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3/16/03 Still Standing From:
Rob Payne <rob@everydayisprecious.com> Sorry it's been so long since our last posting. I thought
that with my leave of absence from work, I would have more time
to keep this site updated. The last couple of months have been particularly
busy. Saturday,
March 1, Darcy’s ninth birthday, Marcy stopped breathing. We
called 911 and kept her respirated with some breathing aides we
had at the house. She
lost consciousness in the ambulance on the way to the hospital.
I didn’t know she was unconscious, I was riding in the front
seat. The EMTs told me I had to ride in front when they drive “with
the lights on.” When
we got to the hospital, the doctors wouldn’t let me stay in
the emergency treatment area as they had allowed on previous trips.
Previously they had let me stay because I could “translate”
Marcy’s wants and needs. Since she was unconscious now, they
didn’t need me. They
first sent me to the registration desk. Before I could give our
address, they called me back to a doctor’s consultation room
and told me Marcy was not breathing on her own and asked me if I
wanted her intubated. I asked what the options were and they said
intubation or let her go. I told them to intubate. They
asked if I was sure I wanted that, “after all, she has ALS.” I told
them I was sure I wanted that. They told me that once she goes on
a ventilator, it will be hard to get her off. I told
them I was sure I wanted that. As
she left the room, I could hear the doctor telling the nurses, “he
wants to do it.” A nurse
then took me to the meditation room. As I was sitting alone in a
15 by 20 room with sofas, a Bible, and lots of boxes of tissues,
the thought came to me that this was the room they bring people
when their loved ones are going to die in the emergency room. Everyone
else waited in the emergency waiting room. I started thinking about
the phone calls I would need to make – who I would need to
call and in what order. Then I caught myself and I started praying as hard as I have ever prayed. I asked Jesus to take her painlessly, if it was her time. I then told Him that if she made it through the ER, it would be a sign to me that He was still planning to deliver upon His promise to restore her body. Then the peace that always comes after talking with Him settled over me. Two
days later, Marcy told me what was going on with her while I was
in the meditation room: She
saw two rays of a peaceful, but very bright light and then she came
back. That’s all she can remember. Eventually
(I lost track of time,) they came and told me that Marcy was going
to be all right, that they had gotten the ventilator tube in and
the ventilator (vent) was breathing for her. At one point they had
thought they would have to do an emergency tracheostomy because
Marcy was gritting her teeth so hard they couldn’t get the
tube in. As it was, they had to put a bite block in her mouth to
keep her from biting the tube in half. To
try and shorten the story, Marcy got the tracheostomy Tuesday (3/4)
and was released from the hospital the following Tuesday (3/11.) She
has settled in pretty well with her home ventilator. We have her
in a hospital bed in the living room so she can be more involved
with the family. She is in command and in the center of the action. Prior
to this March 1 hospital admission, Marcy spent 12 days of the first
2 weeks of February in 3 hospitals. Each trip had its own 911 call.
All were breathing related: swollen air passages, excess oral secretions,
and allergic reactions to medicines. From
2/5 to 3/1 Marcy had to keep her head perpendicular to the ground
so that the saliva she couldn’t swallow (her secretions) didn’t
go down her windpipe and choke her. That
meant that the little sleep she got was in a sitting position. We
had her propped up with pillows and had her head held in place with
elastic straps. We kept a suction machine running 24/7 to capture
most of the secretions. So
now Marcy doesn’t have to worry about breathing. She can use
her strength for other things. Marcy’s
allergic reactions in February made us quit all supplements. Though
the strongest reactions were to antibiotics (Levquin, Zithromax,
and other cephalosporins,) Marcy was also getting small reactions
to something in her supplements.We’re now starting to re-introduce
them to her slowly to identify and avoid any further allergic reactions. One new thing we are trying is heavy doses of coral calcium. The idea is to make her body as alkaline as possible – disease exists in an acidic state and doesn’t exist in an alkaline state. You can read more about this at http://www.BarefootCalcium.info. When
the ambulance brought her home from the hospital, she went into
a hospital bed in our living room. This way, she is more involved
with the family and things going on in the house. From the living
room she can see the front door and the sun room. The kitchen is
directly behind her so she can hear what goes on in there as well.
