Yesterday was kind of crazy. Hana vomited three, technically four times. She napped very poorly and I am beginning to think that there may be a correlation between poor sleep and vomiting. It was not a question that I asked when we went to see the GI doctor in the afternoon.
When we go to see the GI doctor she really sees three people – the GI nurse/case manager, the dietician, and of course, the doctor. I keep forgetting that we have a GI nurse/case manager in addition to our regular Kaiser chronic conditions case manager which is in addition to our Kaiser Outside Providers case manager whom I never talk to because I’ve never had a problem with Kaiser and Stanford. But anyway, seeing the GI nurse/case manager reminded me that I have another source to go to when I run into problems finding syringes, NG tubes, etc. She understands exactly what I need. Our chronic conditions case manager did get syringes for us, but they were the leur lock tip syringes meant to work with needles and even if you take the needles off they don’t fit into the NG tube port.
The overall consensus was that Hana looked great. Her liver is still enlarged (I think that is what they are calling it) as it goes across her entire abdomen. But the cardiologists all feel her liver each time as well. Her weight gain has been great – about 10 grams a day. Her weigh yesterday was 7.87 kg. They don’t want to change anything. We talked about NG tubes versus G tubes. Problems with NG tubes long term (besides them irritating her and creating an oral aversion and not encouraging her to want to eat by mouth they are easy to pull out when she gets older). We also talked about vomiting, which they aren’t overly concerned about. No one seems to be concerned about vomiting if the cardiologists aren’t worried its her heart and she is still gaining weight like she should.
I forgot to ask some questions. There are more details but I’m so tired. I’m trying to get more exercise, even go to the gym and do some other “pamper myself” sorts of things. I had my first ever facial and pedicure in the last couple of weeks. I even played some guitar, playing “Blackbird” and trying to remember the chords to “I’ll
Follow The Sun”. Hana liked it. She is now nine-months old and finally likes hearing me play more than “Twinkle Twinkle, Little Star” on guitar.