Still Exhausted, But Relaxing

Cottage_Small

Still exhausted, but on vacation in Waldport on the Central Oregon Coast. When we arrived in Portland, before we drove out to the coast, we stopped at the Willamette National Cemetery where my brother-in-law is buried. The cemetery is beautiful, surrounded by trees with a view of the Cascade mountains in the distance. We said goodbye to Don, held hands, and silently prayed. Don, we love you, we miss you. Thank you for your service to our country.

DonGravestone

We are visiting my husband’s parents and have rented a small charming cottage, near their home. If I climb up on top of this cottage’s carport, I can see the waves in the distance through the power lines. The skies are overcast and air cool, clean, and damp – a far cry from the sunny, hot, dusty part of California we call home – a wonderful respite, actually, perfect for slowing down and taking a deep breath.

Cottage view from carport of street, cottages across the street, telephone and electrical wires, trees, and ocean in the distance

My son and I are recuperating from last week. On Friday, he underwent an endoscopy of his upper gastrointestinal tract (EGD). Both the procedure and the taking of biopsies have left my son with a sore esophagus, making it painful for him to swallow. Poor guy. Hopefully, his esophagus will heal soon, and his post-op pain will be short-lived. His pediatric gastroenterologist said that my son’s upper GI tract looked healthy and the photos he took looked good to me (pink and intact, no ulcers), which is reassuring since he has regularly thrown up his whole life, due to migraines, acid reflux, and gastrointestinal illnesses. For the last few years we have medicated him with omeprazole to reduce his acid reflux (GERD).

When we visited my son’s pediatric allergist/immunologist, we learned that her assistant misinformed me over the phone that my son’s lab work was negative (that his tests showed no immune deficiencies). In fact, his lab results indicated elevated lymphocytes, probably due to a viral sinus infection which the doctor is treating with nasal irrigation and antihistamine (azelastine) and corticosteroid (fluticasone propionate) nasal sprays.

Worse than the viral sinus infection, my son is deficient in all tests for pneumococcal antibodies, so he received a Prevnar-13 vaccine. Four weeks following his vaccination, he will get follow-up lab work done to see if he has built up antibodies to the 13 Streptococcus pneumoniae the vaccine targets. At that time, his pediatric immunologist also ordered the mono test panel which includes testing for the Epstein-Barr virus (EBV) and cytomegalovirus (CMV).

The lesson I learned here is not to simply and blindly listen (split infinitive purposefully used) to someone giving you a summary of lab results over the phone. See the results yourself and have them explained to you. My son’s lab results clearly showed problems – problems which we are now addressing.

Chronic Illness is Chronic Illness is Chronic Illness

Sick Sad figure holding stomach

Chronic illness is chronic illness is chronic illness. I so wish that I had a magic wand that could make my son better, that would stop his migraines, asthma, eczema, allergies, depression, anxiety, GERD, and stop him from getting every single virus that comes to town. But, I simply cannot. I’ve taken him to numerous specialists ever since he was very young, and he still gets sick A LOT. I get tired of people expecting me to find some magic potion, simple answer or a cure. There is NONE. We treat, we manage, we medicate, but he remains sensitive. Tried acupuncture. He was not a fan. Tried psychotherapy over the years. He doesn’t find it helpful. I am exhausted. Truly exhausted.

 

Fear of Loss

My Son as a Baby. Now He's in High School.

Thursday night I saw my psychologist over the disaster that was Tuesday. First I had her listen to the distraught voice recording I made that night. I told her about my son’s recurring gastroenteritis. He’s suffered from migraines with vomiting since he was a toddler, has gastroesophageal reflux disease (GERD), and gets gastroenteritis regularly during the winter and spring months.

I talked about how the illness and death of Melissa Nemeth brought forth defended feelings of grief over the loss of my brother-in-law to lung cancer. My psychologist asked me if I’m afraid of losing my son. I responded I don’t think so. Then I described how Melissa’s small intestines had to be removed, and she died waiting for a small intestine transplant from UCLA. At that point, I broke down sobbing, “Oh, my God!” Yes, that was exactly what I was afraid of. My son is still sick. After all these years. After seeing so many doctors. Still sick. Still vomiting far too much for any boy. Still in pain with debilitating migraines in spite of medication. Melissa’s death realized my worst fear – that I might lose my son.

On May 5th I’m taking my son to a pediatric neurologist (again), and to a pediatric gastroenterologist on June 1st. Both specialists are affiliated with Children’s Hospital. Hopefully they’ll have some answers. Please, this time, pray for my son. He I love most of all.