Friday, June 25, 2010

He's a Mover

Mikan is making some progress using his walker. He doesn't have perfect control, but he enjoys using it. Below is a video of Mikan in the hallway of his pulmonologist's office.

His pulmonologist ordered another set of blood gases, a swallow study, and an echocardiogram while we were there. He said that Mikan sounded good, but we needed to watch out for signs of asthma. Right now he isn't on any asthma medication because he hasn't shown too many symptoms. He never wheezes, but he does take breaks during play sometimes. I hate to medicate him before he needs it, but his pulmonologist wanted us to make sure that we weren't dampering his desire to play by allowing him to tire out when he may not otherwise on medication. We are going to take the "wait and see" approach for now.

This week Mikan had his first therapeutic horseback riding lesson. He screamed for the first few minutes, but by the end of the first lap, he was enjoying it. He's already signed several times to "ride the horse" again. He will take weekly lessons with an instructor and his physical therapist for the remainder of the summer.

Mikan's speech therapist said that he should be eating the foods that he likes daily, no matter what they are. Since he only eats chocolate chips and soft serve ice cream right now, we'll be making several trips to the ice cream shop this summer.

Friday, June 18, 2010

So Far So Good: Our Week in Review

Mikan has been doing well without his trach. We spent this past week in Ft. Wayne visiting with family while John worked at a basketball camp. Mid-week we had to take Mikan to the ER for a high fever that wouldn't go away, but he seems to be doing fine now. Mikan enjoyed a trip to the zoo and the YMCA's outdoor waterpark. He has a really nice tan line where his trach ties used to be.

Mikan also went to South Haven Beach last weekend. He played in the sand for the first time and loved it. We cleaned sand out of his crevices for several days afterwards, just like it should be.

Wednesday, June 9, 2010

Our Little Decannulation Sensation

When the doors of the PICU opened yesterday and we walked through, both John and I were immediately hit with the smell of hand sanitizer, fresh plastic and cheap soap, or at least that's all I could distinguish specifically in what most people refer to as "the hosptial smell." John expressed his dislike for the place, and I was immediately thrown back to two years ago when living at the hospital was our life for six months.

When Mikan only used CPAP for the first few days of his life, we were hopeful for a speedy recovery. When he needed the ventilator, we hoped it would only be for a few days. After a few days, we hoped it would only be for a few weeks. After a few weeks, we hoped it would only be for a few months. A tracheostomy was considered a "worse-case scenario" for Mikan's respiratory needs from birth to three months. When he didn't make any progress off the ventilator (a mean CPAP baby on pressures of 10 and nearly 100% oxygen for a couple weeks), he was trached. Even then he was expected to wean off the ventilator and oxygen after his surgery, possibly only going home with a little flow through the trach. Although initially horrified at the news of our son getting a hole cut in his neck, we grew to accept the idea, knowing that less support was better, and if a trach caused him to need less respiratory support, especially a ventilator, we would embrace it.

But Mikan didn't wean off his oxygen or ventilator during his hospital stay with the trach, so we prepared for discharge with a boatload of equipment. Somewhere along the lines we learned that God had ultimate control, so we focused on giving Mikan the best care possible, know matter how complicated or inconvenient it may be.

As many other ventilator/trach parents know, this care included constant suctioning throughout the day and night, troubleshooting alarming machinery before Mikan turned blue from not getting his vent pressures, carting around every emergency item possible and performing rescue CPR at the bedside or even roadside, and forgoing social events because Mikan was too fragile to travel or be exposed to large groups of people, among many other sacrifices I won't bother to list.

Mikan was ventilated till he was 15 months old, and although we had an airway scare during a surgery that led us to believe he would need a major airway reconstruction, this is obviously no longer considered to be a problem.

Although we never would have wished this for our son, I can honestly say I don't regret experiencing it. I've grown more confident as a parent as a result. I've learned to trust God no matter how desperate the circumstances. Most importantly, I've learned to be grateful for what I have and not wish for something I can't control. When Mikan was in the hospital and having a hard time weaning off the ventilator, I remember expressing my frustration to my dad. He told me, "Mikan is perfect in God's eyes, just the way he is." I think that helped me begin to accept Mikan's path, no matter how slow it was. I've been around a hospital long enough to know that there are plenty of kids who don't get their trachs out, or don't survive long enough to receive that intervention, so we are everyday thankful for Mikan's progress.

Yesterday afternoon Mikan was decannulated. He acted like nothing happened afterwards. He resumed his normal activites in the hospital, slept well overnight (except when the nurse tried to get a rectal temperature at midnight- Rectal? Is that really necessary?), and we were able to be discharged this afternoon. Mikan is now napping in his bed, satting 98 percent, with a heartrate of 88. We couldn't be more proud of him.

Monday, June 7, 2010

The Circus

Dad and Mikan doing the "elephant" sign

We got a few tickets to the circus through March of Dimes. Mikan was more interested in the flags flying above the acts than any of the animals or performers. One of the acrobats fell during an act and was taken away in an ambulance, so we hope he was ok...

Mikan is doing well with his walker; I'll post a video soon. He likes to run though and got caught on a threshold leading out to a friend's garage. He landed face first on the cement, never letting go of his walker. He's got some nice tough guy bruises and scrapes all over his face.

Mikan's decannulation is approaching. Please send Mikan a quick prayer when you think of it. We are looking at a one day one night hosptial stay minimum.