Today was Eli's appt with Dr Riva, our pulmonologist. She was great and super informative. She is ordering a swallow study, sweat chloride testing, flexible bronchoscopy, rigid bronchoscopy, and overnight heartrate and oxygen saturation observation. Some of these will require full anesthesia and will be done in the OR. not looking forward to all of this. They will call this afternoon with all of the dates and times. She's testing for cystic fibrosis, and she's also thinking he is still silent aspirating. If it shows that he's still aspirating any then he's on 100% tube feeds and nothing at all by mouth. As everyone who knows us knows this would be a horrible scenario. I enjoy the fact that we've been able to balance day nursing with the continuous night feeds, and daytime bolus feeds. I love that bond with him and that time, and it's sooo dang good for him to be able to nurse directly at the breast. BUT obviously if he's aspirating and that why he keeps getting pneumonia then we'll have to make that decision for the safety of Eli.
I'm so worried to have another full anesthesia procedure. We have had a few months of a break, and we knew that we had 2 surgeries ahead but didn't realize that we would have to have it for a procedure. Nervous.
so many changes happening with Eli so quickly right now.
In other news today is a big day. Mr Benjamin is 5 years old!!!! Getting to be such a big man! We had his party this last weekend but tonight the kids and I will have a benjamin favorite dinner and I'll make a small cake! He's super excited that it's his birthday!
Not much else going on today. Eli is super fussy. I'm hoping to get some housework done, and maybe some knitting or crochet work. I have a few projects for people I need to get finished!