Went to Gville today to meet heart surgeon and discuss surgery plan. He feels it is better to wait until Dr Kays fixes the nissen due to risk of infection. That is the short version. =o/ So, tomorrow I will be contacting K's nurse to get the nissen surgery BACK on the schedule now that Camden is completely recovered from the cold he had. I now have to readjust. I was planing on the PDA surgery first. I'm mentally exhausted today, and I don't admit that much. ;o) Camden has been more on the lazy side for a while now, just not wanting to do what he used to want to do. The Dr said this could be caused from the PDA. I havent been wanting to push him, and Im not going to either. If he wants to be lazy, so be it. PDA caused or not, he is getting the break for now. =) The PDA does need to be fixed soon, especially with his history, but he still thinks it would be better to do GI surgeries after the heart surgery especially when there will be a foreign object placed during the PDA.
I did appreciate the Drs concern about Camden's low HR dips he has at times. He hadn't had any since before the ER trip ( and these low HRs are unrelated to the PDA heart issues is having) but he did drop significantly low again the other night again. He gave me a little card monitor and as soon as his HR drops, I can lay it on his chest and record it, then call it in to be recorded. So at least we can try to address those issues while we are waiting on the nissen repair.
He continues to do well tolerating tube feeds so was definitely was a soy intolerance! It has been wonderful to not watch him retch! He is actually tolerating 8 ounces, every 3 hours as of today was is HUGE for Camden. He has never been able to tolerate more than 5. He also gained and is almost 29 pounds so my protein/calorie packed blended diet is working. =)
On the other hand, the oral eating/choking has been AWFUL. Something was seriously lodged in his nissen to the point that nothing was going down. He cried and begged for food and for a few days and I had to say no to everything. Every time I would give in, he would immediately choke and it would all come back up. This is nothing new, but some days are worse than others. Today he got a few animal crackers down, so maybe things have shifted, but I was too scared to try. This is why we are redoing nissen. This has been his life for over a year now.
So we are back to the waiting game again. I have been working on not feeling impatient. I cant help the affects of the underlying stress like my hair falling out, or heart palpitations, =oP but I am trying to remember that it is all in His time.....