Amazing that so much time has passed since my last post. So let me get you caught up, although most of you are connected to the Liuzza prayer hotline, so you know! At Jack's 2 month appointment, we found out that he really had not gained much weight and was slipping off the chart at 1% for weight and head circumference. Suddenly I realized that I needed to slow down and put Jack's needs ahead of Emma's for a while. I just wasn't finding the time to nurse for long periods and he wasn't demanding any more; he seemed content. Now he eats a lot more, we stay at home a lot more and he's catching up quickly at 12lbs 7oz today. His head circumference was worrisome, but the Dr. felt it would start growing when the body had more fat calories to spare. On May 13, Jack had a series of seizures and went into the hospital. A CT scan showed, and an MRI confirmed, agenesis of the corpus collosum (ACC). Basically, the corpus collosum is a bunch of neural pathways that communicate between the right and left hemispheres of the brain. So, agenesis means that it didn't grow. And that should have happened in the first trimester of pregnancy. In Jack's case it grew partially. It isn't something that will fix itself or grow later, nor will it worsen. The best thing we can do is to force the brain to find new ways around the problem. Somewhere along the line we may find delays in development in any area and need to treat that with therapy (physical, emotional, speech, etc). There is a very broad spectrum of outcomes for people with this problem and many people may not have been diagnosed and function fine in life. The immediate problem is that for Jack it's bringing on a lot of seizures. We had him on Keppra and that seemed to be controlling them for a couple of weeks. Then I guess he outgrew his dose. The Dr. kept upping the dose, but finally suggested bringing him into the ER to get a "loading dose" (a lot at once) of phenobarbital on Thursday. Didn't stop the seizures until Sat afternoon. In the meantime, Dr. Fike ordered another EEG, MRI and a spinal tap. EEG showed a lot of seizure activity near the center of the brain, MRI showed the same as on 5/14, and the spinal was totally clean. She really wanted to rule everything out that might require other treatment, and now that we have, we are left with what most people with epilepsy have, no concrete explanation. I'm thankful that he's mostly healthy. The hardest part is just living under this vague threat that he might not grow out of the seizures and that he may have developmental problems ranging from the maximum to the minimum. But that part is true of all children, isn't it?
Being in the hospital reminded me that many many children have worse problems than Jack. It is very sad to see children on the Peds unit. I can't imagine what their parents are going through. We had a shared room this time and I lucked out with a "roomie" who became a good friend. Her daughter, Emma, turns one this weekend. A simple staph infection, MRSA (so-called and feared because it is resistant to most antibiotics), settled in adenoid glands in her neck. The glands became swollen and had to be cut and drained. She got this infection from a scrape on the knee. It's a scary world when bacteria have out-evolved antibiotics, and that's where we are. Emma had a mal-rotated lower intestine when she was born and has had two emergency surguries already. I met Harmony's husband, who stays home with Emma and their 4-year old, Alexis (nickname: Lucky). He used to be a mover and has a bad back. Mom Harmony is a marketer for an apparel retailer that's HQed in town. She wants to go to med school and become a surgeon. Really nice people to sit up late and talk to while the constant parade of nurses comes and goes.
Emma's up, gotta go. Will post this now and continue soon.
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