As we mentioned, Ruben was getting some tests yesterday to assess how his heart, lungs, and diaphragm are doing. They found that his right diaphragm is sluggish, probably from a nerve getting stretched during surgery. With time this should heal, but it’s hard to say how long. Also, his heart is still healing up; it turns out he has some leaky valves in his heart still (which could get better on their own but means he might be taking some heart medications for a while) and has some blockage resulting from the surgery which may mean another minor procedure in the future. As a result of these things his lungs have been a little congested and his heart has been working hard. This is why it’s been challenging to take him off the pressurized oxygen they have him on (uncomfortable for Ruben).
We (Ruben, myself and the medical troop at his command) had a rough evening up here yesterday (Maddy went home to get some needed rest and I spent the night). After a long afternoon of tests he ended up having a lot of trouble keeping his oxygen levels up, he was breathing really hard and was running a fever. It also seems like the incision in his chest is slightly infected. All of this led the team to take him off of the breast milk, hit him with a huge shot of antibiotics, and almost put him back on the respirator (not to be confused with the machine he is on now which adds positive pressure to his lungs but does not breath for him) which would have been a huge set back. But after some tinkering with the machine and some pain meds he settled down and had a very peaceful night. He is going to go back on a small amount of breast milk this morning and seems to be resting easy as of now.
I think our time-line is stretching out up here. We had hoped to be home before December, but that does not seem likely at this point. It’s hard to know, so we’ll continue to take one day at a time.
For now, we just want Ruben to be able to progress to the next phase of healing. The goals for today are lots and lots of rest and good breathing. So far, he’s doing great.
Thanks everyone for your support … we’re doing our best to stay positive and patient. Ruben will heal up, it’s just taking time.
(btw – the peeing project has been successful. They are happy with his urine output. All our collective peeing paid off!)
they let Maddy hold Ruben yesterday for the first time since surgery