Day 531 - 🤳 Phone Calls Galore, James Uses a Straw🧃, and the Beginning of a Virus 🤒

Tuesday, June 14th, 2022

A few days ago, Mom emailed our DME a list of concerns... In summary, we need one of our ventilators replaced, we're still without a portable suction machine, waiting on our Pediatric concentrator, updated them on the contact information for our new Medicaid case manager, still haven't received Farrell Bags since January, and lastly ask them to hold on some supplies. Well the only thing that was followed up on was the ventilator issue. The respiratory manager asked Mom to record a video of the ventilator clicking. Video below. 

So Mom recorded a video of the ventilator clicking, uploaded it to youtube, and then sent the link to the respiratory manager. Immediately he knew what the sound was, the solenoids, and had one of the RTs call Mom. 🤳 The RT called Mom and asked why she was told to call because she wasn't given any information. Seriously. That's how organized this DME is. So Mom explained the whole situation and basically let her know that although the ventilator is making me clicking noise and it seems to be the solenoids the main concern is replacing the other backup ventilator that is now broken. She said she would be out later today with that backup ventilator but it will only be good for a month because of the number of hours on it. Don't have any right now that have been serviced.

🤳 Then we received a confirmation phone call confirming our eye appointment this week.

🤳 The RT called again to let us know that she had no idea what time she would be arriving. She is coming from Melbourne.

🤳 Next Mom received a call from Coastal Care Services which is a 3rd party supplier to our DME, wanted to see if we finally got the formula and needed us to do a review on our DME, Brownings.

🤳 Then we received a call from Baycare, a DME we no longer use, regarding the order for his medical stroller we placed almost a year ago. We let them know that we are no longer interested, and we let go of Cigna in March. They confirmed that since we now only have Medicaid that we wouldn't be able to work with them for the medical stroller anyways. Talk about a pointless waste of time phone call. Thanks for following up a year later!

🤳 Mom called the GI office to get answers about James' dehydration and adding water. His stools have been very hard and dry. And according to the G-tube FB group when switching from baby formula to this new feeding they can become dehydrated because of the difference in water. No one ever picks up at this office so the call was transferred to a different office where mom spoke to their assistant. Her suggestion was to add medication like miralax back into his regimen. Mom let her know we did not want to add medication we actually weaned off of milk of magnesia and a medication drawing water from his intestine is actually the opposite of what we want to do. So we asked if our doctor could just please call mom back instead.

🤳 Mom also reached out to one of her Trach Mom friends to get help with a game plan to transition from GTube to GJ feedings. James needs to start really slow and his G-tube and his Doctor just does not get that.

👩🏼‍⚕️In the afternoon the RT showed up with the backup ventilator and we gave her the one that had died.

If you made it through all of that, then here is an update on James! 🐻 🧃 Today, James used a straw! We recently got James a honey bear bottle which allows us to squeeze the water up the straw to reach his lips. We are teaching him how to suck. Unfortunately since James never used a baby bottle and didn't nurse he doesn't know how to suck but he did pass his swallow study. Mom has been working with James on this and today while the straw was in his mouth he sucked up the water and swallowed! It was amazing to see! It's such a huge milestone for James! Up until now he's only received water on a sponge or little drips at a time. James also wanted to eat the bear's face. 😂  We don't have any video of him using the straw yet; we were in the moment and it was short lived.

Mom woke up with a sore throat today out of nowhere and decided to buy 2 OTC Covid tests in the afternoon. She tested negative, but by the end of the day both James and Mom had fevers.

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com