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Friday, May 18, 2012

Seriously, God, I Have My Limits

Sent in by Nicole 5/17/2012

“SERIOUSLY, God, I have my limits,” I mumbled under my breath.   I looked up at Jason in the Emergency Room as Wrenn screamed her head off while being tortured by the ER team.  They struggled to find a vein for an IV.  “I need those guardian angels back because I can’t watch this!”  The second team came in (veterans, they called themselves) and I hid my head as they tried a fifth and sixth attempt on her little ankles.  I looked up—NOTHING!!! I was so angry and just tried to hold my composure as I again looked away and caressed Wrenn’s sweaty little head.  Her veins were dry and the only liquid draining from anywhere in the room was from my eyes—I finally ended the torture.  

AS I write my blog entry I inhale deeply while thinking about the last six months.  A sigh of relief, finally, but I still feel the tension in my shoulders from all the events that took place.  When I signed up for Wrenn’s double lung transplant, I knew we’d be exchanging one set of problems for new ones but I’m the type of person where I do well if I know what I’m dealing with—then I can battle forward and ultimately conquer any obstacle in my way.  For the last two years, on more than one occasion, Wrenn has been deemed a ‘mystery’ child with a couple of curves that were thrown her way. I’ve had doctors in meetings throw up their arms and say, “I’m just damn scared of the girl.  I don’t know what to do.”   I’ve seen gray hairs appear before my eyes on some of medicine's finest.   I pray that we’re done with the mysteries for a while.

WHEN Wrenn was born she breathed REALLY fast.  She was on 8 liters of oxygen and she was fed a thick mixture of breast milk and milk proteins to help plump her up, so that the transplant team in St. Louis would accept her into the transplant program.  What I can tell you is that her system (Gastro) was a MESS back then.  Her digestive system was working just as hard as her lungs and everything in the body had a cause and effect, especially when organs are working really hard or not in sync.  Her body back then was on Fight or Flight and it reacted to keep her alive.   

ONCE Wrenn arrived in St. Louis in July 2010, her heart and lungs weren’t working quite as hard thanks to sedation and intubation but her digestive system struggled.  Wrenn had loose stools, daily vomiting, minimal weight gain— the list goes on. All signs of a very sick child in desperate need of a double lung transplant. 

EVEN though Wrenn received her transplant in September, her GI issues continued; Bloating, loose watery stools, cramping, discomfort with gas and frequent bowl movements confused doctors and baffled nurses.  To most, it was an easy diagnosis; every medication she took had terrible side effects; cancer, rash, loose stools, frequent stools, cramping, nausea, itching, sun sensitivity, stunted growth—the list went on and on to the point of us NOT wanting to finish reading the risks for fear of what COULD happen with long term use of the rejection drugs. 

IN December of 2010, Wrenn appeared stable when she came home but feeds were always a struggle with the G-Tube.  It was a guessing game for us to know how much was enough, how often, how to introduce food and when?  What would irritate her, would she choke while trying food or worse, aspirate into her new lungs?  It was a process where walking on egg shells became a daily routine. 
GI wise, Wrenn had good and bad days but the loose stools were always a part of our daily life.  We chalked them up to the Milk of Magnesia she took 3 times a day to replace the magnesium the rejection medications depleted in her body.  She had some solid stools, but frequent ones for sure and her weight was at a plateau, which wasn’t good for her new lungs, which needed good nutrition to keep them healthy and strong.  To give you perspective on how rejection drugs affect a baby/toddler—Wrenn is the size of a 14 month old baby, even though she is 25 months old.  She is STILL wearing size 3 pampers (she came home from the hospital wearing the same size over a year ago) and as of 10 days ago, only weighs roughly 18 pounds. 

ONCE we moved back to Virginia things were stable and OKAY for Wrenn standards.  She hadn’t gotten sick, wasn’t constipated (that’s for sure), and we were in what we thought was a GOOD place. HAHA!  Never blink when it’s Wrenn.

ALMOST acutely, back in early February, Wrenn started having painful bowl movements, gas and diarrhea (yep, worse than before) and so I thought she had an intestinal bug.  I waited eight days and she didn’t seem to have fewer diaper changes.  I waited two more days and called the transplant team.  They ordered a ton of stool tests to be done to see what type of infection she was fighting.  Two weeks later her urine and stool tests came back negative.  She was perfect according to the tests, but still not doing well.  I tried for the next three months to take away foods that might have been the problem like milk, cheese, wheat, fruit, etc.  But nothing worked.  Then I thought that maybe she was getting too much liquid and her body was rejecting it (the colon wasn’t able to hold in the nutrition), but that wasn’t helping either and only made her lose weight for the lack of feeds during the day).

