It’s Sunday night and here we go again! Samuel will have another surgery on Monday. He’ll have two separate procedures at the same time. First he will have a gastric port installed in his belly, leading to his tummy. He’ll also have a Nissen Fundoplication, where they’ll wrap some of his stomach around his esophagus to help prevent reflux.
We arrived at the conclusion this is needed last week, following his swallow study, which showed he’s aspirating food and liquids into his windpipe and lungs. So we’re not going to be able to feed him as much via a bottle, and the gastric port will let us inject food directly into his tummy.
They did an Upper GI study on Thursday. That’s very similar to the Swallow Study, where they put Barium into his tummy so they could see how everything was formed. The doctors liked what they saw and it allowed the gastric and Nissen surgeries to be scheduled.
Doctors tell us it takes about two or three days to recover and Sammy will have several small nicks on his stomach where they’ll do the Nissen, plus the port that will be installed, likely on his left side.
We hope this is the last medical procedure Sammy will have to have for a while and we’re hopeful this will also lead to his discharge from the hospital, either later this week or maybe next. We can’t wait to get him home, and frankly we’re sick of driving to Stanford for several reasons.
Earlier in the week Sammy also had a test done to see if he’s done with the Rhinovirus and the doctors said he still had it. One of the Neonatologists explained to me that they do a test that’s down at the DNA level, so they look for any remnant of it at all before declaring him “clean”. For now we continue to suit up with a gown, gloves and a mask. Sammy knows our voices, but he really hasn’t seen me and Kristen since he arrived at Stanford.
Also, on Thursday the medical staff put him back on some oxygen. We’re happy to know he really doesn’t need it, but he definitely is breathing more comfortably with just a little bit of oxygen. They put him back on 1 liter per minute at 100%, and are now down to about 0.9 liters at 30%. We want them to send him home on 1/4 liter per minute with 100% oxygen, and we’ll likely keep him on that for a few months. It will not only make him comfortable, but it will be a good thing for me and Kristen.
Once he’s declared not to have the virus and he recovers from this surgery, there’s not really a reason he can’t come home. So we hope to have some good news on this soon.
Meanwhile, Jacob is really starting to become interactive. He’s playing for quite a bit of tie each day, though he’s still doing a lot of sleeping too. Of course he’s a master at crying, and driving his dad nuts. If there’s not enough stress in my life already, Jacob’s good at making sure I have just a touch more.