***UPDATE BELOW***
Caitie's Story
As some of you might know, Caitie has been in the hospital since October 31. 49 days, as I am writing this. Almost the entirety of that time has been spent in the ICU. We have been hesitant to ask for help because we have not been entirely sure what kind of help will be needed. This is the story of everything Caitie has been through in the last 49 days. It is long, but I can happily say that as of writing this, here on Thursday Dec. 18, she has shown amazing progress the last week. So just know that today is a good day, and there have been a few good days in a row. Below is the too long didn't read (TLDR) version, followed by the full version with far too much medical information if you really want to know what she has been through.
TLDR
My sister Caitie has been in the hospital since October 31. Mostly in the ICU. Things are starting to look better and she is stable and progressing. But there is a long road ahead for her. Once she is finally okay to be released from the hospital she will have a long journey of both inpatient physical rehab followed by outpatient rehab. This will be life altering as she has lost the use of her legs and will be in a wheelchair moving forward. With that will come lots of medical costs.
Our Goal
She will have insurance through Cobra for the next 15 months and with no income currently, we are looking for 15k just to help with the $1,000 a month cobra payments and another 10k for the unforeseen medical expenses coming. This will not cover all of her future medical expenses, but will go a long way in helping her recover, and helping our family assist her in what life has in store more forward.
Full Story
On Friday October 31 at 7:30 pm, Caitie had a seizure at home in Atlanta. Paramedics came, checked her vitals, and cleared her to be driven to the hospital. At 9 pm, she had another small seizure in the waiting room of the ER. She was immediately taken to the back. While in the back being treated, at around midnight, she had a much larger seizure and went into cardiac arrest for 15 minutes. They used the defibrillator on her 7 times while performing CPR and she was revived. Once revived, the doctors determined she needed to be place on an ECMO machine as her heart was extremely weak.
Once they were able to get her somewhat stable, at least stable enough to move her, they transferred her from the ER to the CardioVascular ICU. She spent the next 10 days on multiple life support machines: a ventilator for oxygen, ECMO for blood circulation, and dialysis to filter out toxins in the blood and fluid removal. Sometime, during those 10 days, we saw the first sign of hope. She was able to wake up and she showed brain function. She recognized family and friends who were at the hospital. A major step forward, but she was also confused and very paranoid.
While this initial victory was a huge relief, it was short lived. Restrained so she wouldn’t pull the Vent tube out, on sedation meds, a feeding tube, blood thinners (and whatever else was on the IV tower with 8 separate lines going into her), we were then told that she was bleeding. The blood thinners used to keep the ECMO machine from clogging were also causing her to lose a lot of blood. She received 9 pints of blood in one night.
****Side note, Donate Blood! Go to www.redcrossblood.org and find a blood drive near you. There was one here at Emory and a few of us were able to help repay some of what she needed, but it really puts it into perspective how important it is when 1 patient can need that much in just one night ****
Back to the story (I feel like the grandpa in The Princess Bride, RIP to Rob and Michelle). So they get the bleeding under control. And Caitie is then stable enough to come off the Vent and the ECMO machine. Things are starting to look up again. She has the color in her face back, looks so much better. Her vocal cords are damaged from the Vent, but she can write and mouth words to communicate and she doesn’t have to be sedated 24/7. So things seemed good. The Dr.’s are talking about her moving to a regular hospital room outside of the CVICU. Caitie is obviously weak and bedridden, so I don’t think anyone was immediately concerned that Caitie was having lower body pain and was too weak to move her legs. Unfortunately, a CT scan soon after reveals that the ECMO caused what looked like a spinal cord injury. “She may never walk again.”
That hit us like a ton of bricks. We were so happy that she is alive and going to be moved to a regular room, but what does the new information mean? No one in the family wanted to talk about it. “It’s too early to tell” and a lot of things are speculated in a hospital, not worth losing sleep over something that might/might not happen. Plus, at the same time, Caitie was moved to a regular room across the hospital. Out of ICU, things are looking up! Her new room was in the older section and not as fancy, but who cares. It’s not the ICU. Spirits were good and she seemed to be getting better.
