Please Help me Get Home!

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Please excuse in spelling errors in advance. I am worn out and on a lot of medications;
Despite being sick for so long it had been over 12 weeks since my last hospitalization and I felt my children and I needed an emotional and physical break. So armed with boxes of oxygen, a concentrator and a month supply of meds, we decided to travel to Oregon to see family & friends and family and had the best time together, reestablishing that bond that can be so fragile when you spend 50% of your time in ICU's. 2 days before we were set drive back home I started experiencing deep chest pain and shortness of breath. Luckily Rogue Valley Regional was less than a mile from my sister's house. We were quickly triaged and because of my POLST I was not intubated right away. This decision was made over a year ago with my family & PMD and and after 19 other ventilators felt that I had reached my limit physically and emotionally. There would not be a 20th time. For almost 3 days we tried Cpap, medications and everything else the Drs could come up with. But I was wearing out, and very quickly. By the 3 day the desison was made for me and I woke up on a ventilator. This now makes an even 20 times. They had determined that if I could receive another Botox injection straight into my vocal (I usually get every 8 weeks or so at UCSD) or even at OHSU which  was closer to Medford at this point, this might stop the larayxnal spasms brought on by my very serious case of Paradoxal VCD and then I might be able to get extubated and off the vent. I agreed to try it. Anything was better than laying awake on a ventilator for a week.  When the EMS team came to transport me, I found out I was going to OHSU, 5 hrs further away, and not UCSD like I had thought. After being admitted to the ICU at OHSU my condition continued to disintegrate. I was told they even with the Botox the damage had been done and my vocal cords would collapse and I would suffocate. My best option was to let them attempt a tracheostomy. No more intubations ever again, no more shortness of breath...(yes I was very misinformed again) but it was a life alternating and possible life saving procedure that had to be made immediately. After several hours I finally gave my consent. I asked how I would get home after and if I could do my rehab near home and was told "we have case managers whose sole jobs are to take care of things like that. You don't need to worry about anything except getting better. Let us worry about that." Clearly I was very right to worry. Within the past 2 very painful weeks, recovery has been so awful that many times I wished I was dead. Anything that could go wrong did. IV's only last appox 12 hrs so I was a like a pincushion for the whole hospital. I developed bilateral DVTs in my upper extremities,
 atelectasis, bacteremia and also have undergone procedures for femoral central access twice, 2 external jugulars and am now waiting for my 3rd central line. I have fevers that run out of control very nigh due to developing MSSA. My allergies to Asprin, Tylenol, Heparin and NSAIDS makes my treatment even more challenging. I have told the staff I didn't want to die so far away from my family. Every nosocomial infection that is possible, to get in a hospital, I seem to be getting it. By today's date (September 7th, 2014) I have not seen my parents or kids since August 18th. I had to have a nurse call my school to drop all my classes. This may seem inconsequential but those that know me well, know how taking classes help keep me grounded and provides a positive outlet during times of stress or even just to pass time when the insomnia is bad or I'm waiting for my kids to get home from their school. I hope by doing this I am teaching my children to not let anything get in the way of their education is extremely important to me. And I've now lost that too. As well as so many everyday things that I will never be able to do for or with my kids again for the fear and high likelihood that I would need suction or drool mucus down my shirt like a teething infant thus embarrassing 3 already frightened teens who have seen me in situations that children should never, ever see their parents in. Today I was told that the likelihood of the trach ever coming out was slim to none. It was the only thing keeping my airway open and if they took it out, most likely I would be right back on the vent only permanently. I was also told that neither the hospital nor my insurance would transport me home and because of my condition I need to go by medical transport, preferably flight considering the care I would need during and a 15 hr drive would highly increase the chances of something going wrong and there is a big chance most of my supplies once I'm home will not be covered as well. I really just want to be with my children. I can't ask this of my mom who would sell our house to get me home if needed but since my kids and I live there as well, that doesn't exactly work and while all this is happening to me, my mom, Superwoman, has not only been caring for 3 frightened and stressed children everyday but also driving everyday to see my step father with severe dementia who is in the hospital and needs to be placed ASAP for the charming low price of 5k a month. I will not take $ from his care in order to extend my own. I would rather let go. I just want to see my parents and kids before I do. So please help. Don't let the huge total needed scare you, at this point $1 is one dollar closer to my kids today than I was yesterday. I've never done anything like this and have no idea how it works, I only pray that it does. If you can't donate and you know me personally then you know how much I love you and how thankful I feel to have been blessed with you as a friend. Take care of each other and love like there is no tomorrow, because sometimes, there isn't.
Love and Blessings,
Laurie Konikow

Donations

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  • Jayson Leland 
    • $500 
    • 80 mos
  • Anonymous 
    • $25 
    • 80 mos
  • Anonymous 
    • $4,620 
    • 80 mos
  • Claire Dodds 
    • $100 
    • 80 mos
  • michael francisco 
    • $25 
    • 80 mos
See all

Organizer

Laurie Konikow 
Organizer
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