Daniel's Update

 

 

Wednesday with Laughing Daniel

	Mar 15, 2012

I was so shocked to walk into Daniel's hospital room yesterday and see him with his glasses on his sweet face.  Naturally, he kept trying to tell me what he needed.  He has already figured out how to make a sound to get your attention.  He tried typing on a computer, didn't work, he tried writing, too laborious. Kevin brought the communication device, Daniel sort of got the hang of it but it's hard to learn. By next week, he'll have this all figured out. 
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 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, xo



March 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