Soul, Syringes and Successes

Let’s celebrate successes. On Wednesday, we had another feeding specialist appointment. Hana ate about two tablespoons of mango/brown rice puree. I was in shock. She just kept eating. Well, it wasn’t that easy. There were videos and music boxes and games and bubbles and dolls and singing involved. So, we know she can eat that much, now I just have to figure out why she won’t eat that much for me. I’ve tried since and its back to fits and crying. Her new game is taking the food in her mouth and holding it there, slowly spitting it out, a little at a time. But she is allowing it in her mouth, so that is a success!

I’ve been trying to track down the syringes I ordered on eBay. The tracking number said that they were sent back to Florida, then, out of nowhere, they arrived today. This is good because I was starting to get a little nervous about being able to draw up meds now that many of our syringes have outlived their usefulness (except as a water flush). We now have 25 new 3mL syringes. You know your life is different when you get excited about new syringes.

Wednesday night we also bought a car! We got a Kia Soul. We love it. I know many people are excited that we are not driving around in the 17-year old Honda Civic. The Soul is roomy for a small car. It has four doors. It drives smooth. It fits in our garage. It’s much, much safer. It is a real pleasure and we feel we got a really great deal. Unfortunately, from the time I left home with Hana to the time we arrived back home with the new car was five hours. It involved strolling to the MUNI stop, riding the trolley to BART, taking BART during rush hour to Oakland and then getting picked up by Paul for a short drive to the Kia dealership. I nearly wiped out on MUNI when it started to go. I also was carrying a baby, a feeding pump, a diaper bag and a folded stroller. A very nice person gave me their seat on the crowded BART car. Thank you, nice and wonderful stranger. I think I looked comical. I must have. It felt a little comedic.

Hana’s NG tube became blocked at the Kia dealership. Most of the iron I tried to give her just squirted out at me. It was time to change the NG tube anyway, since it had been in for nearly four weeks, so we just took it out. I tried giving her syringe-fulls of her milk instead and she probably took about 10mL. I was very impressed. I really think that she would take more by mouth if we could just do away with the tube, but we need her to take more by mouth before we can do away with the tube. Its such a Catch-22.

In other news, Hana had an echocardiagram and a cardiology appointment today at Kaiser. The echo didn’t show any change in her heart. The cardiologist went back into the echo room for more images because she wanted to look more closely at the apex of Hana’s heart, checking for clots. That’s mostly what these echos are for – checking for blood clots. Hana only gained an ounce in weight over the last week, which is not wonderful but the cardiologist doesn’t want everyone to get too stressed about it if she doesn’t gain a ton of weight one week. The Stanford team wants us to decrease the total volume of milk she gets by 40mL a day, which isn’t a huge change, but we’ll see if it affects her weight gain. The purpose of this decrease is to entice Hana to take more by mouth. The dietcian is worried she won’t get enough nutrition. I want to try it, especially after the encouraging feeding session.

Of course, feeding today was another battle. In addition, tube feeding was a battle too! Hana only got half of her overnight feed because the pump said she was done but half the milk was left in the bag when I checked it (too late to correct it). I’ve heard that these pumps do this sometimes. This is about the third or fourth time this has happened. Today, when Hana was taking a nap, the feeding bag came unhooked from her NG tube and the feed that was running created a nice big, sopping milk puddle on her bed. Oh well. I won’t even go into detail about the carvedilol problem. I’ll just say they couldn’t make this prescription because they didn’t have any techs working, so I guess the pharmacist made it, or not. They were supposed to call me when it was ready, but it never was. I think I have enough to get me through to Monday, when I can pick it up again.


2 thoughts on “Soul, Syringes and Successes

  1. Yay!! Can you find a fun video on your iPhone to distract her while she eats? Sesame Street & Curious George are our go to’s!! Good luck!


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