Sunday, June 22, 2008


Off the vent!!

Yes indeed, Robbie is the proud new owner of a CPAP mask which he hates with all his passion.

We got to the hospital today and his nurse said that after rounds were done, they were extubating.

I went off to pump around 3 and when I got back, the respiratory team was there preparing to do the deed.

Robbie did not enjoy the process at all. First of all, the bar that held his vent in place was like crazy glued to his face. They have some stuff to ease the glue up but it was still horrible to get off. Then they kept moving his feeding tube (up his nose) and he had the funniest, craziest sneezing fit. He must have sneezed 6 times. Finally they just took it out because they were pulling on it anyway, so it probably wouldn't have been in the right place, and it was driving me crazy.

But the real horror came with the CPAP mask. This happens to be the one that has prongs up the nose. HE HATES IT. I mean, HATES it. He pulled it out of his nose within 5 minutes of the resp techs leaving. He wouldn't settle down at all. I spent a good 2 hours with my hands on him. The ONLY way he would settle down is with my hands on his. I didn't even have to let go to upset him again- just lessening the pressure holding him would do it. He'd kick one leg and get his arms going like a little windmill. That causes to main problems. 1) He would pull his prongs out. 2) All that moving around uses up all his oxygen. His nurse pretty much spent the afternoon parked next to him. I lost all feeling in my hands trying to soothe him.

Finally, David and I decided we were going to go down to the cafe for dinner. No sooner than I stood up, he wiggled out of his heart rate sensor and scared the shit out of me and his nurse. She had went down the hall to get some meds. When his monitor starting screaming that his heart rate was zero, another nurse came trotting over very quickly to assure me he was okay. Fortunately I have learned to read the monitors well enough to know he was fine (after the 3 second freak out) but his nurse came running down the hallway to check him. Way to get some attention, kiddo.

Finally, we headed to dinner. We came back a short time later and the nurse was trying to soothe him again. As I suspected, he was PISSED again. Heart rate up and everything. Mad as hell!

I soothed him for a bit and finally his nurse came over with a warm blanket. We couldn't really swaddle him because of the CO2 monitor he was wearing, but with the warm blanket wrapped around his snuggli, I think we fooled him into thinking it was my hands. FINALLY he slept. No kidding, he fussed for 3 hours. You wouldn't think a baby as little as him would have 3 hours worth of energy.

Anyway, from there, she was able to start weaning his oxygen down. He did quite well.

We just wait and see. Dr. C says he hopes this will be "the end of his relationship with the vent" but it's always possible he could have to go back on it. Could be tomorrow, could be in a couple of weeks, could be forever. It's up to Robbie.

But this is a positive step.

It's especially good because one of his cultures came back positive today. Yes, he has his first official infection. His trach aspirate was growing a small amount of bacteria. The good news is that it wasn't in his blood yet and he's already on the antibiotics so it was caught very early.

Dr. C isn't really convinced that was affecting his CBC, but it's better to be cautious for sure. And the fact that the tube is out is better. It's hard to fight the infection when the thing growing the bacteria is still in there.

Overall, it was a good day. I expected to be more upset about the infection, but I think the fact that I know it was caught super early and was mild is helping. And it's exciting to have him off the tube- even if Robbie doesn't know it yet.

We didn't get to Kangaroo today because of all the uproar, but I understood. As much time as I spent with my hands on him, it was practically a Kangaroo. And tomorrow, we hope he'll be settled down and get to give it a real go.

Keep praying.. we need infections cured and for Robbie to tolerate the CPAP well and stay strong to breathe for himself.

More pictures coming soon!



Two Hands said...

Great news. Was up late and just thought "one more check on Robbie" and lo and behold was this news.
Great news. Even if he has to go back on the vent, he's come soooo far and is quite the little fighter.
Too bad you can't distract him from the prongs, but he seems pretty determined. I don't think you'd be able to deter him anyway.
I can't stand that stuff they stick things to you with in hospital. Maybe next time try wetting things down with a little virgin olive oil first if you can (and want to, of course).
Thanks for that post. I'm going to bed grateful.

Heather said...

Glad to hear Robbie continues to progress. You're all in my prayers.

Anonymous said...

YAY!! I'm so glad he's off the's hoping he stays off. I am so excited over how well he's doing Trish. He has come a long way in such a short time. :)


jess said...

Yay! He's such a stinker and I love it. That kids got fight, that's for sure! I'm so glad he's off the vent, it's progress, even if he does have to go back on it. I'm still praying for your family.

Kristin (kekis) said...

Sounds like some positive steps today! Robbie's such a fighter in so many ways. Tell him to keep it up. Prayers are continued for his strength and comfort.

Fertilized said...

YAH for progress

Amy said...

Aww, Robbie ... still praying! Hope he gets used to the CPAP soon.

Hyperfertile Infertile said...

That is such great news about the vent! I remember when they extubated Charlotte and said they'd try it, but she might end up back on it. I knew they really meant it, and that she'd really be off it, when they finally took the machine out of her room the next day! That was the best feeling ever.

Tracy said...

That's great news that he's not on the vent. I hope he calms down abut the CPAP. You had the magic tough though. Good job, mommy!
Hope he gets rid of the infection soon. Lots of prayers for your family.