meeting, we all went back to see mom and you can tell by the look of her face/mouth area, that she enjoys having the kids with her. I spent the afternoon with her and among other things, we read a book.
Mom has a new roommate. We don't know her name yet. Pray for a peaceful coexistence while they are together there. Mom's old roommate's cousin stopped in this afternoon and commented that "My cousin is very upset to be moved from your mom. The social worker called last night to say she is very depressed about moving. She has no family and so she enjoyed being with your family. Your family brought life to her and joy. Would you visit her upstairs sometimes?" I assured her that we would, indeed, visit her. Her comment filled me with humility and gratitude.
Dad had an extremely difficult afternoon and evening...feeling very low and crying alot. We all came to his house and sat with him and comforted him. Please continue to remember him in your prayers.
Anthony Michael, Lenny, and Ava all had questions for the Team. Anthony Michael asked a question that astonished them all (If tremors mean that there is a brain/muscle connection, then why were we told to stop the tremors??) We began the meeting by assuring them that we only want mom to get well and to do all that is best for her in that direction of wholeness and wellness (we have been told that we intimidate people there because we are always around, taking notes and data on mom and her progress, and because we call meetings and take notes there too]...in reality, we only care about mom getting better. We take notes so we don't forget (an easy thing to do when the stress level is high), and so that we hopefully see improvement in Mom (we do).
These are the questions we asked at our meeting (I prepared a copy for each of us):
4 Main Reasons for this Meeting:
1. We are delivering all her therapies and are with her monitoring her every day—so we want to share what we observe, along with our concerns about mom.
2. We want to discuss the side effects of the medications mom is on and the possibility of decreasing or ceasing the use of some of these drugs (because mom is very sensitive to medications and frequently has experienced side effects).
3. We want to be sure that the Physical Therapy—Range of Motion exercises we do match what the CNAs do on a daily basis and know when the CNAs do therapy so we don’t do too much or too close together or overlap therapies.
4. Frequently, it appears that many therapists say that there is ‘no response’ from mom, yet many night CNAs and nurses see responses—what is the communication line like between people who work with mom?
_____________________________________________________________
Questions and Concerns:
1. In order to continue to be active members of mom’s recovery, we are requesting copies of all her charts so that we can all be on the same page.
2. Over the last 2 weeks, mom is not moving as frequently or the same appendages as she had been. Decrease in rate and frequency of movements.
At the same time, we have observed new movements (moved legs off bed/chair) and audible oral language (Monday morning—what she said to me, Tuesday night what she said to Con and Claudia, last night what she said to Lenny and I).
a. Does she need another CAT Scan/Brain Scan???? to determine if
everything is alright?
b. Is the decrease in movement due to increase in types of responses
and actions? No sensory integration yet, but new circuits are opening?
2. Does she get EEGs here?
3. Drug Side Effects:
a. Many of the medications mom is currently on are new for her since
the aneurysm and stroke. Prior to the aneurysm and stroke she was on:
-Diovan (Blood Pressure)
-Zyrtec (allergies) [Respiratory therapist said she should have
her allergy shots here]
-Allergy shots (post nasal drip...airborne allergens...)
-Ecotrim (1 daily)
b. What meds is she given here?
-Heprin
-Coumadin
-Iron
-Lasix
-Prilosec
-Zocore
-Dilantin
-Labetalol
Is she on any sedatives here at all???
We read up on some of the side effects, many
of the drugs she is on note “difficulty breathing” as a side effect. How
does this effect her weaning from the vent?
How does it effect her ability to be alert?
Some medications cause sleepiness.
When are these types of meds given??? Can they be given at
night? She is sleepy around midday through 3-4 p.m.
Some side effects are hair loss—we noticed this.
Some side effects are joint pains...we noticed her right side, which is
her good side, is now very sore the last week during range of motion
exercising.
Some side effects are peripheral edema—her right arm still is like this
Some side effects are muscle weakness and stroke symptoms like
confusion, vision distortions and problems, one-sided weakness... we
observe all this in mom.
Some side effects are tremors and muscle spasms–we saw this but
how do we know that they are from brain connections and not side
effects of drugs?
Some cause raised blood sugar levels.
c. How can we get her off some of these meds?
1. She has experienced coughing problems from some blood
pressure meds she was on in the past...the medication she is on
now is new. She was on Diovan which worked well for her.
d. Can we get her off the PRILOSEC? And control acid reflux through
diet instead?
e. Does she need BOTH heprin AND coumadin??? bad side effects
from coumadin!!
f. Isn’t she supposed to get periodic CAT Scans with Dilantin?
IT APPEARS THAT THE MEDICATIONS ARE COUNTERPRODUCTIVE TO WHAT MOM’S RECOVERY...we are not interested in maintaining her life comfortably...we are interested in rehabilitating her.
