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

So Long September

Submitted by Nicole on 9/28/2012

Fragile

Labor Day weekend I was quickly reminded how fragile our lives are with Wrenn’s condition.  The reality: In the blink of an eye, things can go from perfect to tragic at any given moment.

It all started at our GI appointment in June. The doctor looked at her growth chart and decided that Wrenn (at 19 pounds and 26 months old) needed more calories to gain weight. I admit, she’s not a great eater and won’t drink a ton at one sitting but I don’t know many toddlers who eat that great in general.  Nutrition is important for Wrenn so she can grow with those large new lungs she received two years ago. (September 23^nd)  So I do take her GI appointments very seriously.

However, sometimes after trying what the GI doctor says, life becomes more miserable for everybody involved.  He wanted Wrenn to be fed for eight hours straight while she slept (continuous feeds) and then three additional feeds during the day.  What I found wasn’t surprising; she stopped eating solid foods during the day and at night, and woke up every hour because she was miserable.    

At our next follow-up appointment in July we were told that Wrenn had gained one pound from all of this, which I felt was great, but the GI doctor got out her growth chart again and compared her to everybody else.  He told me she needed higher amounts at night and increased her volume of formula during the day as well. Wrenn didn’t agree with either plan and so neither did Mommy. After trying this for two weeks, I cancelled our next follow-up appointment and regrouped.

Three weeks ago, I pulled the plug.  I decided to stop all G tube feeds during the day and see how much she’d eat and drink on her own.  I did keep the eight hours of feeds going at night to make up for any lost calories during the day.  She ate and drank a little more during the day but it wasn’t the result I wanted.  So two weeks later I quit the night feeds as well.  Wrenn’s therapist had said that night feeds can greatly affect their appetite during the day and so I went all the way with my new plan.  I decided Wrenn was capable in chewing and drinking—the two things she’d never experienced on her own was getting hungry, and satisfying that feeling to becoming full.  I felt it was time she learned this natural course of events.

The second problem we were having was that her labs in June showed Wrenn had very low magnesium levels and iron.  The GI doctor said she was anemic.  What I realized right away was that her new formula (not soy anymore since she’s lactose intolerant) contained a ton of iron, where her new formula (Neocate Jr.)—(the stuff I just quit) barely contained any iron.  The GI doctor tested Wrenn’s stools and one out of three came back positive for containing blood. (Sometimes you can’t see this and a test is the only way to know for sure). This wasn’t a good thing and so he introduced iron supplementation into her diet once daily.     

Of course, we don’t do anything without first contacting St. Louis to make sure the new plan works well with her rejection medications.  After a few weeks, everybody was on the same page and we went with the new program for the iron supplementation.

At first I was a bit freaked when Wrenn barely ate or drank without those tube feeds but within three days she showed more interest and enjoyed a few midnight snacks.  I counted the number of wet diapers and noticed her stools had changed form but still all over the map as far as frequency and consistency. 

Feeding time has always been the most challenging part with a kid who had to learn to eat and drink at ten months old.  It’s a long, frustrating process and it’s very important that the patient, the doctor and parent be on the exact same page.  This isn’t an area that St. Louis gets too involved in—they leave it up to us and our local GI doctor to figure it out.

I decided in the long run that it was worth Wrenn losing a pound or two for that first month or two to stick with the new program and see if she starts to eat bigger meals and more often.  So far she’s not lost any weight and seems to be much happier and less gassy without all the formula.  She’s sleeping through the night too, which hasn’t happened since we lived in St. Louis.

When Wrenn was having issues with her prolapsed rectum we watched her diapers very closely.  It’s not normal for toddlers to have 10 to 12 diapers a day and that was Wrenn’s norm for a long time.  Once she was on the Flagyl, we went down to three diapers daily and it all seemed better.  The GI doctor told me that when she starts having gas pain and several diapers to call him so we can have her come in or do the Flagyl again. 