AFTER two more months of this nightmare routine of trying new things and taking things away, Wrenn was worse with nightly crying episodes of pain and struggling to let out gas.  The lack of sleep made both of us very cranky and I was very frustrated.  The ONLY conclusion I could come up with was that her antibiotic was bothering her.  She takes this broad spectrum antibiotic for life, Monday, Wednesday and Friday to ward off common bacterial issues like ear infections etc.  It’s a preventative measure and a MUST for her survival.  I knew that antibiotics were hard on the digestive system (they were on Tanner) and it didn’t help that she HATED yogurt.  In fact, dairy products only made her diapers worse.    

I wasn’t sure how but I knew her gut was done as far as good bacteria.  What I didn’t realize at the time was that I needed new eyes to help solve her issue.  I accept that sometimes it’s best to hit rock bottom so you can float back up to the top.  I feel like this is learning the hard way but sometimes it’s the ONLY way.  As long as we get to a better place, it’s all worth it.

HOW we finally reached rock bottom:  In early March Wrenn had two terrible nights of screaming episodes and we did everything possible to make her better but nothing worked.  Finally, Jason gave up sleeping and brought her downstairs.  He fed her some soy milk, hoping she might be happier with a little food in her belly and to help push out some trapped gas since her pain seemed to be in the lower intestines.  Well, it worked!  After that huge bowl movement, he came up stairs with Wrenn in his arms, turned on the light and said, “I think we need to take Wrenn to the pediatrician.”  I looked at him with tired eyes and assumed her diaper rash had gotten worse but what I saw was even more horrible than some minor irritation.  I glanced down at Wenn’s bare bottom and saw that a big red, blooming flower had erupted from her tushie.  “No,” I said, catching my breath and jumping out of bed like a crazy person, “get her dressed; we’re going to the ER!” 

MY first instinct was that she had pushed out her intestines, which I’d never seen in real life outside of a body.  Needless to say, I was freaking out! I didn’t even know where to take her since we’d not been in Virginia long enough to prepare for an emergency type situation.

IT was a crazy 20 minutes.  My cell phone was dead, Jason’s phone was missing at the moment, Tanner was asleep, and neither of our parents would answer their cell phones so we could tell them what was going on.  I finally found a cord, plugged in my phone and called the pediatrician, who told us to go straight to MCV/VCU Children’s ER.  They told us she’d be more comfortable in an ambulance and to keep the area damp.  (The ambulance was 5 minutes away but took 30 minutes to get to our house—still trying to figure that one out!)

MY imagination went to the worst places—when you live in a Children’s Hospital for a year you fear a LOT more.   I kept thinking surgery, possible infections; long term issues that would make her need more surgeries and constant pain without a cure.  I couldn’t stop worrying as I followed the ambulance to the hospital.   Once we arrived they took us back to a private room. 

WE described what had happened to the ER doctor and he kept asking if Wrenn had ever been tested for CF (Cystic Fibrosis).  I immediately assumed that CF was among the first test they had done when she was born with all her respiratory issues but they told me that a blood test isn’t as good and ONLY a sweat test is 100% accurate when testing for CF (a sweat test can’t be done in the NICU, at least it couldn’t be done for Wrenn in the shape she was in).  I started texting my friends at Winnie Palmer and told them what was going on; their support for our family continues to amaze me daily… hugs to them for being there for us through all of Wrenn’s ups and downs.

FINALLY, an hour later, the doctor was ready for the diaper to come off—apparently, the prolapsed rectum had gone back inside.  This was both good and bad.  Bad, because once it happens, there’s a better chance of it happening again and again.  Good, because she was free to go home; but what do we do if it happens again?  UGH!  The doctor told us if it doesn’t go back in within an hour to come back to the ER. Well, this sucks!  Hospitals aren’t a great place for Wrenn with her immune suppression.  She’s going to end up catching something and then to drop our lives every time this happens and rush to the ER isn’t an option.   So far we had more questions than answers.  They referred us to a very reputable GI specialist from MCV/VCU named Dr. Ted Williams. The appointment was set for that following Monday (3 days later).

