Fiesta Friday - April 25

Let me just start off by saying that I love parades - really I do. But whoever planned the Fiesta Parade route needs to be shot in the foot. Whatever made you think it was a good idea to cut off a hospital entrance for a parade??? And whoever decided to allow the school buses to park on the other side of the hospital needs to shot too. Now that that's out of the way...

We've had an eventful Friday! When I got to the hospital, Baby Girl was awake and off the ventilator - YAY! Dr. G decided instead of being on the ventilator continuously this weekend, she wanted it only when you were sleeping. That was the initial plan / proposal anyway: ventilator when sleeping to help give your lungs support and minimal assistance during the day. So yesterday's plan was out the window by this morning: trach collar when awake on the lowest possible oxygen level and ventilator when asleep with the lowest settings needed to still give you a good break. She also changed the breathing treatments to be as needed - you were getting them every 12 hours but weren't having any issues so she changed that up too. 

Then at about 8:30 you started coughing a little - you were sounding wheezy so we called the RT and we went ahead and gave you your breathing treatment. You kept coughing, but it turned into more of a gagging cough. I suctioned you a few times but nothing was coming out and you had this look in your eyes like "something is wrong". I wish you could use words, but am SO glad you speak so clearly with your eyes!

We called RT back and she wasn't sure what to do so she called the trach nurse who suggested we do the normal trach care so she could see if it looked like anything trach related. We couldn't see anything out of the ordinary, but she said your breathing sounded a little diminished on the left side so they ordered a chest x-ray to look at your lungs. Nothing there. They called ENT but she was off today and didn't answer; the ENT on call said: keep an eye on her until Monday. Thanks. Then your ENT called back, we gave her the run down and she said she'd be in as soon as possible!

This is where the whole parade thing comes in to play. DOCTORS NEED TO BE ABLE TO GET TO HOSPITALS!!!! You were extremely irritated at this point and couldn't stop coughing / gagging. The trach nurse and RT put you back on the ventilator and that seemed to help some but not completely. When ENT got here (sorry to the police man directing traffic she almost ran over - you really shouldn't stand in the middle of a hospital entrance) she did a bronchoscopy (small camera into her airway to see everything) but didn't notice anything out of the ordinary. She looked at the x-ray and noticed that the trach tube looked a little off.

For whatever reason (surprise, surprise - you're doing something no one can explain) the size of the trach tube is all of a sudden too small and instead of curving down like it's supposed to, was just sticking on the back of your airway. So when you breathed too deeply, or moved your head, or when we were doing the trach care and shifting it around it was just rubbing and rubbing and rubbing on your airway :(

So after several attempts, they got a larger trach tube (bigger diameter and longer) in, got an x-ray and seem happier with how it looks. And you were back to your happy, smiling, cheerful self within five minutes. You loved all the attention around your bed, but when I was finally able to come back over there I took your hand and you would not let go. You kept looking at me until you finally fell asleep - exhausted from all the craziness and not getting a morning nap because you kept waking yourself up coughing.

That was all between 8:30 and 2:30. And I'm drained. You certainly like to keep everyone around here on their toes!

In other news, Dr. G wants to do an MRI on Monday of your brain and brain stem. We've never done one of those and she wants to see if maybe they were getting some false positives on the sleep study, or if anything else is going on with your brain that could cause the sleep study to read so differently than your normal sleep habits. You didn't have any problem adjusting to quiet and dark when you were home for two weeks so they don't think that's as big of a factor; you slept, just had a lot of episodes. So more investigating is being done as to why it was such an "off" night. 

Hopefully we'll have a much more quiet, restful weekend and we'll see what Monday brings!