Two weeks and 1 day post-op today.  Allie continues to progress on schedule (translate – she is wowing Scott and I).  Yesterday she passed her swallowing evaluation with 90% score, so she can eat REAL food – solids and thickened liquids.  She was so excited to eat and drink again after nearly 2 months, it definitely helped pick up her spirits. This time her tears were happy tears.  She will have another swallowing eval next week to determine if she can drink liquids without the thickening agent added.  The feeding tube that was in her nose was removed today.  She’s using a speaking valve in her trach when eating and during the daytime.  It was wonderful for us to hear her voice again.  She needs to remove the speaking valve at night at this point but the good news is, she went the entire night off bipap last night and didn’t drop her oxygen saturation levels once.  As I write this she is having a bronchoscopy to clear secretions and get deep lung samples checking for infection and a biopsy to check for rejection.  My fingers and toes are crossed both are negative.  She has quite a bit of lower extremity edema (swelling) that is very uncomfortable for her.  She’s getting Lasix to try and get that extra fluid off of her for both drying up her lungs and reducing the size of her legs and she’s walking twice a day to help with moving fluid from her legs.  She has a DVT (clot) in her right groin vein for which she’s been on IV heparin for but will be switched to an oral anticoagulant for 6 months.  The clot was from the ECMO cannula.  The plan going forward is to downsize her trach tomorrow and switch to an uncuffed trach then on Saturday they will try capping the trachcompletely for progressive amounts of time so that she’ll be breathing entirely through her nose and mouth. She may or may not need oxygen by nasal cannula once the track is capped.  If that goes well, the next step is removing the trach altogether.  They also plan on taking her last two chest tubes off suction for 24 hours then removing both tubes the following day.  They totally shocked us today by saying if things go as planned, she could get discharged from the hospital some time NEXT WEEK!!  Just think of how dire the situation was only 2.5 weeks ago and now she’s looking at leaving the hospital within the next week or so.  It’s hard to comprehend.  She needs to stay within an hour of the hospital for the next 3-5 months with a 24 hour “caregiver” before returning home to Rochester.  So let’s hope she continues on this remarkable path of recovering as planned without those bumps they tell us often happen.  For right now – Today is a great day!! 

I might post some pictures of her before and after transplant sometime over the next couple weeks when she can look at them with me. She hasn’t had the energy to do that yet.  Just as a side note, I saw the pictures from pathology of her old lungs and, my God, I don’t know how she was breathing with those.  Amazing she did as much as she was doing with those and amazing she has new lungs.