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Wednesday
- August 30th
1. My therapists continue to find new ways to inflict pain on me. It
is purely intentional on their part but absolutely necessary if I am
to reach my mobility goals when I leave. I've developed good relationships
with each of them and I ask them to challenge me everyday. My PHYSICAL
therapist tells me that I have incredible tolerance for pain. I guess
I am just lucky. (ha ha)
2. Big event today, Aug. 30th!! I stood up on my own feet and legs for
the first time since May 26th with the assistance of a "standing
frame." Felt like I was 7 and a half feet tall. This is first step
to my legs getting in shape to walking again and I was very excited
about it. My legs are getting stronger everyday and they are capable
of bearing my weight. It really felt good to be up on them again.
3. Debbie and Gaia have settled back into the school routine, which
we feel is important to keep consistent for Gaia. She is doing well
in school and likes her teacher and is feeling challenged in her work
in G.A.T.E. Debbie is still being plagued by migraine and tension headaches.
We try to spend as much time together as possible here at the hospital,
but it just doesn't compare to being at home. My tentative release date
is October 15th. More to come as we come to closer to that date.
4. Pumpkin Party: We are going to attempt to have the pumpkin party
again this year on the Saturday before Halloween, the 28th. This is
something that has become very special to us and I don't want to miss
the opportunity. For those that have attended in the past and other
possible newcomers this year, invitations will go out after Labor Day.
Thanks to all for there prayers love and support.
August
24th - 11:00 pm
I had a chance to spend several hours with Peter yesterday.
He looks great. Growing a little Soul Patch. ( I think they call it
a gazunga on the east coast.) It is still weird to see Peter without
a beard - but - it's nice to see him.
I also got to see him demonstrate his new electric wheel chair - cherry
red with a black seat! Boy, does it have sensitive controls. Peter loves
it. It technically belongs to the hospital, but it is designated to
him while he is there. What a blessing!
I am trying to put together another site for him. Something the doctors
can use to refer other physicians to. As we've all said - "Someone's
got to have had what Peter has. We've just got to find them." More
on the new Website as it progresses. Please keep this in your prayers.
Putting information on his case up on the Web brings me new problems
to deal with, but we all feel it would be helpful.
Your prayers and kind words mean so much to all of us.
~ Lisa
Earlier tonight, Peter sent me the following update . . .
“As far as what I have to update:
1. I have been adjusting to the people, tempo and the system as a whole
for 10 days. It is sometimes hard to see the progress when the only
thing each day brings is a new adventure in pain. I'd be a liar if I
said I have learned to live with pain by now, It is not the something
the human body CAN learn to live with. However I have complete trust
in my therapists and have not hit any of them, yet. I know that all
of this is necessary and I will just deal with it as it comes.
2. Hospital food getting better in that they have given me access to
cafeteria menu and a substitution menu. Best meals are ones brought
in from outside by Debbie, sister Jeanne, and Javier our best friend.
3. We have our first family conference Friday morning. Entire rehab
team will be there to assess my progress and prognosis. At this first
conference I will get a good idea of how much longer I must stay here.
I will relay that info in my next update.
4. Visitors/Phone calls: I still enjoy receiving visitors but due to
the nature of my busy schedule it is difficult to see visitors on weekdays
unless it is early evening. Weekends are pretty much open anytime. Please
call ahead before visiting. My direct line is 1-858-541-4710. Please
continue to send e-mails as I enjoy reading them.
Thanks for your continued support.
August
17th - 11:00 pm
To my family and friends ~
A lot has transpired in the last week. I know many of you have been
wondering and waiting for an update. Here's a recap of the last week.
1. Treatment options: Consensus of all the doctors is to stay on the
same path we are on now. Some medications are actually being eliminated
and none have been increased.
2. Rehab: Transferred to rehab hospital on Tuesday the 15th. Move was
somewhat traumatic and emotional due to the fact that I have become
very attached to some of my caregivers in that location. Trying to settle
into rehab now with new faces and new names to learn also this is where
the challenge of my pain will determine how quickly I can meet my goals
and be on the road to going home. Pain is still very overwhelming at
times and is a real challenge. Fortunately I have a good pain regimen
in place is helping me though it.
