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Tuesday, October 16, 2012

The Road to St. Louis

Submitted by Nicole on 10/12/12

 As we drove past the Bush Baseball Stadium in St. Louis, Missouri, Sunday afternoon I recalled the time I attended a game on one Sunday in early September—Wrenn’s worst day—the day she had oxygen saturations in the 30’s and 40’s—the day she was put on the paralytic (two weeks prior to receiving her new lungs).  It was a day where the sibling playroom at Children’s was closed because of a holiday weekend and Tanner had to stay with us in the NICU—a task he hated and made sure everybody around the vicinity knew it. How did we deal with a sibling who was miserable and another one who was near death?  We made the difficult decision to walk away from the hospital for a few hours and let the people we had entrusted with Wrenn to do their jobs.

I looked at Dr. Hoft with tears in my eyes and said, “I don’t know what to do—please tell me what I should do.”  Tanner was screaming and throwing a fit and we were literally all sitting on the floor in the hallway of the NICU because Wrenn couldn’t stand any noise or people in her room.  Moments prior to speaking with Dr. Hoft I had entered Wrenn’s room and let her know that mommy was there and held her hand; her saturations dove from 60 to 30 FAST.  I wasn’t helping and I couldn’t bear to be the cause of her decline.  Holding Wrenn’s hand and being with her wasn’t even an option at that point.  I was completely helpless and it was the worst feeling in the world.

Dr. Hoft looked at me and replied, “If you can’t stand to watch her take however long to come back up to normal saturations, don’t stay.  You can call us as much as you want to check on her.  It’s okay to go—nobody’s going to judge you.  Whatever keeps you calm and sane right now is what you need to do.” 

Feeling empty and sad I nodded and decided to I had to do what was best at the moment.  So I did.  We did.  We left.  Nothing at that moment felt right or wrong—the sensation—I was numb.

The Ronald McDonald house had given us advance tickets to a Cardinals baseball game and we had planned on going that afternoon as long as Wrenn was doing okay.  I didn’t realize I’d be going as a zombie.  I don’t recall the team they played, or who won or lost.  My body was there but my mind was with Wrenn.  It was almost as if I were in two places at the same time.  It was the best I could do at the moment—praying, hoping and believing that it would all be okay.  We didn’t get to the game on time and we didn’t stay to the end.  It was about having something to keep my mind off of watching a monitor for those unknown hours—where we went really didn’t matter.

A couple of hours later we walked back into the NICU and Wrenn was sating at 100 percent. Perfect.  She wasn’t able to move now because of the paralytic but she was stable, breathing steady and pink again—no longer a Smurf! Several doctors and nurses had painfully watched that monitor over the course of those four hours—praying, hoping, believing she’d come back up and finally she did—VERY SLOWLY and I was told the emotion in the room was very somber, very silent and very tense— I felt I had made the right decision leaving.

The next day they performed a brain scan to make sure Wrenn didn’t have any bleed outs from losing so much oxygen to the brain.  Things were so close to going so bad and every day I felt my chest getting tighter and tighter as we waited for the perfect lungs. I don’t know how she passed that test but she was still perfect, I thought, I hoped, I prayed.  Only time would tell and it would be many months later when we’d know for sure if there was damage from those crashes in oxygen to her brain.

A few days ago, on Sunday afternoon, we drove by our old Loft’s in the city and I thought of all the trips in and out of the parking garage we took to the hospital—mostly good visits.  I like to think now when we return to St. Louis we’re just visiting our extended family of specialists—the medical team who helped all of us hold it together and who gave my daughter a fighting chance.

Reflecting is something I like to do to remind myself that merely one day of celebration isn’t really what it’s all about.  I prefer to eat a little piece of cake 364 days a year.  Everyday there’s a wonderful reason to celebrate Wrenn’s life. A reminder that we’re all given a gift each day we breathe in air.

This check-up was Wrenn’s TWO year post-transplant visit.  Two years ago, on that one horrible day, I never knew I’d be smiling on the way home from such a great visit with the transplant team.  As a positive person I had hoped to see only good things for Wrenn’s future but we were prepped early on to realize that it’s all a gamble.  I’m glad Lady Luck’s on our side and I truly hope she never leaves.

