The Joys and Challenges of Life
My Journey – You Never Know Where Life Will Take You
This is a story about my journey which took me to a completely different place than I had ever dreamed of. Some would say that I got married a little bit later in life; it was 10 days before I turned 30. My dad said he was going to put an ad in the paper so it was a good thing I did. We were married for four years before we had our first child, a beautiful bouncing baby boy. Two and half years later we were blessed with another beautiful boy. This is when life took a drastic turn. He was born full term at my local hospital but delivered under respiratory distress, was whisked away and taken by ambulance down to Pittsburgh to the a Neonatal Intensive Care Unit (NICU) within hours of delivery. I left the next day with a basket of flowers and no baby; that is not how life is supposed to be.
When we got to the NICU, this is when we were told that our son had a congenital heart defect that would require surgery. He had a major hole in his heart. He had difficulty eating and breathing at the same time. We had to make a decision and decided to have a feeding tube placed into his stomach, so he could get the nutrition he needed to grow for his heart surgery. He stayed 6 weeks at the NICU and then moved to a transitional infant care facility for two more weeks before I could bring him home. I had to learn to care for him, me who never wanted to be a nurse now had to learn how to take care of his gastrostomy tube also known as a g-tube and all that goes along with it and the conditions he had. During those days, grandparents were staying at the house caring for our 2 ½ year old as mommy made daily trips to Pittsburgh. It is in times like these that I prayed for strength to get through the day and at times I prayed for grace to get through the moment.
We finally were able to bring our son home the day before the fourth of July. We got him through the summer and fall months without any illnesses and he was able to have his heart surgery that November at six months of age. Surgery was a success but he developed an infection, so instead of being in the hospital a week he was there for three weeks. Then we were able to come home. Life was going to return to normal right? Whatever “normal” was. Wrong…he developed severe reflux, he still was receiving his nutrition through his g-tube. He had to go on a feeding pump for 22 hours a day to get his nutrition and was fed this way for months. Things finally settled down with medicine and slow feeds that he was eventually able to get off of the feeding pump.
He had low tone and difficulty eating solid foods. We began outpatient treatment at Children’s Institute for his eating issues. He was making very slow progress. The therapist thought he would be a good candidate for their inpatient feeding program. We made the tough decision and agreed for him to be placed into the program. So three days before Christmas we took him down and admitted him and we were not allowed to see him for two days. He spent seven weeks in the inpatient feeding program and it was miraculous. He went in 90 percent tube fed and came out 90 percent oral fed. I am forever grateful. We were not able to get rid of the feeding tube for several more years because he needed to hydrate entirely orally before we could get rid of it. His g-tube site was surgically closed when he was in Kindergarten. Finally life seemed to be settling down.
In the summer of 2007 my older son began to deal with stomach issues. We had multiple trips to the doctor and were eventually sent down to Children’s Hospital of Pittsburgh (CHP) to see a specialist. He was diagnosed with a chronic disease. Many tests were ordered and medicine begun to help with the disease. At Thanksgiving time we had to make a trip down to CHP because he was unable to eat and having symptoms. It ended up we stayed several days at CHP. It also included having to have a nasal gastro (NG) tube inserted. He was in pain all night long. We found out later he had all kinds of ulcers through his GI tract and the ones in his esophagus were rubbing on the NG tube causing a lot of pain, it was a sleepless night. After a multitude of tests, a different medicine treatment plan was begun. Thankfully, he has done well and his condition is in remission and he is in a good place.
In the midst of all of this my husband had two retina surgeries a few years apart for detached retinas, back surgery, hip surgery and a broken knee cap.
To help my youngest son, I had to learn alphabet soup. I had to learn what an IEP (Individual Education Plan) was along with ESY (Extended School Year), ER (Evaluation Report), PTE (Permission to Evaluate), PT (Physical Therapy), OT (Occupational Therapy), AT (Assistive Technology), just to name a few. I had to learn terminology for which silo I was working in. I learned to advocate for my child and stood on the fact that my VOICE was an important one at the IEP table. I had to challenge others to see outside of the box and the diagnoses my son had. I had to learn about assistive technology and was grateful it was available for my son who has a severe speech and language delay.
Today both of my sons are young adults in their 20’s and I wonder where the last two decades of my life have gone. I know it has gone fast. Both are working, successful and giving back to the community in positive ways. I look back through what all we have been through and wondered how did we do it? I got through it by taking it a day at a time and sometimes a moment at a time. My faith, family and friends were supportive through it all and I am grateful I live here and now. So when the day is hard, take a deep breath, a moment to pause and realize that there are others on the journey, some ahead of you, some behind you, but all moving in the ebb and flow of life. Remember you are in a marathon and you have to learn to pace yourself.
– Judy Campbell