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.
Saturday, March 14, 2015
Sunday, March 8, 2015
On the Move
Ethan had a really good day on Saturday with his oxygenation needs. He was weaned down to 30% oxygen and is almost getting his full calorie allotment throughout the day. He woke early and was in a bit of a foul mood for much of the day but he took a late nap and awoke much more pleasant. He was sent from the critical care unit up to the pediatric floor to continue his recovery late in the evening and is settling in well.
Friday, March 6, 2015
Back in Hospital
Well, it has been just over a month since our last visit to the emergency department for a respiratory illness and Ethan had been doing well since his discharge from hospital.
Then the last Wednesday in February, while he was at school, he got sick several times. When he came home, he was fine, he just had an occasional barky, wet sounding cough. Thursday and Friday morning he got sick once first thing in the morning and continued to have this occasional barky cough. We increased some of his medications and he seemed to be improving the next three days without any emesis. On Tuesday, after we thought we were on the road to recovery, he started to throw up again and was starting to look like he was coming down with another respiratory illness. Wednesday he was still throwing up several times a day and in the afternoon his nose started running, he was sneezing lots and he wouldn't stop coughing. At bedtime he was really starting to work hard to breathe and was pretty agitated with anyone doing anything to him (giving him his usual puffers or changing his diaper or repositioning him). I was starting to get quite concerned with his health but we waited to see if he would settle through the night. Which he did not! By Thursday morning he'd had a really rough night, was still working really hard to breathe and was not tolerating much of his food. We decided to head to the emergency room to have him checked over anticipating he would likely be admitted to hospital.
And admitted he was. He is back in critical care on 50% oxygen but doing pretty well at keeping his oxygen saturations high. He is improving but still working hard to breathe. He has been able to rest a couple times and goes into deep periods of sleep.
About the only thing that is good about showing up at the hospital in cold and flu season is how quickly they are able to provide results for respiratory illnesses. He is RSV positive, so they want to keep a good eye on him. He tested positive for RSV in March of 2011 and was quite ill from that. He still looks so very thin (may have lost even more weight). We restarted his feeds and are working to increase his calories.
Then the last Wednesday in February, while he was at school, he got sick several times. When he came home, he was fine, he just had an occasional barky, wet sounding cough. Thursday and Friday morning he got sick once first thing in the morning and continued to have this occasional barky cough. We increased some of his medications and he seemed to be improving the next three days without any emesis. On Tuesday, after we thought we were on the road to recovery, he started to throw up again and was starting to look like he was coming down with another respiratory illness. Wednesday he was still throwing up several times a day and in the afternoon his nose started running, he was sneezing lots and he wouldn't stop coughing. At bedtime he was really starting to work hard to breathe and was pretty agitated with anyone doing anything to him (giving him his usual puffers or changing his diaper or repositioning him). I was starting to get quite concerned with his health but we waited to see if he would settle through the night. Which he did not! By Thursday morning he'd had a really rough night, was still working really hard to breathe and was not tolerating much of his food. We decided to head to the emergency room to have him checked over anticipating he would likely be admitted to hospital.
And admitted he was. He is back in critical care on 50% oxygen but doing pretty well at keeping his oxygen saturations high. He is improving but still working hard to breathe. He has been able to rest a couple times and goes into deep periods of sleep.
About the only thing that is good about showing up at the hospital in cold and flu season is how quickly they are able to provide results for respiratory illnesses. He is RSV positive, so they want to keep a good eye on him. He tested positive for RSV in March of 2011 and was quite ill from that. He still looks so very thin (may have lost even more weight). We restarted his feeds and are working to increase his calories.
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