Peytin went in for his MRI on Monday. The neurosurgeon wanted to check the flow of blood in Peytin's head veins because the typical hydrocephalus or fluid in the brain that corresponds to Spina Bifida was not present; however, there was obvious fluid buildup. Peytin wasn't allowed to eat for 5 hours before the MRI. I was worried that he would be screaming for hours prior to the MRI but the little champ just slept through it all. He was very ready to eat after the MRI. As soon as he got the bottle, he was chugging and gulping like crazy :-) The nurse found it quite amusing that when they put on the blood pressure pump Peytin just sucked harder on the bottle as if to say, "I hate this but as long as I am being fed I will be fine."
So this afternoon, we attended out first Spina Bifida clinic which is held every first Tuesday of the month. All the doctors, therapists and social workers involved with spina bifida patients meet with each family. It was a typical doctor's office wait of over an hour. We then met with a social worker first which was somewhat helpful because there is a Medicaid program for those that have a child with a disability but whose income is too high to qualify for the standard Medicaid. Hopefully we can get that to help with all the incoming bills. Then we met with a therapist. It is kind of annoying to have meetings with the therapists at this point though because Peytin does not need them. As of now, all of his movements are normal. For me, it is just one more person to remember that really doesn't need to be there. They call and want to come to the house and see Peytin and I just want to say no thank you. Having so many people is too overwhelming...Lastly, we met with the neurosurgeon. He is an absolutely amazing doctor; very relate-able (he doesn't use medical jargon and make you feel stupid). He showed us the MRI and it is very rare. A normal brain has a vein that runs in the middle of their head and comes down the back of the head which branches into two parts and then flows into the jugular vein. The blood in Peytin's head flows down the middle vein but then does not connected to the branched segments. It instead flows to a random vein running up the side of the head. From there it is unclear where the blood is going. The neurosurgeon has never seen this scenario so he has emailed the MRI pictures to another expert who works with hydrocephalus. There is also a meeting that the neurosurgeon will attend on Friday with several other neurosurgeons and radiologists in which he will present Peytin's case. They will be combining ideas to come up with the best treatment option. He didn't want to go over the options because it is overwhelming enough to have another problem without introducing things that may not even need to be used.
While this is all very hard, I again try to see the blessings. If he didn't have Spina Bifida and be monitored for hydrocephalus, there would have been no need to check for this new problem. There may have been no signs until it was very severe. At least we have a heads up and can watch Peytin closely. The neurosurgeon assures us there is no need for concern about brain trauma or anything like it at this point. We just have to watch him closely and be patient. Peytin is such a sweet and well behaved baby! We hope and pray he will continue to be as comfortable as possible. What a wonderful blessing our little guy is!
No comments:
Post a Comment