It's been a long few days. Zoe has been totally out of sorts until about 7:00 last night. She has been so hungry and irritated that she hasn't been sleeping well at all and therefore had had about 10 hours of sleep in about 36 hours- not nearly enough for a little baby just out of major surgery. She hadn't been taking any pain medication which was great becasue she wan't in pain, but her hunger and frustration just got the better of her. Jason and I have never seen her act like she did the last few days- constantly crying and fidgeting, totally uncomfortable and unconsolable. Nothing made her happy, no toys, no snuggling, not even the binky which she wouldn't let go of but was too spastic to hang on to by herself so we had to hold it in her thrashing mouth nonstop. Saturday morning I finally asked if there was something that we could give her that would calm her down, the nurse suggested Benadryll. The first dose worked great, she fell asleep for about 1.5 hours. When she woke up we gave her some tylenol because she was burning up and her heartrate was particuarly fast. When it was time to give her more benadryll, it did absolutley nothing and again she was so exhauseted she couldn't wind down and fall asleep. We finally gave her a dose of adavan, an anti-anxiety medication which helped her sleep for a few hours Saturday night before she woke up again. For about 24 hours she was on a bendryll, tylenol, adavan medication dose, none of which was helping. The oncall cardiologist came by on Sunday morning and thought that Zoe might be getting dehydrated and that could cause all of her discomfort also. She had not been getting any TPN (total parental nutrition- the IV fluid drip that keeps her hydrated and gives her calories. She has had a giant NG tube down her nose to drain her stomach bile and acid until her stomach wakes up. She was also getting a heavy duty diaretic that was causing her to pee massive amounts when she wasn't getting enough fluids anyways and becasue of this she was losing weight. She went from 7.8 kilos down to 7.3 kilos this morning.
Margi, Jason's mom, and my parents came over to visit yesterday and both Margi and my mom were wondering if the benadryll was causing her spaz out like she was. So we cut out the benadryll and just switched Zoe to tylenol and ibuprofin during the day and gave her adavan at night to help her sleep. She seemed much happier and we actually got quite a few smiles out of her yesterday afternoon. Last night she still didn't want to go to sleep adn she was exhausted so we gave her a dose of adavan and she fell asleep for about 5 hours. Her perifial IV went bad for the second time at about 4 in the morning so we had to have it replaced, but she did great. She is using her periferial IV for her TPN's and any other meds.
This morning the surgical team decided to try clamping off her NG tube and see how well she processed all her stomach bile on her own. She did great, and so we got to take out the giant NG tube this afternoon. We'll see how she handles it. If she ends up throwing up a lot, it will have to go back down. We still won't be able to try feeding her until tomorrow at the earliest and then we will start with pedialite.
She is so much happier now, no tubes on her face for a few hours. We will have to put in a small NG feeding tube for at least a few days and she will most likely still have to have oxygen, but at least for a bit she had no tubes on her face. She rolled around like crazy, laughed and bounced- just like our old Zoe!!
Oh yeah, we are now on the regular surgery floor, no more PICU, we got transferred out on Saturday evening.
