Frustrations part two

This week has presented numerous challenges to what should have been a relatively calm week. Zayden had his occupational therapy (OT) and Developmental therapies here at home, with no doctor appointments. I was able to schedule some work assignments outside of the home for a few days this week which improved my mood knowing we would have some additional income from these jobs. Zayden's health had been stable with just one extra trach change this week versus 4 the week before. At his MDA clinic appointment on Friday, all of his doctors were happy with his progress. His Pulmonologist set up a reasonable schedule for moving Zayden toward being off the vent and breathing on his own. His Cardiologists, Neuromuscular, and brain protection doctors scheduled follow-ups for 6 months out as they were comfortable with his condition being stable. His Pulmonologist wants to keep him at 2 to 3-month follow-up appointments. 

Zayden's cardiologist did not feel any need to increase or change any of his medications. His Pulmonologist agreed to allow us to alternate between Albuterol and Xopenex, (YES, I am aware they are pretty much the same medication,) as we had done with Zayden's mom for best results. The Pulmonologist set up a plan to increase Zayden's time off the vent from 2 30-minute periods per day by adding 15 minutes to each period, with an additional 15 minutes added to each vent break every 2 to 3 days, as tolerated by Zayden until he is off the vent all day. Additionally, his lung doctor saw that the sputum culture results from when Zayden was in the hospital had shown that Zayden had a common yet resistant bacterial infection that though typical with vent patients can turn into a serious event if left untreated causing the doctor to order a heavy-duty antibiotic for a 28-day treatment course hoping to nip the infection in the bud. We went home in a pretty good mood because Zayden, (even with a setback previously,) had made better progress than his doctors had expected. The weekend was uneventful. My guess now is that it was to allow me time to prepare for the upcoming battles that started bright and early on Monday morning.

To give the short version of events over the following week it's easiest to say that once again due to the overly complicated and cumbrous process between medical insurance, getting doctor's orders to multiple parties, who each have a part in the process Zayden still does not have the medication. We got the specialized nebulizer for the medication on Thursday that was approved by the insurance company yet that same insurance company denied the medication because it is not FDA approved for CDM treatment. 

This is the 9th medication to be denied solely because it's not FDA-approved to treat CDM. It doesn't seem to matter that there is not a single drug or treatment approved by the FDA for treating CMD to date. Every medication that doctors prescribe for these kids is all off-brand use. Heck, if all medications on the market today were only used for FDA-approved submission there would be lots of people in big trouble medically.

On positive notes, Zayden's stander trial was approved. His thermoplastic wrist braces were approved. His medical stroller with home base was approved. The Volara and Shaker vest were both approved as well. The Volara will be delivered and we will receive the training on how to use this piece of equipment on the 21st of April. We go for his fitting on the 25th of April for both the medical stroller with its base and the stander for his trial. Zayden's PT, OT, Speech, and Feeding therapies have been moved to in-home services with Zayden being more alert and actively participating in the full sessions versus being worn out by the time we arrive at his sessions. Lastly, for today, Zayden is now off his ventilator for 1 and a half hours twice a day with no issues.