My friend Erin has been here the past week. It has really been amazing to have her here. In some ways it feels busier when someone is here staying and helping and that’s because I am trying to do more than I normally would do. But I am very grateful for the support so that I can catch up on other things like paying bills. But more than anything I am grateful for the love.
I always thought Erin would be an elementary school teacher because she is so good with kids. Erin is actually a special ed teacher at a very special school for kids with multiple disabilities. Many of the kids have a private nurse that accompanies them to school, like my mom. It takes a lot of patience and compassion. I learned from watching Erin with Hana, especially when it comes to the challenges of feeding.
Feeding has not been going great. Hana is still liking the Mr. Juice Bear, or “Milk Bear”, as we call it. She is taking about 120 mL a day. Solid foods is not going very well at all, although I am always encouraged when we see the feeding specialist. I am getting negative about the whole thing. I forget the small successes. I think that because we saw improvement one day that will be the baseline to improve upon the next. It doesn’t work that way. Some days are worse. It is two steps forward, one step back and sometimes, two steps back for a while. I am getting desperate.
Adding to my desperation is the vomiting. We went five days without a vomit, that’s the new record. Then, last Sunday she vomited in the evening and her NG tube came shooting out. On Friday night she also pulled out her NG tube in the middle of the night. That’s the worst because you don’t want to put it back in in the middle of the night and her continuous feed leaks all over the bed. The next morning we tried to get her to eat and drink and maybe take some juice or medicines from syringes but it wasn’t happening so we put the tube back in around 10:30 in the morning. I felt defeated!
I’ve been doing some research and I am looking at a new approach, more on that in another post. Before I can begin on that Hana needs to get better. Last night was a terrible fussy night. The feeding pump alarm kept going off every fifteen minutes during her continuous feed. Hana kept waking and rolling out of bed. I ended up just sleeping in her room, next to her bed and finally figuring out why the feeding bag tube kept kinking and setting off the alarm. It was a very bad night for sleep. In the morning, Hana felt warm to me and I discovered she had a fever.
I knew the day would come when she would get sick, have a fever and we would have to see how her heart would handle it. I was on the phone with the Kaiser pediatrician on call and the Stanford pediatric cardiologist on call. Hana was clingy and fussy and tired. I was worried. The Kaiser doctors were worried but deferred to Stanford and made an appointment with our regular pediatrician for Monday. Stanford mentioned having us come in if her fever got worse. It did get worse. I called back. They said to give Tylenol. I gave it and she immediately vomited. So I called again and they had me re-dose it. Then we waited. I imagined having to go back down there and spend the night. I really didn’t want that. Paul held Hana while I made silly noises and faces and she started to laugh and giggle. She napped again. She watched baby signing times. It was 5 pm when I realized that I never changed out of my pajamas. The cardiologist called to check in on Hana and by then her fever had gone down and she was acting fairly normal! Everyone was relieved.
I am writing this late, later than I wanted because Hana woke up and vomited in the middle of me writing this. I checked her temperature again and it is back to a normal temperature, but I’m glad we have an appointment with the pediatrician tomorrow!