Monday, May 2, 2011

There's No Place Like Home

We've been discharged!! It feels so good to get home and settle into our new normal.

My first task was to set up all of Baby 4's medical equipment and supplies:

Toy Bins turned into fluid/tubing organizer
Walls and dresser hold schedules and suction machine
Bedside we have his overnight forced air, humidifier, and nebulizer
The crib doubles as our wound care station
Even the space between the crib & toybox holds trach care trays
The first night was the scariest. Our plan was to have a baby monitor in 4's room so we could hear if his breathing changed or if his trach needed suction. Unfortunately, the humidification machine he's hooked up to at night sounds like a diesel truck, so the monitor only picks that up. So frequent checks are a must overnight. He did fine though, and I'm starting to relax as the nights go by.

Life with a trach is not very complicated with Baby 4 since his lungs are healthy. He eats, speaks, and plays like every other kid. The caveat is that if there were to ever be an issue with his trach like it getting clogged or falling out, the situation becomes very severe very quickly. To combat that, Baby 4 must have his trach supplies and a person trained in his care with him at all times. I tested our going out skills with a trip to the barber shop. Armed with 2 extra trachs, suction, and a rescue breather- we headed out.

The barber was nosey, but he did some nice edge work

I expected some looks or questions about his trach, but I didn't expect the barbers response to Baby 4, "Excuse me Ma'am, He wouldn't happen to be the boy from the newspaper, would he?" Out of the 210 thousand people in our city, you recognize this one child? Ugh! There have been an alarming number of news stories in our area involving children recently, so I said, "Hmm, I'm not sure. He's recovering very well though, Thank you for asking." During the haircut, he asked what the the trach does and where his parents are. It was super uncomfortable, but I was able deflect and give simple, vague answers. Thankfully, Baby 4 was enamored by Judge Mathis playing on the shop's big screen TV, so he didn't pick up on the conversation. I thought being interviewed like that was the worst, but I was wrong.

Playing alone in the rock quarry
After gaining some confidence with our first day trip, we were ready for a day trip to the museum. I hauled around 4's equipment and had so much fun with him. The experience was so much different from when I took the other babies. We saw so many more exhibits and talked about pirates, superheros, and trains. I realized pretty quickly that there was another big difference from when I brought 2 & 3 here. We were playing largely by ourselves. No one asked me any questions about Baby 4's scars or trach. They just left a lot of room between us and their children. I saw a Mom at the train exhibit staring at 4 and when he walked towards her child, she told her to share and they left. At that moment I wished I could have been back at the barber answering probing questions. At least the barber knew scars aren't contagious and touched 4 without a hazmat suit on. This interaction bothered only me. Baby 4 was having so much fun, he took no notice of other people's reaction to him.
He looks perfect to me

It left me thinking though, how long will he stay unaware of his differences? He'll be 6yrs old before his trach comes out, and his scars will never completely go away. While we were getting ready for church on Sunday, I started to prep him:

Me: Why do you have a trach?
4: Because I'm a boy!
Me: Silly! Your trach helps you breath, right?
4: yes
Me: Not a lot of people have trachs. Yours is very special. Some kids have never seen a trach, so they might look at it funny when they see yours. They don't know what it is, so it's OK to tell them.
4: **uninterested eyeroll**
Me: So if someone was looking at your trach, you could say, "That's my trach, it helps me breath"
4: **completely tuned out**

It took a whole 5 seconds in children's church for a little boy to start getting close to oblivious baby 4. I walked over and said, "That's his trach, it helps him breath better". The little boy found that very sufficient and started playing the game that 4 was along side him. Preparation is the key to pleasant outings with a visibly different child. I'm getting it...

All around, this time is full of thankfulness. Thankful for great friends who have been calling and texting with their well-wishes and support, feeding us, and bringing gifts for 4.Thankful that my family can be together and comfortable. Thankful that, after all Baby 4 has endured, staring is our biggest problem. Thankful for recovery of all sorts. there's no place like home!

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