Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Monday, November 14, 2011

Headaches and Pigtails

The best thing about the Glen is that the babies come back from the or with way less tubes and wires.  Xavier came back without a breathing tube, which makes a load of difference.  All he had was a chest tube, a bandage over his incision site, some lines going into his heart, an art line in his wrist and an iv. He was a bit swollen but not as pale as i had expected. To be honest he looked great..but he felt horrable.  He wasnt really awake but he would cry out often and whine .  We had been warned by everyone that the Glen produces killer headaches.  Nate and I both suffer from Migraines, so I could only image the pain my little fighter was in.  The had in on Morphine and Tylenol.  You always knew when it was time for more meds.  Nate and I sat by his bedside all afternoon and into the night.  We were waiting on rounds when I started to notice his stats falling.  Being that I was his home "nurse", I felt a sense of concern, because his heart rate and O2 was falling.  When they rounded they notices the same thing and starting messing around with things to try to get him back up.  I had to leave.  When I left his heart rate was 82 and his o2 stat was 73...NOT GOOD.  I went to the bridge and began to pray.  Nate had stayed in with X and we were texting back and forth.  I knew that he was not being 100% honest with me..just telling me what he thought I needed to know.  His O2 dropped..LOW..they gave him NO2 to help his stats.  That brought them back up, but something was still wrong.  They did a chest X-ray and Nate tells me that the attending said.."That's not normal"...Here we go again.  Nate came out and told me that Dr. Gaynor was on his way in.  Turns out that some air was trapped in his chest in a spot that the chest tube could not get it out.  It was a lot like last time except for there was not much blood, just air.  The pressure of the air had made his lung collapsed.  They were going to put another pig tail tube in.  It is just a small tube at the side of the chest to help the chest tube drain.  Dr. Gaynor was there in 10 minutes.  They got the tube in and his stats were fine again.  This seems to be his MO.  We stayed with him for another hour or so and then off we went to get some food.  We totally missed dinner.  At least now we were not limited to crappy McDonalds food.  They recently started to keep the cafe open later at night.  After we ate we passed out in the sleep room.  All was well.

The next day X was awake most of the time.  Speech stopped by to check on him.  We fed him and he ate really well.  She said that she wanted another swallow study to see if we could start to take him off the thickener.  Things were going well.  He was still in pain, but all in all doing ok.

Then he started to vomit.  He couldn't keep anything down.  They took him off feeds and just gave him IV fluids   The nurse said that maybe we pushed him with the formula.  Often they will give kids clear liquids before the formula but since they could not thickened it, he couldn't have it.  Friday night was rough for him.  He just seemed sad.  The nurse called at about 7 and asked us to come sit with him.  I went and just talked to him and rubbed his head.  Later on Saturday he began to eat again.  Slowly, but he was keeping it down.  That night they moved us to a private room on the CICU.  By Sunday morning, they moved us to the CCU.  I could not believe that just 4 days after the Glen we were in the step down!!!

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