Monday morning in St. Louis was a busy day for Wrenn.  The lab tech took blood from three veins and filled more tubes than I’d ever seen in history—even the lab tech said Wrenn was getting a lot of tests done at one time. I knew that Wrenn looked great, had been acting great, sounded great lung wise and appeared to be super in every aspect of her being, but still, I worry the rug might be pulled from underneath of us at any given moment.

We had our first appointment with GI.  They were very happy that Wrenn had gained three pounds since April.  They asked me to submit a diary of her food and drink intake to make sure she’s getting enough calories to thrive and/or maintain her weight.  They were fine that we quit the g tube feeds and said as long as Wrenn holds her own, we can continue on this natural path with her meals. 

The CDC doctor asked a lot of questions about her shots and our schedule for the next six months with immunizations.  She will analyze test results and will work along the same lines as our immunologist in balancing Wrenn’s suppression and immune system.  She clarified a few things for us.  She said that they feel pretty confident that this year’s flu vaccination is good and should cover many strains of the flu.  She said that the ONLY thing that keeps Wrenn protected from getting the flu is a mask—but in other words, when it’s not flu season, (like in the summer months) a mask is pretty useless—germs in general are passed via touch and so good hand washing and sanitizer is our best friend!  We have a few additional vaccinations to get in the next three months and they will then test her antibodies to make sure she’s building up immunity to them.

The Immunologist said that Wrenn’s levels were 404—which is GREAT!  Wrenn is making her own anti-bodies from the shots (vaccinations) she receives and since she’s not been sick since before transplant (knock on wood)—she doesn’t need IVIG (which is a monthly infusion, takes about 2-4 hours to administer and is just a royal pain in the butt).  We will check her levels at our next visit to St. Louis in April.

The pulmonary team said Wrenn looked and sounded great!  They said all her cancer tests and levels looked wonderful.  Her VQ tests were spot on and so Wrenn didn’t need a bronc for this visit.  They all noticed she was very busy, talkative, bossy, and a climber—everybody cringed when she jumped off the chairs.

Wrenn’s Eco and CT scan looked great and so no further exams/tests were needed.

This was the BEST visit a transplant kid could ask for.  Leaving after a one day visit!!!  AMEN!

One of the things they are going to do is follow up with a few more stool tests for fat content and parasites—mostly to cover everything that could be causing Wrenn’s multiple diapers.  They said that because she eats so healthy the food could be the cause and as she gets older her body will adjust to control that better—this would be the best outcome, meaning no problems just mother nature figuring it all out.  I don’t feel the doctors think we will find an underlying problem/issue but they are checking all the tests from their list to make sure they cross everything off their list.

We were able to visit the NICU and nurse Beth—she had taken care of Wrenn a lot while we waited on lungs.  Dr. Barb from the NICU popped in to clinic for a while and we also visited with Dr. Hamvas, our genetic scientist who continues to research lungs and stem cell growth, which is one of his biggest projects. 

Tanner had a great time at the Sibling Playroom with his buddy Mr. Pat—who looked worn out from the day when I picked Tanner up at 6:15PM. We love seeing our Playroom family because they were such a big part of Tanner’s world while we were in St. Louis—and the fact that Tanner enjoys himself when he visits—proves that they did an amazing job.  Love you Pat and Rita!

Therapy for Wrenn was a little different this visit.  Rebecca, Wrenn’s ongoing therapist since the NICU, had Wrenn walk in a circle and monitored the oxygen saturations.  Wrenn did a great job and walked for six minutes, which the therapist said was amazing—most kids get bored walking in a circle but not my kid—she’s the little energizer bunny! She proudly wore her mask, held her purse in her hand and showed off her new Minnie Mouse boots while showing off those perfect oxygen saturations.

Rebecca had Wrenn climb up on the ropes, jump on the trampoline, slide down slides, show off her words and colors, toss the ball around, eat and drink while walking and laughing and skip to the next station as she sipped from a tea cup.   Developmentally, Wrenn is ahead and thriving.  Something I never ever thought would be possible on that one dark day when I attended a baseball game two years ago.  Oh, what joy it brings me to witness a daily miracle.  I always say we’re both cursed and blessed.  As long as we have both—I can’t really complain!

I love hearing that the continued prayers are still out there for our family and especially Tanner and Wrenn.  There’s a reason she’s doing so well and I have to accredit everybody for their faith—you have no idea what it means to our family and I’m so glad I’m able to share her progress with you all!

Xoxo nicole


Kevin Hakney on October 28, 2016 at 8:06 AM said...

Contents of this website are good and appreciative.

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