Thanksgiving was great! We were able to have the whole family together (minus one of course) and we got to go see a happy Karsie during the day.
Today was back to the roller coaster that is our life now. Karsie has been gagging quite a bit lately and really starting to retch. If this had been before she had the fundoplication she would have been throwing up quite a lot. It really started to pick up today as she was doing it many times during the hour. So we got a call from the hospital today while we were out shopping (if you avoided shopping today you lucked out). They said that they have backed her down to 15 mL an hour (she was at 25) and are going to go up slower to see if they get to a point where she starts it again. The thought is that she is just hitting a wall and is unable to handle the volume. If that is the case they will increase her calories to make up for the lost volume so she can grow and get hydrated. She's still growing and pooping so that has been a plus, but we've taken a step back. We're pretty beat up about this because this seems to be the story every time. We get real close and then we have to go back and start all over. The good news is that they still seem to be talking about how they can get her home even with all of this stuff happening. But for now our stay has been extended a little bit longer.
When we eventually went in today Karsie was alert and happy the whole time. Since being backed off she hasn't gagged nearly as much, so we're hopeful this is something fixable soon. As of yesterday she was about 8 lbs. 7 oz so she is still growing. Slowly but steadily. We want her home for Christmas, so if any of you want to get us something great for Christmas call up Children's and tell them what to do to fix Karsie to get her home. Blessings...
I'm so glad you posted that video so I could watch Karsie's sweet, happy face!
ReplyDeleteSorry to hear that the roller coaster ride continues. :( We're really sad to hear that she's had a setback where her feeds are concerned, and of course we're praying that she's able to keep handling more and more volume!
I loved that video. She is the sweetest lil thing. Praying that she gets to come home...SOON!
ReplyDeleteI'm sorry there was another down bit on the roller coaster.
ReplyDeleteIt can only mean an up bit is on the way, right?
I suppose the ups & downs will always be there, it's just the swings will get less dramatic and even out somewhat.
I surely hope so! I definitely think so.
She is such a dear, such a happy, resiliant little soul!
I am confident she will get there with tolerating her feeds eventually, slowly, in the not too distant future.
So Lord, please hurry up and grant us patience!
Much love, Jen