continued update.....
sorry..couldn't turn pic!
Well "training" meant I just jumped right in and put the tube in myself with supervision. As of now Ryder has a NG tube through his nose down into his stomach. I put the tube 34 cm down through his nose. I started crying after the 1st 10 cm with him screaming:( I was definitely traumatized doing that more than Ryder was! It was scary, but I needed to be able to do it so I can care for him at home. It was better that way so I don't stay up dreading the task all night! He will have a pump at night for fluids and I was given a stethoscope. I am getting a quick crash course before starting my nursing classes at least! Anyways, Ryder seems to be adjusting to it so far. We will be in the hospital until Monday night. We are hoping he doesn't try pulling it out of his nose. If he does, we will need to get a GI tube through his stomach. I sent Les home to grab some pillows and stuff so at least we can be a little more comfortable! My cell phone is out of battery...Les will grab my charger too (if he remembers). I forgot to mention in the 1st update that Ryder has another ear infection also. His right ear is draining tons of puss..yucky. The doctor said that means the tubes are working at least.
A glimpse of a child's battle with a rare degenerative disease and the legacy he left behind
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Friday, July 1, 2011
In the hospital--but doing ok
I don't have much time...but have a lot of info to update so I'll just get right to it. Ryder has been having trouble w/constipation & difficulty swallowing. I thought his constipation had cleared up 2 weeks ago after a 3 day clean out w/miralax & sentrox...then miralax daily. I was wrong. He is still having daily, soft bm's, but he is very, very blocked up still and in pain having bm's. He went to have a swallow study done about 2 weeks ago as well. We had to thicken his liquids and give him even smaller bites of solid foods as a result of that visit. He hates the thickened liquids. He has barely gotten down 10 oz (if even) of fluid a day for several weeks now. I called the GI yesterday and also also talked to a nutritionist. They were very concerned about him and held a meeting to discuss a plan of action. In a few hours I was called back and told to pack our bags for at least 1-3 days and bring him to the hospital as soon as we could. Since no beds were available, we waited in triage last night until about 2am. Blood work & x-rays were done. We discovered he is still very constipated/blocked up. He has been getting rehydrate through IV.....luckily he wasn't to dehydrated and we caught this in time:) His blood work came back normal, so he is still getting adequate nutrition--as of now, but since he is such a picky eater, having trouble swallowing and hardly drinking anything, a feeding tube will be placed today. We are being trained how to insert it and manage that today. He is also getting flushed out...thank goodness! Les and I wish we where still in triage!! The budget cuts are sooo apparent in the hospital--very sad! We've had no pillows, a roach crawled across the floor and into/under my bag (uugh--made Les hunt it down), there isn't enough staff and just all around uncomfortable. Ryder refused to sleep in the crib so Les, Ryder and I all spent the night on a 3 seated couch. I had a migraine, but they couldn't give me Tylenol and the gift shop was closed!!!! Today is my birthday----I think I'm going to have a redo birthday next week;)
We are being called into training so wish us luck!
We are being called into training so wish us luck!
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