So here we go, a look back at the last two years since sweet Joshua joined our family and changed our lives forever.
March 19, 2012:
We received devastating news at our 18 week ultrasound. The news it is a boy was completely overshadowed by the unfortunate diagnosis we received, a relatively rare condition called gastroschisis. This is a type of abdominal wall defect where the abdomen fails to close leaving a small hole that allows internal organs to be outside the baby's body floating in the amniotic fluid. There is a range of severity for the condition which cannot be fully known until the baby is born.
July 31, 2012:
After a relatively uneventful pregnancy given the circumstances of our son's condition, Joshua David Folden was born via semi emergency c-section at 37 weeks after his heart rate became erratic and the inducement process made things worse. It was a bizarre and frightening experience, but I knew the end result was worth it - our baby would soon join us! Joshua was born at 10:37 pm weighing 6 lbs. 4 oz. and 18" long. Hearing him cry as he was pulled from my womb was the most anticipated, amazing sound I can imagine (even as I turned my head and vomited profusely from the anesthesia). After all the worries, concerns, tears, and sleepless nights fearing for my little boy... he is here and he is alive! My goals after finding out about his condition were accomplished: he made it past 37 weeks and weighed more than 6 lbs. I know have given him the best shot I can at a healthy outcome - now the rest will be left to God, Joshua, and the talented medical staff at Children's Healthcare of Atlanta.
Joshua was immediately whisked to CHOA Egleston after birth for abdominal repair surgery and recovery for gastroschisis. He had a primary closure at the bedside and was recovering more quickly than anticipated. He proved what a little fighter he is and our hearts melted as we were first allowed to hold him.
Joshua moved right along with having the breathing tube removed, gut rest to allow the bowel to heal, and once allowed - continued to steadily increase his milk intake. So much so, that we were being prepared to be discharged on August 31st. Then tragedy struck the night before that set off a devastating 48 hour cascade of events that will forever affect our lives.
September, 2012:
To keep it brief, Joshua suffered an extremely rare intestinal malrotation with volvulus that resulted in blood flow being cut off to sections of his bowel which then turned gangrenous. Even after emergency surgery was performed and the gangrenous tissue that used to be half of Joshua's small bowel was removed, he was gravely ill and barely escaped with his life. We were told by the neonatologist he had a 50/50 shot of making it through the night.
In true Joshua form, he battled through it and another surgery the next day to place an ostomy in his jejunum (second portion of the small intestine). Joshua spent 5 weeks with an ostomy before having the takedown surgery on 10/4/2012 - another day that is cemented in my head forever.
October, 2012:
The ostomy takedown surgery revealed strictured, useless tissue below the ostomy down to the colon and Joshua ended up losing the rest of his ileum and the all important ileocecal valve that separates the small bowel from the colon. He now officially has Short Bowel Syndrome and a host of long term problems that come with loss of half of your GI tract.
In the short term, however, we battled a truly frightening and hideous MRSA wound infection after the last surgery that once again, almost took Joshua's life. His heart rate was sustained in the 240-250 range for hours during one particularly bad episode and I literally thought his heart would give out. It took over a month of daily cutting and silver nitrating the wound with no anesthesia to eradicate the MRSA. Joshua was on isolation precaution for months which meant he couldn't leave the room and anyone that came in had to be masked, gloved, and gowned.
November, 2012.
After a miserable six weeks since the last surgery, we finally start to make progress with feeding. As we reach the end of the month, doctors actually start mentioning the big D word - discharge!
December 11, 2012.
The day has finally come! After 131 days and nights in the NICU, we can take our baby home for the first time. I only have to learn how to prepare and administer his IV fluids every night, keep up with his complex medication schedule, pump all the breastmilk he needs, change the sterile dressing over the PICC line, observe him for sign of infection, malabsorption, or any other sign of distress and the list goes on. At the time I thought we were on the downhill slope of battling Short Bowel Syndrome. Oh, how naive I was! My mind was protecting me, I guess. If I had any clue how difficult our struggle would continue to be once we got Joshua home, I don't think I could have handled it.
January 2013 - present
I could write a novel about the difficulties and triumphs Joshua has been through, overcome, and continues to struggle with. Short Bowel Syndrome is a complex condition and missing your ileocecal valve leads to chronic issues with bacterial overgrowth and other problems. Although the doctors initially were confident Joshua would have his Central Venous Line (CVL) removed and be off all IV fluids by the age of 2, we did not meet that marker and are quite far from it since his rate of IV fluids has not decreased in almost a year. Joshua has struggled with food allergies (some yet undiagnosed, I suspect), bacterial overgrowth, life-threatening central line and bloodstream infections one that caused a febrile seizure, line breaks, a blood clot requiring twice a day injections for 6 months, an additional abdominal surgery for lysis of adhesions, multiple colonoscopies, liver damage from the IV fluids, developmental and speech delays from all the time spent in the hospital, and the worst - chronic severe belly pain that wakes him up many times a night and prevents him from resting normally.
I believe we have exhausted our options in Atlanta since we have been going to the only GI clinic dedicated to Short Gut in the state and have sought out the specialists in the area. The time has come to take what some may consider an extreme step, enrolling Joshua in an experimental drug trial requiring 11 round trips from Atlanta to Cincinnati in 16 weeks. The drug is called Gattex, it has been approved for use in adults for a decade, and it is supposed to increase growth of the mucosal lining in the intestine which should help Joshua's bowel absorb more food via mouth and decrease his dependence on IV fluids through his Central Venous Line. We will also have the opportunity to start fresh with a new world renowned team of doctors. I am so hopeful this is the step we need to get Joshua progressing in the right direction and find a resolution to this chronic belly pain.
Many people have asked about the travel costs associated with the trial. The pharmaceutical company thankfully covers two airline tickets and one hotel room for each trip. We will invariably incur costs on things like transportation to the airport, parking, extra baggage fees for all of Joshua's medical supplies, a third ticket for the times Dad can come, and other things that always pop up during travel. Not to mention me missing more work, which hardly seems possible given my very limited hours during the last two years. We have no other good option at this point so we have to make it work. My Dad and David's Mom have each generously volunteered to accompany me on one of the first two trips since David is unable to go due to his school schedule.
We have been incredibly fortunate to be supported by wonderful family, friends, and employers during this life altering journey which has made maintaining a semblance of the life we used to know possible. We are immensely grateful and know we will continue to feel the outpouring of love and support as we take on this latest challenge for Joshua! I will do my best to update regularly about our traveling journeys and, hopefully, all the progress Joshua is making on the new drug!!
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