Samuel has only known hospitals his entire life. He’s been there since December 9, 2015 when he was born. But Tuesday, May 3, 2016 – 146 days later – Sammy finally came home!
I already got Kristen a great Mother’s Day gift – one she’ll love – but something tells me the real gift will be having her boys under one roof.
Samuel’s discharge actually started last Thursday when the paperwork got underway. Doctors continued to evaluate him on Friday and over the weekend, and then on Monday we got a bunch of phone calls from medical supply companies telling us they needed to stop by and deliver things before he could be discharged.
On Thursday I learned how to use the gastric port for feedings. It’s pretty straight forward, though it’s scary to learn how the “button” is anchored in his belly and the fact it can just fall out. If it falls out, we have to take him to the emergency room so they can put it back in quickly, before the port hole closes. They also will have to double-check via x-ray that the port is in the correct spot going to his tummy, and not going to another area.
In a few months, we’ll be able to take the button out on our own to replace it if necessary. They said the button hole is similar to a hole made in your ear when getting an earring. If you take the earring out too soon, the hole will close up. But after a couple months, the hole will just stay open.
Anyway the feedings will be intimidating at first, but we’ll get there. I found a good example posted on YouTube of how it works. Unlike the video, though, we’ll be using a machine to do it instead of doing it manually. You’ll get the point after the first few minutes.
On Tuesday afternoon we received Samuel’s equipment. It consisted of three things: an oxygen generator, a pulse ox monitor and a feeding machine.
The oxygen generator is a large machine that looks like an air conditioning unit. It has a 25-foot oxygen tube on it that connects to his nasal cannula. We also got 6 oxygen tanks that we can take with us, and got training on how to use all. They also delivered a pulse-ox monitor used to measure the amount of oxygen in his blood and his heart rate. It goes around his foot.
Then a bit later we got Sammy’s food pump delivered. He gets feedings at 9am, 12pm, 3pm and 6pm, and then beginning at 9pm he gets a continuous feed until 6am. In total he’s getting about 27.5oz. per day, which is appropriate for his weight. At this point, because of his surgeries and his vocal cord status, he’s not getting any feedings by mouth. We’re able to dip his pacifier into the formula so he can taste it, but that’s about it.
After we got all the equipment, we jumped in the car and raced over to Stanford to get him. In fact we left so excited we forgot to bring his stroller and an outfit for him to wear. We had to stop at Nordstrom’s in the Stanford Mall to get something he could wear home. We did manage to bring his portable oxygen and pulse ox machine.
He had his final feeding a bit early – at 5:30 and then away we went! He did awesome for his first car trip and barely made a peep. Sammy’s Aunt Jamie stayed with Jacob after Stevie left, and she was there to document the event when we walked in the door.
It’s going to be so nice not having to drive to a hospital each day. We can spend that time playing with him, making him stronger and getting him to know his brother. We’ll have plenty of doctor’s visits in the coming days and weeks and we’ve learned already that hauling the pulse-ox, oxygen generator and his feeding machine around will be a challenge. But we’re up for it!
I want to thank all our family and friends – near and far – for their support, well-wishes, kind thoughts, prayers and even food deliveries! The support and optimism has been amazing, and Sammy’s doing well because of it.
I also want to thank the nurses and doctors at John Muir Hospital in Walnut Creek. Many of them are our friends now and it’s stunning to get calls and text messages from so many of them just wondering how Samuel was doing, long after he left. We built some real relationships with them and they’re so sincere, not to mention great at their jobs.
We had our ups, downs and frustrations with Lucille Packard Children’s Hospital, but in the end they helped Samuel recover from his Rhinovirus and get healthy enough to come home. And of course the folks at Benioff Children’s Hospital got his heart healthy, so thank you to them too.
We’ll continue to post updates as the boys grow, though I’ll try to make them meaningful updates with lots of pictures, major milestones and lots of other events.
Sammy weighs 11 pounds 4 oz as of May 5th. He’s 23 inches long.
Jacob is now 11 pounds, 10 ounces. We didn’t get his length this time.
Some random pics from the past week: