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8/9/03 Battle of Flesh and Spirit From:
Rob Payne <rob@everydayisprecious.com> Getting the trach changed 7/30 - a war of flesh and spirit Wheelchair: Now we see it (7/31,) now we don't (8/6) Pleasure Outing to Wal-Mart (8/1) Dentist outing (8/4) brings another blessing The same specific prayer request: Marcy gets her new wheelchair quickly and it gives her the comfort needed to get out of bed more often. And
here are the details: In the Flesh Marcy had her
tracheostomy 3/4/03. At the time, we were told that the trach should
be changed every so often. Some health care professionals told us
once a month, some every other month, some only when it caused problems.
Since it is so difficult to get Marcy out, we decided to wait until
it started giving her problems. A few weeks
ago, during his monthly check up on the vent, our respiratory therapist
mentioned that the cuff needs to be deflated for 15 to 30 seconds
a day to allow the cells in the trachea wall to get some blood flow
and prevent sores from forming. In the 6 months of having the trach
we had never been told that. Once we started
deflating the cuff daily, we started having problems. When suctioning
after deflating the cuff, blood and secretions were bubbling out
of the trach and had to be suctioned out. July 30, at
9:30 am, as I was starting to get Marcy ready for her 2:30 appointment,
the doctor's office called and asked if we could move the appointment
to 1 pm. This accelerated my timetable, but I said sure, she really
wanted the trach changed. At noon, 1 hour before appointment, I
was about to hook up the sling to lift Marcy when the office called
again and said the doctor had looked at Marcy's chart and one of
the other doctors had seen her more, was closer to the case, and
we should schedule an appointment with the other doctor. I explained
(as I had when I made the appointment) that the whole reason for
the appointment was the necessity for a trach change. The nurse
checked with the doctor, called us back and said they don't do trach
changes in the office anyway, that the most appropriate person to
change the trach was the surgeon who originally put it in. We called
his office and he agreed to meet us at the emergency room at 5 that
day to change the trach. It is supposed
to be a simple thing, the plastic tube is supposed to slide out
and the new one slide in easily. They say that the first time can
be a little tricky, but after that, there's a track and almost anyone
can do it. Marcy even has to wear a collar or strap to hold the
trach in place to keep it from just popping out on its own. We took an ambulance
to the emergency room and made it just before 5. The surgeon arrived
soon after 5 and went to work right away. It wasn't easy. He had great
difficulty getting the trach out. He had to pull very hard, almost
to the point of pulling Marcy up out of bed by the trach to get
it out. And it was almost as hard putting the new one back in. This
time, he had to push very hard. Afterwards, the doctor told us the
cuff must have been stuck in her throat on something. It was very
painful for Marcy. She bled quite a bit at the trach site with blood
running externally and blood running back into her lungs. It took
about 10 hours before there was no more blood in the secretions
suctioned from her lungs. In the Spirit That was the
battle of the flesh. In the battle
of the spirit, one of the questions we wanted to ask the pulmonologist
that we thought most compassionate was for details on how to discontinue
life support. Marcy had been
discouraged for the previous few weeks. She was tired of hurting
all the time. She has not been feeling well since the lethargy discussed
in our last email. She has had a lingering urinary tract infection
for which she was taking antibiotics. And she has tried a new medicine,
Low
Dose Naltrexone (LDN,) that, although has helped some ALS and
MS patients, didn't agree with Marcy. She was feeling
a little isolated from the world from limited trips outside the
house. And construction in our house from an ice maker line breakage
had sent her to the master bedroom, out of the center of the action,
for almost 2 weeks (7/20-7/31.) My
Battle When
Marcy asked me the day before the appointment to ask the doctor
about discontinuing life support, I immediately began thinking in
the worldly sense. It is her life, how could I prevent her from
asking such a question? I wondered if I have been keeping her alive
and, if so, is it against her will? Is it against God's will? Does
Jesus want her now? Am I in His way? I prayed and realized once again how self centered, proud, and arrogant I am. How could I ever stop God? Who do I think I am? I control nothing. I command nothing. I am here to serve. He has led me to this service of Marcy to give everyone we touch a message: every day is precious. That is what I am to do. I have not received word to perform any ministry that doesn't include Marcy. I
am doing the right thing. In the Spirit
(cont.) Then Marcy asked
me if pulling the plug on her life support would be considered suicide.
I immediately told her no because I don't think it is. As I thought
and prayed about it, I realized she was asking what God would think,
not what I thought. I looked for scriptural references to help. Not finding any, I emailed two friends, each of whom I know to be spirit-filled and very close to God. Neither provided scriptural references, but each prayed and said that it is not suicide. Our dear friend
Jeanie (the one who prayed for Dean's
healing) who has come to the house almost weekly for almost
a year to pray for Marcy came over and helped us pray our way through
the discouragement. Looking back, we can see that our frustration, inconvenience, and Marcy's pain was to tell us that now is not the time for Marcy to go home - there is still work here for us to do. Wheelchair:
Now we see it (7/31,) now we don't (8/6) The wheelchair
saga continues. You may remember that the Vanderbilt wheelchair
clinic is helping us with a wheelchair that is comfortable enough
to let Marcy sit in it for more than an hour. Even though
Marcy was still feeling sick from her urinary tract infection, 7/31
I loaded Marcy into her push wheelchair and took her to Vanderbilt,
driving with one hand and holding her head with the other. We were
so looking forward to not having to do that on the way back. The new wheelchair
was going to be great. We had several places we wanted to go and
things we wanted to do, once Marcy was comfortable: Darcy wanted
to go shopping with Mommy for some back to school necessities, Matt
is starting high school this year we wanted to go to the parent
orientation night 8/5. She had a dentist appointment scheduled for
the Monday after we had the chair. We arrived at
the clinic and saw the chair. It looked very comfortable. Immediately
upon putting Marcy in the chair, I noticed she didn't have the same
smile she had when we put her in the demo chair a few weeks earlier.
