We knew heading into today that it was going to be a long day, but my, oh my, it has been exhausting for all of us! We had barely been home this evening when our night nurse walked in like an angel sent to relieve us! I'm pretty sure for the 1st time ever I saw the look of relief wash across Lisa's face. She, too, was in need of a break tonight.
We packed the car to the brim early this morning as we set out for our first long journey to vent clinic in Dallas. Gran met us along the way to pick up Kennedy for a day of fun away from the hospital setting. We arrived to OCH (Our Children's House) ahead of schedule and went to check in before going to meet another OCH family on our old floor. To our surprise, we were immediately taken to a room and the process began. The parade of medical staff was constant...one right after the next, X-rays, blood draws, trach culture, weight, height, head circumference, dietitian, respiratory therapist, nurses, nurse practitioner, child development doctor and intern, pulmonologist and intern, ect... Meanwhile, Lisa was attempting to fit in his regular respiratory treatments, feeds and meds all while I was trying to hurriedly fill out a mound of paperwork...at least 100 pages...ok, maybe not 100 pages, but it was a lot.
The good news is...Drake received an excellent report today!!! His X-rays showed nice clear lungs and we are moving forward with his recovery. For now he will still be hooked up to the vent 24/7 but his breath rate trails (where the vent doesn't give him any breaths) are being gradually increased. He is off of his breath rate for 8hr each day as of now, and we will gradually increase that over the next month until our next vent clinic. Our goal is to reach 16hrs each day off of his breath rate and to wean down to room air on his oxygen.
We did have a high stress, heart pounding, panic inducing period in our day. When our 8hr battery backups ran out of power, we were finally making our way to the car and ready to hook up to our heavy duty battery that we leave charging 24/7. Battery backup malfunction!!! It was now 4:41pm and we were 2hrs from home running on the vents internal battery only...30mins until complete power loss! Talk about stressed!!! I immediately called our DME company and headed to Richardson to pick up a replacement battery. Lisa situated herself in the backseat with ambu-bag in hand ready to start bagging at the moment we lost complete power. A 15 mile distance seems simple enough until you toss in the element of rush hour traffic! We both grew a few gray hairs, but we made it and the exchange was complete. Finally we were breathing a bit easier as we scurried down the highway to pick up Kennedy and finish our journey home! Thank goodness Brian beat us to the house and had dinner in the oven (I love that man)!