We are home

We actually got to come home last night. What a wonderful Thanks Giving treat. We didn't get home until after 11, but hey, at least we got there, something to be thankful for. Q is still quite sore. Her belly hurts from the surgery itself, poor bug. But she is tolerating her feedings wonderfully. Now we are going to focus on packing the weight back on that she lost through all of this, i'm sure it was quite a few pounds because she is so light right now.

 Right After Surgery

The Next Day

The Following Pictures and Video Are of the Day Right Before Her Crash

So, what's the verdict? What exactly happened to cause Quinn to get acidotic? Hmmm.... That's still a mystery. When we came back to general floor, a few of the nurses and staff who were there when Q crashed, before she got taken to the PICU couldn't believe that it was Quinn, walking (though very slow and unsteady). they were cheering her and were just amazed.

They were saying that they couldn't believe it because Quinn was so sick on 5100. and she was. She was the sickest kid on the floor, a rapid response to the PICU. When she crashed, she was in severe respiratory distress. There were honestly moments within those 24 hours that Quinn was her sickest that I thought she was dying. I learned that they didn't intubate her because of her blood pressure. It was too low to sedate her. and so she was struggling to breathe for a long time, but as long as her sats stayed up, they didn't want to until she couldn't keep them up anymore. Joe almost asked for them to just do it because she was struggling so much. It was painful to watch. They had to thrust her jaw forward and hold it there, switch her position multiple times, nothing seemed to stop her retractions...  except time.

The Following Pictures Were from the Day She Crashed

This Is How She Was Sitting When She Started Crashing

Q was on D5 IV fluids when she crashed. However when we got to the PICU, it was determined that she was hypoglycemic, and severely dehydrated. She got... 3 or 4 IV fluid boluses within a 4 hour period and tons of infusions to help her blood sugar. They wanted two lines for her, but she had no more veins. They had to place a PICC line. Her lowest blood pressure that I noticed was 71/(some teen#), I have no idea if it got any lower than that. she kept needing norepinephrine every hour to keep her blood pressures at a safe range. She was getting boluses... tons and tons of IV fluids, but she wasn't peeing. And so, they had to give her a catheter. Poor little booger. She was also connected to two IV antibiotics and two stomach drains. By this time, Quinn had lines everywhere and her face was swollen.

Below: when she started opening her eyes (Monday afternoon)

And she did get better. by evening the next day, Quinn was awake and even doing her best to color. the next day, she almost had enough strength to sit up on her own. And the day after that, She was sitting up. Though she was still having low blood pressure issues, and still kinda does, she dose well with it. she got better so quickly, it was a miracle.

 The picture below is of Quinn with the Respiratory Therapist. She REALLY liked him. Not only was he nice, but he was cute too lol! He was with Quinn when she started crashing and when he saw her here, the next day, he said it was like night and day! and it really was.

Quinn's surgeon said it might be a good idea to continue pursuing the mitochondrial or any metabolic diagnosis. There is no explanation for why she became so sick, and then recovered so fast.

But the surgery resident had her own theory when she came in to discharge us last night. She said that they really don't know, but hte only explanation they could come up with was that it was caused from anxiety and pain medications.... hmmmm.... that's a sucky explanation considering that my child was in severe pain, at the time of her crash, she was on a very tiny amount of morphine, and even weaning her from that didn't really change much, and I don't know how anxiety can cause hypoglycemia, respiratory distress, severe dehydration and low blood pressure... that's stupid to even suggest that it's what happened. Her surgeon said that her response to the surgery was definitely not normal at all. My guess is that it has something to do with mitochondrial myopathy...

we are still waiting on Dr. B to review her records. We don't even have an appointment date for him.

These Are Videos of The Seizures She Was Having The Night and Morning Before She Crashed (I was unable to get the worst of these on tape.)