Here’s the problem—long term use of Flagyl causes neurological issues. So it’s very important that I know for sure that she’s in need of this drug.  Last Thursday and Friday she was up to 12 diapers a day and there was no rhyme or reason but she was on the 7^th day of eating at her own pace with my new agenda.  I was getting worried and on Saturday morning called the GI doctor on call and asked for Flagyl to be called in to the pharmacy.  This doctor said something to me that I had thought in the back of my mind but had kept in the back of my mind for obvious reasons.  He said, if Wrenn’s in need of Flagyl every couple of weeks, which isn’t the norm, she probably has an underlying issue that is masked by the drug we’re giving her.  The scary word came up and it made me realize how fragile our lives are with Wrenn’s condition. 

“I have seen this many times, parents think their kid is lactose intolerant and has a GI bacterial build up and what they actually have is an intestinal cancer—which is often caused by the two drugs she takes for rejection called Cellcept and Prograf.”

My heart stopped beating.  The doctor then asked me if the transplant team tested for cancers post transplant and I said yes but wasn’t sure if they tested for the one to which he was referring.  You can imagine my anxiety that this question was hovering over me on a holiday weekend. It was going to be a long three days until Tuesday morning when I’d be able to get any answers from the transplant team.

My family and close friends were livid that the doctor on call (a doctor in the practice who had never seen Wrenn as his own patient) suggested this to me on a Saturday morning but I wasn’t mad at him at all.  When we signed on for Wrenn’s transplant we went over a thick booklet with our transplant coordinator stating every single thing that can go wrong with Wrenn post transplant.  We have heard it all and it just depends what path Wrenn is going to take.  Cancer was something I knew could happen but generally it happens with LONG term usage.  The odds are this wasn’t Wrenn’s GI issue but again, every kid is different and at that very moment in time, I didn’t have the answers to this doctor's questions. 

I’m almost certain my daughter was on his mind for much of the weekend. It’s not every day you have a double lung transplant patient at her tender age and it’s a call you don’t forget.  He was very eager to call the transplant team and did so first thing Tuesday morning.  

Unable to think about anything else that morning I got in touch with a few transplant mommies and they weren’t sure either.  This is the moment that you recall what your coordinator tells you: Worry about what is, NOT what might be.  I chanted that all day to myself.  Feeling the need to do something I sat down and wrote a very detailed email to my transplant coordinator, Laura.  I knew it was a holiday but prayed she’d see the panic in my words and reply, giving me something positive thoughts to get through the weekend.  After sending that email I hugged Tanner and Wrenn and realized how fast it could all go downhill. I spent the rest of the day not leaving their sides.  This was all part of the rollercoaster ride I agreed to and I was doing it without a seat belt. 

Even though my mind raced with good and bad thoughts I was on edge and the day for all of us was somber. Wrenn looked so good and although I couldn’t imagine this being a possibility, I couldn’t be certain.  It was an exhausting day mentally and I was tired so I turned in early and when I woke up on Sunday morning I had an email from the transplant coordinator in my mailbox.  I read the email to Jason and I again started to breathe without telling myself to do so.  The test the GI doctor on call suggested had always been negative for Wrenn and Laura said that Wrenn, in their eyes, has been great post transplant.  It was reassurance I needed and on Monday she confirmed this with the GI doctor.  All cancer tests so far have come back negative! J

It amazes me how level I remain when faced with things that are so out of my control.   I was so thankful my transplant coordinator wrote me back so soon and was so grateful for her compassion concerning my fears.  It is out of character for the team to write during a weekend and well, it just shows we have good people around us who care about our family and especially baby Wrenn.

It’s such a life lesson sometimes to experience the reality check like I did.  It’s been such a wonderful summer and after a while you forget what you’ve been through and then something reminds you that life can turn upside down in the blink of an eye.  Life really is a gift and I feel God reminds me often and I am thankful for that. 

We head to St. Louis for Wrenn’s two year checkup on Monday (today). This will be the first appointment where a bronc is NOT required but is scheduled just in case.  Our day on Monday is packed—labs, immunology doctor, Infectious disease doctor (this is new to all transplant recipients), pulmonary doctor, transplant gastro doctor, then after lunch she will be put under and have her PFT’s done (infant pulmonary tests to make sure both lungs are doing well), cardio station, x-rays and CT scans.   Our day goes from 7AM to 5:30PM. 

