Day 383 - GI Appt, H🖐️F🦶M👅 Disease & 1st Car Wash 🚗 🧽

Monday, January 17th, 2022

Today James had a GI appointment. Dad moved around his schedule to accommodate so we wouldn't have to cancel since our nurse called out.

Before our 2pm GI appointment Mom called the pediatrician's office to see if she could schedule a stop in while we would be at the complex Clinic regarding James's rash. The office voicemail said they were closed. Well we got to our GI appointment dad walked over to the pediatrician's office and let them know that James had a rash and we would like to be seen today. They told us they would schedule us for 2:45pm. Well we waited in the waiting room for 1 hour, didn't even get to see the GI doctor till 3pm. These long waits are always stressful because even though we have a full oxygen tank and James does pretty well with his oxygen, the ventilator batteries do not last! The ventilator has an internal battery that last about 45 minutes and two external batteries that last about 1 hour each. So when we start factoring in travel time, waiting room time, and appointment time 3 hours goes by in a snap! 

Here are all the changes we made for GI!

• Wean schedule for erythromycin (twice a day for the next 5 days, and then once a day for 5 days). We are also going to wean Simethicone at the same time but leave as PRN (the doctor did not care about gas drops because it is over the counter, so that one is totally up to Mom).
• Increase Feeds - currently James is on continuous feeds at 41 ml/ hour. He would like us to increase by one ml every 3 days until we get to 45 ml/ hour.
• Wean Milk of Magnesia. Again this one is also over the counter so he just highly suggests we wean off of it. We've been doing for 4mls once daily, but will decrease by 1 ml every day. Also leaving this one as PRN in case he does not stool. We asked what the average number of stools are for 1-year-old. Well he said any where between 1 stool in 3 days to 4-5 stools a day. That's a huge range!
• We were denied by WIC for formula to be covered. So the next step is to submit the formula as a prescription for insurance. Then wait to hear from Baycare DME submit our denial letter from WIC. We will see! 🤷🏻‍♀️

We got into our pediatrician around 3:30pm. Showed the NP the rash and she suspected that James has Hand, Foot and Mouth Disease. He had a few spots on his palms and feet which is what gives it away. She tried to look inside his mouth using a tongue depressor but James wouldn't have any of that! 😂 No fever and he hasn't even been scratching. If you don't know anything about it, it's pretty harmless but very contagious amongst children. There is nothing we can do for it and it should clear up in a few days. She thinks he contracted it because of all of the appointments we've had in the last few weeks. Possibly? Our physical therapist also works with other babies too, but she is very good about cleaning everything.

When we got home from the appointment we did a quick test to see if all of our equipment would fit in the car for our future trip to Jacksonville at the end of February. We already had James in the car with his ventilator, oxygen tank, suction machine, pulse ox machine, feeding pump, stroller, emergency to go bag, bag of equipment chargers. We only needed to see if these additional items would fit too... Like the huge oxygen concentrator, 3 additional oxygen tanks, the Pack N Play, the back-up ventilator, the back-up suction machine (Mom got for Christmas), two suitcases, a box of supplies, and an additional bag for James. It's going to be tight but we think it should work. Mom is going to ship a huge box ahead of time with a lot of light weighing items. It's all very exciting but don't get us wrong Mom has a lot of anxiety about our first trip. She has a very detailed and ridiculous spreadsheet keeping inventory of everything that needs to come with us.

P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...