Tuesday, April 28, 2009

Chalk Up Another Surgery

We arrived at the hospital at 6 a.m. this morning. Way too early for all of us. The procedure took about an hour, and Mikan was extremely irritable afterward. In fact, we were a little upset because he was delivered to us wearing just an open trach with his ties on (very loose I might add; he almost decanulated as soon as I took him from the nurse), and his trach had blood spurting out of it. His ballard and humidivent were in a plastic bag, and John and I had to pin him down to redo the trach ties, add a missing trach pad, and attach the ballard and humidivent. It took about 45 minutes to calm him down. John eventually turned on ESPN, and Mikan finally stopped crying to watch it.

The surgery uncovered some good news and some bad news. Good news first: Mikan's lower airway below his trach is in good condition. His malacia has improved enough for Mikan to be comfortable breathing on his own. Bad news: the area above his trach and below his vocal chords is a mess. There are large amounts of granulation and scar tissue. Because this is the area through which he exhales with the Passy Muir valve, it now makes sense why he hasn't tolerated the valve in awhile. The tissue was so large and difficult to remove, that the procedure was unable to be done today. An ENT has to use a laser through a scope to remove it. So we've been referred to Riley for this to take place as soon as possible. It will be performed by the ENT who put his trach in (Dr. Augostino) which is reassuring. (Dr. A took a job at Riley shortly after he put Mikan's trach in, and we were referred to a different local ENT.)

The pulmonologist and ENT were quick to tell us that sometimes this procedure takes more than one surgery, and if a worst-case scenario occurs, there is a surgeon at Riley who does the reconstructive airway surgery that he might need to see. We are not happy about the prospect of additional surgeries, ESPECIALLY the possibility of airway reconstruction. But this is a little ways down the road. We'll discuss all options as we are confronted with them. But Mikan still has a good chance of getting rid of the trach this summer, depending on how his next surgery goes.

When we returned home, Mikan took a 3 hour nap and woke up his old self. With the exception of some bloody secretions and a pale complexion, he is now our rambunctious little boy again. He is reaching over my arms from my lap right now trying to type his own section to this post as we speak.


Rachel Marini said...

Wow, I am so sorry Mikan had to endure that procedure, and that he was returned to you in the state that he was. I hate it when our kids seem to receive sub-par treatment/care.

I am very excited at the prospect of Mikan possibly losing the trach this summer! What great news that his malacia is better. I just hope he doesn't need too extensive of reconstructive surgeries. I'll be praying for your Mikan!!

We didn't take Gabe to church for the first time til this past September. It was nerve-wracking! I wish you guys the best when the time does come.


Hope said...

Poor baby, I hope he feels better fast. I hate to hear he needs more surgery, but hopefully it will be soon and he will not need more surgery.

I'm thinking of you all. He looks so flippin' cute with his glasses on, btw...

Marissa said...

I'm sorry all that happened to your sweet boy. That stinks!

I love to hear the good news though. I'll just keep praying that Mikan can get rid of the trach soon with as little surgery and pain as possible.


Gripping Mercy and Grace said...

Oh little one! Sorry to hear of a possible future surgery. I pray that if it does come that everything leading up to it will be smooth and that you will be at peace with it.

I am so glad that he is back to himself! This is always such a relief to a momma's heart!

As Hope said... I love the glasses too!!!!!

Joseph J said...

You guys are amazing! Our prayers continue on... prayers of thanksgiving for the progress to date... and prayers of supplication for continued progress.