We spoke with the doctor for quite a while this morning and had to make some decisions on where to go from here. The fact of the matter is that Ryan’s bowels are not moving at all from his stomach all the way to his rectum, and there is no way to know if and when they will wake up. His bowel sounds are absent so we know nothing is moving. Unfortunately because he is not getting any substantial nutrition since we can’t feed him through his stomach, he will be getting a PICC line tomorrow under sedation and we will start TPN. That is nutrition through a long term IV site in his upper arm. He has also been having trouble with hives and seems to have hyper sensitive skin now so they are going to check lots of blood work in the morning. The other serious part that is critical is that only two of his seizure meds can be given IV which means he isn’t getting the coverage he needs. It’s a tough situation to be in given his neurological issues too.
I’ll be honest that this is a lot to take in right now and we are overwhelmed with the idea of going home with all this. I’ve done PICC lines for years at work but it’s completely different when it’s my own child. I can’t even think that far out right now and instead am just taking things one hour at a time. This is life changing for all of us if it’s something we will have to deal with long term. And no one knows why it happened. Either his bowels shut down from being under general anesthesia or he caught a virus that caused it. It is well known though that intractable epilepsy and bowel trouble are related unfortunately and even a small cold could cause all this trouble.
I am out of vacation and sick time so I’m not sure what I’m going to do about work. I’d love to just take another week or two off but our budget doesn’t allow it right now. We’ve got some things to figure out with that and how to get everything taken care of here.
Thank you for your continued support through all this. It means so much to not walk this journey alone.