This past week Shari began driving and I attempted to get back into things professionally. This threw our schedules around and I had the odd sensation of learning about Ian's status first from this blog. It felt weird to learn myself from the blog. Tonight, when Shari wakes to pump, she'll have the same experience.
Today we took two cars home from the hospital having left one overnight. I got home moments before Shari. I got out of my car and watched her come down the street and pull up. I had the oddest sensation. It felt like the day we came home with Lila, knowing life would never be the same. But this time, I could feel that we had just brought home much more, and Ian wasn't even in the car yet.
Tonight we met with the neurologist who told us what they had seen on Ian's MRI. To net it out, Ian has a brain malformation called Bilateral Perisylvian Polymicrogyria. And we, have a special needs child.
To keep you from looking it up, here's a quick summary in English, from the web-site of researcher Christopher A. Walsh:
Polymicrogyria You’ve been told that your child has a condition called polymicrogyria. Most people have never heard of this and have no idea what it means for their child or for their family. This brochure gives you some general information about polymicrogyria. Our knowledge of polymicrogyria is expanding all the time but currently we still have many, many unanswered questions. What is polymicrogyria? Polymicrogyria is a medical term that refers to a particular abnormality in the way that the surface of the brain developed during pregnancy. The first, most important thing to understand is that there are many different forms of polymicrogyria and many potential causes, so two patients with polymicrogyria do not necessarily have the same condition or the same prognosis. Your child’s doctor will attempt to find out what particular kind of polymicrogyria your child has and what might have caused it, since these are important to understanding your child’s future and planning his or her treatment. Normally, the surface of the brain is composed of many different folds. Polymicrogyria means that in at least one region of the brain, there are too many folds and they are smaller than normal. Polymicrogyria can occur focally (i.e., in just one area of the brain) or it can occur in a more generalized way (i.e., all over the brain). In addition, it can occur by itself or it can occur in association with other abnormalities of brain formation. How your child may be affected by polymicrogyria depends on many things, including where exactly the polymicrogyria is occurring, how extensive it is, and whether or not other problems are associated with it. How is polymicrogyria diagnosed? The folding pattern on the surface of the brain requires a radiological test (one that takes pictures of the brain) in order for doctors to be able to see it. For this reason, polymicrogyria cannot simply be diagnosed by physical examination, blood tests, or EEGs. MRI (magnetic resonance imaging) is the best way to diagnose polymicrogyria. Sometimes, CAT (computed axial tomography) scans can suggest the presence of polymicrogyria, but MRI gives much better views of the folding pattern of the brain surface. What causes polymicrogyria? Polymicrogyria can arise from multiple different causes. Sometimes problems during pregnancy, such as infections or episodes in which there was a lack of oxygen to the fetus, can lead to polymicrogyria. Sometimes, polymicrogyria is due to a genetic problem (i.e., an abnormality in the genes, or DNA). Genetic problems include both those that run in families and those that have appeared for the first time in the child who is affected. Sometimes, we cannot find a specific cause for polymicrogyria in a particular child. How will polymicrogyria affect my child? As discussed above, how significantly your child may be affected by polymicrogyria depends on where it occurs in the brain, how extensive it is, and whether it is associated with other brain malformations as well. In some cases, polymicrogyria is present in only a very small portion of the brain on one side – in these situations, patients may only have very mild problems, or no problems at all. At the other extreme, polymicrogyria is sometimes present across the entire brain on both sides. In these cases, patients can have severe mental retardation, cerebral palsy, and seizures. Therefore, to get the best information on how your own child will do, it is important to discuss with your doctor the specific characteristics of his or her polymicrogyria. What are some of the bilateral syndromes of polymicrogyria? Bilateral syndromes of polymicrogyria are those that affect both sides of the brain, usually in a symmetric manner. Many of these syndromes are either known to have a genetic cause or are suspected to be genetic in origin. Three of these disorders are summarized below. Bilateral perisylvian polymicrogyria (also called congenital bilateral perisylvian syndrome) affects the regions around the Sylvian fissures on both sides of the brain. Patients with this form typically have problems with motor control of the mouth, such as speaking or swallowing difficulties. Sometimes mental retardation, cerebral palsy, and seizures can also be present. This disorder appears to be inherited, although it may be passed down in different ways in different families. |
It is too early to say how this will play out. Just as you can't tell how a person with a normal brain will do as he or she grows, we can't tell how Ian will do. He and his brain will be growing and changing too rapidly with far too many variables to predict the level of severity or exactly how this disorder will appear in him.
After Ian's MRI on Wednesday, we received a copy of the report. Shari didn't want to read it until we spoke with the doctor. I wanted to get informed enough to ask better questions, so I went ahead and looked it up. I'm glad I did, the 48 hour head start I had on getting my own brain around Ian's brain has helped me keep it together today and be there for Shari.
Today, Ian looked fantastic physically. Shari held him again, and he's continuing to feed on breast milk and is sleeping well. In fact, he was doing so well, that they decided to start weaning him of a drug called Milrinone. The last time they tried weaning him of this was about a week ago. And he didn't take to it well. That was a big set back.
Seems he still wants his Milrinone, as I was doing some more research on what we are getting into with Ian's condition, the NICU phoned to tell us that Ian was put back on the ventilator tonight. He was having to work too hard at breathing and they weren't comfortable leaving him that way. Just another step we wanted to avoid, re-intubation.
I speculated with the doctor who called, that this appeared to be an exact repeat of the last time they tried to wean him and that it'll take a few more days to get back to where we were this afternoon. He concurred, but time will tell.
Tomorrow, I'll have to do some more research on Milrinone. I know it helps his heart. I know his heart is related to oxygen supply which is likely related to the myriad of troubles he has had. Everything is all connected somehow, but it doesn't really appear that way at times.
Some of you may know that we've also been managing the health of my father Robert, who has also been in the hospital since late February. It has been surreal to have my son fed by a tube, and my father at the same time. The switching between hospitals, and similarities in each of their care, is hard to get my head around. One of the doctors I was speaking with at UCLA made the comment that there are a lot of similarities between Neonatology and Geriatrics. For both, they are dependent on the care and decision making of others for their behalf. Yep, and Shari and I are in the middle.
So, to end on some good news. My father was released today. He has a long way to go, and remains on a feeding tube, but mentally there was more of my father to experience than I've seen in years. It is a wonderful milestone that he can go home and progress beyond our wildest expectations. I'm happy for him and will go check on him this weekend.
Just a quick note of thanks to everyone. Our support network has made all the difference. Particularly our family. We couldn't get by without my mother who has been a saving grace with caring for Lila and day-to-day matters. Shari's family has also been doing all they can from northern California. This weekend, her sister Tammy and her husband Doug begin 3 consecutive weekends with members of Shari's family in LA with us. We are forever grateful to all of you as we absorb, process and prepare for what lies ahead.
Details as the road continues to turn....
Mike
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