I got to sleep in a bit today because our nurse came in early at 7:30am. I had been up and down with Jude since 3:30 so I was thrilled to see nurse Alan when he got here. Mike had been up with Jude from 12-3:30, so I obviously took the second shift. Jude has had an issue with not getting comfortable enough to sleep well this past week, and that includes last night. He grunts, complains, and has seizures throughout the night. I am not sure what's going on with him, but we do what we can to make him more comfortable. So when Alan got here I thought about how lucky I am to have great nurses to take care of Jude when Mike and I are emotionally and physically exhausted. I climbed back in bed only to hear the Jack Russel Terrorists beckoning outside our doors. The look I shot my husband probably equaled the elbow jab I gave him, and he took care of the situation. I got two glorious hours of non interrupted sleep, and it was fabulous.
Once I got up I had to rush about to get to a Scentsy party that I am SO GRATEFUL was booked. My parties are dwindling a bit, but this was a good one. I was blessed that two people booked off her party. Once I got home the nurse explained that Jude had seemed a bit uncomfortable all day, and then the puke fest started. Jude threw up over and over again. He seemed to be a small fountain of vomit, and it was so discouraging. He has been throwing up so much lately, and Alan finally said, "I don't mean this wrong but I don't care what the (beep) that doctor said (and he did say beep) this Nissen is blown. It was awful. Jude threw up 5 times before Alan left, and seven times total, it's so discouraging. We run his feed so slow, he is upright, he gets compression therapy, and he gets acid reflux medication...but yet it is not working. This is Jude's enemy...this phloem. Many kids have special needs, but many know how to cough....Jude doesn't. I get comments like "I hope it's nothing serious", and in reality it can be. He doesn't have a stomach virus, this is Jude's everyday life, and it makes me sad this is his normal life...this is what he knows. Many kids I know live with diabetes and the stick of daily needles, so we all have our own issues. Jude just deals with throwing up on a consistent basis. So we are working hard to get the cough assist machine to help him extract the phloem before it causes additional issues . We work so hard with Jude on getting everything out of his chest....and I hope this helps him.
On another note...I am struggling a bit with a new venture I have mentioned that I have set out to accomplish. I believe I can do well at it, but there is so much drama surrounding less than important situations. I am wondering how to enlighten those around me what is truly important in life. I feel like my situation has taught me so much, and I want to share with them what they really should be focusing on, but I am unsure how to that. I won't go into details right now except to say that I pray for guidance, and I request your prayers too.
1 comment:
Jenn,
His nissen might not be undone. Finnian throws up a lot and we are going to get the nissen done but you know I know its not going to stop him from throwing up. We do know that some of Finnian's throw up sessions are seizure related not ones that you can see as they say sub clinical seizures so seizure control is the only thing that will stop them. I have found that flattened ginger ale is one of the only things that will work with Finny when he is on a throwing up session its the only thing that will stay down and it will keep him hydrated. We have tried a lot of meds and they don't work but the ginger ale does. Canada Dry seems to work the best. Don't you just love the amount of laundry you have to do when they are on a throw up session???
Hugs
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