Samuel has been accepted into his first university and he’s not even four months old! As of today, he was moved from John Muir in Walnut Creek to Stanford University’s Lucille Packard Children’s Hospital. Let me start with the latest news first.
He was transferred by helicopter at about 3pm on Tuesday. Kristen says he wasn’t happy about getting packed up for his trip, but the flight nurse called after he landed and made it safely and said he was going bonkers after they landed too. But he was pretty good during the flight. The flight nurse, Amy, called me shortly after they landed and confirmed he made it safe and sound.
Then the doctor called me and Kristen about 4:30 to report that they believe he has a virus and they’re going to treat him that way for now. He’s also going to be intubated again. The coughing, they believe, is tied to him not getting enough air into his lungs and they’re not sure why. So to calm everything down they’re going to put him on a ventilator for about 48 hours and let him stabilize and calm down. They want him to get into a good breathing pattern without issue for a while.
Kristen is driving over there now and I’ll watch Jacob. I’ve recovered enough that I’m not contagious.
This change of hospital comes after some recent degradations with his coughing fits, the need for more access to specialists and after a meeting with his doctors and nurses on Monday.
When Sammy’s not coughing he’s a wonderful baby. He’s calm and he needs minimal oxygen. In fact I’d say there’s a good chance he doesn’t need any oxygen at all.
But something is making him get into these coughing fits every few hours. They can last just a few minutes, but in recent days they can last up to an hour. He gets going and spirals out of control and he just can’t stop.
The doctors don’t know what is causing this. It started on Easter Sunday and was somewhat connected to vomiting. He would get a feeding and then he’d spit it up a while later. That was supposed to go away with the Pyloric Stenosis surgery. Dr. Hui reviewed things again and had no reason to believe there’s an issue with that surgery. They did see last Monday that he was having a tremendous amount of gas in his belly, and they put him on an IV. Then later in the week he was diagnosed with a Urinary Tract Infection, and put on antibiotics.
It seems that UTI diagnosis was a bad one. It turns out he didn’t have a UTI. But he got about four days worth of antibiotics. More importantly, we pinned our hopes that we knew the cause of his vomiting. That UTI diagnosis cancelled two other procedures that were going to happen late last week: Insertion of a NJ tube and a Bronchoscopy.
The NJ tube is similar to the NG tube, but the NJ tube takes things all the way down to his intestines. The idea is that you take feedings further than the stomach, and if there’s reflux – which is suspected – it gives less of a chance for things to come back up. This insertion requires the radiology department to be involved, and getting time with radiology is tough. It was scheduled but cancelled after the UTI diagnosis.
The Bronchoscopy was also scheduled for last Friday. This is where they send a camera with a light on it down his throat so they can see what’s going on with his vocal chords, his trachea and all the way down to his lungs if necessary. He has to be sedated for this and this requires a specialist to be involved. John Muir has lots of great doctors, but not a lot of specialists for these types of things with babies.
So….we talked with 3 doctors and one of Samuel’s frequent nurses on Monday at noon. Before that meeting, the doctors had talked with 7 or 8 other doctors to get on the same page regarding what to do from there. The bottom line is that the doctors at Walnut Creek didn’t think they could do anything further to help Samuel. They suggested that more specialists were needed and getting access to one person per week – twice at best – wasn’t enough for what he needed.
The nurses also have been suggesting that a change of scenery was needed, and ultimately we listened to all the advice and decided a change was indeed in order. So we made it.
Now let’s see where things go at Stanford.