Eli is still struggling. We went from the aspiration and requiring O2 to worse.
Eli met with his complex doc on Friday and we spent 3 1/2 hrs discussing everything. He gave us permission to go ahead and trial out full time O2 to see if we can keep his heart rate and respirations down. This is in hopes of avoiding a trach. Eli's normal O2 use is 1/2 liter while sleeping. 1/2 didn't work so we went up to 1. Then he started coming down with something or his aspiration getting worse. He's now on full time around 1 1/2 liters, has needed tons of suction, emergency breathing treatments, CPT, and is being kept upright at all times. His temp is up and so is his heart rate and respirations. He's barely coughing and it's pretty weak. His lungs are now sounding junky. I've already talked to his pulmonologist 3 times this morning. He's now having him on BiPAP with O2 and his breathing treatments run thru there. We have already had to cut back on his rescue treatments as they are making his heart rate even higher. CPT still. Increasing fluids. He again discussed the need to stop the robanol. He's not only concerned that it's raising his heart rate and increasing his respirations but now he's concerned that it's making his secretions too thick, and for a kiddo who doesn't have enough energy and muscle strength to cough, it's making it near impossible for him to cough it up.
We all will be meeting on Dec 15th, first thing to discuss all of this. We were confident that we were making progress on avoiding the trach, but after talking to his pulmonologist, we aren't so sure that we have alot of arguments left. He's worried and when Eli's doctors get that worried it really scares me.
The goal is still currently to keep Eli away from the hospital so our doc is calling here multiple times a day to keep checking in and changing nursing orders and sending med orders straight to the pharmacy to deliver here at home. Fingers crossed we can ride this whole thing out here. I am sooo thankful to have nursing in home 12 hrs a day 6 days a week. I have no idea how we would be getting thru this round without them.
More updates soon.