Wednesday with Laughing Daniel
Mar 15, 2012
 | | |||
I couldn't believe how awake he was, and how happy he was, frustrated but happy! We had asked him to type one word so we knew what he needed, Daniel being Daniel, tried to type a whole story about a dream he had about Dr. Bekemeyer. We were actually laughing! No sound, but the look on his face was a miracle.
I know everyone wants to come visit, and thank you, but the bosses of the ER are saying "not yet" due to the risk to Daniel. He still has some major issues we have to try to figure out so please be patient. You can send cards to Daniel Marks, St. Patrick Hospital, 500 West Broadway Street Missoula, MT 59802 or to my home and I will take them to him. My address is Daniel Marks, 5313 Spur Lane, Florence, MT 59833.
Issues: lung isn't fully inflated, hole in lung, "gut" still hasn't woken up, main line in his jugular, still has a tube down his nose and throat to pump bile out of his stomach. We don't want any more infections in him!
We have to take every second as it comes. I was floating pretty high yesterday to see Daniel so happy to be alive, he even gave Dr. Georgia Milan a big smile. Ahhhh, I'll take it!
March 14, 2012
Super Daniel! He got his trach yesterday afternoon and did very well in surgery. I left early evening from the hospital and he was doing great. Now, the work really begins. Kevin borrowed a communication device so Daniel can try to make us understand what he wants. It’s like a laptop that speaks. Learning the device will take some time for all of us and I’m expecting Daniel will be frustrated the next few weeks, but I can take it!
We have now
run into the government health policies of “what to do with a man who is attached
to a ventilator that is not quite ready to leave the hospital or some sort of
care”. Only the ICU takes care of people
with vents. No other floor in the
hospital will take these patients and one local “senior citizen” home has a few
openings. We may need to send Daniel to
Billings for Rehab, for about a month.
We’ve had
the excellent medical team, now we have the excellent post trauma care. We have
a Medicaid Wavier Social Worker, Kathy, who has been with us since Daniel was 7
or 8 and she will guide us through all of the paperwork, medical choices,
etc. She has pulled us through every
single crisis we have had to endure. She
has already applied for a grant from the state to pay for nursing care 24 hours
a day/7days a week. Since Daniel can’t
reset alarms, or call for help, he needs a nurse with him. She/he will clean the trach, etc.
The other
person willing to do anything is Diane, she is the director of all of the PCA’s,
nurses, etc. who works at Eagle Watch, Daniel’s assisted living apartments. She
has already found 2 nurses who have trach experience and want to work in a
setting like Daniel’s.
Putting all
these pieces together is very intense and like building blocks, if one piece
isn’t there then none of it works. These
amazing women love Daniel and are armed with their determination to get Daniel
back in his apartment and living the best life he can possibly have considering
all of the setbacks.
We have the
Parent Team, Medical Team, and now the Post Trauma Team. It truly does take a village of compassion to
get all this put together. I have the
deepest gratitude for everyone who has pulled together to meet Daniel’s
needs.
(Daniel’s pharmacist
came up to send him, and sent us flowers. Where else would that happen? We have “a village of Daniel supporters” who
carry us through)
And we have
all of you, praying, sending love and support, to help us wade through all the
various emotions, situations, stress, and mire.
Thank you to each and every one of you!
Tuesday, March 13, 2012, 11:59 AM
Please send these emails to
my family or friends that I have forgotten to list in this grouping.
Sometimes the emails are pretty graphic and people who don't know me may
not want to read these updates (please do not forward to Bonner All, I
think it's too personal for so many people I don't know there, thank
you)
Daniel is scheduled to have a tracheotomy today, later in the afternoon maybe 4 pm. He is currently breathing by a ventilator with a tube inserted through his mouth down into his lungs. The tracheotomy will allow the ventilator to be attached to this tube in his throat and make Daniel a lot more comfortable. Depending on how much Daniel can breath on his own, he may not be able to talk in the future. It gets complicated from here but basically he will be able to say yes or no if he needs the full support of the vent to breath. He will required full 24 hour/7 days a week care.
We are meeting with some people this morning to find out how the care of Daniel can be supported, we're not sure if he can move back into his apartment. Lots and lots of questions are up in the air.
Love,
Carol
Daniel is scheduled to have a tracheotomy today, later in the afternoon maybe 4 pm. He is currently breathing by a ventilator with a tube inserted through his mouth down into his lungs. The tracheotomy will allow the ventilator to be attached to this tube in his throat and make Daniel a lot more comfortable. Depending on how much Daniel can breath on his own, he may not be able to talk in the future. It gets complicated from here but basically he will be able to say yes or no if he needs the full support of the vent to breath. He will required full 24 hour/7 days a week care.
We are meeting with some people this morning to find out how the care of Daniel can be supported, we're not sure if he can move back into his apartment. Lots and lots of questions are up in the air.
Love,
Carol
Daniel
Update
March 10,
2012
Daniel
needs your prayers so I thought I would update everyone on how he is
doing. He was having a very difficult
time breathing but his Stats were all good, it ends up he was toxic due to his
bowels being so distended. He couldn’t
feel he was breathing because he was trying to expel the CO2 out of his system
to get rid of the poisoning, exactly what his body should have done. The bowel
muscles are pretty much gone, he was very close to death, his Ph had dropped to
7.1, people die when their Ph reaches 7, his kidneys were showing signs of
deteriorating so he was taken to surgery and had a colostomy. The next 24 -48 hours are critical to see if
his bowels can heal from this surgery.
He is in ICU at St. Pat’s, no visitors, and is on a vent for
breathing. We are hoping he can get off
the vent and get a tracheotomy. It’s been a very intensive week and we’re all
exhausted, most of all Daniel. We are
very thankful all parents, step-parents included, were all present with him
throughout the long hours in the ER, and we were a great team for him. We really didn’t know if he could live
through another surgery, but Daniel being the incredible human being that he
is, pulled through better than any of us thought possible. It’s a surreal experience to make live and
death decisions for your child, but I think we all worked so well together we
could be half-way sane while in the heat of the decisions of what to do. We are blessed with Bill Bekemyer being his
pulmonologist and Georgia Milan being his Family doctor. They have pulled us all through these
difficult moments.
I’m
requesting prayers, healing thoughts, whatever your belief is, for Daniel to be
able to decide what he can live with and what he can’t. He has lived through a
lot of pain and discomfort in his life; we want him comfortable in whatever he
chooses on some level.
I know I’m
rambling, lack of sleep, food, stress, I thought you would all want to
know. Please tell you children how much
you love them today, for me. Being given
the privilege of being a parent is a gift, and needs to be treated as such, in
my opinion. Daniel has been, and
continues to be, the most precious gift in my life. And the most outstanding
person, his deep compassion and patience with difficulties in his life is a
model we should all strive to be.
Carol
If you could check in with my mom, I would deeply appreciate it. Thank you, xoMarch 10, 2012
Dear friends,
Last night, the Keskeny's son, Daniel,
was operated on and is now in intensive care. It is uncertain how he
will do with this latest development. We are asking for prayers for
healing and recovery for him. Please include him in your daily prayers
in any way you can today.
Love,
Sukhasiddhi
Deborah Hicks aka Joan Zen
Ewam Media and Communications Coordinator
