Tuesday, February 24, 2009


This is the face of a satisfied little man on his first trip out of the New Carlisle/South Bend area. He was wearing a much different expression on the ride back. We left our house around 6 a.m. We rode in Nina's van with Nina driving, me riding shotgun and Nurse Angie next to Mikan. Mikan was in a good mood after a 12 hour night's sleep. He stared out the car window for most of the ride up and played peek-a-boo with Nurse Angie. It took us around three hours to get to Indy, and we were amazed at how well he tolerated the trip.

When we got to Riley, we stood in line at a registration desk for awhile only to find out that we had already preregistered and didn't need to wait in line. Then we were ushered upstairs where we had to wait another 30 minutes before we were called in to see the pediatric surgeon. Meanwhile, Mikan is pleasant, showing off his speaking capabilities by babbling with his Passy on. He was off the vent for most of the doctor's visit. I even found myself shushing him when we drew stares from all of his talking. I've never had to worry about my son being loud in public before.

Overall, I think we received some good news. From the surgeon's assessment Mikan didn't have any major issues that would demand an additional surgery. He does not have stomach lining growing over the granulation tissue and preventing the healing. She didn't think he had an allergic reaction to the tube. She didn't think his Nissen wrap was too tight. She said if it was, he wouldn't be able to swallow his own secretions. She also examined what we thought was a hernia on his stomach. She didn't think the gap was anything to be concerned about, apparently it was a natural muscle gap, and she thought his stomach wall was solid. All good news. These were worse-case scenario operations.

So what's wrong? Well, the doctor thought it wasn't anything that couldn't be handled in our local offices, which was frustrating (I've been calling and traveling around all the local offices for the last 3 months!). She thought the drainage was natural drainage coming from the granulation tissue and not gastric juices coming from the stomach itself and seeping onto the tissue around it. She said the key was to keep the granulation tissue under control, which doctors should do by using an "aggressive dose" of silver nitrate as soon as the granulation tissue appears (which, for us, would have been when he was in the PICU 6 months ago...whoops...). Mikan got his first what I would call "tentative dose" a month ago. This woman really attacked the tissue. It started melting away in big gobs of skin when she applied the silver nitrate. Pink granulation tissue turned black in seconds. It immediately began receding. Mikan was hysterical. He still had his Passy on, and I've never heard him scream that loudly or for that length of time. She said that this sort of "aggressive dose" should be performed early on by a physician and not done at home; however, she was impressed with the amount of tissue that receded. So the hope is that his skin will grow over the tissue and begin to heal itself. We were told to leave it open to air and stay away from any creams (with the exception of a steroid cream ONLY if the tissue returned in a significant way-in fact, she was very hesitant to even write the script for this). Leaving it open was something I preferred anyway just by my own gut instinct, as well as advice from a doctor (thanks Bash) and a friend (thanks Jan). Oh, and the balloon should ONLY be inflated 5 ccs according to this doctor. We had been told to inflate it more before we went to Riley.

Ok, well now for the "exciting part." It took awhile for Mikan to recover from all of that work. He finally settled down after some cuddling and we began the long trip home. When we were about thirty minutes away from home, Mikan began fussing. This also happened to be the time Nurse Angie was trying to tube feed him. We think it all started because he was so irritated with riding in a car with three women all day, and he refused to tolerate us any longer. Or maybe his trach got kinked. Well, he went from fussing, to turning shades of gray, to turning bluish very quickly. We were on the bypass around South Bend, and Nina had to pull over quickly and put her blinkers on. By the time I grabbed him out of his car seat, he was completely blue and unconscious. That's when I noticed his trach had come out. He must have squirmed out of it. I laid him across Angie's lap while she grabbed an extra trach. I unhooked a tie and hooked up the ambu bag. Angie began rubbing his chest and bagging him while I hooked up the 02. We revived him pretty quickly (although it certainly seemed like forever). He began breathing on his own when he regained consciousness which was a good sign. It took awhile for his sats to return to normal though. We bagged him at 6 liters 02 for a few minutes until he was pink. In the meantime, semis whirred past us, shaking the van and making us fear for our lives. So far tonight, we've been suctioning bloody secretions from the trach, but his pediatrician says this is probably from the trauma of the incident and that we should just keep watching him.

It was pretty scary to go through this in the car. The car seat forces his trach to sit uncomfortably, and it has kinked before; however, he has never lost consciousness or needed to be bagged because of it. This was the first time we've had to bag him since he's been home from the PICU. But it was a mechanical issue, nothing related to his medical condition as far as we can tell, so at least that much is comforting. No mother should have to see her child blue. But it makes you appreciate pink.


Hope said...

Wow, What a terrible thing to happen. I have to say that I've seen Ava blue and passed out and my heart hits the floor. I just can't imagine having a trached/vented baby with those issues. Huge ((Hugs)) to you. You are an awesome Mom! I hope you can all get some rest tonight when your heartrate slows down!

As far as his g-tube, thank God it was nothing that required surgery!

Marissa said...

Oh my goodness!!

First off, let me say that I am relieved to know that the g-tube issue is not all those more serious complications. Frustrating that you had to go that far away to get answers you should have been able to get at home for the last 3 mos, but it looks like you finally have your answer.

Thank God for pink!!! I was holding my breath reading that whole part. How scary, but how lucky you were to have all that help and that you were able to get him back quickly. I remember that awful feeling of seeing your baby turn unnatural colors. I'll be praying he won't have any longer term effects than just the bloody secretions.




Jamie said...

seriously...i'm done complaining about my tough day with adali. you are so strong jenna. keep up the good work.

Aunt Deb said...

How frightening! I had a similar experience with my preemie foster baby. I was alone and thank goodness she was in the front seat. I noticed she was gray and shook her arm with no response. I pulled over on on the shoulder between the freeway and an on ramp. Same thing, semis roaring past shaking the car while I grabbed her out of her carseat and started CPR! I have been a nurse for over 30 years and NEVER had to do CPR. Needless to say, we spent a week in the PICU.

Tina said...

Oh man that's so scary. I had the same thing happen with Noel in the car she turned crazy colors too. Good thing you had help, I'm sure it took you awhile to calm down. I'm glad to hear you guys were able to get him Pink again.
Good luck with his g-tube site (I know how frustrating the g-tube issue is; it's crazy our kids are trach-vented and yet the biggest problem seems to be that little mickey button that's the size of a nickle!!)