I chalked that up to her still feeling bad. After working
with her for 30 or 40 minutes, the therapists concluded that the
extra sensitive joystick would not work for Marcy. They let us take
the chair home, even though it still needed some work.
But on the way home, Marcy was already getting uncomfortable. By
the time I got her back in bed, she was exhausted. After taking
the chair on a few test runs (see below,) they came to pick up the
wheelchair 8/6 to fine tune it:
These adjustments should take a week or two. Until then, we're back to being at home. Pleasure
Outing to Wal-Mart (8/1) If you were
bed bound for weeks, then could get out, wouldn't you want to go
to Wal-Mart? Me either. Though tired
from picking up the chair the day before, Marcy wanted to do the
next thing on her list, take Darcy shopping, have a girl's day out.
We loaded up the van and took Darcy to Wal-Mart for a few things. It took until 5 pm to get ready to go and we were 8 pm getting home, but we made it. By the end of the trip, the chair got very uncomfortable for Marcy. Dentist
outing
(8/4) brings another blessing Marcy asked
me to make a dentist appointment for her for the Monday after she
got her chair (8/4.) Marcy thought she had 2 cavities and needed
her teeth cleaned. As it turned out, she didn't have any cavities
and the hygienist was able to reach most of her teeth to clean them.
Marcy was able to stay in her wheelchair to have all the work done,
so she didn't have to transfer to the dentist chair. This was one
of the most professional and helpful heathcare visits throughout
our journey. Our dentist is Dr.
Nina Foley. They also fitted her with an appliance to keep her from grinding her teeth. This is also supposed to help with the tension in her jaws. It's called a Nociceptive Trigeminal Inhibition Tension Suppression System, or (a little more user-friendly) an NTI. (More at www.headacheprevention.com.) It's similar to an athlete's mouthguard but is a more rigid plastic and is fitted to go on the front four teeth only. People use it to prevent headaches caused by muscle tension. Most sleep with it, Marcy is wearing it for a few hours during the day. There is a bonus blessing from this device. For the last four or five weeks, Marcy had been feeling as if she has lost control of her tongue. Since she takes all nourishment through a feeding tube, you may not think that's such a big deal, but as she was grinding her teeth, she was biting her tongue so that it bled most days. Also, her oral secretions are still substantial and we use a catheter tube to suction her mouth. She likes to hold the catheter in place with her tongue and has been having difficulty doing that. But since starting with the NTI Monday, her tongue control has returned. Our next scheduled outing is to the GI doctor 8/15 to see about getting Marcy's feeding tube changed to a button. We're hoping this will reduce the pain and bleeding from the stoma site that has been going on for almost a year. Jay, our next
door neighbor, graciously offered to put together a golf tournament
for Marcy as a fundraiser. Please mark your calendar – the second annual Mulligans for Marcy golf tournament will be Monday, October 20, 2003 at Forrest Crossing. If you own a company or know someone who can donate goods for prizes, goody bags, or auction items, please contact them and let us know. We will email details as they are finalized. Our respite
nurse from the service company has not been to the house since the
last update. They don't call us and, with Marcy feeling as badly
as she has been, I haven't wanted to leave her with someone else
anyway. Just as we were
beginning to make headway on getting nursing care from Blue Cross
Blue Shield (BCBS,) my health insurance (through COBRA) changed
providers. After learning from one of our email groups that insurance
companies are regulated at the state level, we contacted our state
senator, explained the situation, then he contacted the insurance
company. That seemed to turn on some heat and get a little more
activity on the case. We won't ever know if that would have done it, we are now starting all over with Humana. We're told they have the same policy as BCBS. The good news is that we know their objections and can better arm ourselves as we begin talks with Humana. We've had friends
tell us they want to help provide dinners but they live outside
of Franklin and the logistics of bringing dinner are difficult. There are three
local places that deliver food, so we have posted a web page with
our favorite meals from these places.
More “how
to help others” columns have been published since our last update: All columns are listed on the columns home page. We have been updating the column home page weekly on Fridays or Saturdays. If you like reading these, you can save this page to your favorites and check it on Friday. We still have the RV available for sale. If you know someone in the market for a motor home, please send them to http://www.everydayisprecious.com/rv July 20 Dave and Pattie (our next door neighbors) brought their entire church youth group (about 30 teens) into our living room to pray for Marcy. One of the young men brought a guitar and the group sang and prayed for Marcy for about 30 minutes. It was a Spirit filled group and a very special time. We still have room for people on our prayer list - please let us pray for a need in your life. If you have a need, please email your prayer request. I'll print it and keep it right next to Marcy's speech synthesizer. The same specific prayer request: Marcy gets her new wheelchair quickly and it gives her the comfort needed to get out of bed more often. We thank God each day for your prayer and care. Rob
& Marcy |