WE consulted with Dr. Williams who ordered a ton of blood work to rule out allergens, Silica’s disease, immune tests, stool tests and anything else that hadn’t already been done.  He changed her intake on formula and stated his concern for her weight, which has always been a struggle.  I told him I didn’t think it was allergy related although I do see a difference with milk products. 

WRENN did okay for four weeks past that appointment but then, Sunday prior to leaving for St. Louis (mid-April) she had another incident, but luckily the prolapsed rectum went back in—no ER visit necessary.  Then the following Thursday it happened again twice and we couldn’t get it back in (April 19th).  We again had to take her to the ER and this time, she was so irritated that the ER team couldn’t get it back in either.  So, we had to have her wait for GI surgery to take a look.  Finally they decided to admit her to Peds and it wasn’t until 12 hours later that they got the prolapsed rectum back in. They had given her an IV and morphine to help; otherwise we’d still be there waiting.  The surgeons gave us a lesson on how to put it back in, but let’s face it, this isn’t the entire issue and how in the world was I ever going to have any one else watch her if this kept happening?  This is our child and our responsibility, if it means putting in rectums, then that’s what we’re going to do, but how dedicated is the rest of our family?  L  

MCV/VCU held Wrenn overnight for observation and taped her tushie shut to help with gravity.  They didn’t continue her feeds until the next morning (Saturday).  The doctors at MCV again said we needed to have Wrenn tested for CF, just to rule out Cystic Fibrosis.  I tried to wrap my head around how my child could possibly be cursed with not only the 4th diagnosed case in the world of a rare lung disease with a double mutation for ABACA3 but then, how could she possibly have CF on top of that?  WHAT A NIGHTMARE I was living at this moment!    

WE left the hospital around 2PM Saturday— unpacked from the hospital stay and then repacked our bags so we could head to St. Louis for Wrenn's 6 month check-up.   The 16 hour drive gave me plenty of time to rethink the last 3 days and I was still in a sheer state of panic.  What if this doesn’t stop happening? What if this is her life of being in constant pain and hating food and losing more weight?  The lungs seem perfect but the rest of her body is taking a beating.  I was so upset and all I could do is worry. 

DESPITE my anxiety the kids were great on the long trip.  The only incident we had was Wrenn’s G tube broke inside of her in Kentucky (luckily it wasn’t in West Virginia, where it happened before and added an extra 3.5 hours to our trip when we visited an ER).  I had a spare G-Tube, which wasn’t the right size but was perfect for a temporary fix.    

AROUND 6pm in St. Louis we had dinner and checked in to the hotel.   Wrenn was on limited food and water for the next two days, which wasn’t going to help her weight loss but we didn’t have a choice.  On Monday morning she had labs.  Sadly she was so dry they couldn’t get a vein or blood out of her at all.  It was a nightmare.  A true sign of all she’d been through and what we’d witnessed in the ER.  I wasn’t looking forward to the multiple sticks and two IV’s that were necessary for her procedures both days. 

NEXT we then headed to Immunology to see Dr. Ellis, who told us great news.  They had checked her levels and said that Wrenn’s body had more than doubled in building up her own immunity since last October.  We had stopped all the IVIG infusions throughout the winter, which meant less risk for infections and less doctor office visits. (Yeah)  This was great news and meant that Wrenn’s body was making its own antibodies and that she was thriving.  It certainly helped that she hadn’t gotten sick during flu season (knock on wood).  Dr. Ellis talked about Tanner going to school but it’s a conversation that will take place a hundred more times before he actually goes, meaning,  I just can’t say where—when—for sure.  We have to take our lives day by day and see how things are going to make such a big decision that affects our entire family. 

TRANSPLANT clinic started about 10:30am.  Both the doctor and coordinator said Wrenn looked amazing.  They were happy with the IGG numbers (From Dr. Ellis) and minus the prolapsed rectum incidents, said that Wrenn looked like a normal little girl.  Since they are a lung transplant program, (work above the waist) they wanted the GI specialist in Virginia to continue working with us on her GI issues.  I was sad that we weren’t going to get answers in St. Louis but would know all the results pulmonary-wise by Wednesday afternoon.

