possiblycrazy79

I'm not the OP, but I have a medically complex son. I was speaking to an ortho once about a surgery & expressing some guilt i have & he just told me that I should not feel guilty about anything. He said whatever choices I've made have been the correct ones to make at the time & I should not ever second guess myself & that I've done the best job with him. It meant a lot to me because I am constantly feeling guilty or inadequate and also feeling scared of the doctors judging me. I've noticed a lot of the doctors will say "you're doing a good job" at the end of visits. It's a small thing but it is meaningful & strengthening to hear.

My son has been in ICU for 2 months for a million post op complications & has ultimately ended up needing a tracheostomy indefinitely. In the past few weeks, he has been spiking fevers with +secretions & all cultures are coming back with nothing. He has been on contact precautions the entire time for MRSA, but after awhile, most ppl only wore gloves for ppe, unless there was a sterile procedure going on. ID has gotten involved, & does not think that he needs to be tested for covid. Do you think this is a wise decision? (We are in AZ).

My son was in the ICU for 2 months, more than half that time on a vent. Please be aware that all ICU docs are NOT created equal. The team changed every 7-10 days so I got a load of many different ICU docs. While most were very knowledgeable about vent settings & peep & pressures, etc., most did not know how to actually use the vents. (Keep in mind that all vents are also different. In the ICU my son used a critical care vent, which is different than the home vent that he is using now that he is on the floor.) When they wanted changes, they would have the RT do it. The nurses were also somewhat knowledgeable in the sense that they typically understood how to read the vent, & were able to bump up the oxygen when needed. But as far as changing the settings, 99.9% of the time it is an RT doing it, in my experience. That being said, the RTs who work in the ICU are much better than those who work on other floors, in my experience.

I was wondering this too. I've seen several parents of autistic kids say that their child's autistic behaviors are significantly reduced when they're taking antibiotics. I guess the idea is that the antibiotics kill off the bacteria that is causing/contributing to the autistic behaviors. My son doesn't have an autism diagnosis, but he has a syndrome & he's been on a heavy course of antibiotics for the past year & a half and he does seem cognitively improved in some ways, but it would be impossible to measure.

My son takes clindamycin every day for a MRSA infection in his spinal hardware. Very tough situation all around as antibiotics wreak havoc on the system, but his body can't handle another spinal surgery to clean the hardware. We are trying to "contain" the infection for as long as possible. The infection becoming resistant to the clinda is my biggest fear.