NSCIA Columnists
Katrine Seghetti-Mayhew
Tuesday, August 05, 2003
The past three days have been one hell of a ride! Friday afternoon they started
bringing Clayton down off of the Propofol (from about 50 milligrams to
20). About 11:15 p.m. Clayton started asking questions that neither Rob
nor I were ready for, nor prepared to answer. The first question he asked
(or I should say he mouthed) was, "what happened to me?" Rob and I spent
the next hour not only struggling to read his lips, but also struggling
as to how we should answer his questions. As a parent you always do whatever
you can to protect your children from pain - no matter what their age.
Needless to say, this wasn't any different. Although I probably should
have been more direct - - or honest - - with my answers... I wasn't ready.
When Rob and I finally got Clayton calmed down and to sleep, we were both
drained. There's no way to prepare for that situation.
Unfortunately, because
he was still on a low, continual drip of the Propofol... Saturday
he had no memory of the previous night. Therefore, when he began asking
questions again, it was as if he was hearing the information for the first
time! Because he wasn't handling his condition well, they took him back
up to 80 milligrams of the Propofol to calm him down, then kept him level
at 45 milligrams. Because he was so sedated and we knew he would not wake
up... and because Sunday was my husband's birthday and our anniversary
we decided to take in a night at home! And when I say a night
at home, I mean a few hours! At least I got to make Rob breakfast! ;-)
When Rob and I walked into Clayton's hospital room Sunday morning...
Rob was given an incredible birthday present... Clayton was
totally off of the Propofol and was breathing on his own! The only assistance
he was getting from the ventilator was as he takes a breath in, the machine
was assisting him in getting out the full breath... but this
entire process was under his own steam! And, his oxygen level was staying
consistent at 98%. Because Clayton was off the Propofol, he was extremely
alert... and wired! After a long day of reading lips and answering all
the questions he was ready to ask, Rob and I finally ran home to grab 2
hours of rest. We probably would have felt better if we had just showered
and drove right back to the hospital!
Today has been the first full day where Clayton has been ready
to ask the tough questions - - and we were ready to answer
them! He was finally able to voice his fears and shed the
tears we were all bracing for! We have been amazed at the level at which
Clayton has dealt with the truth. Once he got through the pain of his current
reality - you could see his dogged determination set in...
that he will walk again! Nothing short of that will do!
His current focus is getting the rest of the mucous from
the pneumonia out of his right lung. As soon as his lung
is clear he gets to get rid of the trach! Although it appears to
be extremely uncomfortable, if not painful, he continually
asks his nurses to come in and suction out his lung! This is after he's
had his breathing treatments! They also removed the last drain tube this
afternoon... from his right lung today!
Are you ready for this...... during his morning physical
therapy when she was stretching out his hamstring muscle
in his left leg... Clayton was able to feel the pull
on the muscle! He was then able to feel the pull in the same location
on his right leg! Then, this afternoon when he was being
given his treatment - an ultrasound that tests his legs for blood clots
- he told Rob he could feel her working on his legs
and his toes were tingling!!! It probably doesn't need to be said that
there were plenty tears of joy shed today! He obviously has a long way
to go... but what a beginning!
Tomorrow they are going to take him totally off of the
ventilator and possibly put in a new piece in the trach
so that Clayton will finally be able to talk! This is huge!
Although it was funny... yesterday when they moved him to his left
side, the adjustment moved him just enough that somehow
air passed across the trach. The next time he went to lip
something to me it actually came out so that I could hear his voice! We
were all startled and laughed! He didn't know how he did
it, but it was cool watching his face as he tried to duplicate whatever
it was he had just done! And.. he did! His soft voice was
music to my ears! Unfortunately he wasn't comfortable and asked to
be repositioned. We lost the voice, but that will come in
time!
If tomorrow goes well they will be able to remove the
trach within a few days. They want to leave it in long
enough so that if they need to do any further lung treatments,
they still have that access. Once they get to this point,
the last tube is the feeding tube in his nose! Then, they'll
be able to move him downstairs and start therapy. That
will take some time. Rob and I have been working his joints and muscles
as often as we can, but he has gotten very weak. Not only
has he obviously lost weight, but he's also lost muscle.
His muscles were so cut from working out... he'll just start over
again! Knowing my son, it won't take long!
He is such a blessing. Throughout this weekend he has
managed to maintain his incredible sense of humor and
positive outlook! I am so proud of him. I know from this
point forward he will master anything he has to face! And...
because of the grace of God he will walk again!
Again, thank you all for your continued thoughts, prayers
and concerns. I will keep you posted! ;-)
