One Week

If you would have told me the events of the last 10 days were going to happen the way they did I would not have believed you.  One week ago today my baby got her second chance at life.  Rosie is now breathing with beautiful pink, healthy lungs.  My mind is still trying to catch up to all that has happened.  What an amazing blessing God has given Rosie and our family.  Two weeks ago we were in Indianapolis with very sick CF lungs.  She was in the hospital with fevers and getting Iv antibiotics.  She was transported by ambulance to St Louis Children’s Hospital on Tuesday July 8, 2014.  Friday July 11, 2014 was the day we had been waiting for.  She was official listed for lung transplant – She was going to have a chance at getting new lungs. That seemed like such a huge hurdle to us.  One we never jumped with Melanie.  But we made it with Rosie.  Even though she was still running fevers and was moved to the PICU we thought she would begin responding to the antibiotics and eventually be discharged to wait for the call.  Sunday morning I was woken by Rene, Rosie’s nurse.  She asked me to come take a call at her desk right outside Rosie’s room.  She told me not to worry it was good news.  I answered the phone and this is what I heard – “This is Tracy from transplant.  We have a potential match for Rosie”.  WHAT?  She was just listed Friday.  Were were told we could wait for up to a year. Tracy warned me that it was not set in stone yet.  It could always be a dry run. I understood and was prepared.  Dr. Rivera and Jade the resident were standing in the hall way.  I asked them if it was the 13th or the 14th.  It was the 13th.  My thought went to the date.  What if this happens on the 14th – the 6 month anniversary of losing Melanie. I couldn’t believe what was happening.  I woke up Rosie to tell her the news.  She was quite and thoughtful.  I can’t imagine what was going through her mind.  Then I started making phone calls. RD was sleeping at the apartment so I  called him first. He was planning on going back home.  His plans were changed.  It took me a few seconds to remember how to dial his number.  I called.  He didn’t answer.  Are you kidding me?  I called again and again.  Still no answer.  So I called my son Adam, my parents, RD’s parents and my brothers. Everyone had the same reaction – What’s wrong?  No one was expecting this news so quickly.  Finally as I was looking up the number to the Ronald McDonald House office to ask someone to go bang on the door, RD called me back. I took him a minute to process what I was telling him. I think it is safe to say that we were all in shock.

As the day went on everything was falling into place.  Dr. Eghtesady (Dr. E) was the surgeon.  He and Rosie made a deal back in April that if he was the surgeon to give her new lungs she had to sing for him. He came in a told us that the lungs looked good and the surgery was a go.  I told Rosie she better start thinking about what song she was going to sing!  Surgery was scheduled for 4:00 am on July 14, 2014. RD’s parents and aunt came to the hospital to sit with us during the surgery.  They were also there when Melanie died.  I remember walking out of the hospital on January 14 with RD and his mom and dad.  What a difference it was walking out of the hospital with them this time.  I think it was healing for the four of us to have been together again. Similar circumstances but a much different outcome.

Rosie says 14 is her lucky number.  She was 14, received her new lungs on the 14th and it was 2014.  14 was also my favorite number. When Melanie died on the 14th, I wasn’t so fond of the number any more.  I told Rosie that she has redeemed the number for me.  Now when the 14th comes around every month it won’t be only a sad day.  We will remember the day we lost our precious Melanie but we will also rejoice that Rosie got her second chance at life on that date.

What a year we have had.  Loss, regret, heartbreak, healing, learning to live with our new “friend” grief, desperation, anticipation, frustration, shock, joy, thankfulness all in the last 6 months.  We have experienced both endings of CF.  Being by Melanie’s side as her lungs slowly stopped working with no hope of getting new lungs to give her a second chance to being with Rosie all the way to the doors of the surgical suite where she would receive new lungs and a second change at life. I’m not sure the human brain is capable of processing all of the emotions that come along with what we have lived through the last 6 months.  At least mine is not.  A few days after Rosie’s transplant, I went to the apartment to take a nap.  When I woke up I was disoriented, something that has only happen one other time in my life.  I had to remember where I was, then it hit me that Rosie has new lungs.  It’s not a normal thing to think your child has lungs that belonged to someone else. I have looked at the x-rays and the scan that showed blood flow into every nook and cranny of her new lungs.  I have watched the first bronch through the window of her CICU room.  I’ve listened to the air moving beautifully through her new lungs and watched her chest rise and fall so slowly that I worried she might not be breathing at all. There is a big difference between 44 breaths per minute and 15!  I’ve helped change her dressing everyday, was there when all four chest tubes came out at the same time and when she was extubated. I’ve been by her side cheering her on. Telling her everyday will get easier.

And surrounding the joy that my Rosie has her new lungs, I think of the person who gave them to her.  I want to know who they were, what happened to them.  Mostly I want to thank the family for the decision they made.  I know all too well the pain they are going through.  I don’t know how old the donor was but they were someones child.  A mother and father have lost their son or daughter too soon and I know that pain. I can’t find the right words to say.  Thank you doesn’t even come close to being enough.  I hope the family will be open to meeting us one day. I hope they will have the chance to hear Rosie sing with their child’s lungs.  It’s an amazing gift that can never be repaid.  Only by Rosie living life to the fullest and chasing all her dreams can we being to honor this gift.

One week, 7 days…So much has happened.  I’m sure it will take a while for my mind to fully absorb everything.  Rosie is up walking without the need for supplemental oxygen. She walks a little further everyday. She has pink lips and rosy cheeks.  Her nails are pink and the clubbing in her fingertips is going away.  I can’t wait to see her up and moving without any help.  Her voice sounds so strong and healthy.  I can’t wait to hear her sing!

One thought on “One Week

  1. I am so happy for you and Rosie and your family. I lost my 26 yr old nephew to CF complications on May 18 so know what you went through with Melanie.

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