We have a couple new updates so here it goes:
Riley is apparently a boy in everyones eyes (a true tomboy already). When we were in the ICU some of the doctors who weren't familiar with her would call her "him" just based on her first name. Yesterday was an especially big day for this as it happened three different times. The best time was when we went to radiology (dressed in a bright yellow sun outfit) and the doctor came in and said "well good afternoon Mr. Riley" in a gruff voice. The nurses quickly corrected him and he came over, stroked her head and said "well hello princess." I hope she doesn't get used to this perk of being a girl ;o)
Riley's NJ tube migrated back into her stomach yesterday which explains why she got sick for the first time in a while. It looks like she is still refluxing and throwing up when she gets food in her stomach. The doctor gave us a couple options for her going forward regarding feeding.
1. We can have her go through another surgery called a nissen fundoplication to stop the refluxing and send Riley home soon with a G tube.
2. We can hold out a couple weeks and try to feed her when they let us do another swallow study to see if we can get some food in her the normal feeding way (via bottle) and have her keep it down. This would give her a chance to grow and mature and possibly avoid surgery. With his option, there is still the chance that she will need the nissen but at least she will be a bit bigger (a few weeks older) when they go to do it.
We have opted for option 2 to see if she will start to feed on her own. We know this will take more time, but if there is a chance to avoid another surgery, we will take it. If she does need the surgery anyways, we will end up back in the ICU for a few days afterwards. At least we will be able to see all of our old friends!
More good news that our neighbor in the ICU (Max) was discharged this week. Max was born two days before Riley (for a completely different condition) but the two were on the same road to recovery for a while. Friends we have made like his parents and grandparents are the type of people who help us to make it through this in good spirits.
We hope you are all having a great week!
Sandy and Riley
Sent from my iPad
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