The ROYFAM Story

I’ve been silent - because I’ve been sick and now I’m officially silent because I have no voice!  This cold or flu whatever it is just hanging on makes me crazy!  Today I feel more normal - except the voice and the cough still lingers.  Jean as avoided it so far - tells me he doesn’t get sick so he won’t catch it! Where’s that palm to face emoji when I need it!  He’s actually doing so great!  He’s finding things to keep himself busy - I mean, I’m finding things to keep him busy.  It’s so strange this place we are in. He’s always had an extensive to-do list of his own - no matter the weather outside.  He always kept the garage cleaned and somewhat tidy but now he doesn’t see it or feel the need to tend to any of it.  He did fold my laundry for me - always grateful for the help!!  But it’s strange to watch your person change.  I’m so glad he’s kind and gentle I have seen some stories I hope I never have to experience.   Last week he b...

2/5/24 Jean woke me at 1am…he couldn’t sleep.  I could tell he was stressed - I’m sure worried he will fall back into that hell hole again.  He asked if  he should take a gummy (THC) and I immediately replied yes!  He used to take a half and now he doesn’t waste his time - the guy slept until just after 7am.  I’m truly so happy to see him sleep!   Yesterday we saw cardiology.  Along with his FTD/ALS he was diagnosed with HCM (hypertrophic cardiomyopathy) in that first hospital visit in October.  Lots of younger athletes die from this - the valve in the heart is a bit longer than normal and when the blood flow is fast the valve blocks the flow so they medicate him to slow his blood rate allowing the valve to perform as it should.  Doc was happy to see how well Jean is doing.  The last visit he was in his sick phase.  That carbon dioxide was creeping into his system.  He does want to send Jean for a CT scan to be sure no damage w...

Thanks everyone who took the time to read my posts.  I’m happy you’re here and grateful you want to know what’s up with my guy and our family.   When Jean was in the hospital I ordered a bed - it’s like a hospital bed but aesthetically pleasing 😜 He needed to be able to raise the upper body slightly and pillows weren’t cutting it.  I didn’t hesitate when my friend Robyn shared that she’d done all the research and this was the best one for the money.  I have NO regrets!!  This thing is perfect!  I loved my old sleep number bed so much I was struggling to change but elevating the head for sitting up blogging, finding inspiration and watching reels is a game changer...oh and Jean can breathe and sleep next to me again!  Head up, feet up, little massage…Jean doesn’t like that part - weirdo!  Says it bugs him! It’s ok I just use it when he’s not in bed.  I fell asleep writing this!   First of all, I haven't blogged in years, let alone f...

I got a great night of sleep.  Made my way to the hospital much later than the day before as the hospital does a briefing at 7am and they prefer to have the halls quiet during that hour.  I respect that.  The staff there was incredible to us! They were compassionate and informative.  Jean was already awake and looked so great!  Still tubed up but nurses said they were hoping to take it out and see how he responds.  They seemed confident and that scary feeling of two options, neither of which were ideal, didn’t seem to play into things as they did just 30 hours before.   I missed the untubing and walked in on him coughing and wiping his mouth.  The nurses were impressed with him, not only how he handled this but everything leading to it!  Many who had attended to him over the past few days came in to check on him, amazed he was alert and without a tube!  His voice was so funny when they removed it.  Branden was with me and we laughed...

I’ve read that intubation was the final step for ALS patients so I was incredibly sad.  This all happened so fast and though we had conversations about what to do if this happens I wasn’t prepared.  I texted the update to JoJo and my mom. I made the hard call to Branden telling him to wake his siblings and tell them I needed them with me.  He was calm and collected like always and said he would gather them and come to the 4th floor.   Seemed like they were all there within minutes. We were only allowed in Jeans room by twos.  Taking shifts to and from the waiting room throughout the day.  So many friends stopped by I needed them and they were there!  JoJo stayed in the waiting room all day! It was one of the saddest days of my life.  The kids and I went home that night as the hospital suggested I had been up all night and they didn’t have a great solution to offer me.  We cried, I showered, we cried some more. My gut was turning at the though...

 Over the holidays I was watching Jean decline rapidly.  He wasn’t sleeping.  He would attempt to go to bed, wiggle and thrash and then get up and tell me he was going to the living room to sit in his chair.  At first he would try to sleep in the chair and when he couldn’t settle he would turn on the lights and the tv..  I then learned he was making himself coffee in the middle of the night because he just couldn’t sleep.  His breathing was labored and he said that laying down in bed made it harder to breathe so he needed to sit up.  I got him a recliner so he could be partially upright.  Still I would check on him and find him hallucinating and sitting in the tripod position with his head down.  Talk about feeling helpless!   I didn’t know what I could do for him!  We tried gummies and they worked for a short time and then we called the doc for a prescription.  He prescribed trazodone.  I kept him on that for a few weeks ...