Olivia is 42 days post op. According to her doctors, surgery was a success and has already shown great benefit to her. What they don’t acknowledge is the continuous pain she has been struggling with and how she can’t get through the day without Tylenol around the clock. The mornings that begin with Olivia waking and immediately vomiting. The extreme difficulty in tolerating her breakfast; in which experience has taught me to have several towels nearby in preparation for a 50/50 chance of more vomiting. The excessive growth of granulated tissue build up around her surgical site. The “beefy” water blister-like sore; growing from a hole inside my child’s abdominal wall.
The sleepless nights because Olivia’s reflux has worsened causing her to choke on vomit in her sleep. The increased stress from this “new issue” affecting her body’s muscle tone drastically, causing her to have increased painful, uncontrollable muscle spasms.
Then there’s the “stuff” doctors can’t help with. The stuff we parents are left to deal with. Let’s talk about that. Let’s talk about how for 42 days my husband and I have not slept. Nights are the hardest for Olivia; everything from severe spasms in her muscles and joints to, vomiting as a result of reflux or intolerance to her evening tubal feed. How about the added stress that stems from complete and utter exhaustion and there is no escaping it because it’s just the two of you; trying the best you can to “hang in there “. God damn it if I hear those words again, I may scream! Hang in there? We’re hanging on with everything we’ve got! How ironic that I find a coffee mug in my cupboard, depicting the exact slogan I have begun to loath. Well we all know where this is gonna end up.
So how do we go on? Move forward? Why else, we do it for her. Olivia has sustained so much these 42 days. Although her nights consist of a few hours rest, she struggles with tolerating her tube feeds, and she endures relentless spasms throughout her body; our little girl always has a smile on her face. She’s my inspiration, my strength, my hero. She instills hope and I believe there HAS to be better days ahead!