So, I’m beginning to settle into a reality that Hana will vomit once a day. Since I’ve done so, it feels easier to manage. I will carry towels and a change of clothes (for both me and Hana) everywhere. I started keeping towels and basins handy for the unforeseen vomit. Yesterday she vomited all over me (and herself) while we were out and about and today she vomited on the carpet in her room. I just hope she is too young to be self conscious of it but I’m beginning to think not. Oh, my sweet baby.
Today my big project was chasing down one of Hana’s meds – her Lasix. I reordered it on Tuesday but it was still not ready and I realized I accidentally requested it be mailed to our house. Fortunately, the pharmacy tech only gave me a little bit of attitude about the whole thing. I hate asking for favors, especially when I’m to blame but Hana was completely out of Lasix so it must be done. I’m still learning how to manage all of her meds and I’m still learning the Kaiser system so I shouldn’t be too hard on myself. Right?
The other problem we are running into is our supply of syringes. I’m kind of amazed how difficult this is for people to grasp. I need syringes that can be used to administer meds into Hana’s NG tube. That shouldn’t be anything too special. But I guess it is. Or, it is hard for people to imagine that I’m only drawing 0.7 to 2.4 mL of liquid at a time. A 10 mL syringe is neither necessary or helpful since it doesn’t allow me to measure precise enough. There are more types of syringes than I ever imagined and you pretty much need a prescription in order to purchase them, that’s including the ones that don’t even work with needles! Our current supply we stockpiled after use during Hana’s hospital stay at Stanford. But now the plungers are wearing out and the numbers are wearing off.
The big news today was when the nurse practitioner from Stanford left me a voice message to call her about some new test results. I got very nervous and very confused since I had no idea what results they could have possibly received. It was the genetic testing results that were sent out two months ago just before Hana was discharged from Stanford. They tested 60 genes that they know of to look for the gene mutation that causes dilated cardiomyopathy. They found nothing. This doesn’t rule out genes but it does rule out a reason to do genetic testing on me or Paul. It’s possible that there is a gene they don’t know about. We still need to get our hearts checked every five years. For some reason, the news relieved me. Maybe it’s because I can have more hope that her heart may recover which isn’t really a possibility if the root cause is genetic.
Hana's Heart 
Now there IS something I DO know something about! Genetic testing is what they are doing to me right now and have been since January! They are looking for mutations in me, never found before, so the possibility of an unknown mutation for Hanas heart I would guess is possible too, but ii don’t really know.
IT TAKES FOREVER!!! DNA research is fascinating but it is complicated and tedious work. And it is fairly new research technology. In my case, I’ve been tested for all the known mutations, but there are not that many known yet. They are finding them all the time. The key you mentioned in your post is “the mutations they know about”. So it is possible that there is one for her condition, just not discovered yet. (I don’t know the extent of the possibilities for Hana’s heart problem though) but for my blood cancers there are hundreds if not more possibilities of genetic mutations, translocations and a bunch of other gene screw ups.
Anyway – I am glad to hear that her doctors looked at possible genetic mutations. Now that they are able to do DNA and stem cell research they are finding and learning tons of stuff. Even if it only to rule out a gene mutation as a cause or contributing factor. And it is not surprising to me that it took months for the results. Even if it was to see if she had one of the known mutations.
So, there is another thing I can sort of relate to between Hana and me! We are both Lab Rats for genetic research and/or testing!! They call me LRone (lab rat one) so Hana can be Baby LRone!!!
Boy, I cant wait for the day I can give my baby cousin Hana a great big ol hug!!!
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