Thursday, September 10, 2009

Joshua's Journeys #11 Trach-e-what?

Today is the anniversary of Josh's tracheostomy. Dr. Morganstein was the ENT that performed the surgery. He wanted to do it when it was previously scheduled and seemed upset as well about the surgery not happening. We have years to discuss a lot of the details going on behind the scenes, and perhaps I am in a very good mood today, but I don't want to get into the politics behind things. Besides, we were so excited the surgery was going through and we would see Josh off the ventilator soon.

The surgery happened, we saw our baby boy's face free of tubes and tape. Before surgery Phil went in to see Josh, then I proceeded after he came back to be with Joey. We both used holy water to make the sign of the cross on Joshua and say a prayer of our own with him. I was able to hold him and walk him to the elevator. On the opposite side of the elevator is where I was to leave. The door opened and Tina went and got Phil and Joey. We put Joey and Josh's heads together as a good luck brotherly love tap, and it was off to the OR for Josh and a long wait for us. When he first came out of surgery his face was bloated, his tongue kinda pushed out, and he was very sleepy. It was Josh's "surgery face." We learned it well. He had sutures underneath the trach and we kept wondering what the stoma (the hole under the trach) looked like. Josh came back with the ventilator on his trach and would remain that way for a few days to adapt to his new airway. He officially became vent free on 9/15/08. It was a great day- celebrated by the NICU staff with a Mickey Mouse and Disney friends sign over his crib to congratulate him.

The first trach change was done a week after the surgery by the ENT. After that it was up to Phil and I to learn Josh's trach care. So much for the simple things new parents struggle with: when to feed, being up at night hearing their crying baby, we were now faced with a new airway in which we had to learn how to change the trach, gauze dressings, clean trachs, suction, and learn all the new sounds or silences of a trached baby.

It was interesting to learn the new sounds we would hear, and it made us feel like we had a closer bond to Joshua than anyone else. It was interesting to us that after time it was still hard for others to discern a sneeze over a hiccup or cough, a cry when he was mad, or when he was trying to talk. Many people complain of no sleep at night with a new baby, let alone twins. We learned after Josh came home to sleep with one ear open because he wouldn't cry we would have to know his cough over the monitor and react quickly to go in and suction him. It was a sixth sense that was picked up quickly. I am glad I am able to sleep longer than an hour or two at a time each night, but I would take it all back in a heartbeat. We will go into his trach care at another time. It is very involved, but something that we don't want to forget either. We learned it, and learned it well, and would instruct and insist on our way of doing things when Josh was re-hospitalized at CDH or Children's. I miss the sound of the suction machine, the sound of Josh coughing for attention, the relaxed look on his face during trach changes showing us total trust, his noses (humidifying vents put on the end of his trach to filter out dust and keep his airway moist like our noses do for us) scattered about the room, and the quacking of his voice when he first found it. It was definitely a unique experience and a challenge of parenthood. We had learned of many parents that did not or could not care for their children on their own out of fear, lack of confidence in their ability, and many other reasons. I was amazed to see Phil (having no prior health care experience) jump right in and do whatever was needed, he is an amazing father to two amazing boys.


Christy said...

It was nice to see Josh's face without tubes/wires. I also remember when you described the feeling of relief on his face during trach changes.

Crystal M. said...

What a beautiful way to remember such a hard day. My heart and thoughts are always with you guys.
I can not believe the bowling fundraiser is only a week away...WOW!! See you soon,
Crystal and Eva

Amy, Mike and Ben Russo said...

I can relate to everything you said regarding the trach. Unless you experience it, you never fully understand the life with a trach. I enjoyed reading Joshua's trach story and you worded everything so perfectly. I can't imagine going through all the scares of learning the trach care and having another newborn at home.