WRENN was put under for all her infant lung tests around 11:00am.  She came out not needing any oxygen and the results on her tests were great!  Both lungs were doing equal work and sounded great, looked great and worked great—all great news. J

AROUND 5PM that evening we met Wrenn’s old therapists from St. Louis (Kayla and Julie) for dinner at our favorite (well, Wrenn’s favorite Italian Restaurant) Zia’s.   It was so great seeing them and they loved visiting with Wrenn, who loved showing off and made them both smile.  

THE next morning we were up bright and early for Wrenn’s bronc.  Around 9AM they took her back to the OR and within an hour she was in recovery, snuggling with her puppy and blanket.  She again did great and didn’t need any oxygen post procedure.  We just had to wait for the biopsies to come back (24 hours) before heading back to Virginia. 

THAT evening we had dinner with one of Wrenn’s nurses from the NICU (Aunt Beth) and Jason’s former boss, Billy.  It was nice catching up, exchanging photos and celebrating great news with people we had shared so much with over the year and a half we had lived there.  Both Beth and Billy had seen Wrenn at her worst.  It’s great to show how she’s beating the odds so far and that God is keeping her healthy and well. 

IN between all the great news Wrenn had another prolapsed rectum.  The doctor on call told us to head to the ER and so we did.  When we arrived we checked her diaper and saw that it had gone back in. We returned to the hotel room and sat on pins and needles, worried about the long drive ahead as her GI issues continued.

WEDNESDAY morning we went to Wrenn’s last appointment at Children’s which was with her long time therapist from the NICU (Rebecca).  Rebecca evaluates Wrenn every six months to see if she needs more or less sessions (right now Wrenn has speech once a week in Virginia) and this is a nice way to make sure Wrenn’s on track developmentally.  Rebecca was amazed at how active Wrenn was.  She watched her climb up and down slides, walk over uneven surfaces, hop up onto the trampoline and jump, step down and chase and throw a ball across the room, pick out heavy toys and carry them to her own spot, giggle, smile, interact, sign, and act like a totally normal child despite all she’s been through.  Needless to say, Wrenn got straight A’s on this visit and our family couldn’t be more thankful. 

THE very next morning we got the thumbs up from the transplant team that Wrenn’s biopsies had all come back negative, NO REJECTION J  With this news we were free to head home.   

OVER the next 15 hours (in the car and the hotel we stopped at in West Virginia) Wrenn had two more prolapsed rectums that followed painful screaming episodes.  The very hour we arrived home in Virginia, we again headed to MCV/VCU ER.  (It was a week ago exactly that the exact same ER team had helped us before).  They were sad to see us back!

WHEN we arrived at the ER at MCV they wanted to put an IV in Wrenn so they could give medications and be admitted to Peds for possible surgery to fix her habitual problem.  The problem was Wrenn was so dry from the days in St. Louis from having missed feeds that the ER couldn’t find a vein again.  Jason and I held Wrenn down while they tried in each arm, wrist and then each leg.  It was painful to watch and I had tears coming from my eyes.  Finally I said, no more.  I told them to give her morphine through her g tube and end this madness!  Within minutes they had her relaxed and the surgical doctor came in and pushed the rectum back in. 

(I want to note that almost 99% of all transplant patients, especially kids, have GI issues.  These are very common issues for the most part because of the side effects from the drugs and the child’s overall health.  It’s easy to misdiagnose a real problem because of the medications and diet).

THE surgical team fed her Pedialyte during the night and chose to do the most non-invasive surgery possible that would temporarily keep the rectum from being pushed out, which would hopefully buy us some time to find out why her GUT had so much pressure.  

THE next day Wrenn was taken to the OR.  The procedure: the surgeon would inject sugar water into the rectum in three different places, causing the rectum to swell and scar so that it doesn’t easily pop back out.  The surgical procedure can last a day or a month or a year, it’s just up to how much better or worse she gets with the GI issues.  They could have done another procedure that staples the rectum inside but it had much more risk of infection and side effects. They don’t like to do that procedure on babies or kids because generally a prolapsed rectum is a temporary issue and corrects itself once the child is older.   

THE surgery took no time at all, in-fact putting her under and finding an IV spot took the most time.  Her arms were so bruised from the last ER visit and then the labs and IV’s in St. Louis; she looked so abused.  

