Exhausted and Frustrated....

Is the only way I can describe the last few days.  Poor Avery has not been able to sleep in more than a 2hrs stretch since his nap on Tues afternoon.  Can you imagine.!!!  Poor kid.  He is in chronic pain and we believe it is his gut.  This kid has had just about every pain med. he can be given and it does NOTHING for him. 

It seems as though his gut has completely shut down.  All of his meds. have been converted to IV form but there are a few that cannot be converted.  One of those being baclofen which he needs for his musle spasms.  At this point we dont even think he is absorbing it and he could be showing signs of withdrawals from it.  He is sweating tremendously (he even has a true BO smell) and he has a clonodine patch on and I swear it is not even working b/c he keeps sweating it off.   My heart is breaking for him. 

To boot, yesterday his j tube got clogged and we really need it for the meds. that cannot be converted to IV form.  It being like a weekend here, they had to squeeze him in for a tube change.  A total nightmare.  I really thought that at one point they may not be able to get one in.  His stomach was still full with barium from the day before (mind you he is hooked up to a drainage bag which should take anything that is sitting in his stomach out but apparently it did not).  The dr. could not wire the thread through b/c his stomach was so full.  Avery decided to solve that problem by completely vomitting everything out.  Good thing b/c they were then able to get the wire threaded through.  He was choking and aspirating but we were able to get him cleared out and stable.  What the drs. thought would be a 5 min. tube change turned out to be almost an hr. which is crazy but I am so grateful they were able to get it in.

This all evidence that nothing is moving in his system.  Plus the narcotics we are giving him for pain also contribute to his gut not waking up.  So we are really stuck between a rock and a hard place.  This kid needs to be comforable and desparately needs sleep and we need his gut to wake up.  I just hope all this can happen soon.  We are all just shaking our heads at the amount of pain meds (the big dawgs too) he has had and still no sleep.   Just scares me b/c when he is really in a pain crisis what will we use then if we cannot seem to find something right now.

It doesn't seem like we will get out of here until we get his pain under control, some much needed sleep and get all his meds back to his j tube successfully.  Rick will be taking over today b/c I really need to get some sleep myself and I feel like I am losing my mind.  After have 8 wks off from the hospital, I am finding it VERY hard to be back here 2 wks in a row.  One of my good friends told me the other day " I know this is your life and you are used to it but as an outsider who doesn't experience these things, it sounds so crazy"  To that I say, and THIS is why I call it my " Crazy Normal Life"  although it totally sucks alot "it is what it is"  ...............

Happy New Years to everyone!!!!!!!!!!!