Ba-Bye!

Well, it has been quite the day for precious Par. Of course, when Rusty and I arrived he was asleep (and had been awake earlier) but just as soon as we stepped into his room, Dr. Kays walked in. He told the respiratory therapist to wean Par down to .5 on the Nitric Oxide over the next 3 hours and then said he’d see about putting him on the conventional ventilator this afternoon. Guess what…

Ba-Bye Nitric Oxide machine………FOREVER…



Yes, at 2:00pm Dr. Kays waltzed on in to Par’s room and looked at the machine and then spun the knob from 2.0 to 0.1. It sort of scared me because just a few hours earlier he had said to only wean to .5. He then looked at some of the other machines, agreed with me on how cute Par is and then went to tend to Jonathan next door. About 10 minutes later, Dr. Kays came back in and turned the machine off and yelled to the respiratory therapist—2:10pm/NO is OFF. Par and I were thrilled—although he was asleep at that point.

I then went to pump and mom arrived to sit with Par for the afternoon. When I returned from pumping the conventional ventilator was in our room. Mom was smiling and said Dr. Kays had just stopped by again and ordered the delivery of the conventional vent and implied he would be putting Par on it sometime in the near future. Again, Par slept through the excitement.



He wasn’t awake that much today—although he had his moments. He was sort of cranky —but I think it was because he’s been moved around a lot lately and he’s just not used to “change.” When we went to tell him goodnight he had been moved again—onto his right side and was being entertained by a blue bear hanging from his heater and his little lamb sitting right in front of him. He had a couple of little “get this tube out of me” fits between his games of “opossum.”



Although it was disappointing to return tonight and find the conventional ventilator sitting there and not plugged in—Rusty and I realize that we are so blessed to be in this position—Praise God for Par’s healing! We thank God for His perfect timing and His love for each of us. We know that God’s timing is key in Par’s recovery and although we want everything fixed now and in our timing, we know that isn’t best for Par and so each day we have to hand it over and say, “Lord, Thy will be done.”

We continue to lift up Ella and Jonathan in prayer as they continue on their CDH journeys. Jonathan is still on the ECMO machine—and his mom and dad are just so tired—I pray for them to be recharged by a peaceful nights sleep. Ella’s parents are battling the sniffles and her mom was out of town today (due back tonight)—I know they are ready to make some decisions about the next steps for Ella and we pray that they will find peace with their decision.

Thank you to everyone for continuing to pray for our little precious Par. Thank you for allowing us to share his journey with you--from surgery to monkey feet--your prayers mean so much and we truly feel the love surrounding us with each day we face. Much Love, Liz, Rusty & Par and his monkey feet