Right now, Emily and I are back at CHOP (Children's Hospital of Philadelphia). She had her
g - tube (gastrostomy tube) placed this morning through laproscopic surgery. The general surgeon was able to complete the surgery today after the doctors from Interventional Radiology were unable to finish the first attempt at placing the tube earlier this month. Her colon was in the way that time, but this time, the doctor was able to manipulate and move the organs to get the correct placement.
And during the surgery, they removed the nasty little ng tube from her nose!!!! Wahooooo, her face is free and clear of tubes and tape! She won't need to wear a sock on her hand anymore either. She can touch and rub her face as much as she wants now that I don't need to worry about her pulling the tube out!
The surgery involved making three incisions, one on her right, one through her belly button, and one on the left where the mickey button was placed. This type of gtube is more of a button/valve rather than a tube hanging out of her belly. The incisions are minor and the mickey itself is only maybe 2 inches long or so, so not too big.
She has been in pain and she's been having some trouble keeping her sats up. When she tries to move her legs, she's in pain from her tummy muscles being cut and she gets so upset, she holds her breath! So we've had to keep the oxygen mask nearby and have had to use it quite a few times. But she is getting pain medication as well, so she is mostly comfortable, except when she moves too much.
We are now on the surgery floor where we will stay until Sunday it seems.
Thank you for all of your prayers and thoughts for Little Miss Em - who once again is our little trooper!
Surgery day Update
After I typed the first part of this update, Emily started having the desat episodes (difficulty breathing) more frequently, and not just when she seemed to be in pain. Her nurse, Shawn, noted that she was having stridor (noisy breath sounds) and her breathing seemed labored. He put a call in to the ICU because he felt like she needed to be more closely monitored. I was reading on the couch and was popping up and down every 5 minutes or so to put the oxygen mask up to her face to bring her sats back up. Her numbers would drop in to the 70s or even 60s (They should be in the 90s and ideally at 100%) but would come back up with the mask.
Then, it happened again, but this time as I held the mask, her numbers just kept dropping, her color started to change, she was looking bluish, I called for Shawn who came running. Her numbers dropped even into the teens and he called for the "code". It seemed to take forever until others came into the room, and then in the next minute the room was filled with about 25 doctors, nurses, surgeons, anesthesiologists, the crash cart, the respiratory team, and the social worker who stood with me the whole time talking to me and patting my back as I sobbed off to the side of Emily's bed. They told me she was crying, but I couldn't hear it. It certainly wasn't her normal cry, just a very weak one. I was told she would be going right up to the PICU, and within minutes they were giving her meds and using the oxygen mask and an oral airway device to keep her breathing.
When we got to the PICU, they made the decision to intubate her. They put a tube down her throat so the ventilator could breathe for her. Later I was told that they "think" the pain medicines she was given after the surgery, although she was given appropriate doses for her size, were possibly more than she could handle given her already complicated medical issues. So she will stay on the vent overnight and they will try to wean her pain meds and oxygen levels so that she can come off of it tomorrow morning.
Please continue to pray for our little girl.