Wow. This hospital stay has been filled with so many ups and downs. Yesterday was feeling like a rather down day. Angela is not tolerating any feeds given by mouth or by g-tube. The issues with the feeding by mouth is to be expected. The surgery altered the way her swallow feels and if you add on inflammation in her esophagus as well as her floppy tone it really makes for a difficult obstacle for her to deal with. I have all faith and hope that she will once again be eating by mouth. It will come back better than ever but it's going to take time. So for now we need to come up with a plan.
Since the g-tube feeds are not working do to her poor motility and also the fact that she is still healing from major surgery, we are going back to the J-tube feeding. This basically is just a longer tube that will bypass her belly. This worked for her before and I know it will again.
There are a few other issues that we are learning about Angela that we need to address, which are things that just got missed until now -- her first stay in the hospital. Right now Angela is being seen by the surgery service but tomorrow she will be transferred to the Diagnostic Referral Team, which are basically the team who takes care of the kids who are complex and need management of numerous specialists. This is very hard for us as this is the team that took care of our sweet Gavin. But Angela deserves the best care and we will do what she needs.
Angela is having some blood pressure issues as well as some possible obstruction at night which is giving her destats in her O2 levels. Some of this is just from surgery and will hopefully resolve -- but we still need just to make sure. She is also having issues with choking on her saliva, but today she actually seems to be doing better handling her secretions.
Thanks so much for all the support you give us. We are so lucky to have the massive support standing behind us. It truly enables us to live this life. In a few days we will be back to normal life - lovin' every moment of it!