So Ryleigh continues to struggle with recovery. A couple of days ago she started feeling yucky again and stopped eating. Her stoma and ostomy did not produce enough output resulting in worry from the nurses and some doctors. She got very nauseous on Thursday and there was thought she had another obstruction. She had an x-ray thankfully it showed not blockages. There was some debate between fellows and her attending surgeon yesterday about whether she can go home or not. It was quite the confusing and somewhat stressful. I felt I had to make the decision whether I thought she should be discharged or not…I told them my anxiety about what has happened in the past does not allow me to make a rational decision about this. The attending surgeon was not comfortable with Ryleigh going home until she demonstrated she could eat and drink enough on her own so that she would not face dehydration issues at home.
The doctors came in today and they think the nausea is caused by her adrenal glands not working properly because she has been on steroids for a long time. The adrenal glands shut down when there is other steroids in the body. The human body is quite efficient – the levels of steroids have increased so the adrenal gland compensates and does not produce. As a result the adrenal glands take time off and decide not to do their job. If steroids are stopped right away without proper tapering – then it can cause complications. They are thinking this is why Ryleigh is feeling so yucky.
Last night they gave her some extra steroid and it seemed to stop her nausea and she ate and drank a little bit and seemed to feel a bit better. Hopefully that is the reason for her feeling yucky. They have increased her steroid a little bit and will have to taper her off a bit more slowly…darn steroids, the side effects are very scary.
I am hoping for a more energetic weekend – perhaps Ryleigh can get a pass out this weekend and we can take her out for breakfast, drive around and look at all the mansions that are in the area!
Monday is the discharge plan — providing all goes well for the next three days.
It is hard not to get discouraged and feel like this will never end. I know that it will — being positive takes energy but I cannot imagine what else one can do. At times I get down about thinngs and think the worse but am grateful for friends and family (especially Chloe) who encourage me and remind me that things do get better.