James has not been doing well since his VNS surgery on September 24th. For the first couple of days after surgery we though it was just pain and discomfort from the surgery. Then he started to return to his old self. Then he took another turn and started to get really juicy again. Stacy thought that it might be because of the medication he is taking for his secretions. Walgreens had just started using a different manufacturer for the medication, so Stacy was able to get the prescription filled at Target, who uses the original manufacturer of the medication that James was taking. He started to get better. Problem solved? Nope.
He took another turn. Okay, maybe he’s teething. Wait, he’s not wearing his amber necklace. We took it off before his VNS surgery because he couldn’t wear any jewelry for surgery, and we forgot to put it back on. Last Sunday, the day after Stacy put it back on, he was so much better. He wasn’t nearly as juicy as he had been and is sats were back up in the 90s. We really thought we figured it out this time, but we were wrong again.
This past Monday, his sats were still all over the board. Stacy had him on 4 liters of oxygen, and his sats were in the high 80s, and low 90s. She’d give him a little suction and he’s pop up to the high 90s, but then drop back down a minute or two later. We tried some breathing treatments to see of that would help, but there wasn’t much of a change.
Tuesday was a bit of a busy day with three doctor appointments. We went to see the pediatrician in the morning, and he put James on an antibiotic to see if that would clear up whatever had been going on with him for the past couple of weeks. Tuesday afternoon we had a follow up with the surgeon who put the VNS in. Everything looked good, so then it was off to the neurologist to have the VNS turned on. Stacy and I had discussed holding off on having the VNS turned on until James was over whatever was going on with him. We didn’t want to add anything else to the mix, but the neurologist said that he was going to start with such a low “dose” that it shouldn’t really affect anything.
To turn the VNS on, the neurologist took this handheld device, and held it over the left side of James’ chest where the VNS was implanted. It was pretty cool, but kind of scary at the same time. This handheld device can turn the VNS on and off and can program the settings of the VNS. The doc set it for a very low amount of stimulation every 5 minutes for 30 seconds. He wants to see James next week to bump it up a little bit. We do need to get James back to his baseline as far as seizures go to really see any results. James usually has around 15 seizures a day, but they usually stop when he’s sick. If we’d have to guess, we have probably only seen around 10 seizures over the past two weeks. As bad as this sounds, we need James to get back to having 15 seizures a day to know if the VNS is actually working.
Stacy spends much more time with James than I do, because I have to work, so she knows James better than I do. She had been going over everything we had done with James over the past couple of years, trying to figure out if anything changed. Were we doing anything different? The only things that she came up with was that he started school, he just got a VNS, and he stopped seeing the chiropractor. Maybe that’s it. Maybe the chiropractor has some special healing power. I suppose it could be that James didn’t like school and missed his mommy so he got sick so that he could stay home with her, but let’s try the chiropractor first. Sorry James, we need to get you back in school.
This is a pic that Stacy took of James’ pulse ox before she got him out of bed yesterday morning:
The top number are his sats, or the oxygen saturation of his blood. This is a very good number, and something we would like to see all day long. But James plays by his own rules. His sats are 95 when he is in bed, sleeping on his belly, with no oxygen. During the day when he is up and sitting in his chair, he needs to be on 3 liters of oxygen to have sats like that.
We had an on-call nurse stop by today to take a look at James and to listen to his lungs to make sure this wasn’t turning into pneumonia. Fortunately, his lungs sound clear and air is moving. He still has lots of secretions that we’re trying to stay on top of, and he is on 3 liters of oxygen. One thing I didn’t mention previously about the VNS is that we have the ability to temporarily turn it off. It comes with a special magnet that can be used to send a jolt to James’ brain if he is having a seizure. That jolt should stop the seizure. To do this, all we need to do is swipe the magnet over the VNS. This magnet can also be used to temporarily turn off the VNS by just holding it over the VNS. The nurse recommended we try that during his feedings to see if there is any improvement. She also recommended that we talk to the neuro about turning the VNS off until James gets over this illness. That was a concern we expressed with the neuro before he turned it on!
I feel like I ask this too much, but please keep praying for James. We don’t know what is going on with him, but we just want to get him back to normal. Especially now that fall is coming and we’re getting into pneumonia season. If you want to keep up with the day-to-day happenings of James, make sure you check out his Facebook page. Stacy posts there often, so you won’t have to wait a week to get your James updates.
