Saturday, July 5, 2014

Official unofficial diagnosis

Well GI never came to see Jude. The nurse came in and explained the GI specialist just couldn't come by today. I have to admit I lost it and threw a small hissy fit chalk it up to being over tired and very irritated we don't have an diagnosis. Anyway, the neurosurgeon that did the surgery had his nurse practitioner come by. She happened to walk in when I was still upset. She was very nice and explained what she could to me about Jude's situation. She also agreed that it would be very frustrating as a parent to be told a specialist was coming by and not have them show up. Basically they believe Jude either has pancreatitis or an Ileus (I believe it's an Ileus). That is where the intestine is basically paralyzed and not working. Honestly, the treatment is the same for both situations. No food, IV fluids, and slowly introducing food back in. Jude also now has a low grade 99.8 fever and that has stumped everyone so they are just saying they thing it could be from the surgery itself.

She did say that if Jude continues to throw up tonight they will do an abdominal sonogram or a CT of his abdomen. This will most likely just diagnose the above and then we will run the course of treatment. She said this can be a long lengthy process (sigh). So I will be enlisting family and friends help to sit with Jude during the day if possible. I believe we have Monday and Tuesday covered. He cannot be alone in case he vomits due to aspiration. So we need someone here to turn his head and push the nurse button.

Now the good news. Jude's vomiting has decreased with the new medication. It hasn't gone away completely, but it's lessened. He is also smiling some! His seizures have picked up but that can be from the medication or just not feeling well. Yesterday we didn't get many smiles.

I asked a lot of questions to the nurse practitioner. Two examples are...

1. How long could this take - There is really no answer. It could take a few days or a few weeks.
2. Can he get an infection inside from the surgery - He could but generally if that was the issue the body will try to push the device out and it would be coming through the stitches (ouch). She also said incision infections don't generally start this early after surgery.

So far let's just say I am not a fan of the Baclofen pump. Hopefully my attitude will change once we get him well and out of here.

*** foot note - As I typed this Jude puked everywhere. SIGH!

1 comment:

Nicole said...

Have the GI doctor look into Pancreatic divisum. My son also had pancreatitis, and it came randomly. My son is 17 and also had a stroke in utero.

Pancreatitis is almost always in older people who drink, etc. We finally found out about pancreatic divisum after we made our GI look into it.

http://en.wikipedia.org/wiki/Pancreas_divisum