Thursday, March 12, 2009

The Big 3: G-tube, Trach, and Vent

We had a visit with the pulmonologist and pediatrician yesterday. After witnessing Mikan's breathing with the Passy Muir valve, his pulmonologist suggested we give him a break. He said that he looked a little labored with his exhalations, and he suspected it may be due to excess granulation tissue on the inside of his trachea. We always knew this was a possibility. He would have to have the tissue removed before his trach ever came out anyway. But the pulmonologist wants to do the surgery sooner rather than later. In fact, he wants to do it within the next 3 weeks. We don't have a date set yet. He will use a flexible scope to examine Mikan's upper and lower airways for signs of malacia, while removing any excess granulation tissue from the inside of his trachea. If his airway looks good, pulmonologist will order a sleep study (that has to be performed at Riley) where doctors cap Mikan's trach and see what his breathing is like when he is in his REM phase of sleep. He wants to use the results of the sleep study to determine whether or not Mikan is ready to ditch the vent for good. If he sleeps well, we may do 24-hour trials off the vent. If he can tolerate being off the vent, with any luck, the trach will come out soon afterwards. But we know not to get our hopes up at this point. If you read back, there were a lot of "ifs" before that last line. And he's Mikan. Mikan just does his own thing.

Anyway, a little bit of bad news to report. Our g-tube worry-free days were short-lived. His granulation tissue is back (not as severe) and causing him pain. The skin hasn't healed over it. It was bleeding most of today. I don't know if we need to find a doctor here to continually silver nitrate it. I put some steroid cream on today, but I was ordered to use it sparingly by one doctor. Is silver nitrate a one-time thing, or do patients usually have to repeat an "aggressive treatment every few weeks? We were told by the last doctor we saw that "dabbing" doesn't work. She didn't recommend using silver nitrate at home because she said it needs to be done "aggressively." Does anyone else have any experience with this? Or an opinion?

Mikan loves walking lately. He still has made very little progress with sitting up and rolling over, but he loves to show off his leg strength.


Hope said...

What great news! Even if all those things aren't done as fast as you hope, there is an end in sight. You can see the light at the end of the tunnel.

I'm sorry I don't know much about g-tubes. We were, however, told that Ava may need a nissen fundoplication done this summer.

Tell Mikan to come over and teach Ava how to stand up!

Marissa said...

Wow, our lives are are going down similar paths. So many "ifs" involved with our kiddos. And they sure do things their own ways in their own times!

Sorry I don't have any advice about the g-tube. Knock on wood, Marissa has never had any issues with hers. I hope it gets resolved soon. It sounds so painful and frustrating.

Way to go on the walking! Great job Mikan!

Praying for you guys all the time,


Jason and Rachel said...

Thanks for the post on our blog and the compliments on our pictures. One of the NICU nurses who works nights does all of the boys' pictures. If you'd like her info let me know!! It looks like Mikan arrived in the NICU just after the boys left. Parker was d/c'ed on 2/23 and Quinn on 3/1. It looks like you live in our neck of the woods. Maybe once the weather gets (reliably) nicer we can meet up at the park!

Ann said...

We've always had silver nitrate sticks at home and used them as needed. That said, Jack didn't have the extreme granulation tissue issue that Mikan is having. But, I don't see why you can't try and use them at home. If you can handle a trach and vent, you can handle silver nitrate sticks (me talking to your doctors, not to you :-)

I'm sorry Mikan is having such g-tube issues. It sounds so painful.

Good luck with the sleep study!

Julie said...

Our little Maisy who is 20 months old has the big three and seems to be about at the same point as your little guy. We are adopting her and she has just been with us a few weeks now. We have used silver nitrate sticks at home for several years with another one of our g tube kiddos and it works well although we have a prescription for a numbing cream to use first--I would suggest that. Glad I found your website. It is nice to follow someone else's journey that is similar to ours...