Elias was improved yesterday. He had much more energy and was coughing less. That was until about 8pm when he began to cough violently and continuously. In fact, it was so intense he had tears welling up in his eyes. Poor little guy was miserable. We were not getting secretions up again so we were not exactly sure the cause of the cough. Katharine gave him chest PT, which is a percussive treatment performed by cupping the hands to loosen lung & chest secretions. We were able to loosen some of it, but still not the cause for the coughing. We also gave him some Atrovent again and that seemed to help calm him a touch. He continued the cough, but not nearly as intensely or often. We will continue to monitor this as there are no other symptoms that lead us to believe he is becoming ill or has an infection. Looking back through our notes we experienced similar episodes while in the hospital last September. In those cases they administered Lidocaine drops, which is a local anesthetic that numbs the location it is placed. Their thoughts then were that his airway was so floppy that the front and back walls were touching and causing him to cough or gag. The numbing would relieve the sensory reaction. We obviously do not have the lidocaine here at home so we have to hope the Atrovent does the trick. So far it has controlled it enough and hopefully the cause will be gone soon.
Overnight we received more snow and it is expected to snow through tomorrow. This leaves us with no choice but to cancel our three appointments for tomorrow. Thankfully, none of them are one’s we have been waiting for. One was with the Ear ENT, but since we have yet to meet with the audiologist then this might be better anyhow. I am just hoping that rescheduling is not a nightmare. We were also slated to have Occupational Therapy this morning and while I have not received a phone call cancelling the chances she will be coming out here are pretty slim.
I had to pause oh about 9 hours. Elias today is not doing as well. He is having the intense coughing fits and labored breathing still. We did cancel tomorrows appointments and have brought up the issue to the FA doctors. We have an IVIG this week so if anything needs to be addressed then we can do so then. Our nurse also called out due to the snow, but what is really sad our neighbors Nanny was able to make it at 7am! Illustrates the commitment and mindset for you doesn’t it. It looks as though we are about to be up against yet another challenging blow as the relationship with the nursing agency is rapidly deteriorating. We may find that we are without nursing in the very near future. If you really want to know the details behind this I am not opposed to sharing them, but you can email us or call us and we will explain. I will say that after speaking with a mutual business partner we & the agency share in common, then hearing how they are treated by them as well, along with another family it is amazing and unacceptable. At least we know it is not just us. This will be unfortunate if we can not get this resolved as there are no other agencies accepting patients on ventilators because of staffing issues or as I like to say being responsible. To be honest we are not sure how we will manage exactly, but we have been doing this long and in reality we would only be losing 40 hours of nursing since we have never been staffed properly. With that 40 hours only 4 out of 12 weeks have we even hit that mark. It is usually 20-30. So there is our glass half full take on this!