Tuesday, July 8, 2014

Teddy Bear Transport time and a craptacular evening!

So last night when I got to the hospital I noticed that Jude was retching a bit. Mike explained that Jude had a lot of congestion in his throat that he was trying to clear. So I didn't think much of it until he then started vomiting and vomiting. They gave him Zofran and about an hour later Jude finally stopped heaving or throwing up Pedialyte. He slept from about 11-3:00 am when it started over again. They gave him another dose of Zofran and Jude finally stopped. He went back to sleep about 6am but they woke us up again about 8. I feel beat up and I am SURE Jude does.

The neurosurgical team came in and basically said we had to make a decision. I had them withhold the Depakene (seizure med) last night because I was afraid that since it was reintroduced and Jude threw up that it could be the culprit and causing the pancreas issue. I won't go into all the details but let's just say they have a guideline about withholding seizure meds which involves calling in other services. I know she wasn't threatening she was just stating their guidelines, but still talk about being a bit insulted. So I called Jude's regular neurologist and he laughed at the mere mention and said to tell them he said withhold the Depakene and give the IV Keppra.  She also mentioned they were worried about Jude being medically stable enough for transport. She also mentioned they really believe the throwing up is from his seizures. Negative! I don't agree and neither does his neurologist. Jude doesn't throw up from seizures.

So the head neurosurgeon who did Jude's surgery then came in and sat down. He is very nice and very honest. He explained that the surgical team had done their job of placing the pump and done everything in their capacity to make sure the wound was healing well. He is 100% right. So from his standpoint he has to rely on this hospitals neurology and GI department so his hands are tied. That since Jude is now having seizures from not keeping down his meds we could rely on their neurology team and start from scratch or transport. He thinks transporting him to Dallas Medical City is in Jude's best interest. Jude's dr's know his brain and know his GI there and they are like family. If they got this boy through C-Diff they can get him through this! The doctor also mentioned Jude's lipase level is still high but went down. I said "YAY" and he replied "but now we wonder because with throwing up it should be higher it's like it's off kilter". So now do we wonder if the Pancreas is the only issue? Hopefully so! I really do understand the neurosurgeon's point. He does neurosurgery and not a neuroligist or a GI specialist. It's time to get Jude is specialists hands. The neurosurgeon said he felt comfortable letting him transport so now we wait!

I guess it's rather complicated. They have to get a sign off accepting doctor which will be Jude's neurologist. They then have to get a hospitalist to ready everything at the hospital. The insurance has to sign off (just let them give me shit today) and then the Teddy Bear Transport is notified. They will know what precautions to take and I have no doubt will get Jude there safely. We aren't sure if it will be today or tomorrow but it will happen. Jude still hasn't eaten.........nothing since Thursday. It's amazing how long your body can function with just IV fluids.

Even through all this Jude is still holding out with a smile.

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