6 months post transplant

Rosie blowing bubbles 6 month post tx

Rosie and I spent the first part of our week in St Louis for her 6 month post lung transplant evaluation. It was a quick visit compared to the last time we were there! We drove to St Louis Sunday afternoon, checked into our hotel just in time to hear Idina Menzel sing the last note of the Star Spangled Banner for the Super Bowl.  We were very thankful that the video was up on the internet within minutes! I wonder how many Broadway people tuned into the Super Bowl for the first time this year? We decided on The Cheesecake Factory for dinner where Rosie decided my dinner looked better than hers so we switched.  Her teriyaki chicken was pretty good too. We ordered cheesecake to go and listened to the end of the Super Bowl on the AM radio while we drove back to the hotel. A little note to The Cheesecake Factory, you should include utensils in your to go order.  Eating cheesecake without a utensil is interesting.

Monday began at 6:00 AM with a full schedule of testing and clinic visits.  Her blood work came back fine and her anti rejection medicine level was perfect.  We will check it again this Monday and if it is still good she won’t have to have it checked again for a month. Yay! Her lung functions were up again – she is at 73% now.  They are expected to continue to go up for another 6-12 months. Her lung scans looked great as did her heart.  She walked 320 more feet on her 6 minute walk compared to the last one she did in October.  She also jogged 2 laps this time, something that she has not done before. We also visited Rosie’s friend Mildred who received her heart November 29th.  She is doing very well and it was so good to see her smiling and being a normal kid.  She and Rosie sang “Let it Go” together several times.

Tuesday was another early morning for her bronchoscopy with biopsy. They had a little trouble getting an IV in.  The surgery nurses tried twice and then called for the IV team who were able to get it on the third try with the ultrasound machine.  Rosie was not happy.  Her doctor was very happy with the way everything looked inside and he even noticed that the right side of her diaphragm was working again. It had most likely been bruised during the transplant and the hope was it would heal and begin working on its own again. The nurse who took care of her after the procedure was also a CF mom.  Her (adult) son received his new lungs and was getting ready to leave the hospital. Small world.

All the appointments were done and all we had to do was wait for the call to tell us the results of the biopsy.  We swam in the hotel pool Tuesday evening and went shopping at the mall Wednesday morning. I finally gave up waiting for a call around 4:00 and left a message with the transplant coordinator.  Since everything had been good I went with the no news is good news stance.  We swam in the hotel pool again Wednesday night and had dinner at Panera Bread.  In St Louis, Panera is called St Louis Bread Co. I guess it began in  St Louis, but all the logos say Panera Bread.

Early Thursday morning I got the call that Rosie’s biopsy was A0 B0 and at that time, all of the stains were negative.  A0 means no rejection and B0 means no inflammation and negative stains means there is no bacteria growing in her lungs.  This is the best news we could have hoped for.  And again I cried, and again I thought of her donor and the amazing, strong, healthy lungs he gave to Rosie.  I say “he” but we still don’t know anything.  For some reason “he” feels right.  I hope someday we will know.

It’s been an amazing journey these last few years.  It was about two years ago that we began the transplant journey with Melanie.  I would have never guessed this is where life would have taken us.  I thought Melanie would have gotten her transplant and would have finished high school. I didn’t think Rosie would have needed her transplant this soon.  But my plans are not Gods plans and although I don’t understand why Melanie had to leave us so soon I am very thankful that He has allowed Rosie a second chance at life.

We are have barely begun the second month of 2015 and Rosie has vacationed in New Mexico where she rode a race horse and shot a gun (with great aim) for the first time. Traveled with her theater group to Atlanta for a Jr theater Festival where she had her first solo line in a performance. She met Lila Crawford from Annie and the Into the Woods movie, Luca Padovan from Newsies who told her to seize everyday.  I think she is doing that! And almost met Darren Cris.  Her group won an award for excellence in acting and she swam for the first time with her new lungs.  The last night at the Festival Rosie blew bubbles to honor her donor.  Her friends were there cheering her on as she blew the bubbles in front of the Playbill backdrop. she has yet to take off the arm band showing we were festival attendees.  She has been taking tap and ballet and voice lessons.  She auditioned for Suescial which she ended up deciding not to do because there are over 100 kids in the cast and it’s still cold and flu season. She has been helping with the production of Winnie the Pooh kids and will be auditioning for Legally Blonde this Sunday.  She has been moving thru her school work at a great pace and has begun a new program to help her overcome her dyslexia.  Wow!  It’s hard to believe it’s only the beginning of February!

I have been able to spend more time Stage Managing and am pursuing leads that might bring opportunities with more theaters in Indianapolis. My first love will always be Stage Managing with my Biz family.  I love them all and will be forever grateful for introducing me to it and giving me the opportunity to learn and grow.

I’m not sure what this year has in store for us but I am thankful for all the good things this year has brought so far.  I am thankful for Rosie’s donor and the hospital staff that has taken such good care of her thru her transplant. I am thankful to God for his many blessings and pray that he will continue to bless us with a healthy, active Rosie for a long, long time.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s