Tuesday 9/24/2013

Today was a better day. Ava was lethargic in early afternoon but by evening her temperature was normal without tylenol or ibuprofen and she was acting more like herself. This, I predicted, because it is exactly what happened last time. More labs were drawn this morning. I think it took them 5 tries to get blood for a CBC and CRP, both of which were fine. I reallllly think that she is allergic to the contrast dye. It is my understanding that the NP was going to come back in on her day off tomorrow and explore Ava's reaction to previous procedures with contrast dye.  That was my plan for today, too. I looked at it a little bit with the nurse, but didn't look at every single test. An allergic reaction would be one in which her reaction would be worse with each exposure. If this is an allergic reaction another exposure could induce anaphylactic shock.

This morning, in rounds, the big concern was with Ava's physical development and lack of muscle tone, especially in her neck and trunk. The concern was that she was doing pretty well before heart surgery and now she seems weaker and more stagnant. She isn't moving as much or grabbing at toys. So, I was sort of blindsided when I came in at noon. The NP told me that she scheduled an MRI tomorrow to make sure her brain and spinal column are normal even after heart surgery. This will be a 2 hour procedure tomorrow morning under heavy sedation controlled by the NP.   This led me to dig into her meds a bit. I have a sneaking suspicion that clonidine might be partly to blame for her change in behavior with respect to her movement. It is a blood pressure med but it is prescribed for a variety of reasons. For Ava it was prescribed to help wean her from the morphine, and it was added to the mix right after heart surgery. One of the side effects of clonidine is muscle relaxation. I believe that this med keeps Ava too relaxed. It may also be a contributing factor to smooth muscle relaxation which could contribute to her vomiting. I stopped by the pharmacy on my way out of the hospital this evening and spoke with a pharmacist about the drug. She was taken a little off guard by my specific questions so she is going to leave some information at Ava's bedspace tomorrow about clonidine. I told her that I didn't want the basic drug book definition, so she'll probably have to do some digging.    It will be nice to have an MRI before discharge to have on file in case any questions should arise later. Pray that it is normal. 

Also in rounds they brieeefly discussed the possibility of us taking her home with the g-tube AND an NJ tube in her nose. They asked the nurse if she felt comfortable with the parents doing this. She said she would as long as we had access to monitoring equipment and oxygen. Yay- Good plug for us, Jaelynn. That's exactly what I wanted. It wasn't discussed too in-depth because the conversation was shifted to her physical development. Cardiology also signed off on Ava today. They will no longer be rounding on her. We will just see them for checkups on an outpatient basis, probably in Pocatello. 

I took Sam with me to the hospital to visit Ava this evening. Ava was content and looking around. That was good for Sam to see. I explained all of her scars and tubes. The playroom didn't have enough volunteers for me to check Sam in to the playroom, so he had to spend the next hour with me, watching Ava's ipad while I held Ava. Ivy screamed for Great-Grandma the whole time Sam and I were gone. William was happy to have the ipad all to himself at home with G.G.