Saturday, November 15, 2008

For the majority of Mikan's short life he has been unable to make noise. Now that he is growing bigger and stronger he is beginning to regularly be able to pass air past the sides of his trach and through his vocal chords. The above video is an exciting step for him.

Nina came to visit Mikan on Wednesday and she witnessed his stellar eating progress with baby foods. Mikan still rarely takes the bottle (1/2 ounce every 3 hours if we're lucky), but he is doing an impressive job with rice cereal and stage 1 baby foods. We anticipate going right to a sippy cup later on and completely skip the bottle step.

We attended the Ronald McDonald fundraiser friday night. There was a clip of us in a video explaining our story and promoting the Ronald McDonald house. Good food and a nice night out.

At Mikan's ENT appointment this week his doctor said that she wasn't going to increase his trach size unless he had problems oxygenating, since downsizing the trach is eventually part of the weaning process. Right now he is doing wonderful with NO steroids, 1/4 liter (23% 02) night and day, and happy the majority of the time, even during trach care sometimes.

Mikan's pediatrician weaned his vent pressures a little. Now his pressure support and pressure control are 22. These are nearly half the pressures he was on in the NICU. PROGRESS! We had to take him to the South Bend Medical Foundation for blood gases to check to see if he was tolerating the change well. There was a long line and we were nervous about being late for his ENT appointment, so we played the "ventilator card" Nurse Bev from home care confidently walked up to the front desk and said, "Excuse me. We have a baby on a ventilator who needs blood drawn. Is there anyway we could be seen next? He really shouldn't be out in public." It worked, we were ushered in. After several missed attempts at sticking his veins and Mikan turning red and furious, they finally extracted an adequate amount of blood. We miss NICU blood gases. His doctor ordered a venous (spelling?) draw instead of a capillary (heel stick) which resulted in a lot more torment for Mikan. Hopefully others won't be as traumatic. We haven't received the results yet. Another frustration of being home. We knew results at the NICU instantly. But clinically Mikan appears to be doing wonderfully, so hopefully we can keep the vent pressures low.


Joshua said...

Hi John and Jenna,
We had the same problem with drawing blood for Jonah and Aaron at LaPorte Hospital. They struggled terribly with Jonah, and were completely unsuccessful with Aaron. I took them home and contacted the person who is in charge of the lab there. After that, we got very personal service from "his best phlebotomist" who was able to draw blood with a heel stick. That was much easier, and when they had to go back for more tests 2 weeks later, I called him again. We got the same level of service and heel sticks for both of them. So good for you for being the squeaky wheel.

Thank you for posting the video of Mikan talking. Isn't it so wonderful to finally hear their voices after all of their NICU struggles?

Josh, Tina, Jonah & Aaron

Biggest FAN (favorite aunt Nikole said...

The video of Mikan talking made our day. The last time we visited, I could tell Mikan was trying very hard to talk.
It was such a sweet blessing to watch him be able to make baby sounds. It made me cry! The kids thought he said some specific words in there too. Maybe "Jack Rocks". That's what Jack thought he heard anyway. Thanks so much for posting the video! Love you all!

Hope said...

Oh wow, listen to his sweet voice! I love it. I hope they don't increase his trach size. I think you should play the vent card anytime you want, you deserve that small luxury of no lines.

It sounds like he's doing so well. You both deserve parenting awards (and probably a license to practice medicine, we know you know enough about it!).

Life in the Bend said...

He is getting cuter and cuter. It sounds like he's saying "Affleck" - perhaps he has a career ahead of him as an insurance spokesperson? :)

Anonymous said...

Whoo hooooooo! That is such exciting news!

Aunt Deb said...

The nurse did exactly the right thing. He shouldn't be exposed to a lot of people who may or may not be sick. I did that many times with my foster babies who were born prematurely and nobody ever made a fuss. The worst place is the pediatricians office. They always put me in a room right away to avoid exposure to sick kids in the waiting room. Good for her!!