3. Debbie and I celebrated our 14th wedding anniversary on Wednesday.
Deb brought in dinner from the Olive Garden along with a cake that was
mysteriously consumed when it was left at the nurses station. I'm really
blessed to have such a wonderful woman as my wife and cannot describe
the growth and strength in our relationship that has occurred.
4. What else needs to come out? My feeding tube is finally being removed
tonight. (Nurse just came in while we were typing this . . . the tube
is gone!!) My nose wants to have a party. But on the otherhand all the
medication that was going though the tube in liquid form I will now
have to take in by mouth, which means 15 very large pills at the same
time. YUCK!!
Enough details. I'd just like to say thank you to everyone who continues
to check the Website.
Thank you for keeping Debbie, Gaia and me in your prayers.
~ Peter
August 9th - Wednesday
Sorry I haven't sent any updates in a week, I have been so busy
with physical therapy and different changes in pain medications, etc.
Which has left me exhausted in the end of each day!
Updates I do have that my stay her at 7 north is coming to a close.
My doctors and nurses all agree that I am healed enough to move along
to the rehab hospital. I anticipate moving over there as early as Tuesday
of next week.
All of my biopsies for Sarcoidosus have come back negative. Waiting
to see Dr. T for plan of action.
Thank you for all your continued support and emails, I look forward
to them.
~ Peter
August 3rd - Thursday
New pain regiment seems to be working better, less reliant on strong
narcotics more reliant on synthetics. Side effects are what I am dealing
with now, mainly wanting to sleep all the time when I take them. The
pain in my legs has gotten better though.
Physical Therapy--- Some sensation feelings returning to my right leg
and have regained enough control to lift one leg off the bed, where
previously I could not. Had my first experience on the tilt table today.
I actually stood upright at a 72-degree angle for 12 minutes, first
time in 71 days. Felt things in my legs that I haven't felt in a long
time, some very pleasing, some very painful. But nevertheless the physiological
lift of being able to view the world from my normal vantagepoint, it
was very uplifting.
Occupational Therapy-- One of the most consistent things has been my
daily workout with my therapist Anne. She has consistently kept me in
pain. That is welcome because it shows progress. It's amazing that someone
could hand you a pen with your eyes closed and you can't identity what
it is much less even begin to use it. These are just examples of things
I am facing. Wish I could take credit for the typing here, but I cannot.
Keeping up with the emails and updates has been graciously handled by
my sister Jeanne and my friend's daughter Tara.
Hospital Food---After finally being cleared to eat after 65 days of
not eating, and with the only hospital faire available, my eating progress
has been slow at best. Send real food - smuggle anything real in on
all visits. I will trade 16 varieties of soup, that all taste the same
- like nothing. I am still trying to figure out the process they use
to cook eggs, the images I have had are to bizarre too mention here!
I have discussed my eating habits with a nutritionist. I mentioned that
I often have a late night snack more often than not - consisting of
cookies, donuts and or milk. She told me she would put together a special
snack tray consisting of milk, some butterscotch pudding and a few "nutritional
cookies." Can't wait to meet the nutritional cookies. I told my wife
of this new option . . . Debbie promised to smuggle in a package of
Hydrox for me to use at my convince.
Family---Gaia returned home this week from an extended summer stay at
her cousins: about an inch taller, swimming like a fish and blonde hair
turned to green from the chlorine. Gaia starts fourth grade G.A.T.E.
program next Monday. She's looking forward to it. Debbie has gone to
a four day work week with flexible hours to help her cope with the stresses
of me being in the hospital as well as Gaia returning to school.
A big "hats-off" to Debbie regarding our household finances.
She has all the bills paid, on time and seems to have more money left
over each month than when I was working. I'm thinking of delegating
this job to her permanently.
Debbie and I had a long over due "hug, hold and cry session"
last night. It took some adjusting of my bed for us to be able to hold
each other, but it was well worth it! We talked about all the little
things that we miss on a daily basis and we both long for our life to
return to normal, as normal as it is ever going to be.
Above all - this ordeal, has shown me that I have made the best choice
possible when I married Debbie and was granted, by God, the best choices
possible in terms of family.
Thank you for all your continued support and emails, I look forward
to them.
~ Peter
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