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Wednesday, October 19, 2011

The Next Phase

Sent in by Nicole 10-18-2011

Today I spoke to third year medical students at Washington University. The class is learning about palliative care and our journey with Wrenn. I enjoy telling our story and answering questions but it’s always such an emotional roller coaster going back. And yet Dr. Rosenbaum prompts me to look into the unknown, which is, after all, the point of the speaking engagement—where we will end up and how our family plans on dealing with Wrenn’s long term care.

I did a better job speaking this time. I think it had to do with the fact that everybody in the room was wearing a white coat. I'm so used to communicating with doctors on both a professional and personal level that I felt more at ease. It could be that a couple more months have passed and I'm much stronger now--even though I shed a few tears it was easier to gather myself. I also felt better prepared and hope that each student took something away from our meeting. Unless these students have lived on both sides they can only imagine what goes on with a family when dealing with a chronic illness.

We were somewhat blindsided in September but we have rerouted our negative events with positive news: Last Monday Wrenn had all of her lung function tests done; her ONE YEAR post-transplant examination. 

The day started out at 7:30am-- labs, then clinic with the transplant coordinator and the pulmonologist, and then physical therapy with Rebecca. Her pulmonologist shook his head and watched as Wrenn jumped on the table. We all discussed where we were one year ago--facing issue after issue for 3 months straight. They are cancelling her physical therapy sessions because she is all caught up. We all knew at that moment how lucky we were to see her so healthy and thriving. She is one of the lucky ones. After a quick lunch we were off to the Ambulatory Procedure Center for an x-ray and then Wrenn was sedated her for her Bronch, High Resoluation Chest CT & CXR, Ventiliation Perfusion Scan, Echo and Infant Pulmonary Function tests. While she was under they stuck her in four places to find a good vein for an IV. She did great with the sedation and by 6:30pm was resting at home. Tanner spent the entire day at the Sibling Daycare Room so we could focus on Wrenn's busy day.

While we waited for Wrenn we saw so many people who had worked with our family. In a way I couldn't have planned a better goodbye to St. Louis. We ran into her surgeon, Dr Huddleston, who is leaving Children's and going to a nearby hospital. I already told our transplant team that should Wrenn need additional surgeries we'd be following him, especially since he's done so many procedures on her and knows her best. He is an excellent surgeon and we feel her care would best be furthered with his expertise. Dr. Huddleston saw Wrenn for the first time since the transplant Christmas party. He peeked into the stroller and she looked up at him and started to cry. I felt so bad but I smiled and said, "ahh, isn't that sweet, Dr. Huddleston, she wants you to hear how great her lungs work." Of course he smiled.

Her G-tube Surgeon, Dr. Segura is leaving Children's as well. Even though we usually do routine check-ups as needed, he is part of our 'original' team and so I'm sad to be passed on to another colleague. He worked with Wrenn closely on her feeding issues and is always accessible via email for questions or concerns. I'm sure he will continue to follow her progress. 

Throughout the day we saw her Occupational Therapist Renee from the NICU, some of our 7 west team, the chaplain who spent many days listening to my woes and a primary nurse who now works on the transport team. It seemed as though everybody from the beginning was there to see how well Wrenn was doing and to of course say goodbye. I have about 7 more people I want to hug before I leave and will do so in the coming weeks. 

The following day, we arrived at the hospital at 6:15AM for her Bronch. Again she was sedated but they found the vein on the first try-thank goodness. The pulmonologist, Dr. Michaelson used a large scope for the procedure like last time and retrieved good samples. We were hoping for a call later that afternoon but the results had not come in yet.

Wednesday morning we headed to Virginia and while roaming the mountains of West Virginia the transplant coordinator called with the results; "So far Wrenn’s bronch, lung tests and bloodwork looks phenomenal," she said. "All the important results are in--only a few minor ones left. Miss Wrenn is doing great!" Those are the words I hope to hear for many years to come. What happens now is that we won't return to St. Louis (knock on wood) for six more months. We will have labs drawn and check-ups in clinic but there's a chance she won't have a bronch done if all looks great in the lung function tests. Without a lung biopsy we are never sure if rejection is lingering but the transplant team examines blood-work and symptoms to conduct a biopsy. In a way having peace of mind is worth having the biopsy done, otherwise we're left wondering if her lungs are getting worse. In a way I'm losing my security blanket and that will be another mountain to overcome--trusting again that all is okay. I remind myself what the transplant team tells me at each appointment: React to what is, and NOT to what might be. 

