Mom's Facebook Update

James is now up to 1 hour twice a day off the ventilator! Let me tell you it is one of the best feelings in the world once these ventilator dependent kiddos get to trial off the the vent (called "sprinting"). Since James was born we've been very adamant about making sure he wasn't disconnected for very long and tried to avoid it if it wasn't necessary. We already had to disconnect him for trach changes, putting his circuit under the crib railing, placing him inside his pack and play, taking his T-shirt off, and cleaning his ballard. We are talking about disconnecting James for a matter of seconds because any longer than that the ventilator beeps and then whistles like a train that sounds a shiver down your spine letting you know that you need to connect him immediately. The sound is also specific to the LTV ventilator.

Over this past year, there were times in the middle of the night when pitch black that James's circuit would become disconnected. I would scream for Mike who was upstairs sleeping because I didn't know how long it would take me to figure out where it was disconnected, since there are several places. My whole body would be shaking and I would be hysterically crying because I thought it had been too long. We had experienced a couple of different situations in the hospital where James developed atelectasis (deflation of the lungs) and we had to start over again. This was our fear. Even though James would seem fine there can be a long-term effect of prolonged respiratory depression.

Now we no longer have that feeling when we hear the train whistle! If James disconnects his circuit (which he has done) we are still going to connect him quickly but I don't have heart palpitations anymore. This past 21 months as been super stressful but we are finally at the point where things are feeling so much more relaxed. It's only a matter of time for James to come off the ventilator completely and we feel really good about the plan we have set in place for him to grow and thrive. For all those medical moms, please note every single baby is so different and James had what's called "super severe BPD". Feel free to email us with any questions.

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com