We
see the trach as a way of extending her life a little longer while
we wait for the healing – whether through an instantaneous
miracle or through the miracle of medicine and all the drugs and
protocols now in development. While at Vanderbilt, we saw a speech therapist who introduced us to Marcy’s speech synthesizer. This is a touch screen computerized device that talks for Marcy – she “keys” in the words and it says them. The machine continuously scans through pre-programmed rows of icons on the screen. When the item she wants is highlighted, she activates the device and it says the letter, word, or phrase that is highlighted. It even controls the TV, so she’s back to changing channels whenever she wants. She
still has a little movement in the middle finger of her left hand
– that’s what she’s using now to activate the device.
The same switch can be taped to her forehead and can be activated
by raising her eyebrows.This machine has already saved us lots of
frustration in communications. The
machine is only one of the blessings we’ve seen since our last
posting. The
news story of Salt Lake City Elizabeth Smart’s homecoming was
a blessing to us as another sign to keep praying and to keep hope
alive. Our
rental house, the one Dean and Karen used from May through October,
sold in February. Dean
and Karen continue to be one (or two?) of our biggest blessings.
They came to visit us the first week of February to help Marcy mark
things for the Encores and More consignment sale – Marcy has
participated in this sale since we moved to Nashville 8 years ago.
So they were able to watch the kids for us during all the hospital
trips. As
Karen was marking items with Marcy’s pricing, the organizers
of Encores and More called us. They said this was their tenth anniversary
and they wanted to give something back to the community. They asked
if it would be OK for them to collect money for Marcy’s care.
They asked customers to round up their purchase, putting the difference
into Marcy’s fund.They then matched the money gathered with
profits from the sale.We received the check last week and are very
grateful. We’ve
grown closer to my family with special correspondence with my brother
and with one of my sisters offering to spend her vacation with us.
Mom & Dad call at least once a week and have visited (from Atlanta)
more often in the last few months than they did the whole time we’ve
lived here. My
leave of absence from work has been a huge blessing. It has allowed
me time to care for Marcy with the focus and intensity that I wanted
to do. It lets me believe that I am doing everything possible to
help her. My biggest worry is that I’ll become too accustomed
to my current dress code: sweats and slippers. Oh well, at least
as Spring approaches, I know I’ll be changing my costume: sweat
shorts and old Happy Tales T-shirts. We’ve
been blessed to have many people come to pray with us and for us.
Our friends come and they bring visitors from St. Petersburg, FL
to Redding, CA – each with their own healing stories to encourage
and lift us up. The
kids are great. Our friends, the Astons continue to come every Sunday
and Wednesday to take them to church. Darcy’s
back in soccer and Matthew back in lacrosse. Friends and neighbors
have been kind enough to include them in their carpools without
making me take a turn driving. Though
we weren’t able to make it to Darcy’s birthday party March
1 (Marcy and I were in the emergency room,) Karen and friends helped
make Darcy’s gymnastics party a blast. March 8 I was able to
leave the hospital long enough to take Darcy to the Father/Daughter
Sock Hop put on by the Girl Scouts. It was our third year and we
had a great time dancing the night away – at least until it
ended at 9:30. Our
neighbors still bring dinner every weeknight. While Marcy and I
were in the hospital, they brought for Dean, Karen, and the kids.
We never take this show of love for granted and are amazed every
night. Our
neighbor, Audrey, comes over every day to check on Marcy. She makes
sure Marcy’s fingernails are polished properly. In the hospital
every doctor, nurse, and visitor asked if I did Marcy’s nails.
Of course, I said yes. Oops – one visitor – my mother
– knew better and told me so. Our neighbor, Chris, as well as Shane, Darcy’s youth minister from church, went above and beyond the call of duty in February by staying up all night to watch Marcy sleep in the hospital. This gave me some much needed rest. Looking
ahead, all three of Marcy’s sisters come in town today (Monday)
and will stay through her birthday Friday. They always bring a lot
of joy and excitement to the house. They came for a week the latter
part of February and kept Marcy in stitches. We
are still standing strong that God is going to heal Marcy. There
is no word yet on the Australian medicine mentioned in our last
posting. God’s hand may work through the doctors or in some
other way. We
want to thank you again for all of your prayers. They keep us going.
We want to remind you that Marcy’s
prayer chain is still active. Though there is not someone listed
in each hour, knowing that so many people are praying helps keep
Marcy’s spirits up. Thank you again for your love. Rob |