Making Memories While We Still Can
If you’ve clicked on this please read this in its entirety. One year ago on August 9th I married the love of my life and mother of our 4 wonderful children. At the time she was the hardest working and most loving person I’d ever met.
By August 31st she had been experiencing several symptoms that made us have to take her to the hospital in NKC where she was admittedfor severe itching, dry mouth and eyes, extreme lethargy, and then abdominal pain. This was all very odd and concerning to us because she ate healthier than most and worked out 4-5 days a week on top of running a business and keeping our home ship shape. After spending Labor Day weekend in the hospital they finally found her common bile duct was full of gall stonesand did surgery to clear the duct. I asked at the time how this could happen to someone that had not had a gall bladder in over 10 years andwas told “Sometimes it just happens” which didn’t sit well with me because I am a “Cause and Effect” believer. However after she got over the pancreatitis that was induced from her surgery things seemed to be back on track but it was short lived. Within 3 weeks Nicole was bedridden for several days at a time with only brief periods of feeling almost OK. In December I had to take her back to the hospital because she could not walk. Her right leg from the kneedown had lost function and feeling. After an EMG and an MRI the doctors came in and told us we are not seeing much nerve response fromthe knee down, but we don’t know why because we don’t see any damage on the MRI and then they proceeded to send in a psychiatrist to tell her the litany of symptoms she was having were in her head. Fast forward another month or so and she was told she had fibromyalgia and to take Tylenol. All while complaining about the main issue of severe pain in the upper right quadrant of her abdomen. Rheumatologist said you have fibromyalgia, but also somethingelse I don’t know what yet.
She was sent to a neurologist for tests, a GI doctor for tests, so many different doctors I can’tkeep track, but about 4 months ago she had anabdominal CT with contrast done. That evening she started experiencing severe pain so we went yet again to the ER at NKC. They called KU and got the CT Scan. Told her she was constipated and sent her home. KU called the very next day to inform us her liver was over 25% enlarged and she needed to see a heptologist. After a 2 MONTH wait for a telehealth appointment the heptologist didn’t want to hear any of her history. Told her she needed to 1. Eat healthy. (She does) 2. Don’t drink (She Doesn’t) &3. Get some exercise!!! (She had been before SHE COULD no longer do it)
Almost 3 weeks ago we had some light at the end of the tunnel! The hallowed Mayo Clinic finally called back and had scheduled appointments for her. We booked the hotel and made arrangements for children and animals only to be called back 2 days later or 3 days before the appointments to let us know......they no longer work with her insurance provider and we would need to put down a $5000.00 retainer as well as pay for appointments and testing as we go.$1130 for first day of consultations.
$8340 for liver biopsy if the doctors deemed one necessary.
$4500 for yet another CT with contrast. Just to list a few.
The very next day Nicole felt a new pain in the center of her abdomen directly under sternum. So I took her to yet another ER hoping for better results and treatment for my wife.
The Resident sat with her for almost 40 minutes, the attending physician sat with her for almost 30 and truly seemed to care. The ran another CT with contrast and the anomaly from the CT 4 months prior is still there. As well as her liver still being enlarged and now her spleen isalso enlarged.
Today we did get good news as we got to see the new GI. We have a liver biopsy scheduled for August 31st which funny enough is the same day last year that she first went to the ER forall of this. The results will take 14 days to get. However there is still the issue with the anomaly that has shown up in 2 CT scans 4 months apart.
We have asked that they get a copy of each scan and compare side by side. They have asked Nicole to take a laxative once daily between now and the liver biopsy to see if it is somethingthat can be “flushed out” however they didn’t seem completely confident and if it is still there we are afraid it could be a tumor that has formed.
This whole ordeal has been a nightmare that I wouldn’t wish on my worst enemy. However ithas also taught us some very important lessons. That is why we are building a Skoolie so thatif her time is short we can make the best of what time we have left. For us Covid-19 and the online schooling that comes with it could very possibly be the freedom that we need to ensure that our children get to make memories withtheir mom that if she hadn’t gotten ill they may never have had. We were both always so busy that we didn’t necessarily put our children first. I don’t mean that we were bad parents butwe both feel we were too caught up in providing for them that we didn’t take as much time as we should to raise them and nurture them.
We are hoping that by building this tiny home on wheels as quickly as possible that we can maximize anytime that Nicole has left if it ends up being not much, and that is why I have swallowed my pride and turned to our friends, familyand possibly even strangers for help.
If you did read all of this I would like to say thank you for taking the time to read about my wifes struggles. If you can please share this far and wide I would be eternally grateful. I hope I get to spend many, many more years with my wife and mother of my children, however if I don’t I at least want the days we have remaking to be filled with adventures and fun so our children will always have fond memories of their loving mother.