Today I had a good day visiting with Sammy at Lucile Packard Children’s Hospital at Stanford. I got to hold him for about 3 hours of my 5 hour visit. He did a lot of looking at me, making funny faces and watching me make funny faces back at him. We counted to five more times than I can count, and we sang ABC’s. I played some Beatles and Foo Fighters for him too, for good measure.
During the other two hours, we did another swallow study. If you remember back to late February, he had a swallow study conducted at John Muir in Walnut Creek. They fed him some barium mixed into his formula so they could take a burst of x-ray pictures to see how he was processing the liquid. All things checked out just fine.
During today’s procedure, Sammy did the same study, but this time he was older, and he was positioned in more of a standard feeding position. They fed him the same barium mixed with formula. But today’s results showed he has a very small aspiration into his airway.
This is very similar to you taking a gulp of water going down the wrong pipe, into your airway. If you think about your reaction when that happens, you almost choke and try an catch your breath. Imagine that happening every time you took a drink!
The neonatologist and occupational therapist both reviewed the video, and they had to slow it down to see it. It’s very small, but small drips over time means a lot of liquid. So we’re not going to be able to bottle-feed him much. They did the test today with a thin liquid and a thicker liquid, and they saw consistent results. In the video below, you can see the nipple of the bottle in the upper left, and periodically there are bursts of liquid as he sucks from the bottle. You can clearly see how he process it in his throat. I can’t see the aspiration, but the trained professionals can clearly see it.
So… that means another procedure for Sammy. He will get a G-Port, or a gastric port. This is a tube that will be placed from his belly to his tummy, and it’s accessible on the outside of his belly. Unfortunately this means he needs to be intubated once again and he’ll need to be put under again. But the surgery is short and standard, and babies get this more than you can know.
Once he has this, we’ll feed him about 5mL of food via bottle, and then inject the rest into his stomach via the G-Port. The doctors also say this can be handy for giving medicine too, if necessary.
He’ll keep this G-Port for anywhere from 6 months to two years. He’ll have to see a speech therapist on an outpatient basis. Hopefully overtime as he matures, as his vocal cords heal and he gets bigger, he’ll take more by mouth and less via his tummy. We want him to be able to enjoy the taste of food, but we’ll have to be careful with it.
We’re not sure when he’ll have this surgery, but it’s likely to be later this week or early next week. It’s about a two-day recovery. And then… he’s likely to come home!
So you’re probably thinking to yourself, “wait a minute, Todd, I thought he was going back to Walnut Creek?” That was the plan, but a few things are now in play that likely changes that:
- The main reason for him to be transferred back was to learn how to bottle feed so he can get off all other tubes. But if he’s only going to take 5mL per feed and get the rest via his G-Port, there’s nothing else to learn. He can already do that.
- The hospital told us the transportation back to Walnut Creek is only covered at 60%. We don’t know what the cost may be, but can reasonably guess a transfer fee by helicopter or ambulance is likely a $25,000 fee at minimum. So about $10,000 would be out of pocket. We don’t quite understand this, but we’re not paying $10k for the convenience of moving him back to Walnut Creek. We’re going to ask some more questions about this. Our guess is the doctors at Stanford may be deeming this transfer “not medically necessary”. We just don’t know.
So Samuel could go home if he continues breathing well with no desats or Brady’s over a five-day period that he needs assistance to recover from, is feeding well via the G-Port and doesn’t have the Rhinovirus.
The doctors started the test to check for Rhinovirus today, he’s doing well on the breathing and we’ll see what happens with the G-Port.
With all that said, it’s possible he could be home by the end of next week. That’s somewhat terrifying to me and Kristen, but exciting at the same time.
Two Months Since Charlie Died
Today marks two months since Charlie died. I think we’re doing about as well as can be expected after losing our son, but it’s been tough. The outpouring of support has been great, and we’ve had an awesome display of help from our family. Thank you all.
Kristen and I think about him often, and we have our moments of weakness where only a good cry will resolve it. I visit with him regularly; his urn is in our bedroom near the fireplace, next to our favorite picture of him. We’ve also placed some photos of him near the changing table in Jacob and Samuel’s room, so they can look at him while being changed. Jacob is regularly smiling at the pictures. Of course we have photos of Jacob and Samuel up there too, so he probably sees himself.
Today I got a nice note from my friend Andrew McVeagh, whom I haven’t seen in about 7 or 8 years, maybe? I used to work with him at NBC in Los Angeles. At any rate, Andrew now lives in Erie, PA and still works for General Electric. Today he shared that didn’t know what he could possibly do to support us in our loss, but was then inspired to start a team to raise money for the March of Dimes. He’s inspired by us, and is using our story to inspire many others to support this great cause. So far his team has raised more than $4,100. Wow! Thank you Andrew for honoring Charlie in such a great way.
If anybody wants to donate to his team, here’s the link: https://www.marchforbabies.org/Fundraising/Team?teamId=1083779&teamEventId=2527839
Here’s the link to Andrew’s inspiration: https://www.marchforbabies.org/AndrewMcVeagh