The calm before the storm likely happened the last 7 weeks. We’ve been celebrating progress, good health, and “quiet”. We like quiet.
Today’s appointment was more noisy! Justin and Darra helped escort the boys through blood work, a urine sample (both for the ketogenic diet), a G-tube appointment and change out, and follow-up X-rays to check placement. Shew! They are now on their way home from their 9 hour round trip adventure.
The G-tube healing has gone…ok. The boys have avoided infection, but aren’t healing quite like I thought they would. We’ve had constant battles with granulation tissue despite the fact the boys are immobile, and we gently tape their extension and button in place to prevent spinning. We’re changing dressings twice a day and there is discharge every time. No “bad” news, but not as clean and as healed as I would have hoped. That said – the DR today thought they were healing just fine. They taught Justin how to change out the actual G-button. In our case everything happens in twos, so he got to observe one, and then practice on one. 🙂 We will also have a schedule for at home silver nitrate treatments to get rid of the granulation tissue. So our trial by fire school of medicine continues.
A bigger concern: A little bug has snuck in the house. Nolan has a cough. No fever, no runny nose, no gunky eyes, but a cough. And he almost immediately started sounding congested in his lungs. I was on the phone today to work on some outpatient respiratory treatments. We have a nebulizer but I’ve never found it to do much for these two. Basically we’re in hospital prevention mode. With Landon and Nolan, things can escalate from 0-60 in no time. And none of us want that. We were already working on at home suction equipment, so that will come in handy sooner than anticipated. And thanks to the legwork of our awesome home health nurse, a vibration vest is in the works too. Thankfully, by this afternoon, perhaps due to some good coughs, the DR thought his lungs sounded better and it was all upper airway for now. We will continue to work hard to keep it under control.
In related news, the boys’ systems do weird things when they are down. Perhaps the first sign that Nolan was getting more ill was different seizure activity on Saturday evening. We were able to stop it, and he was stable during and after. But it is still heartbreaking every time. He has brief clusters of infantile spasms multiple times per day, and frequent subclinical activity and misfires in his brain. But this was a clonic seizure, which he has had very few times in his life. We don’t like surprises in this area. He handled it in true champ form. I observed him most of the night, and he rested peacefully. I of course did not.
Coming up in the next few weeks we have a neurology checkup on February 3rd, and a hospital admittance for Ketogenic Diet. That is officially scheduled for February 16th now.
I’ll keep you posted this week on how sir Nolan (and the rest of the crew) is doing.
Here is a photo of our little troopers about half way through their exhausting conquest today. Before you wonder – yes, we put pants on them. They were bagged for samples and about to do more labs. Although after the day they’ve had, they deserve a little casual Monday. 🙂