Day 327 - Lots of Appointments - Ophthalmologist, GI, and Labs

Monday, November 22nd, 2021

Our first appointment was at 9am but was an hour away, so we started packing up at 7:30am! There are only two pediatric ophthalmologists in the area both are about an hour away. James needs to get his eyes checked out due to his strabismus. For this appointment, Mom, Dad, and the nurse went along. Unfortunately when we arrived it was pouring right outside. This was the first time we have been in the situation and James got pretty soaked even with a blanket lying over him. There is no handicap parking so we tried to park in a spot and that was The consensus after our appointment was that James will need to wear an eye patch. The doctor could not determine which eye was leading. The result is James will wear an eye patch for 1 hour a day and switch eyes everyday for 6 weeks. Then we will come back for a follow-up. Mom ordered James both glasses that have a cover and sticky Band-Aids for the eye. We will need to distract him for the hour so he does not pull it off. 

Our second appointment was at 3:20pm which gave us enough time to go home unpack the car and lay down James for a nap, which he did not take. Dad It was quite an ordeal to have to do this twice in one day! We probably won't schedule two in one day spread out again. Our appointment with GI went well. Mom went over the recent hospital visit with the GJ coming out.  

🔀 Tangent...GI made a change to one of James' medicines, erythromycin by decreasing it from 6 hours (4x a day) to 8 hours (3x a day). This is great for James because although he takes this for motility and his stomach, it is an antibiotic. It does however mess up our schedule with meds and feeds, because now this med is given at a completely different time than the other meds. So instead of doing meds four times a day we end up doing them five times a day now. We do meds at 7am, 9am, 3pm, 9pm, and 11pm and feeds every 4 hours at 7am, 11am, 3pm, 7pm, 11pm, 3am. So we eliminated the 3am med but added in a 7am and 11pm. Why? Because we need to stay on the best sleep schedule. You can sleep from 11:30pm to 3am and then from 3:30am to 7am. Of course this is when James sleeps through the night and doesn't wake up super early. 

After our GI appointment, Mom wanted to stop by the endocrine office see if they had submitted the prescription for James's sodium chloride. All of our specialists are pretty much in the same building because it is a Complex Care Clinic. On Friday Mom had called the office letting them know James was running out and they needed to call a prescription in. Let's see who's that though the doctor had written a paper prescription and never called it into the pharmacy. Mom asked them why it wasn't called in and the receptionist just said she was waiting for the pharmacy fax number when she literally could have just walked down stairs to the hospital pharmacy. It's really disturbing to see people just do the minimum at their job..just counting down the minutes of when they can clock out. What's crazy is that if Mom had not just stopped by their office randomly this prescription would have just sat on this desk. 

Our next stop would be to the kiosk inside the waiting room where you can sign up for labs. James needed to have his blood drawn because he received a referral from the pulmonologist for an allergy test and he also needed to have one of his endocrine blood labs redone due to a tech's error from a few weeks ago. Of course this wasn't going to be as easy as it should be. The lab do not have any record that one of his endocrine labs was done incorrectly, so they asked us to go back to the endocrine office to get the correct paperwork. Oh boy, they did not like seeing us again! They had no idea (of course) why the lab did not have the appropriate paperwork and didn't know how they could resolve the issue. After a lot of back and forth nonsense, one of the receptionists finally walked down the hall to talk to the lady at the lab and got her the paperwork she needed. James did well with his sticks, which were only two this time. Taking him out of the car seat and laying him on the table helped a lot! 

At 4:57pm, Mom receives a text saying that valet will be closing. But Mom didn't see this until 5:15pm when we were walking downstairs about to text for valet. Luckily there was a young man with our keys. Would they have just locked up our keys? That would have been awhile! Can't imagine they would do that but there also wasn't a sign with a time when valet closes. Good to know! 

When we got home Mom called the hospital pharmacy letting them know that she had this paper prescription from endocrine and that if she brought it in tomorrow and wanted to see if they would be able to fill it same day. The woman responded saying that the hospital policy has changed due to a staffing shortage and there are no longer filling any medications for any outpatients. 😳 This is the pharmacy that handles all of James' meds specifically because some of them are compounded. Mom was informed that she needed to go to a local Publix tomorrow and tell them to call the hospital pharmacy so they could explain to them what to do. Well this sounds like it's going to be a mess!

P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️