Day 799 - Cancelled Supply Order 📦 & Seeking Answers on FB 👩💻
Thursday, March 9th, 2023
📦 Something that Mom forgot to mention earlier in the week was the issue we had with our DME. Last week when we received the call from ENT saying that we had a decannulation date set (for today) Mom was in the middle of confirming our supply order for shipment with our DME via email. Mom was excited about the good news and let our DME account manager know that we had a decannulation date scheduled, and that if successful we would be able to stop respiratory supplies at some point in the future. Well it turns out that the account manager ended up just canceling ALL supplies, all together that day. All respiratory supplies and all enternal (GI) supplies! While at the hospital Mom had followed up with her to ask why we had not received our order yet (that we had just confirmed for shipment). On a completely separate topic, our orders have been getting later and later each month. Originally when we got out of the hospital we were receiving them on the 12th. Now we don't receive them until the 4th of the next month. 🤔 The account managers response to Mom asking where the order was, "Did he get decannulated?". With that response Mom knew that they never shipped the orders. They just made the decision to cancel his supplies. We could understand the confusion (maybe) with the respiratory supplies but deciding to also cancel all GI supplies is nuts. Over the last year and a half we have found that the people who work at DME companies do not have any clinical experience or understanding of medical equipment. Decannulation does not mean that his feeding tube gets removed at the same time. The process of getting rid of the feeding tube will take a few years. After a lot of back and forth Mom apologized for confusing them and had cleared things up letting them know that James did not get deccanulated and he was actually in the hospital for RSV instead. So don't make the mistake and tell your DME anything!
🚚 So today, the DME sent a delivery driver from Melbourne, FL with all of our supplies. Well we thought it was going to be all of our supplies but it turned out just to be respiratory and his formula. It is super important that when receiving supplies you go through the order receipt and check off each item while unpacking. About 80% of orders have been incorrect with either items missing, wrong items sent, or items sent that have been put on hold. After additional follow-up, the DME said that his enteral supplies were shipped from the warehouse and would be arriving tomorrow. 🤷🏻♀️ His formula comes in 4 large heavy boxes so although it is a 6 hour round trip driving, shipping would have been outrageous for them.
📞 Mom also spoke with our Medicaid case manager who not only needed to do a monthly catch-up call but also a post ER discharge call. Mom let her know of the situation with the RTs in the hospital dangerously administering a nebulizer treatment. She said that needed to be reported, so the plan was to report the incident when the hospital sent the typical text message regarding their feedback survey.
🫁 📈 James seemed to be struggling a little bit with a high respiratory rate. Mom reached out to the Moms of Trach Babies FB group for help. Below is the post of questions. Shortly after sharing Mom had received several responses with suggestions to put him back on the ventilator. So in the afternoon Mom put him back on mainly so that he was getting constant humidity. Overall it was suggested that CPT is good to do all the time. Albuterol was recommended Q4 by a several moms but one mom in particular said it could worsen the situation because it's a steroid and it's not going to help RSV. While Mom understands that, sometimes you treat the symptoms and Albuterol helps open his airway. One person said we could use regular saline bullets for additional nebulizer treatments with no worries. As far as creating a setup off the vent with the humidification chamber, well that was tricky. One Mom sent photos of her child's setup but we didn't have the necessary pieces to make that work.
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