Day 2

This morning Clara was moved to a wheel chair, so she got to leave her room for a ride around the unit. She smiled and laughed for the first time too. 

 Not so great afternoon, and I feel that we are right back where we were yesterday .

She still has an epidural, and is getting Valium for spasms. Pain plan hasn’t changed. 

Yesterday was rough. Pain team changed her rate on epidural and length of time between Valium. She finally was able to rest in afternoon. We had three visitors yesterday afternoon, and family in evening and she stayed awake while everyone was here. She sleep great last night, woke up when the nurses walked in but no crying. So therefore her pain needs have fully been met with no narcotic bolus. 

PT brought up a wheel chair for us to try, because we will have to rent one for home. She was sore during the first transfer with Jason, but sat for a while and watched Elmo and Toy Genie. However when we moved her back into bed, I think it was too painful and she threw up.  I tried the transfer with the nurse, so fail for me. ☹️ Baby steps I guess. 

With that, I did learn how to give her a sponge bath with wedge. She will only be able to have those for about 4-6 weeks. She cried all the way through it. 

She still has a catheter. So no diaper changes yet. I hope to be shown that before we leave. 

Pain team came around and said they would take the epidural out tomorrow, we will be given a plan for oral pain medicines. I guess we will do those tomorrow and use those at home. 

She had a little oatmeal this morning, but just seems to tired to have the stamina to eat. I guess it didn’t sit well because it came up. 

Me- I am relieved the surgery part is over. It feels like a weight has been lifted off me. Meaning the anxiety and the guilt of putting her through it. I finally now feel like "I can do this". We also have amazing support at home with Clara’s nurses. Like I have always said it takes a village. 

 I am worried about the pain after the epidural, and what will that look like. 

I’ve appreciated the visitors, texts, and messages. Takes my mind off being in a room all day. I try to leave and take a walk but I just don’t know where I want to go. I don’t want to sit by myself, so I stay. 

I am thinking we will go home Friday, but that depends on Clara and how comfortable I feel. Transporting her home is still freaking me out, especially after that horrible transfer we made.  

PT will look at her car seat before we leave and give us some ideas. Still more to get through until then. But we have almost made it through this part, and next the home part.  Sweet thoughts and prayers still. 

Clara’s teacher came to see her, which was so sweet. Not a great pic of Clara, she wasn’t feeling very well, but stayed awake the entire time she was here. 

Finally some smiles. With her new furry friends.