It’s scary knowing we don’t have a bronc, because we leave wondering if her lungs are rejecting but unless they take a biopsy of the specific spot that is rejecting, the data is skewed anyway.  It’s nice knowing she might not have to have one and put her through the risks of infections or additional complications.

On a great note, we saw the pulmonary doctor at VCU in early August and he was very pleased with her and so we won’t see him again until January. 

June, July and August are the best months for our family and we feel the most normal as we blend in with the world—going out in public and doing fun things like Busch Gardens, going to dinner, playing in the pools at the water park, Water Country USA, shopping with Mommy and playing outside in general.  We rarely mask Wrenn in the summer because it’s not a high risk time for her but we are always aware of good hand washing and use bottles and bottles of hand sanitizer.  We change out Wrenn and Tanner’s clothes if they’ve been playing in a germy area like a park or with other kids (which isn’t very often) and they take showers right away.

As soon as September 1^st arrives we are on high alert.  We’ll still go out to eat but will eat outside when possible and at odd hours of the week like 4PM, not 6PM.  We won’t visit too many public places and play dates will be less often.  Wrenn and Tanner received their flu shots in mid-September and we will get our shots in early October. Wrenn gets a booster in early January.

This summer Tanner took a hip hop class and I explained to all the parents our situation with Wrenn and asked as I handed out my phone number, to let me know if their child went home sick, or had been sick as a courtesy for keeping Tanner and Wrenn safe in our crazy world of germs.  Most people, I should say, ALL people we explain our situation to are compassionate with what we have to go through and have been wonderful in communicating. Obviously, summer isn’t high risk but as we move forward this will be a common speech as Tanner explores his own world with other children. Luckily, he won’t start school until next fall.  That’s a whole new blog J

Wrenn is a smart little cookie. She loves to finish off Tanner’s food. She loves fried eggs with buttered toast. She loves all fruit and salad and still prefers water to anything else for liquid. She loves shoes, hats and purses and is very into her baby dolls right now. She is a climber and wants to be around me at all times of the day, helping me cook, clean, eat, watch TV: she is my little clone. 

Tanner and Wrenn are so close and play well together.  When she takes a nap he wakes her up so they can keep playing (Grrrrr!).  They wrestle, play the Wii together, dance, sing, chase one another around the house, jump on the bed, giggle in the backseat of the car and fight over TV shows.  They melt my heart every day and I am soooooo lucky that I get to watch them as they continue to grow close. 

There was one day in June I didn’t have a sitter available and I had to take Tanner with me to get Wrenn’s labs drawn.  He was sitting in the seat next to Wrenn and the two nurses tried to cover Wrenn so he wouldn’t see but he heard her cry and knew something wasn’t much fun for his little sister.  It was the time they had a hard time drawing blood and so that made it even worse for all of us.  When she was all done he came over to Wrenn and said, “Are you okay Wrenn?”  And he rubbed her head. Clearly, he was in tune to her pain and it put tears in my eyes.  Now when I mention I have to take Wrenn in for monthly labs he says, ‘That hurts Wrenn.”  SIGH!!!

Although, we’ve been lucky.  Wrenn usually needs labs drawn once a month and they are so good at this lab we go to that it’s just one prick and she’s done.  She doesn’t even cry anymore.  She spends so much time in the doctor offices that her favorite toy to pass along the time is playing with the latex gloves.  So when we finish drawing blood she asked for a glove as her reward.  The lab said they could only give her a stuffed toy, which she threw on the floor because she preferred the glove! LOL

Wrenn’s two year re-birth (when she received her new lungs from that wonderful donor) was September 23^rd.  It is a bitter sweet day for our family and I’m sure still is for all those who were along for our journey as we waited daily for that one phone call.  We don’t throw a party on the anniversary of her surgery. In many ways I feel this is a day to reflect, thank God for her good health, and remember and thank our donor even if it’s through prayers.  I also feel in many ways that celebrating will jinx her good fortune and since I’m very superstitious, I prefer to celebrate quietly.  

I greatly appreciate the emails we receive from our cyber family. You guys are the heart and soul of Wrenn’s success and give our family the strength to get through the rough days.  I am so happy to say that things are going well for Wrenn and as we gear up for her major check up Monday in St. Louis, I hope to give you great news.

Xoxo Nicole