I need prayers.
We are clocking our third ER visit this month.
After three pretty uneventful and somewhat easy months with the feeding tube, it was time to replace the button. I scheduled an appointment with the surgeon’s office to replace the button, eager to see the process since it would fall on my shoulders to replace every three months after this.
Per the norm, nothing went as planned. Long story short…the nurse practitioner shoved the new tube in while Brian wiggled, causing a tear, which resulted in us spending NINE hours in the ER less than a week later. The diagnosis then was cellulitis and severe inflammation, most likely due to the tear. Medication was prescribed and we were sent home.
During the follow up with the surgeon, all looked good and he decided to keep the larger button that was placed in the ER and add 2ml of fluid to the balloon, which had 5ml already. I thought we were back on track, but I was wrong.
Almost two weeks ago we ended up in the ER again when Brian spiked a fever and was thrashing in pain. The ER docs did a test to determine the tube was placed right and sent us on our way to see the surgeon again. Last week we saw the surgeon and he assured me everything looked great and suggested it might be psychosomatic. He prescribed an antacid to help with the drainage and a new steroid cream for the button.
Brian had tball this past Saturday. He loves running, throwing, hitting and just being a boy, but this time was different. It took gentle nudging from us to even get him to play, and then he resembled an old man while he hunched over, grabbing his side, and running the bases.
Since Saturday it has gone downhill fast. We saw the pediatrician Monday (unrelated – Brian caught a virus causing a cough, sore throat and high fever), and I took the opportunity to express my concerns. Brian won’t let us anywhere near the button. Just the simple task of changing the cover becomes overwhelming for him and Matt and me. Hooking him up to the feeding pump is an exhausting ordeal, and I cannot remember the last time he slept through the night without screaming in pain. She suggested something could be wrong INSIDE (funny…pretty sure I’ve been saying that all along), and she recommended bypassing the surgeon and requesting an endoscopy from the gastroenterologist.
I made my many phone calls after the appointment and was able to schedule an appointment with GI for this afternoon. The plan was to wait, but the last two nights changed everything. After screaming in pain two nights ago and not being able to move much yesterday, I decided to skip the overnight feeding last night in hopes that Brian might be able to sleep. No such luck – he was up screaming consistently between 10:00p.m. and 3:00a.m., which is when I gave him some stronger medicine to calm him. When he woke this morning and couldn’t get out of bed, I knew there was no chance we could wait till this afternoon to see a doctor, so we headed to the ER.
Now I am sitting, waiting, and hoping this time someone finally listens. The doctors and nurses can see how painful it is for him to move and are starting off with an x-ray, blood work, a CT, and possibly admitting him in order to convene with Gastroenterology and Surgery.
This sucks. My baby is five and should be running and playing like a normal little boy. I’m tired of seeing him in pain and not having any answers. Families who have dealt with feeding tubes say they never had anything like this happened. I guess I’m not surprised since unusual dilemmas seems to be par for the course for us.
I’m asking for prayers.
Pray my little man returns to his crazy and happy self soon.
Pray the doctors listen to me.
Pray we find an answer.
Pray for my sanity, which I’m pretty sure is on the way out.
Thank you for being the army behind me and the prayers you send our way.