At this point everyone has their opinions on what has been going on the past wk. Frankly, I think they are all wrong. I just think his gut is crappy and acts up at times and he gets spasms that cannot be seen on any xray that cause him a ton of pain. I don't think we will always have an answer for what ails Mr. Avery. It is more a matter of making him comfortable. We have worked too long and hard with getting his pain under control to start back with it.
Yesterday I went to work for a couple of hrs. and the team had rounded and apparently poor little man was so stiff and crying with big tears :( Even they were not used to seeing him like that. This continued all afternoon with his heartrate going from 130s when he was comfortable to 190s with the spasms. Very hard to watch. Well by 2 pm, I could not take it anymore and asked for some IV ativan. That sure is Avery's drug of choice, lol. The kid slept from 2pm yesterday to 5am this morning. Wooohooo. It's excactly what his body needed. The pallative drs. say having spasms like that all day is like running a marathon. No wonder why he was so exhausted.
He woke up today smiley and looking great. I don't know what kind of day he will have today but I think we know what works for him at this point and can help him through these spells. We have added a couple of meds. and increased a few others so hopefully this does the trick. I am thinking he should be home tomorrow :)
Oh and his GI dr. came in last night (very interesting guy is all I can say). He sees Avery out for the count at 8pm last night and says "he looks good" Of course he does, he is drugged up. Then he says " I think it's just migranes!!!!!!!!!! Are you kidding me. Then he says "why don't you just get him a surgical j tube"????? Like it is no big deal, just another surgery. All I have to say to this is, time for a new GI dr.
5 comments:
Yep - sounds like the GI isn't worth his weight in salt. Hope Avery continues to feel better, and the med changes do the trick.
Hugs
Kemal
Is this the same GI that suggested an ileostomy? I'm glad the Ativan helped, but I'm sorry it came to that to get his pain under control. Hoping that you guys get home tomorrow!
I hope you are home soon! I am so glad the IV ativan worked! Can you get some at home for these episodes? (i'm sure not, but you can always ask, right?) Hopefully you will have better luck in the IV med dept than us!
Jessica :)
and yes, it sounds like the GI does not have the same goals as your family- switch'm out! :)
Ohhh holy cuteness..;) Love him!!
Christine and Jakers
Glad Avery is on the mend, and got some sleep. Poor little guy.
I just want to say, to you guys, and everyone who reads this, and has kids who are chronically sick, or in pain, that I'm so sorry. For your children, and for you. It must be so heart breaking to witness this kind of pain in your children, especially when there are no clear ways to relieve it. I wish you as many happy days, and happy times, with your children and families, as there can be. I wish it for us all. And strength, courage, comfort, and some rest during the times when times are not so happy.
With Love, Alison xoxoxo
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