Tuesday, May 1, 2012

On the right track

Finally I can rest. Sunday brought the scariest experience I have ever had with Audrey. Just as I was getting to go downstairs for the CureMito event, she woke up crying that her arm hurt. Her IV was out again. The doctors had decided that if she lost her IV they would place the PICC at the bedside with conscious sedation. Everyone was assembled and Audrey thought the hats and masks were kind of funny. The first versed dose makes a drowsy, goofy girl. They give fentanyl and she a little less drowsy and trying to sit up. Three doses of each are given and she is maxed for the amount she can receive on the floor. The doctor says sorry she will have to get her line in IR and everyone leaves. In the meantime Audrey is increasingly restless. She wants me to hold her but when I try to pick her up she starts choking me and pulling my hair. I try to put her down and she grabs on so tight I have bruises. She is shrieking and kicking, something is wrong! The nurse calls the doctor who says she was just disoriented, no way, this is a drug reaction! I hold her in my arms while she screams "Help me!" at the top of her lungs, kicking and thrashing around. We are both crying. I have never been so scared for my girl! Finally after an hour she falls asleep. She ended up sleeping for 12 hours! While that is normal at home, it's impossible in the hospital since they bother you so much. I thought about in January when she had fentanyl in the recovery room after her g-tube was placed. She acted in a similar manner (though not as severe). At the time we thought it was pain but maybe it was the medication! I call a friend who's husband is an anesthesiologist. He says some kids have disinhibition with fentanyl. I quickly google "disinhibiton and fentanyl" extreme irritability, agitation, outbursts, can have hallucinations. That was definitely her! She is scheduled for the morning for her PICC placement and G-J tube and I'm really scared we will go through this again.

Monday morning comes. I am sure to have my husband come because I am not strong enough to go through that again. A mom can only take so much helplessness and I knew I would have to leave the room if that scene played out again. We went down stairs and I made sure she was documented to have a reaction to fentanyl. I spoke with the radiology nurse practitioner, the physician placing the line, his nurse and finally the anesthesiologist. Making sure all of them understood what happened and that she was not to get fentanyl again. Off they took her. I was able to go into to floroscopy with her for the induction. They decided to give her only gas and they would try morphine if she need any pain control. She was such a good girl and so brave with the mask. Very quickly she fell asleep and I left. It's really hard to see your baby go limp and unconscious, even knowing that it is intentional. Though she was scheduled for an hour ant even 40 minutes goes by and our pager goes off. Shes done! We sit with her in recovery and after some initial confusion (they put her pulse ox on her thumb she sucks on!!) she lays quietly in my arms. Though she continues to sleep, at one point she asks for her blanket and then her hair before falling back asleep. This is the best recovery ever!! Her dad and I breath a sigh of relief. I think we have found the reason she has such a hard time with anesthesia and hopefully it is a simple solution.

So now her procedures are done. There is nothing else we need to do to her. She has her new G-J tube and she has a PICC so we don't have to keep poking her for IV's. Now it's time to start feeding her to get her to gain weight! She is on full TPN now that she has her line. Fingers are crossed that she is able to transition to feeds soon and start gaining weight.We are hoping we won't be here too much longer! Here are some pictures of her stay thus far...
this was at admission, not a happy camper!

so skinny!
this is how she spends her days
back from her procedure, doing well
"Cat" her Tubie Friend!

Finally feeling like playing! That is her PICC in her left upper arm and her new G-J is in the same spot as her old g-tube.

So that's where we are. Hoping she is able to get home soon!

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