Well, Lily is teething again. This time it is hitting her hard. She is no longer eating by mouth, her ear is bleeding off and on, her skin has gotten pretty bad and her g-tube site is a mess with granulation.
Poor baby is in so much pain. I took her to the GI doctor last Wednesday. They silver nitrated her tube site and she screamed in horrible pain crying great big huge tears. You know it hurt really badly- Lily never cries with tears unless it is really bad.
We had changed her tube ourselves for the first time last Monday. We think we did it right. That was quite an experience. Jason did the tube - I distracted her. It went very well. This knowledge is not really something we wanted to have - but it is necessary. We need to know how to do this - we cannot run to the doctor or hospital everytime it needs to be changed. Each time we learn a new "skill" like this I have various emotions. A lot of time anger that I don't know I have creeps up. I don't want to have to know how to stick someting in a hole in my baby's belly. I don't want to have to know how to burn her skin with chemicals. But what we want and what we have to do as parents does not always fall in line.
Also- her right ear has been bleeding periodically. It bleeds for a part of one day- like it is draining. We don't know what is causing it. We had not had a bleeding episode for 2 weeks. I took her to the ENT for a follow-up check-up last week and he said it looked good. The next day it started bleeding again. We have no idea of it is from the reflux, her tubes dislodging a bit or what....
All of this has set us back a bit in her growth and progress in therapy.
Things have been a bit overwhelming recently - especially with school starting soon and so much therapy and doctors appointments and school planning...we are all being pulled in so many directions.
I took her to our pediatrician today to have him look at all of her issues. He did a really great job with the silver nitrate. Hopefully this will help. We don't want her to be suffering anymore.
It is amazing that all of this is probably caused by her teething. When teething she creates more acid which in turn affects her tube and most likely her skin. The ear may or may not be a part of the teething - this is still a bit of a mystery. Hopefully the next time we post we will have move past this and on to something else more fun!
Sisters, In Sickness and In Health
1 week ago