Miracle after miracle.

I've let so much time pass between updates, so here's a ridiculously long update:

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Closed Trach Stoma! Yay!

Prayer Request Summary:

*blood clot in jugular to dissolve so I don't have a stroke (my 5 year survival chance is still only 36% now that I survived ECMO because of the chance of stroke or pulmonary embolism). 

*improved energy, strength, and lung healing so that I can get back to my normal mom duties

*reduced pain

*healing of wounds on right arm and hand

*insurance approval of hyperbaric chamber

*that the hospital and life flight will be generous and just accept what insurance and Justin and I have paid so far, and forgive the $689k left (after $2.3M has been paid). 

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Overall, I've seen a ton of progress:

Happy Easter 2026

 Easter weekend was wonderful and exhausting. It was so good to be with my family at my parents ranch for the weekend, and it was so sweet to be with Justin's side of the family on Sunday. I love watching them all embrace Bryson and Jailyn.  

Pain control: I'd been waiting so long for the week of March 30th to come. I was finally approved for a medical massage everywhere except my neck due to the occlusive blood clot in my jugular.  Every bit of my body still aches, and I was so hopeful for a little relief. Unfortunately, as soon as I got on the toll-road to drive to the appointment (literally 2 min from my house), a bad accident happened in front of me, and I got stuck in the same spot for over an hour. I missed my massage appointment, and I was so upset. I can't get a massage from just anyone, they have to be able to do medical massage, and the provider i know and love (Celestine Massage) books 6 weeks out. I felt like I just wasn't meant to get any pain relief. After a little pity party in the car, I thanked God for protecting me from whatever was going to happen, or providing for my good in the way only He understands.  I was still pretty grumpy about it though. My primary care doctor said it is imperative I keep the medical massage appointments twice a month for pain management.  They're $130/each, so that's a big investment, but if it brings relief, it will be worth it! 

Right arm/hand: I was able to squeeze my own toothpaste out with my right hand! The hand I couldn't move and almost lost.  It still majorly hurts like bees stinging at all times.  My wound care doctor really encouraged me to restart gabapentin for the nerve pain.  I lose a lot of independence if I'm on that med because it makes me too dizzy to drive, but the pain is getting unbearable and making it impossible to sleep. Out of desperation, I looked for homeopathic remedies, and found Hypericum Perforatum.  The nerve pain relief is insane! The first day it took the edge off, and now if I'm consistent it taking it 3x a day, my nerve pain is so much more tolerable.  I'm so grateful for this option! I am dizzy from it, but nothing compared to Lyrica or gabapentin. OT has been going well. I've graduated to higher resistant putty for my hand strength exercises, and I've been able to buckle, button, and use scissors in small bursts. My hand still is very weak and tires easily. 

Wound Care: I had to have more of my right pointer finger cut off due to it being unhealthy tissue. It just isn't getting enough oxygen.  The wound got infected and I had to start really strong antibiotics for 10 days. The wound care doctor has prescribed hyperbaric chamber for me for 30 to 40 sessions. It's 3 hours for 5 days a week. Hopefully my finger will finally heal. It should help my lungs and my blood clot too! She said since I don't regulate body temperature well and I have a history of sinus barotrauma, I may not tolerate the chamber. Please pray insurance approves it AND that it isn't too much torture. My trach stoma will be closed 3 whole weeks tomorrow! What a blessing. This week I took my first shower without having to tegaderm it! No more risk of drowning in the shower! Huge relief. My arm wounds have closed again, so that's one less daily thing I have to take care of. 

Blood clot: I did have to start the twice daily blood thinner shot, Lovenox. My belly is so lumpy, bumpy, and bruised black and blue. We've tried doing the shot in my arm and leg now, both of which have nerve damage which made the shot far more painful. It gave my belly a break though. Please pray this clot dissolves and dissolves quickly! My stroke risk is super high, and that's pretty scary. Also, I'm bruising like mad. 

A couple of my many bruises

Edema: I was diagnosed with generalized Edema. I have to do daily edema massage on myself that takes 20 minutes. It's supposed to help with the swelling I have everywhere, but I haven't noticed a change yet. Actually, I have far more swelling, but I ate peanut butter (I'm allergic to peanuts)...so I did it to myself. Basically, I'm just a wiggly jiggly swollen mess! 

Overall: I joined an ECMO survivors Facebook group and it's been helpful chatting with other people who get it. Unfortunately, there's a lot of negativity and depression in the group. I'm hopeful to bring a spark of joy to those who are dealing with being an ECMO survivor. Each day more memories come back, and I have to ask Justin if it was real or if it was a hallucination. Everyone on ECMO has pretty scary hallucinations and funny ones too. I'll do an entire post about my hallucinations someday. I had some intensely scary ones, some that made me super mad, and some that made me smile. It's really surreal for memories to come up and not know if they really happened or not. Also, we've counted 38 different scars from this whole ordeal! My eyes were really bothering me, so I went to get my eyes checked. I was a little nervous since my eyes were facing in different directions after I woke up from the coma. Turns out God healed my eyes too! My left eye, which was the worst, no longer needs correction. My right eye barely needs any, so I'm back to not needing glasses. She said I can get a new pair that had no correction in my left eye if I want my right eye 20/20, but I'll deal with that at another time. Miracle after miracle. 

I'm back to rowing, y'all! This was my workout of choice pre-ARDS, because it's not up and down, so I don't pass out. I could row for an hour before our trip. I've been able to increase to 13 minutes this week! When I first restarted two weeks ago, I couldn't even make 30 seconds due to strength, stamina, and nerve damage. I'm so grateful for this healing. 

I'm still needing about a 2 hour nap a day to function. When people say "I wish I could nap every day," my response is "I wish I didn't need a nap every day to be able to function." My naps aren't a luxury, they're for survival.  

Here's an organization I found that educates people on ARDS, one of the big health issues I am healing from. 

 

Thank you all again and again for the prayers, meals, and visits!

Lizzie