4. Mom’s awake time is sometimes around 11 a.m. but mostly 4-7 p.m.
And also apparently at night according to the night CNAs and Nurses
5. Physical Therapy questions:
a. Are the pillows I made for her good to use? Jessica said yes use the
arm pillows. PLEASE SHOW ALL CNAs how to position pillows and
nurses too!!! For her arms and to float her feet!!!
b. Kareem was supposed to investigate equipment for mom’s arms to
use in the chair — what is happening with that?
c. Can the facility provide appropriate pillows to use with mom on legs
and arms???
d. Sore on left leg in back—keep on pillow or exposed to air to heal?
e. Would temperpedic pillows work well for her head? Legs?
f. If tremors are good, why stop them?
6. Respiratory Questions:
a. What meds are given to open airways lately?
b. How often are they given?
c. How does weaning from vent work??
7. Can she remain alone as long as possible so that she may recover in the ways we are trying to provide for her???
a. TV constantly on is NOT GOOD for her
b. We are there a lot and need room to work with her
8. Hearing Aides are ultimately the responsibility of the facility not ours. We participate in putting them in and taking them out—but CNAs need to be responsible too. Like when it is shower time... Someone became upset and bothered with me when I called yesterday to remind them that they were in because we had been there to work with mom and now she was getting a shower.
9. What were recent blood work results?
a. What was cholesterol?
b. How has her blood pressure been?
c. Is the blood sugar monitor used only on her?
d. Use alcohol wipes before and after each injection or puncture for
blood sugar monitoring.
10. What we are doing with mom:
a. Range of motion exercise 4 times per day
b. Giving her something to hold in right hand so she doesn’t hold the
vent line (thin piece not tubing)
c. Using rolled up towels to keep hands open in natural position
d. Flat rub and move fingers in left hand frequently to loosen
e. Sensory stimulation
f. Music stimulation
g. Flat hand massage with lotion
h. Aromatherapy
i. Cognitive therapy — asking her to follow commands or answer questions
11. What else should we do?
12. What are you doing?
The Team’s Reply: (We don't necessarily agree with all they said...)
Degree of alertness at night — is due possibly to sleep wake cycle at night and day—
Passive range of motion exercises are more preventative management for no contractions or atrophy— whether or not she is alert or awake while we do it doesn't matter — it is good too — no atrophy —
sleepiness doesn’t matter —
Her motions were non-purposeful — gradually becoming more purposeful —
will suggest to doctor to have another brain scan
No real necessity to worry -- no symptoms of stroke or anything but if we see facial droop, non functioning movements...
At our request, they will order another neurological consult----
Forward any records here at facility to new neurologist if need be
They will ask the neurologist about the dilantin being given for seizures to see if she can come off it
No excessive coughing that they see in respiratory
Coughing is a good thing— clearing herself
Allergies shouldn't be a concern because she is in a controlled atmosphere — here – all is controlled in filters in vent
Allergies unlikely with vent
they have to reach a certain level INR in order to discontinue — INR level is monitored every week — blood thinness — clotting level —
Coumadin forever maybe
Heprin was just discontinued
No side effects relating to breathing difficulties on a trach or vent — vent does all for her
Exhale CO2 on settings went up...out of range....comfortable where she is now and CO2 is in upper range...could be due to the secretions...suctioning more frequently....CO2 levels are high now....need to decrease....
Is there a way to stop the secretions....medication?
Could be cyclic lasts a few days and goes away....
Steroids are not necessary now—not bad enough
Joint pain on right side ---- she can get tylenol... if increase in pain with no touch... if it gets worse— can have pain medication....
No pain medications now....
Their philosophy is no sedatives....
Respiratory rate goes up during care only and then stabilizes
Peripheral edema is not from not moving—it is from congestive heart failure —
Positional edema — from limb being below the heart — she would have to have an underlying heart condition to cause that
When there is edema what moves blood and liquid around lymph system doesn’t work right
Edema — lasix helps but we think it isn’t working
Weight loss of 13 pounds total
They will show staff again what to do with pillows —
Left leg sore OK on pillow
Can we get her back on the Diovan and not on current med??? They will ask doctor...
How is her blood pressure now — Blood pressure med is every 12 hours but not given if pressure is good... given only as needed
Needs prilosec or peptic ulcer disease prophylacsis happens
Blood on fingers...always
Review with nurses to wipe injection sites with alcohol before and after injections
Blood work — all good to date
Zocore — request cholesterol reading — if good, can we take her off med
Let the tremors happen but if it gets bad — then stop it — or if interfering – stop it ---- don’t continue range of motion if tremoring —
The physical therapist knows what is a tremor and what is a seizure — global shaking could be seizure
Seizures can show up on vent — but not all show up
Will use empty bed in her room as a last resort—
Just roll the towel no rubber bands —
Stuffed animals OK
Snore sound from secretions and air leaks
Ulcer/Bed Sore on lower back at spine is all healed — deep tissue injury was totally healed —
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