After a veryyyy frustrating bout with Apria Healthcare, we finally gave them the boot & found a different company, AbleCare, to provide our home health supplies & equipment. We were expecting to have to wait a few days for the new company to bring our home vent, but it was brought Friday afternoon, just hours after they received our information!
I cannot even begin to tell you what a feeling of relief I have. The Respiratory Therapist from AbleCare came in, with all of the pieces & parts to the home vent (unlike the Apria people), she knew exactly what she was doing (unlike the Apria people) & she has worked with lots of pediatric patients before (unlike the Apria people). I won’t go into all the details about how horrible our experience with Apria was, but it was a nightmare.
So, Clay was put onto his new & improved home vent Friday around 5 o’clock in the evening. A blood gas was drawn a few hours later, and all of his levels were in a good range! He did well overnight. Then on Saturday afternoon, he had a really frantic spell. He got really distressed & air hungry & just wasn’t moving air well, so me & Eric changed his trach—which had a pretty gross plug in it, basically blocking his airway. After the trach change, he calmed down and seemed to do well overnight.
Our nurse Veronica came in this morning (Sunday) & immediately did another trach change because he was in distress again—and it had another plug. When me & Eric got there, I could tell he was uncomfortable. His color didn’t look the best & just seemed to be working hard to breathe. Me & Eric did another trach change this evening, just to be sure it wasn’t another plugged trach making him work harder—it wasn’t this time. So, a chest x-ray & a blood gas were ordered to make sure he hadn’t lost lung volume or that his CO2 levels weren’t too high. Both came back good, thank God. So, the docs decided to put him back on the hospital ventilator until the Respiratory Therapist from AbleCare can come to tweak the settings on the home ventilator.
Here’s the problem: His home ventilator will provide extra support to 30 breaths/min—but if he breathes more than 30 breaths/min, it doesn’t get supported by the ventilator. So, he’s working harder on his initiated breaths…which is why we noticed he seemed uncomfortable while awake & happy while sleeping. After being on the home vent for 48 hours, I think it just wore him out. When he was put back onto the hospital ventilator (which supports every breath he takes), Clay returned to his usual bright-eyed self. I was so relieved! After a nice long chat with Pappy Robin, a bath from Mommy & Nana Lisa, and some good snuggle time, Clay fell fast asleep—I have a feeling the poor lil guy will sleep really well tonight after the marathon he’s ran.
Hopefully there is some way to change the settings to suit Clay’s needs. As hopeful as I was that things would be smooth-sailing after Clay was put on his home vent, I am glad he’s back on the hospital vent & comfortable. We will patiently wait until Clay is ready to come home... If I’ve learned one thing through this whole deal, I’ve learned patience.
Again, thank you all for your continued prayers & love & support. Please keep ‘em coming as we (hopefully) get closer & closer to home.
Peace & Love to all!