Little Things

Things have been going well. Hana still vomits once a day. Today it was in the morning and it wasn’t too much. I guess what makes her vomiting different, perhaps, from other kids that may vomit a lot is the intensity of it. There is usually crying, choking, and a lot of dry heaving. It is not like you look over and say, “Oh, she vomited!” It is usually much more dramatic. Not always, but most of the time.

I feel like things are really starting to come together. This is not without a lot of help and not enough sleep. What makes things busy for us, busier than a family with one baby might otherwise be, are the little things. It is pumping breast milk, washing pumping supplies, washing bottles, rinsing feeding bags, cutting bandages into ovals (and hearts), measuring and mixing formula, washing syringes, ordering meds, picking up meds, drawing up meds, ordering adhesive remover and NG tubes and feeding bags and syringes and adhesives and formula. It’s sending messages to doctors, logging when you fed her and gave meds and when she vomited and tried to eat solids. It’s starting her tube feed at the right time, but not when she is rolling around or when its time to nap. Its talking to the case manager about supplies and samples and breast pumps and prescriptions and what messages have come from Stanford and what echocardiagrams I need to take to them next time I am there and how much Hana weighs this week and how many times she vomited and when.  It is a lot moving parts. Not too many of them can slide, either. They all have to get done and by a certain time and not too early either!

This is why all the help has been fabulous, because keeping up with all the new stuff leaves little time for normal things like grocery shopping and making dinner and cleaning and paying bills and doing finances and taxes and laundry. But each day it gets better, mostly. Today was a good, low-key day. We took Poppy on two good walks and spent the rest of the day getting naps (Hana, not me) and attempting solid foods and bottles and giving tube feeds while she was upright and awake but still getting time to practice crawling on the floor. Tomorrow we go back to the GI doctor. I have a long list (in my head) of things to go over, like choices of medications, and weight gain and types and sizes of tubes and formula, volumes and rates of feeds and how much to fortify and when I should stop pumping breastmilk. There are more questions, I hope I can gather them all together before I forget!

Here are some photos from the last couple of days.










Genetic Testing

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.