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!
You will definitely need to have a redo birthday! Sounds like an awful night. I'm glad that you are getting training before they send you home. I had about a 2 minute training on how to use the pump right before they sent us home with Bryce. Nothing on changing or really even caring for the G-tube. I had lots of questions after coming home that could have been avoided with some training and a little extra time in the hospital. Oh well, live and learn. Anyway, I hope everything goes well with the G-tube insertion today and that everyone can get some better sleep tonight. Thank you so much for the update. Good luck with the training. It may all seem a little overwhelming right now, but you will find that you will get the hang of it very quickly and it will be a huge blessing for Ryder! You're in our prayers!
ReplyDeleteSo sorry you are going through this. Thinking of you and hoping Ryder feels better after this hospital stay. Maybe you will be out by July 4 and can re-do your bday then?!?!
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