Tuesday, December 4, 2007

This picture was taken a week or so ago - I just like it.

On Saturday around 6:00am, Bryce woke up to change C's diaper and to suction her (get mucous out of her trach tube). She started to get fussy, which is not unusual when we're messing with her. This time however her pulse oxymeter (a machine with a probe taped to her toe that reads how much oxygen her blood has in it) started beeping, telling us that her O2 levels were dropping.

We turned up her oxygen, suctioned her again (in case anything was blocking her airway) - still nothing - she just got madder and madder... and then went limp. We changed the trach (s.o.p. when she' s not breathing properly) - still nothing, now turning blue/purple and not moving, eyes glazed open. I ran downstairs and got the breathing bag (you connect that to the trach and push air in to breath for her) while Bryce held the oxygen flow directly over her trach. Bryce bagged her while I called 911. Our first time doing that.

We bagged her and held up the oxygen. Her heart was still beating though, so we didn't start official chest compressions. After about a minute or so, she started breathing again and her 02 levels began to creep back up.

The EMTs/Fire Dept. arrived (4 big dudes carrying massive bags of equipment), marched upstairs to our bedroom and listened while we explained the situation. They didn't do much (said we did everything that was immediately needed) and set her on a small gurney to get her into the ambulance. The main guy told us that what we did probably saved her life. I'm sure he says that to everyone, but it was nice to hear all the same.

Bryce rode with Caro to the hospital while I gathered our stuff together. Once in the ER, she had two more episodes like the one described above. Luckily, the doctors and nurses were there to evaluate them and watch over her. The attending peds ER doctor said that the episodes were either due to seizures or hydrocephallis (swelling of the brain), and they gave her phenobarbital (an anti-seizure med). This medicine made her very sleepy. A CT scan was done and, from that, the neurosurgeon ruled out hydrocephallis, something we were very grateful for because the treatment for that is a surgery that places a shunt in her brain which drains extra fluid.

So, after 13 hours in the Peds ER, Caro was admitted and taken up to the PICU to be monitored. She got transferred to the regular Peds floor the next day and has been there ever since. Her neurologist told us that, based on what we described and on her EEG, MRI , and CT scan, what she had on Saturday was not epileptic seizures but breath holding spells. If children are prone to these spells, they'll start having them around her age.

They're not permanent (they can stop happening anywhere from 18months-4 years), and, as long as they don't last over 2 minutes or so (I know, 2 minutes of blue/purple baby that I'm bagging - what?!?) then we don't need to call 911 next time. The neurologist gave us some techniques to help her when they're happening as well as ways to prevent them. They don't exactly know what triggers this in some children's brains, but we're happy to hear they're not epileptic seizures, as those are permanent and much more serious.

We thought she might go home Monday, but she started breathing very heavily on Monday afternoon. She may have some sort of viral infection, but one that just causes the fast, heavy breathing - her sats are good, no fever and, she isn't acting like she's sick or in pain. Today (Tuesday), her breathing has slowed down, so it looks like she'll be out of here in a day or two (famous last words:).

Sidenote: she had a follow up hearing test done here. It looks like there is hearing loss, so she may need hearing aids. The ENT will give her one more test to know exactly what to do.

Life with Caroline is not easy. I wish we had more positive news to share, and I'm hopeful that we will someday soon.


  1. Hi

    I've read your blog by chance one day and was really touched by you and your brave little angel. Just a note of encouragement and my blessings to you both.


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