Crazy Days

The last couple of days have been a little crazy. On Monday they had decided we should increase her "feeds" as they call it, from 20 mL per hour to 25 mL per hour.  We did and everything seemed fine.  But, then Tuesday night Hailey threw up.  It scared me because she turned blue and wouldn't breathe until I got her nose and mouth suctioned out with a bulb syringe.  I thought maybe it would just be a one-time thing, but about an hour later she threw up again.  This time it was a lot worse. I don't know how long it really was that she was blue, probably less than 1 minute, but long enough that it scared me. She was still fine once I got everything suctioned out but I felt that I had had enough adventure for one day.  I called the pediatrician's office and talked to the on-call nurse because it was after hours.  Our pediatrician happened to be out of town so they recommended that I take Hailey to the emergency room.  I was too scared to have her strapped into a car seat in the back of the car where I couldn't see her in case threw up again so I rode in the back with her while Ben drove.  We turned off her feeding tube in case that was making things worse. We were afraid it was a stomach bug because some of us have had one.

We checked in to the emergency room and the nurses were a little shocked when they saw Hailey's oxygen levels because her levels are just naturally around 85%, which for a normal person would be pretty low, but is fine for having the heart condition she does.  They asked about her health history and pretty much everyone just gave me a blank stare as far as what  to do.  This is actually a really good hospital, but it isn't a children's hospital and they just don't see cases like this, especially since Hailey has a reallly pretty rare genetic disorder on top of her heart condition.  When I talked to the doctor, he said he suspected it might be the feeds. It turns out one of his daughters had had cancer at age 2 and had a feeding tube for a year, so he knew a lot about the feeds even though he wasn't a pediatrician. He was able to get a hold of a pediatrician that works with our pediatrician. They were still concerned about her oxygen levels, so while the doctor was on the phone with our pediatrician they put Hailey on some oxygen.  Hailey seemed really uncomfortable with the oxygen and she kept stiffening up and trying to turn her head away from the oxygen.  About a minute after putting it on, the nurse came in and turned it way down. She said that the doctor had just told her that too much oxygen can make a patient with Hailey's condition "clamp down". I wasn't clear on what was clamping down exactly but when she turned the oxygen down Hailey settled down.  Anyway, they came to the conclusion that we should just turn Hailey's feeds back down to 20 mL per hour and have me take her to the pediatrician in the morning. By the time we got done it was past 11pm and the girls were with us, Ben took them to the park and then to the waiting room, but he needed to drive me home since we only have one car so he had to wait.  We finally got home and had just gotten Abby and Katelyn settled in when Hailey pulled her feeding tube out.

We were exhausted and disheartened to have to put the tube back in, but Hailey hadn't been on the feeding pump for about 4 hours by the time we got her home, so we knew she was hungry.  Ben put the tube back in. It was about as awful as the first time. I was crying about as much as Hailey was by that point. It had been such a long day by then. 

I took Hailey to the pediatrician yesterday and they suggested trying to bring her feeds up gradually because she does need the calories at the higher rate, but they are going to try having us take her up 1 mL per hour a day, so today is 21 mL and if she handles that well, we will do 22 mL per hour tomorrow, etc. until we reach 25 mL per hour. She did well yesterday, so I am hoping that was it.  She didn't sleep very well last night but I am not sure why.  Then, this morning I woke up to her screaming. It was about 5:30am so I thought maybe Ben had decided to change her diaper before work  (she hates diaper changes and always protests loudly!). I went in to find her feeding tube hangin out AGAIN. It had taken both of us to get it in on Tuesday, (it is definitely a two-person job with our level of experience) so I didn't know what to do.  I texted Ben. He happened to be about a minute out from another bus stop, so he got off the bus. I woke the other kids and loaded everyone into the car because I didn't dare leave them alone and drove to the bus stop to pick him up. We came home and put the tube in and he drove to work.  I was sad that he had to drive because that means he misses the sleep he usually gets on the bus, which he desperately needed because he stayed up until 11 with Hailey last night so that I could sleep. 

This has been a trying week so far. I am really hoping that we will get the hang of things and that Hailey's feedings can go better. If they can't we will probably have to go back to Primary Children's to get a G-tube put in because our pediatrician said no one around here would be willing to do that surgery on such a small baby.  So, we keep trucking ahead one day at a time hoping for the best. Hailey is amazing through all this. She really is a sweetheart. We have been amazed at our other girls too. They have been awesome about helping and didn't complain about the late ER night or the early morning this morning even though they have been tired.