![Picture](/uploads/9/0/4/7/9047278/2032095.jpg)
This is a shot of Gracie wearing the cap on her trach. We had to take a little break from capping as Gracie got a sniffle- boo! We think it either came from the play area at the mall where a curious little girl touched Gracie's trach (ahg!) or from the children's museum where G stuck one of the toys in her mouth....I mean, it could be anything really. But despite our hand wipes and sanitizer, this will happen form time to time. So I wanted to write about it because I want people to understand why parents with kids who have extra needs are so paranoid about germs. We are not, in fact, germaphobes ;) Well, maybe a little, but we have good reason! Most kids who get a cold have their noses wiped, maybe take some tylenol and possibly see their pediatrician (I think....). For us it's a little....more.
So first off, we couldn't cap her for a good week due to extra secretions. Not to be gross, but imagine her trach is a volcano....yeah. In the middle of the night I was having to run into her room to suction out her airway because she was choking. Then her secrections turned yellow which means we have to start breathing treatments with a nebulizer and Xopenex. This called for a trip to her pulmunologist who also put her on a steroid to inhale severl times a day. Have you ever had to have a 17 month old sit still for 3-5 breathing treatments a day? Oy! It's like a rodeo! This all lasted for about a week but fortuantely we have one strong, healthy girl so it cleared up without needing an atibiotic. But we had to be very diligent about everything because this could have easily turned into a respiratory infection. I think tracheostomy.com says it best:
"Children with tracheostomies are at high risk for respiratory infections. The trach tube bypasses the natural defenses (nasal hair and mucus membranes) of the upper airway that filter out dust and bacteria. Also, monitor for local infections at the stoma site. Hand washing before any trach care is one of the best defenses against infection"
But everything worked out just fine and Gracie is over it, but this is just a good example of why we have been, and continue to be, as careful as we can without completely becoming shut-ins! I recently ran into a mom in Target who saw Gracie's trach and stopped us. Her daughter has a shunt in her brain to drain fluid and is 19 months old and just started scooting. No crawling, nothing. So we start talking and sharing stories because it is just so liberating to find another parent who has a DDD support coodinator, medical supply company and the same OT as us! She asked me if Gracie has been healthy and when we dared to venture out. She said that she didn't leave the house for three months after they got home from their PICU stay. I was like, "me neither!!". I mean, who else can relate to that? This must sound weird, but we were so excited to talk about all this! But for all we have been through, it is nothing, and I mean nothing, compared to what her daughter is facing.. I asked this mom if they ever played anywhere....like, maybe we could meet at a park? And she was like, "we don't go out." The end. Not sometimes, no playground, no library, no friends..... That really hit me because we have moved passed that phase. I just count our blessings every day and send love and compassion to all of the MANY families who are facing these challenges. And we are SO GRATEFUL for our AMAZING circle of friends and family who continue to support us. It means more than you will ever know.
So first off, we couldn't cap her for a good week due to extra secretions. Not to be gross, but imagine her trach is a volcano....yeah. In the middle of the night I was having to run into her room to suction out her airway because she was choking. Then her secrections turned yellow which means we have to start breathing treatments with a nebulizer and Xopenex. This called for a trip to her pulmunologist who also put her on a steroid to inhale severl times a day. Have you ever had to have a 17 month old sit still for 3-5 breathing treatments a day? Oy! It's like a rodeo! This all lasted for about a week but fortuantely we have one strong, healthy girl so it cleared up without needing an atibiotic. But we had to be very diligent about everything because this could have easily turned into a respiratory infection. I think tracheostomy.com says it best:
"Children with tracheostomies are at high risk for respiratory infections. The trach tube bypasses the natural defenses (nasal hair and mucus membranes) of the upper airway that filter out dust and bacteria. Also, monitor for local infections at the stoma site. Hand washing before any trach care is one of the best defenses against infection"
But everything worked out just fine and Gracie is over it, but this is just a good example of why we have been, and continue to be, as careful as we can without completely becoming shut-ins! I recently ran into a mom in Target who saw Gracie's trach and stopped us. Her daughter has a shunt in her brain to drain fluid and is 19 months old and just started scooting. No crawling, nothing. So we start talking and sharing stories because it is just so liberating to find another parent who has a DDD support coodinator, medical supply company and the same OT as us! She asked me if Gracie has been healthy and when we dared to venture out. She said that she didn't leave the house for three months after they got home from their PICU stay. I was like, "me neither!!". I mean, who else can relate to that? This must sound weird, but we were so excited to talk about all this! But for all we have been through, it is nothing, and I mean nothing, compared to what her daughter is facing.. I asked this mom if they ever played anywhere....like, maybe we could meet at a park? And she was like, "we don't go out." The end. Not sometimes, no playground, no library, no friends..... That really hit me because we have moved passed that phase. I just count our blessings every day and send love and compassion to all of the MANY families who are facing these challenges. And we are SO GRATEFUL for our AMAZING circle of friends and family who continue to support us. It means more than you will ever know.