Wednesday, May 6, 2009

Robert Couch Head

This was the result of the mandatory nap I tried to force on Mikan before PT today. He was more interested in eating his suction ballard, like usual.

I cannot begin to relay my frustration over the last week trying to get Mikan's next surgery scheduled. I'm going to skip all of the irritating details and just let you know that it is scheduled for sometime near the end of June or early July.

Why so late? Well, unfortunately, the ENT about to perform the laryngoscopy/bronchoscopy with removal of granulation and scar tissue (Which apparently about 1 in 4-5 trached kids needs) is pretty sure that a lot of the mess in Mikan's larynx is due to reflux, and he wants Mikan on a reflux med (Prevacid) for a few months before the surgery to see if his airway will improve at all on its own. The surgery will still be performed; however, the hope is that the procedure will be less traumatic with less "issues to resolve," meaning a quicker recovery time. I am appalled that reflux could be the cause of all this since he has a Nissen, and even before the Nissen, he rarely ever threw up his breast milk (probably 5-7 times in his entire life). I know reflux can still occur without vomiting, but I thought a Nissen would take care of this... We still can't be certain until he is on the med for awhile and then they take another look. If Mikan doesn't respond well to the surgery, then we may have to discuss the possibility of a reconstructive airway surgery. I spoke with the ENT about that today, but right now he hopes that it won't come to too.

Unfortunately, this puts us in a poor position for getting rid of the trach this summer (He would still need to recover from the surgery, have follow-up to make sure the surgery was successful, downsize the trach, get a sleep study...) Since he has a good track record of not getting too terribly sick, perhaps it is still a possibility. We're not going to give up hope just yet. I just have to keep remembering that it's not our plan. We'll embrace whatever situation God has decided to give us.

On a different note, Mikan finally responds to his name!...And "Robert Couch Head." John was practicing calling Mikan's name from different areas of the room the other night. We were excited at first because he was responding so attentively. But then John called "Robert Couch Head," and, sure enough, he responded just as cooperatively. Yep, he's our little Robert Couch Head.


Michelle and Sean said...

I'm sorry, so frustrating. I swear some of these guys want to blame everything on reflux. Maggies old cardiologist said that maggies heart problems were from reflux. Although that is not the case per the new cardiologist. She also has nissen. So silly. Well for the benefit of Mikan it would be nice if that was the cause of the problem. It would probably be easier for him. Although not fair that he might not be able to get his trach out because of this. Hope it all gets worked out soon. Our prayers are with you guys.

Jamie said...

all i can say is that you are in our thoughts right now. stay positive...which i know i have no right saying because i have been miss negative lately...but i think you are better at it than i am. :)

Marissa said...

I am sorry about the possible setback about Mikan's airway. These kiddos always know how to throw a curveball at us, don't they? Marissa's airway news has been so good lately, I am waiting for that other shoe to drop. I'll be praying for things to go well for MIkan and you guys.

I just love the kooky little names we give our kids. I often call Marissa "Marissa Girl Face Head". Don't know why, it just comes out. Hopefully they won't disown us later when they find out all the goofy names we called them when they were younger! ;)

Have a great tomorrow,