Less than 48 hours later, on Nov. 13, we woke up to a phone call that she had been moved to the ICU overnight, due to a pseudoaneurysm in her left leg. A day later she spent her 39th birthday in the ICU. She was surrounded by family, but it was still a brutal reminder that she is not out of the woods yet. She went in for surgery on Nov. 17th, and came back on the ventilator, again!
The “may never” part of everything started to settle in even more after the surgery. As a family, we finally started to discuss that. What does that mean for her? After the hospital? After the inpatient rehab? Outpatient rehab? Life in a wheelchair? Where is she going to live? Do we need to rebuild the kitchen with lower countertops? Do we need to install a shower on the first floor? Ramps? Dialysis? What is life going to be like? After a bit of existential crisis and a lot of tears shed, we got some good news.
The surgery went very well, and the vent was just precaution while she was in surgery. It was removed the next day, and she was moved out of the ICU on the 19th. Her new room was on the ground floor and she could even see a couple trees and students walking outside her window. We had 4-5 days of progress. Her kidneys aren’t back yet, but they aren’t totally failing which is good. She gets to rest, watch some bad movies and sitcoms, and is even allowed to have ice chips. Her favorite thing throughout this whole process so far, the one luxury she is allowed to have, are ice chips. I stayed with her until midnight on Saturday Nov 22. I left feeling really positive and thinking, “She seems to be doing so well.”
On Sunday Nov 23, we woke up to the call that she had aspirated overnight, and she was back in the ICU. Her lungs were filled with fluid and she was struggling to breathe, so Caitie went back on a ventilator and was put on continuous dialysis to try to clear the fluid in her lungs. That also meant that Caitie was spending Thanksgiving, her favorite holiday, sedated and on a ventilator. A bummer for sure, but the next day she was improving and was able to come off the vent. Caitie struggled with nerve pain in her legs over the next 48 hours and couldn’t sleep at all, but by Sunday she was finally able to fall asleep for 12 hours.
She was off the vent, she was sleeping, her vitals seem good. I thought she is starting to finally clear some of these hurdles.
But as we have learned already…every time we thought we saw a light at the end of the tunnel, it turned out to be an oncoming train. Overnight, her lungs filled with fluid again. They tried dialysis, but her vitals dropped and so it had to be postponed. She struggled to breathe over the next 24 hours, and the decision was made to put her back on a vent for a 5th time on Dec 2., and a week later they performed a tracheostomy. The tracheostomy allowed the ventilator to be switched off so she can build up strength, but also go back on the vent when she was tired without the need for sedation.
This brings us to the last 10 days or so. Truly the first signs of real progress since we learned that she was not brain dead. Since getting the tracheostomy, Caitie has gotten off all of the sedation meds. With dialysis the fluid in her lungs has been removed and her lungs healing and working towards full functionality. She has been able to be in an upright sitting position. She has worked hard to get her breathing to a place where she is off the vent and she is finally able to breathe on her own again. She was able to speak using her own voice for the first time this week, and after struggling to write, using hospital charades, or eventually trying to text what she has been trying to say, hearing her speak was INCREDIBLE! She has been doing physical and occupational therapy daily and she was assisted into a wheelchair and made the short lap around the corridor under her own power. The next big win will be her being able to swallow again, and then she can finally get the smoothie from “1 mile away” that she has been showing me on her phone for the past 10 days. So fingers crossed for that in the coming days.
Which brings me to the reason for posting this. Caitie had recently left her job earlier in October in anticipation of moving back to Chicago. Thankfully, while she doesn’t have any income currently, we are able to keep her health plan with Cobra. Payments for her plan in 2026 will be $1,000 a month. She has 15 more months of Cobra and while I am sure this goal will not cover all of the long-term costs, it will cover the cobra payments and some of her more immediate medical needs while we learn what the next steps in her recovery are.
I know money is tight, especially at this time of year. And if you can’t afford to help, please consider donating blood and helping others like her who are in need.
Lots of Love
On behalf of Caitie, Mo, Trish, Tim, and Cathy,
Thank you for reading this and considering helping out.
Pat
