Eli Update 3/10/09

Well, after we got home from our little "trip" I took Eli to the pediatrician and he felt like Eli's sickness was the result of pneumonia. So, off once again to the handy-dandy X-ray machine we went. Then yes, we discovered pneumonia was present and Eli started antibiotics. The pediatrician didn't feel like the limp legs were related to the pneumonia so he wanted us to travel to the Neurologist and have her take a look.

First though, we had Eli's very first dentist appointment. This place was way cool. And, of course, my mother reminded me "you know you are paying for all that nice stuff". Well, I try not to think about that. They said everything looks good with Eli and there was not to much build up on this teeth either. I was really worried since he holds his food and saliva in his mouth a lot, plus all the throwing up he does. His teeth do have white spots on them, and they said it is from the medications he takes. The medications leave the spots oh his teeth while they are developing. It is not a real worry, as it is just a de-calcification, but nothing big.

So, then a few days later, with my insurance card and another co-pay in hand, I headed to the Neurologist. She was very concerned with Eli's legs and wanted an MRI done. She thought maybe it was a tethered spinal cord. The following day we headed down for a brain and spinal cord MRI. However, upon arriving, we were informed that the MRI machine would quote "harm him" if we proceeded. Apparently, the Neurologist and the Radiologist were not on the same page as to the proper protocol for patients with VNS's. So, after a few hours of back and forth, we ended up getting a CAT scan. It does not give as much detail, but at least it is safe!!

Then on Thursday I got a call from the PPEC that they could not get Eli's temperature above 95 degrees. So from around noon till 9 pm at night we worked to get Eli's temperature up. It was very helpfull to have these temperature strips you put on their forehead so you don't have to keep re-taking the temperature. After 9pm we got him back to normal and he has stayed there ever since. But still very odd and not good.

After the results came back, the Neurologist's office called and said he had a blood clot and we needed to follow up with the Neurosurgeon. ARGH!! Upon seeing the Neurosurgeon on Monday, we were informed it was NOT a blood clot, but rather a sub-dural hygroma and sub-dural hematoma. Basically, there is bleeding under his skull. The shunt in his head is effectively reducing the size of the ventricles, but His brain is still not expanding to fill in the space. This space is putting undue pressure on the veins and they are leaking. We asked him on a scale of1 to 10 how sever was this. He said for Eli this was a 1. He also told us that this would not cause Eli's legs to go limp nor cause problems regulating his temperature. So, we had some good news that this is not really that big of deal for him, but still no answer to the limp legs.