We’re asking for lots of prayers, positivity, and strength for Bryce, Kyle, and Jenna this week as they prepare for his surgery, which they’ve scheduled for Friday morning. The multi-part procedure will take place at the UW-Children’s Hospital in Madison, and will include the following:
- Nissen Fundoplication: The surgeon will create an anti-reflux valve at the bottom of Bryce’s esophagus so he will be able to keep his meals down; because Bryce can no longer swallow, this will also prevent the risk of aspiration.
- G-Tube Replacement: A surgeon will be replacing Bryce’s current g-tube button with a more modern version (when Jenna and Kyle had the surgery consultation at the UW, the surgeons told them they hadn’t used the kind Bryce currently has in nearly eight years …)
- Fixing Bryce’s floppy epiglottis: A surgeon will be tightening Bryce’s epiglottis, which should help him breathe a little easier and reduce the amount of energy he’s expending by simply breathing.
Because there are three different surgeons involved (I think), it took quite a bit of coordination to get this scheduled, but we’re all relieved that they were able to get it scheduled for this week. Bryce has been vomiting about once a day, and the sooner they can do this and keep all of his food and medicine in him, the better. If everything goes as planned, Bryce may only have to be in the hospital for one night. He’ll have lots of company when he’s there in Mommy and Daddy, and his Grandmas and Grandpas.
In preparation for the surgery, Kyle and Jenna took Bryce in last week for a couple of pre-op appointments. They had his oxygen levels checked as his doctor in Dodgeville was a little concerned with his breathing patterns. When he’s relaxed, his O2 as at 98%, which is great; when he gets upset and agitated, however, his O2 drops to about 70% — it’s like he’s holding his breath. Because his levels are fine the majority of the time, they are not at the point of putting him on any additional oxygen support.
I think that’s it for now … I will be keeping everyone posted on the surgery here on Friday and throughout the weekend, so please be sure to check here for updates. Thank you so much for all the love and support 🙂
Krabbe Disease … we wish more than anything you didn’t exist. These past few weeks have been very tough on Kyle and Jenna, but especially on sweet Bryce. It’s become very clear that the disease is progressing, though how much exactly we don’t know.
Once they returned from Pittsburgh in January, Bryce plateaued once they got his medications in place, which is what the team out there predicted would happen. His movement has been limited since then: He really only moves his arms and legs when he’s experiencing a nerve or muscle spasm: It’s like he’s paralyzed from the neck down.
Since about the first week of March, though, he has been a bit more irritable and has started vomiting after many of his meals. They’ve speculated that it could be because they’re feeding him too much or too fast; that it could be about how he’s positioned and how soon they lay him down after he eats, etc. But there isn’t much consistency to when it happens. That’s what makes them think the disease progressing.
With this in mind, they are anxious to move forward with the Nissen Fundoplication procedure, which will prevent reflux and aspiration: Because Bryce can no longer swallow on his own, there is a greater chance of this happening. Also, due to Bryce’s floppy epiglottis, there’s a greater chance of him getting pneumonia as a result of the vomiting: Because his epiglottis doesn’t seal, every time he gets sick, the bacteria builds up on the epiglottis and could cause infection in his lungs. They are meeting with a doctor at the UW-Children’s Hospital on Monday and hope to move forward with the procedure within a week or so.
Bryce’s vision has also been affected, something that Kyle and Jenna began to notice a couple of weeks ago. He is no longer tracking people across the room or focusing. It’s almost as if his vision is delayed – like it takes a while for things to become visible to him. This change is devastating …
They’re not sure if it’s because of the medication or just the disease, but Bryce is sleeping a lot more now. His digestion is also slow, a result of his lack of movement; they are giving him a supplement with two of his feedings to help him have more regular bowel movements.
In spite of all these things, Kyle and Jenna have been experiencing life with Bryce: They spent a week in Mosinee with the Heckendorf family; they spent the weekend here in Minnesota and went to the Sea Life Aquarium at the Mall of America; yesterday, he laid in his first snow pile 🙂 These among many other things …
We ask for your continued prayers for Bryce, Jenna, and Kyle. Your love, strength, and positivity are what is carrying them, and all of us, through this … Thank you!