Well, it feels like I posted the last update a bit too soon. On Sunday, Ethan started vomiting and having crazy diarrhea. We couldn't understand how he was suddenly taking such a turn in the wrong direction. He was still doing well with his oxygen needs but was no longer tolerating the bit of food he was getting. Any bit of feed we were trying to give him came flying out of him almost as soon as it went in.
We had to stop his feeds again and he relied on the IV for fluids for another day. When we tried to restart feeds the next day, he was only getting 10 ml/hr and was still not digesting it hours after the feed had ended. So his feeds were held for about 12 hours as we discussed what this might mean for him. He has lost enough weight that his dietitian commented she really doesn't want to know how low his weight is right now as you can see he's lost again. They started talking about giving him nourishment by TPN (Total Parenteral Nutrition) which goes directly into the bloodstream. Given Ethan's veins can be pretty weak (thanks for that one Omi!) and the fact it can be painful by IVs in the hand, our dietitian said he would have to have a central line placed into a major vein leading to the heart to deliver the nutrition he needs. We have friends who have used this with great success for their little man, but it does come with its own risks (mainly if the main line infects and accessing the vein could be an issue also).
As a last ditch effort, we started him with very tiny amounts of Pedialyte for the first bit and then building slightly as we could. Thankfully, he was able to keep this in. The next day we progressed to 1/2 Pedialyte and 1/2 his feed strength at low amounts, and continued daily until last night when they started giving him full strength feeds which when run all day provide him with all the calories he needs. They have since been building the speed at which his food is delivered and giving him time off the feeding pump.
On Thursday, Ethan was switched to nasal prongs as his oxygen requirements came down really well. The prongs were irritating his nose so they switch to smaller ones yesterday and today he decided to remove them on his own when the medical team was in. He was still getting good oxygen saturation numbers so has remained off oxygen all day. We're hoping he goes through the night as well but have the prongs ready should he need them.
Most of us would think, "Yeah, I'd take them off too if it were me!", right?! Well, when he was on the oxygen mask I was repositioning it each time it needed it, but there was one time I must have been too slow at it because I watched him move it himself (similar to how I'd been moving it) so that it sat better on his face. It was really neat to watch! I kind of thought as soon as he was feeling better he'd be trying to get the mask off as quick as possible but he must have known/felt it was doing him some good.
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