Wednesday, January 14, 2009


Mikan spending some time off the vent, checking out the wintry weather.

Yesterday afternoon, during Mikan's speech therapy session, we discovered a new game he likes to play when his Passy Muir valve is on.

When we put his Passy Muir valve on later that evening...this is what happened.

Some of you haven't heard Mikan cry, well he was showing off his lung strength last night. So, John decided to distract him with the game we played during therapy.

The game stopped the crying.

Well yesterday was a pretty long day for us. We had several inches of snow with blizzard-like conditions, plenty of blowing and drifting. Of course this was our day of appointments in South Bend. But we endured the weather to see two new specialists: the pediatric pulmonologist and the stoma therapist.

The pulmonologist said that Mikan's lungs sounded good and his vent settings were moderate to minimal. He agreed with the pediatrician and said that he wouldn't suggest changing any more settings or even experimenting on CPAP. Mikan should continue weaning by extending his time off the ventilator. So, right now we are to continue taking Mikan off twice a day for an hour each. After four days, we are supposed to increase that time by 5 minutes each time. This will continue until Mikan is off the ventilator the entire time he is awake. He also mentioned the possibility of granulation tissue forming inside of his trachea which may need to be removed before the trach comes out, but that is an issue for the spring when we'll experiment with capping the trach and doing sleep studies to determine whether or not Mikan is ready for life without it. In the spring the pulmonologist also mentioned using a flexible scope to view Mikan's upper and lower airways to check the status of his laryngomalacia.

The stoma therapist/ostomy nurse gave us "the pink dressing" for the g-tube. It's a dressing for wounds that is foam and is supposed to absorb the moisture so it won't sit on his skin or a gauze pad. We're supposed to leave them on him for 3 days a time and in a week his stoma will heal. So far we haven't been impressed. The pad got pretty nasty after only 12 hours, and his skin was wet, so we had to change it. If this doesn't work, after a week we may have to go back to get silver nitrate put on it. The nurse said it will cause him pain, so she wanted to try and avoid it.

Speaking of silver nitrate...Mikan has another large granuloma around his trach stoma. We had to call the ENT to bump up his check up so she could take a look at it. (Actually, I cancelled for tomorrow since we are supposed to bombarded with the snow storm of the century and rescheduled for next week). Last time the ENT used silver nitrate to stop the growth and we applied steroid cream afterwards. This worked nicely. We've been using the steroid cream for 2 weeks though and it continues to grow, so I'm guessing we'll need to use the silver nitrate. Mikan will love that.

Meanwhile, I (Jenna) am fighting my first cold of the school year. Yesterday morning I began to feel a little congested, but by last night, I felt miserable. I knew I had been lucky to be evading the school germs this long. I am trying to stay away from Mikan as much as possible and allow for for Mikan-Daddy bonding time. :)


awesome aunt annette said...

When I played the second video of Mikan crying. JT started laughing and then starting growling and pointing at the computer. They were talking to each other, it was so cute.

Biggest FAN (favorite aunt Nikole said...

It's so good to hear Mikan's voice. It was fun to talk to him on the phone this morning too. We also loved the concentration and focus he had when he was sucking on his thumb, so adorable, he wouldn't even look at Jenna when she called his name. Jenna, I hope that with the weather so cold my brother thinks about the heat in your house. Maggie wants to tell Mikan that she wants to come to see him soon and that we have a new puppy named Hank and she can't wait until you can come to see him. Jack wants you to meet Hank too. We also just loved the pictures of him, especially the black and white one, he's so cute!

Mary Ann said...

Mikan sounds wonderful. It's so good to hear that little guy make noises.
I love the pictures Krissi took. (especially the one of Mikan and you Jenna) Angela mentioned that there were quite a few real "cute" ones. Will have to see them sometime.
Hopefully we will see you soon.
Take care of yourself (Jenna) and feel better.