THAT night after the surgery they started her on a drug called Flagyl.  This is a drug the GI doctor thought might help Wrenn if it was an overgrowth of bad bacteria in her intestines.  He said if the drug doesn’t fix her bowls, they’ll have to do a biopsy and test her large and small intestines for other issues. (I didn’t even want to go there but at least we had a plan to cross things off the list).  After dealing with this issue of mysterious pain, gas and crying episodes all night, I just needed answers.

WRENN came out of the surgery in a lot of discomfort but after I had demanded she receive some morphine, slept soundly for two more hours and then woke up thirsty and in a much better mood.  The surgeons ordered no food or water for 24 more hours to protect their work.

THE next day (Saturday) around 3pm she was given a huge lunch and boy did she eat.   Macaroni and cheese, chocolate milk (her new formula called Neocate), peaches, bread, mashed potatoes and pudding for dessert.  Now it was all about watching her for the next twenty-four hours to see how her system would take the food and see if the Flagyl would make a difference.  It was nerve wracking to watch and especially stressful each time she pooped but she did great!

AFTER twenty-four hours we were released from the hospital around 4PM Sunday afternoon.  It appears as though the Flagyl did wonders for Wrenn and so an overgrowth of antibiotics was indeed her problem.  When I think about all the times she’s had antibiotics in her short life it’s no wonder.  Her body was on overload with the stuff and needed something to wipe it out.  It seems easy now, but it’s hard to diagnose a child who is special and I think I have new eyes to thank for this cure. 

WRENN was on the Flagyl for 14 days and I’m so excited to say that she’s a NEW child.  She used to have 20 diapers in a 24 hour period, now she has 6.  She loves food now, sleeps through the night and it just seems like she feels so much better.  I just can’t imagine what she would have said if she could have talked about how much pain she was in.  I dare say she was probably miserable for over a year with these issues and they just went unnoticed due to the rejection drugs and history of GI issues.
SOME kids stay on Flagyl, but we are going to see how it goes as a one-time dosage, now that I know what to look for (I believe I saw her progress to what was the WORST case scenario) and so we can literally nip this in the butt next time. J

WHAT a whirlwind we’ve experienced for the last 6 months.   You can’t blink with a child like Wrenn.  This is why I can’t work outside the home.  It’s impossible to know a child like Wrenn without understanding her daily and nightly routine.  Giving the meds at the precise time is life or death for her.  The amounts she is given are life and death and seeing any type of change with her physiologically is so important and a must to her survival and overall health. 

AT Wrenn’s GI appointment today in Richmond she weighed 19 pounds, 9 ounces, which is a GREAT weight gain in two weeks. (Better than a pound)  We are hoping that she’ll stay on pace and her body will start catching up. She is still at an 8 month old weight and a 14 month old body.  But I’m sure she is going to thrive now that she is holding in nutrients.
WE had such great news from St. Louis and they were so happy to hear that this wonder drug made Wrenn ‘perfect’ again.  We are in so many ways cursed and blessed.  I continue to ask God to put the right people in my path to make things better for Wrenn and for our family.  I have to say, I’ve learned more than my share about the human body and medical devices.  I have to say, putting a rectum back in place wasn’t anything on my wish list.  In the ER I felt the need to tell God I have limits—Obviously, I’m not the one pulling the strings.  So the best I can pray for is a DAMN good team to get me through the rough times.

I want to thank my Winnie team for answering all our behind the scenes questions while we were trying to figure out Wrenn’s issues.  You guys are the best!! I’d be so lost without you all. Perri, you’re Wrenn’s little guardian angel and mine, too!

UPDATE on Tanner:

TANNER was really looking forward to seeing his buddies in St. Louis and played every single hour he could in those three days at the Children’s Sibling Playroom.  He was exhausted at night and had the best time with his ole’ pals—Mr. Pat and Miss Rita.  The Sibling Playroom staff is such a wonderful part of our family and we really do look forward to seeing them every six months.  

I also want to thank all our friends and family who prayed for Wrenn when we needed answers and for coming to the hospital to see Wrenn (Mandy, Laura, her MCV doctors) and our parents for helping out with Tanner so we could take care of Wrenn.  Our lives take a team effort and it’s impossible to do it all alone, even though the sole responsibility falls upon our shoulders.  This is the type of support that gets us through the difficult/trying times and we couldn’t do it without you all.

On a personal note:  I’m thinking that someone should seriously present me with an honorary nursing degree because I’m pretty sure I’ve earned one at this point! J (Editor's Note: I agree!)

Xoxo Nicole


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