Paul and I have been away for four days and three nights. My parents came from Pennsylvania to visit with Hana and to watch her while we went out of town. My mom is a pediatric nurse, so I knew everything regarding Hana’s medical needs would be taken care of (for example, she would be able to put her NG tube back in!).
I’ve still been experiencing problems getting Hana’s medications. The problems are stupid. I follow the instructions to give them notice to have the prescriptions ready, I check on them, I go to the counter, I talk to someone and still the prescriptions are not filled or filled properly. I finally talked to the pharmacy manager and he gave me the backline phone number. He said to ask for him or, if he is not there, to ask for the pharmacy manager to directly ask for the refills. He said this would make it easier for everyone. I am very glad. I did still receive a prescription that was not mixed at all, it was solution and powder. It is supposed to be mixed by a pharmacist. I am very lucky that my friend and neighbor Alyx is a pharmacist and she came over in her pajamas and mixed the medication so I could give it to Hana that night. We are very lucky!
We’ve been having problem with Hana’s feeding pump – today we got a replacement one. They tried to deliver the wrong pump yesterday, but now that is straightened out. I think the theme here is that things don’t go the way they should and I just need to get used to that. I have this expectation that people will be competent and perhaps they are the majority or the time, but 49% wrong is still a lot.
In very good news, Hana is looking and acting like a normal nine-month old. My parents had a great time with her and said you would never know she had a heart problem. That makes me feel better. I see her so much that I wonder if I can really know. She took to them very well and seemed very happy even when we were gone.
This week we are going to see the feeding specialist. We are also going to start Hana on prilosec since she seems to be experiencing a lot of discomfort, regurgitation and reflux at night during her continuous feed.