Happy Labor
Day!
Mike was
admitted to the hospital on Monday, August 28, 2014, after spending most of the
prior weekend in pain, with what he suspected was a bowel obstruction.
Mike had
been to the clinic on Friday. He has been coughing a lot and his nose has been
running like crazy. His FEV1 was 27% and 25/75 was 3%. He and his doctor
decided to try and keep him out for another week. He was put on Bactrim and
another antibiotic and prednisone. Thankfully, his oxygen sats stayed above
92%.
Mike and I
were able to go out for dinner on Friday. We went to Salty’s and had fish. On
Saturday Mike started to have some uncomfortableness/pain in his stomach. It is
hard to know when you have CF where that is coming from. Most CF patients live
with chronic stomach discomfort or pain to some degree on a daily basis. Between
the constant hunger and undigested food there is discomfort. It is hard to know
if eating more will help (hunger) or eating less (bowel obstruction) is the
thing to do.
He didn’t
eat a whole lot all weekend. You kind of get into a catch 22. I sensed his
electrolytes were getting out of whack. By Sunday he knew he needed to go in.
It was just a matter of when and how.
I took Mike
down Monday afternoon. His electrolytes were off and they started the liquid
drano before I left (also known as golytely). Mike works so hard to gain weight
and maintain it but this incident plummeted him down to 118 lbs. He struggled
between being hungry and wanting to eat and fighting the obstruction. The
constant coughing which increased the overall pain level was frustrating. Which
brings us back to more of the catch 22.
Mike has
needed to increase his pain meds, especially at night. In order to sleep, he
needed a stronger drug to negate the pain to allow his body to fall into sleep.
Most of us can relate to this. Some ache or pain that prevents us from falling
asleep and we pop a couple ibuprofen or aspirin and voila – sleep. Pretty much
same scenario only obviously on a larger scale.
Well,
stronger pain meds have other side effects - like slowing down an already taxed
digestive tract. Thus the catch 22.
Still
coughing a lot and nose dripping constantly, Mike asked for another CT scan of
his sinuses. Mike has had over 14 sinus surgeries. He grows polyps in his
sinuses (10% of CF patients have this issue) that put pressure on his eyes and
even sometimes his brain that cause headaches. The polyps also obstruct things
and cause mucus to get trapped and become infected. This nasty infection then
drips down into his lungs causing them to get re-infected. In the past, we have
found that when they become blocked having surgery can give him up to a couple
years of relief from the headaches, drainage and infection. It has been about 2
years since his last surgery.
The CT scan
shows that his left side is completely blocked and his right side is bad but
not as bad as the left. However, (deep breath here) Mike’s doctor does not feel
like he could for sure survive the surgery. As we know, if they needed to
intubate he would most likely not come off of the vent. Barring the vent
situation she does not feel that the benefits of the surgery will outweigh the
risks. In other words, having the surgery could be too much for him and send
him into a downward spiral.
So there you
have it. The good, the bad and the ugly we call today.
The good –
another day of God’s Grace. Another day of living life to its fullest. Another
day of our sisters and brothers in Christ holding Mike and all of us, up in
prayer. It is a gift.
The bad – CF
progresses.
The ugly –
with the blessings of medicine come challenges. Mike has so much coming at him
right now. Just the side effects of all the meds would be enough to put anyone
over the edge. They wreak havoc on his body but most remarkably his emotions.
Up one minute, down the next, anxiousness and peace, strength and weakness.
Hard to regulate. The prayers of others and God’s divine Grace and intervention
are the only things keeping Mike’s head above water as he continues to live
each day while CF progresses.
And live he does. He is going to be here
for a while. Perhaps a couple more years, perhaps not. He will be up and about
sometimes and the next day he may be struggling to walk. He’s going to need
your continued prayers and support. He
needs your unquestionable understanding and forgiveness – it’s called
love. He gets annoyed and impatient as he deals with this roller coaster ride
of living he is on. He’s getting tired but he is still trying to make the best
of what he has been given. He will continue to do all the things on his heart
until his body tells him, no more.
Thank you to
all who are still here for continuing to support Mike and all of us who love
and care for him.
I will
continue to update this blog as God gives me strength but quite frankly, there
are some days when I’m not sure . . .
I know how
much it means to this huge family to be aware of what is going on. It would be
even more difficult to talk this all through to all those who, in love, want to
understand what Mike is going through.
I am also
aware of those who stop by from all over the world to watch Mike’s journey.
When Mike was a small child it gave me great comfort to speak to the families I
met while in the hospital about their journey’s with CF. It helped me to
understand what they were going through. It helped me to be aware of what might be ahead….. etc. With HIPPA and isolation of CFers, blogs are one of the few ways we
connect with each other. Just please remember, every person’s journey is different.
The journey of children born now with CF will be so much different.
I would just
ask that if you have a hard time with my blog that you step away for now. No
condemnation. No judgment – on either side. I’ve always said I will keep it
real and I am being true to that.
Lead by Mike’s
example and God’s command, we are all living life to its fullest. Yes, some of
this is sad, bad and ugly but God is so much bigger than CF. The majority is
peace and love. There just isn’t space or time right now to share it all.
1
Corinthians 13:4-8
Love is
patient love is kind. It does not envy, it does not boast, it is not proud. It is
not rude, it is not self-seeking, it is not easily angered, it keeps no record
of wrongs. Love does not delight in evil but rejoices with the truth. It always
protects, always trusts, always hopes, always perseveres. Love never fails.
Love and
peace to you.
