A trip to the Hospital...UGH...it's getting old!

(using a mission picture from Italy...thanks to his brother)

Yes, you read right...another trip to the hotel hospital.  I really didn't know what to do.  Over the last 2 weeks we have seen J's behavior change, his appetite decrease, out-put decrease, sleep is VERY VERY slim...we thought maybe another retraction was on it's way.  

I've been keeping a record aka journal of J and his health/behaviors/etc...since we moved to Ut and he contracted NMS or dystonia in 2008. This has come in handy especially now when his moods and behaviors act out.  It just so happens that when J's behavior changes, his appetite decreases, etc...a retraction follows within a month. It's happened each time.

So, I couldn't decide whether to call his regular doctor or the Surgeon doctor.  So I called the nurse who works with the surgeon and told her what was going on.  She referred me to the nurses that care for those type of "gadgets".  I sent them a picture and also sent Dr. Surgeon a picture as well just in case.  This was Monday.  Monday night, the gadget nurse didn't know what was up, so she was going to talk with the Surgeon.  Tuesday morning we get a call from the nurse of the surgeon telling us that the surgeon wants to run some test and it would just be easier to admit him to make sure something hasn't gone wrong in the tunnel. So we went.  

Tuesday night, they put a midline in (that is awesome to watch) and then did a CT scan.  Everything came back normal, the white count was good and he wasn't dehydrated.  Gold star MOM!

They were puzzled. They put J on a liquid diet to see if they could flush out the blockage and maybe relieve some of his pain.  Tuesday night was the first night he slept for more then 2 hours! 

They put him on a anti gas medicine and kept his pain down with Ibeprophen and Tylenol. His blood pressure then went down...like 80's over 50's...so they monitored it for a while. They really didn't seem to worried, since J has a tendency to have low blood pressure every know and then.

By Wednesday his output was getting back to normal and he was wanting food, but his blood pressure was still under 100. The surgeon still couldn't figure out what cause it other then it might have been a blockage or why the blood pressure was low. He decided to still release J with supplies to help the blockage the next time it happens and to monitor the output...UGH!  They also had the nutritionist come in to give me some more ideas on what to feed J..I already knew every idea they came up with and even had to tell them no to some of them because of J's limited food choice. As for the blood pressure...they knew eventually it would go back to normal...no worries...right?!

The nurse of the surgeon (bless her!) even wrote out a prescription for one of J's behavioral medicine.  Why, because our Drug doctor told us that it only comes in pill form or in liquid form which hurts the stomach...I think I wrote about this before.  I told the nurse the situation and that it's really not staying in J to do it's behavior job. She then said she knew it came in sprinkles...Sprinkles?  how awesome is that! AWESOME!

Now all we have to do is wait for our pharmacy to get the "sprinkles" in and make sure there is no more blockage..oh and that the stoma doesn't retract...THAT's ALL!

This mom is ready for a break!