Hana awoke every hour (at least) starting from midnight until 7am, when we got her up for the day. She was pretty cranky again, I think she needs more sleep. There was a mad scramble to get the morning routine done and a nap in and them ready to get out the door for her appointment with the heart failure/transplant cardiologist. Somehow we managed to walk in the door right on time.
The cardiologist we saw is one Hana has seen many times in the hospital and once in clinic. I really like her, she came from CHOP I don’t know how many years ago, not too many. Basically she said that Hana looks great, seems great, her heart is not in failure. Her vomiting must be attributed to something else and we should follow up with her GI doctor.
She also addressed some concerns we had from talking to Hana’s Kaiser cardiologist last week. She said that Hana will continue go up on her medications, but they do it gradually because they can affect her blood pressure too much. She said that even though her echocardiagram is unchanged, that it doesn’t really mean anything about how she really is doing because some kids have echos that don’t change and they are very sick and some have no change and they seem really well. She said there is so much variability in how the body compensates and deals with the situation that it is very hard to predict or say what the best course of action is or what the outcome will be. She said that they don’t yet understand why there is so much difference.
There is a lesson in this for me – don’t compare to others because I will get no useful information. Hana is Hana and she always will be. I just need to see her as she is and not compare her to others. That’s what the doctors are doing. Sometimes it is hard, when I see babies who are well, healthy in all ways we consider so. But the sooner I put this behind me and make my new normal then the better off I’ll be, and hopefully Hana too.
The funny thing about all this is Hana did not vomit at all today. She looked like she was getting ready to vomit a number of times, but she never did! I felt a tiny bit silly for taking her in when she seemed so much better, but the doctor reassured me that bringing her in with they symptoms she had was the right thing to do. I hope tonight will be a better night’s sleep.