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Rylee's Medical Needs

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As most of you know right before Christmas Rylee had his second metabolic stroke. We were hopeful that it wouldn't happen again since it had been year since his last one. On March 10th Rylee became severely metabolically unstable. We rushed his to the ER just thinking to he was in crisis, and he was, but he also was having another stroke in a different part of his brain this time. I'm not sure why i did not update about this one. This stroke the symptoms were extreme, the worst crisis he has ever had. He was crying out in pain and panic for us to help them. He was scared. We were facing intubation for stabilization. It was traumatic. Rylee was hospitalized for 8 days. He finally stabilized without the intubation, but it was horrible. When we went home Rylee was really struggling with symptoms from the stroke, slurred speech and extreme weakness. He was unable to walk on his own anymore. We were pushing through with Pt and trying to get him on his own two feet again. He was finally starting to show some progress. We had been home for 10 days, 10 days of peace, sleeping in our own bed, home with our other kids. Trying to fight through some new barriers in our home with Rylee new limitations.
On Wednesday March 27th in the afternoon Rylee started to experience some odd symptoms slurred speech and hyperactive, honestly i thought it was odd but he had PT that day and i thought maybe he was exhausted. Around 5:30 he started crying in pain about his ears hurt (Rylee doesn't cry) as you all know. Me and Ryan took him to urgent care for a possible ear infection. They said that they didn't see much, and prescribed drops and we went on our way. We didn't even make it out of the parking lot and Rylee was screaming in pain and showing obvious signs of extreme pain on his body. We went straight to CMMC (bad idea) because we were super close. We were transferred to Maine Medical Center 5-6 hours later with no idea what was happening. Except flairs of excruciating pain. In the ambulance Rylee fever hit 104.7, somehow CMMC missed this even though i kept saying he was sweating and warm. When we got to Maine Med, they stabilized him except the pain that we still have not figure out but has stopped, what we do know is something caused Rylee to have another stroke. He had a second stroke in just 10 days. In another new area. Rylee is stable and doing as well as we can hope. He is still unable to walk and has a NG tube (tube down the nose) that was being used for food and med management. This is still in place. We may need to keep this in until a more permanent tube in the belly can be place. This visit was equally as traumatic as the last. It seems the stroke symptoms are getting worse and worse to bear for Rylee and us to watch. Rylee is going into this next phase of his terminal illness in good spirits and with a smile as always. We are still in the hospital which stinks but is what Rylee needs.
I will be including a go fund me link, with Rylee new needs at home our bathroom is no long assemble for him to use safely. We are hoping to raise money to renovate the bathroom to what Rylee needs are which include door replacement as well as a assessable shower with medical bath seat. This does require us to expand our bathroom out because it is VERY tiny. I tried to find grants to help us but unfortunately there are 2 year wait list on most. I'm also on the last of my vacation time for work this week and although i can take all the time i need it will leave as in a hard place very soon, as i refuse to leave him alone in the hospital to go to work.
If anyone can help, we would so greatly appreciate it. Times are tough and we understand that everyone is suffering but if you can share the link and post as often as possible, we would greatly appreciate it.
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Donations 

  • Darren Metayer
    • $50
    • 8 mos
  • Erin Tolman
    • $20
    • 9 mos
  • Gayle Sharpe
    • $100
    • 9 mos
  • Anonymous
    • $20
    • 9 mos
  • Amy Hidalgo
    • $60
    • 10 mos
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Organizer

Stephanie Brochu
Organizer
Monmouth, ME

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