Day 651 - First Time on Carpet 🥰 & Referral Refusal 😷
Wednesday, October 12th, 2022
The day started of by Mom bringing James outside for his morning sprint off the vent and upstairs so James could lay on carpet for the first time. The feeling of brand new fluffy carpet! 😍
In the afternoon we had our appointment for the sacral dimple/tethered cord consult. We first met with a nurse (a new nurse because there has been high turnover) and she needed to go over every single detail of James history and medical background. It was a good thing though because they didn't even have it correctly listed that James has a GJ. They had it down that James only had a G-tube. 🤦🏻♀️ James was discharged from the hospital with the GJ, so this wasn't a new thing. We needed to get a new weight and height. James weighed in at 20 lbs (9.15 kg) and measured 28 ½ inches (72.5 cm) in length at 21 months.
Unfortunately we couldn't meet with the doctor and we met with another NP who has never seen James. However we have spoken on the phone several times, but she didn't recognize his name. We believe she was the NP who previously misdiagnosed his allergic reaction to Bactrim. Anywho, we discussed our concern for James' scaral dimple possibly being a tethered cord due to his rounded lower back, poor posture, tendency to always have his legs bent, shortened leg length, and most importantly while James was in utero Mom's blood test came back with higher than normal AFP (Alpha-fetoprotein) level. But at the time we brushed it off due to the other tests not correlating. This NP didn't really care about any of that and only asked 3 things..."does your baby have normal urine output", "can they move their legs", and "can you see the end of the dimple?". (By the way, this is exactly what Google tells you to look for in case you wanted to be an NP too). She looked at his dimple and said he was fine and she would not give us a referral to neurology. Dad asked about just getting an MRI to just make sure. She responded pretty condescending, "First of all we wouldn't just jump to an MRI, we would get an ultrasound, and we're not doing that because I can see the end of the sacral dimple". Thanks, sorry we're going to continue advocating for our son.
She wrapped up the appointment asking us if we see an orthopedic even though she already could see that in his chart. Mom mentioned that we are trying to switch to another one because we have had 2 poor experiences. She stated that she never heard of someone not liking him and made a snide comment about switching doctors after only 1 visit with him. Mom was sick of repeating herself to someone who lacked empathy and hopefully we would not have to see again. She asked if we wanted her to check out his eyes or ears while we were there and wrote a prescription for Bactroban for his G-tube site because it was a little red. We will probably hold off on this until we see our GI Doctor. No sense and giving him another antibiotic that would be unnecessary.
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