Hi everyone. It’s been a while since I sat down to put together another blog. There’s been a lot going on the past two weeks since I last posted an update. Let’s start with an update on Samuel.
First, Samuel will have surgery on Thursday at 10am PT. He has Pyloric Stenosis, a condition where his stomach can’t empty into his small intestine. Instead things accumulate and then, with nowhere else to go, he vomits it back up. He’s been vomiting quite frequently the past several days, so on Tuesday they did an ultrasound and confirmed the diagnosis.
He has to be intubated for this surgery, so we’re nervous about everything involved. But he has to have it done. Dr. Hui will do the procedure at John Muir Medical Center. I’m taking the day off to be there with Kristen before he goes in, and Kristen and I will wait and see him after he gets out. We hope this will have really good results for him.
In other news, Samuel had his circumcision on March 11th – my birthday. The procedure went well and Dr. Nash and the nurses said he took it pretty well. They did it in his room so they didn’t have to move all the oxygen equipment down the hall. We had to do this before he hit 10 pounds, or else Dr. Nash wouldn’t do it.
Speaking of weights, Samuel is now up to more than 9 pounds, 5ounces. That’s where he was on Sunday and I’m not sure where he is today. (Before I forget, Jacob weighed in at 9 pounds, 9 ounces on Sunday on the hospital scale, but he was fully clothed so he’s likely a few ounces less.)
Samuel also had a reflux test done last week. They inserted a tube up his throat and down to his stomach. The intention was to leave it there for 24 hours and measure the reflux over a period of time, during and after his feedings, and to try and correlate some of his coughing fits and uncomfortable looks to reflux.
We got the test results for this on Monday of this week and they showed he has reflux, but a normal amount. There’s not a big reflux problem like we thought. We’re hoping that this is all just tied to the Pyloric Stenosis and it’s all said and done after Thursday.
There’s good news to report as well. Samuel’s oxygen needs are going down. He’s been moved from 2 liters to 3 liters back to 2 liters and now 1 liter, as of Monday. He was bumped up to 4 liters on Tuesday when they took him off all feedings. They’re also trying to make sure he keeps his lungs and belly clean, and the extra flow will help. But he also was turned down to just 21 percent oxygen on Wednesday, an all-time low for him. Once the surgery is done, the doctors don’t really think he needs any sort of substantive flow. We’ll see.
At the end of the day, the doctors are now talking about ideas on how to get Samuel home. He’s likely to come home on some level of oxygen, which he may need for a year or more. Only time will tell. It’s not completely uncommon.
Now we focus on feedings and getting him stronger with the bottle. If he’s slow taking the bottle, or it causes some complications with his paralyzed vocal cord, they may opt to put in a gastro port, or a g-port as it’s sometimes called. This would be yet ANOTHER surgery. We would choose to do this over keeping his nasal feeding tube in. The gastro port goes into his belly and looks like a second belly button. We would try and feed him with a bottle, but if there were challenges, or he didn’t take it, at least we can get the nutrition in him. Again, this is not completely uncommon, and many parents do this.
Moving on to Jacob, he’s doing well, though he’s turning into a fussy boy in the mid-afternoon and evening hours. We’re fairly certain he has colic, which can only be cured with time. In most cases it goes away at the four-or-five month-mark. We’re at 1.5 months now on an adjusted basis, so we may have some long afternoons and evenings. Interestingly enough, Jacob seems to do less crying when he’s naked. Maybe he’s hot! So we’re stripping him down to his diaper a little bit to get him to quiet down.
That’s it for now. Time for some rest!