Progress. It feels like baby steps until I look back and see how far I've come!

Trach stoma has stayed closed all day today! 3/20/26

Just like every week so far since I got home, it's been a crazy busy week. 

Monday: I had a follow-up with my pulmonologist to review my chest CT and a visit to wound care. 

My Pulmonologist will repeat my chest CT in 6 months, as he believes I'll need oxygen support at least that long. I was bummed he thinks I'll need it that long, but I'm not all that surprised. I'll keep fighting to prove the doctors wrong, and keep praying for miraculous healing to be a witness to the doctors. 

My wound care appointment went well now that they numb the area before digging out the dead tissue. Today my arm wound was about a 3rd of the size as it was at my appointment 10 days ago. She barely had any dead tissue to cut out this time, and she said she expects the wound to heal in about 2 weeks! This is huge as we weren't sure if the arm and hand tissue would stop dying or not.  She cleared my ECMO sites in my neck and groin (about 10 stitches each place) and my feeding tube wounds from her care! She also was surprised by the trach stoma healing. It continues to close and open daily. Every day I wake up and it's closed, but it always reopens by the afternoon from me straining or coughing or even just talking. Either way, it's a miracle that it's closing. Please continue to pray for it to stay closed!

Tuesday: I had physical therapy and Dr. Patel at Wellness Revolution. 

PT went really well and we were able to do about half of the session on only .5L of oxygen. The lower oxygen needs continue to baffle me when I think back to being on 40L of oxygen and it still not being enough. We started more standing work today and added mini lunges. It feels good to be moving more again. My left leg is still pretty swollen by the end of the day. 

Dr. Patel worked on my muscles in my back, left arm, and feet, as those were the only areas the hematologist approved could be worked on. My entire body still hurts, so it was a relief to start to have some of the stuff muscle worked on. I wouldnt trust most people, but I've been seeing Dr. Patel since 2011. 

Wednesday: Bryson got his ear tubes placed and adenoids removed. I much prefer to be the patient than the one by the hospital bedside!

Thursday: I finally started OT at TIRR and had my echocardiogram at MDA. 

It was about a 5 week was from OT evaluation to starting therapy. My amazing PT, Lyann Colon with Forge The Athlete, has been helping me with my right arm and hand too, so I had already checked off 3 of the 6 goals for me being in OT before even officially starting. 

A major THANK YOU to everyone praying for my hands and arm.  Looking at these pictures is crazy. From hands that were dying and insanely painful and we thought I might lose, to regaining use and strength is just baffling. The top pic is 1/17/26, and the bottom is today. Only GOD'S healing power. No other explanation when I keep being told I should have lost my life. 

OT Test Pegs: Normal is 23 seconds. At eval I took 51 seconds. Today I took 20 seconds! Huge win. 

OT Test Grip Strength: Normal for my age is 70. At eval I was 15. Today I was 31! 

Echocardiogram: I had this appointment because I have regurgitation in almost every heart valve, and my chest pain has been worse since this fiasco. The echo showed my heart is pumping a lower volume of blood, but no regurgitation was seen this time.  I see the Cardiologist on Monday and have an electrocardiogram as well. So I'll understand better what this means after those appointments.  

Friday: Bryson and I had a mother son day since he can't go back to school until Monday.  It was a great day! We walked as a family night at a 20 min/mile pace and I didn't need oxygen until .5 miles in!

Dying Hand on 1/3/26

Right arm with unexplained insanely painful bruises that turned necrotic. 1/3/26