There is one man I never got to hug and I wish I had while living here in St. Louis. This is a story I've told so many people over the last twelve months and now I'm telling it to my extended internet family. My husband had been let go just two weeks prior to Wrenn's birth--luckily he had another job waiting for him in Virginia; a GOOD opportunity but as Wrenn remained in the NICU in Orlando and then when we temporarily relocated to St. Louis, the job had quickly disappeared. We then became part of the 'system' and just prayed that things would work out and that Wrenn would make it to transplant sooner rather than later.

As we approached early September 2010 Jason was offered a job by a man he had never met.  A wonderful man who gave Jason an opportunity in an industry with which he was unfamiliar. Jason was given a salary, but with flexible hours to learn a new business while spending time with his family in St. Louis. This job came at a time when our family was unable to even focus on finding work. Through all the stress we could breathe a tad easier while we continued down the rocky road. I have called this story one of our blessings. This man who put my husband on his personal payroll will never know what his kindness meant to us in such a severe time of need where our entire lives were falling apart before everybody's eyes. He did for us what so many people couldn't do-HELP! I will continue to tell this beautiful story for as long as I live because it is a story worth telling--the humanity and selflessness of this person (along with his team) is uplifting to other families who need to hear a story as they hit rock bottom. I tell them just when you have no idea how you're going to do it--BAM an act of kindness makes a terribly stressful situation just a bit more tolerable. I've seen that when one door closes, another one is sure to open. Timing is everything and good people have continued to enter our lives at different times to help us along as we continue our journey. To this St. Louis man, one day I plan on giving you a big ole' southern hug for what you did for our family. I promise to continue to tell of your kindness and thank you from the bottom of my heart for what you did for us. You blessed our family and I owe you more than you know!

Another blessing I'd love to tell you about along our travels here in St. Louis was also back in September of 2010. I was having a very bad day at Wrenn's bedside and I looked up and asked God to just give me a sign that everything would be okay--that Wrenn would be alright no matter how horrible things looked at that moment. It was around noon then, and I decided to get some lunch. I called down to the cafeteria and went to the break room but it was full. I then headed to the waiting room of the NICU to wait for my food and while sitting there a woman approached me; she said my full name and knew exactly who I was from this blog. She caught me off guard and introduced herself as well as her then two and a half year old daughter who had undergone a double lung transplant two years ago at Children's. The little girl was bouncing all over the NICU waiting room while chomping down a bag of Cheetos. She looked fantastic! I couldn't even comprehend what the mom was telling me as I stared at her little blessing who was playing with her twin brother in the seat next to me. Was this the sign I had so desperately prayed for? I decided it was. Just moments after asking, I felt as though I had received an answer. Call it a coincidence if you want but it gave me the strength for the next couple of weeks to fight as hard as Wrenn. From that point on I kept my eye on the prize because of that chance meeting and continued to ask for more blessings.

It is time to leave St. Louis. We can always make more money but if we lose our health we have nothing. I'll continue to tell these stories that we experienced here in Missouri as well as those we encounter in Virginia. I hope to inspire people to believe that when the sky falls the sun does eventually shine through. The ride for us continues but as long as I hold on real tight I know I can get through anything.

While driving back from Virginia yesterday I realized that it will all be okay. Even answers I don't have yet will come in time. Questions I have now will have answers when appropriate. And people who come into our lives will enter with meaning and purpose. Nobody will ever know what we endured here in St. Louis--maybe only those families who share the commonality of receiving a double lung transplant will relate or fully understand. I will continue to thank God for every single blessing because we have received many of them.

Wrenn is doing great in every aspect of her development. Tanner has also come around and has become quite the little helper and really adores his little sister. I believe we have been catching our tails and will continue to do so until December. I see January being a turning point for our family as a whole and feel the new-year will bring us current.

Once we arrive in Virginia the transplant team wants Wrenn to be seen by her new immunologist, pulmonologist and pediatrician. They want the new Virginia doctors to see 'healthy' Wrenn so they'll know at each appointment how she looks compared to that first visit. Needless to say our schedules are already getting busy. We will have to find a new lab at the Children's hospital in Richmond and new therapists who will come to our home. Switching everything over and changing to a new pharmacy is a ton of work. Just thinking about everything I need to do paper trail wise, appointment wise and insurance wise overwhelms me. I’ve made a list and just cross off each one as I get it all done. I will of course post photos and updates on Wrenn as both kids adjust to a new normal in another but more familiar state. Our extended family in St. Louis (the transplant team) and our extended family on this blog are very important to our family as we move into the next phase.

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