Sunday, July 19, 2009

Finally I am getting around to updating our blog.

This week was just crazy. We headed down to Fresno Wednesday afternoon. We spent the evening with the boys (Grandpa and I) in a hotel and early Thursday morning Jonah went in for his GI study. Just as we were leaving Fresno I thought I would try radiology one more time about fitting us in for an MRI. Wouldn't you know it, out of the dozen times I called this week they finally fit us in for Friday. I had to laugh as we scrambled to call the hotel back and make another reservation plus return and get ourselves settled (again). The boys did ok, definitely not great, especially Noah in such a small space but we got through things.

The GI results showed that Jonah has GED (gastric emptying delay), the very same issue as Noah. He digested about 39% of his food over 1.5 hours when they expect to see 65% or higher. *Sigh* I guess this doesn't surprise me. I spoke with the GI nurse Friday and she started Jonah on the erythromicin that Noah is currently taking to see if it can't speed up his stomach motility. Jonah's MRI Friday went well (thank goodness as they have to put him out and use an LMA, which is a less invasive procedure then intubating), there was no change from December. The neurosurgeon did say that Jonah's shunt appeared to be possibly occluded (slightly) but because he is not symptomatic he is not going to touch anything until he shows us that his shunt is really not working. There are a few water bags throughout the brain area (due to his hydrocephalus) and one in particular is hanging out in the back of his head in front of the occipital lobe. I talked to the neurosurgeon about Jonah's eye specialist being worried about his vision and he mentioned that this water bag definitely could be causing issues. As I was driving home, I thought, "why can't this area be drained?" Of course I thought of it after the fact! Obviously the neurosurgeon would have done this long ago if it were an option and I am assuming it is just too risky/dangerous. I have not heard from Jonah's eye specialist (Dr. Kelly) so I will ask her this very question and we see UCLA in a week and a half and I plan to ask them too. It might seem to them like a silly question but I would really like to know why nothing can be done about these water pockets.

I found out something else that had me upset about Jonah's neurosurgeon. One of the MRI nurses told me in very hushed tones (off the record) that they have been having problems with the shunt that Dr. Magram uses because it is not very common in the field so when a lot of patients relocate their new specialists have issues with the system. We saw this happen at CHLA when the boys were transferred for their eye surgery. It angers me because we will not be staying in Bakersfield forever and at some point we will relocate to an area with a good children's hospital. The nurse did say that because Jonah has the Pro-Gav shunt he may face more procedures then are necessary because if it malfunctions the whole system will probably need to come out and replacing it is always more risky. I just can't believe this, I guess I had an idea after what we went through in Los Angeles but why does this specialist not use a more common shunt system? Wouldn't that be in the best interest of the patient?

So for now, we pray that Jonah will face minimal surgeries when it comes to his shunt.

This Wednesday we go to see the pediatric surgeon about Jonah and Noah. He will talk to us about their vomiting problems. We are simply there to gather information and decide if surgery is really the best option to help correct the constant throwing up.

Poor Jonah has been sick all week with a cold and it has gotten worse. Noah started up this morning with a runny nose so now we are watching him too. I almost took Jonah down yesterday to Fresno but after a phone call to the nurse she just encouraged us to watch him since he does not have a fever. Hopefully this will resolve before it becomes too serious.

Grandma Langston flies in Saturday to Burbank. We plan to pick her up and then go to the beach for the day. It will be fun.

So that is the latest, as I hear from Dr. Kelly (Jonah's eye specialist) I will post more about his MRI.

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