MRI Results

So it was basically what I expected. The MRI showed that he has enlarged ventricles, but he is acting okay, so we are in a grey area as far as shunting is concerned. The neurologist called last week to let me know that there was no apparent reason for the seizure-like activity, which has pretty much stopped by now. It's still a relief that there is nothing abnormal showing up. However, the doctor did tell me that the film showed "moderate to severe" enlargement of the ventricles, with a rounding shape that is indicative of spina bifida. This isn't too surprising, since he has always had some swelling. They just didn't feel that it was enough to shunt him. The real tell would be if this MRI showed a significant difference from the MRI taken when he was born.

I called CHOP and they basically told me that they treat kids, not x-rays, and that if Oliver seems fine, then there probably is no reason to shunt him. They explained that just because the ventricles are enlarged, there isn't necessarily pressure. And pressure on the brain is what causes a problem. Their reasoning is that if he had pressure on the brain, there would be tell signs such as extreme lethargy or excitability, regression in his abilities, or vomiting. While he isn't doing any of this, I have heard of cases where babies who were shunted without any of these tell signs experienced dramatic improvements after receiving a shunt. Sort of like they were doing okay, but did so much better once they received the shunt. All of this said, I do feel like Oliver is doing really well -- making a lot of progress, really responsive, etc. So I sent the film to CHOP on Saturday for Monday delivery.

I called today to follow up. The first time I spoke to them they said that while the ventricles were enlarged, they saw no reason to change the course of treatment. However, they must not have really looked, because they called back an hour later to say that upon looking at them further, there is some change between the first MRI (taken when he was born) and the most recent. What does this mean? That I should put my radar up. While I appreciate the fact that I should just be more attentive to his signs than usual, I feel like I'm on double secret probation. It's like telling me not just to worry, but to really worry. But not to do anything, either. They did move my appointment up from the end of August to the first week. And on their recommendation, I'm seeing a pediatric opthamologist tomorrow. Pressure on the optic nerve is another sign of swelling, so we'll see what this doctor has to say.

So no huge surprises, but definitely an uncomfortable grey space. I just hope my little man is okay.

We Love Nurses

There are lots of things that I love, love, love, and today nurses are at the top of my list. I've actually loved nurses since the day I gave birth to Mackensie -- the labor and delivery nurses were so comforting, and I was amazed that a stranger could be that kind and willing to so completely care for me (anyone who has given birth, and maybe some who haven't, knows what kind of yuck is involved in that, and nurses clean it up and hold your hand through all of it). Since we've had Oliver, actually since his diagnosis in-utero, we have had a chance to interact with many, many nurses. Without exception, they have all been so great. After each extended interaction, I'm so grateful and just want to give them a hug. We actually did give the NICU nurses a basket of chocolate and snacks, although they deserved so much more. But today was Oliver's MRI, so it was back to the hospital. We didn't go all the way to CHOP, but stayed local instead. The nurses were, as usual, great. They were super careful inserting his IV, which anesthesiologists have not been able to do so well in the past (because he is so "well-fed"). They collapsed one vein, but considering what a pudge he is, that isn't so bad. They let me ride down to radiology on the stretcher with him so that I could hold him, and sat patiently with me watching his vital signs when the MRI was done. Our nurse explained that if they saw anything of concern, they would likely call today. And very fortunately, I haven't gotten a call so far. I do know that this doctor keeps late hours, as he has called me at 8 on a Friday evening in the past, but I'm hoping we're in the clear. And by in the clear I'm hoping for no abnormalities that could contribute to seizures (actually, no abnormalities at all) and no need for a shunt. Although I don't think this doctor would evaluate him in terms of hydrocephalus, but I'm sending the films to CHOP for their opinion, as well.  

So today I'm thankful for a successful hospital visit, no complications with anesthesia, no phone call yet, and, of course, nurses.

We All Scream for Ice Cream

You can have barbecue, stay outside with some daylight until 9 p.m., and even turn on the air conditioning, but nothing says summer like going down to the shore. Tim doesn't really like the beach, but I think that seven years of whining to go have finally worn him down. Plus Mac really likes it. So we went down to the boardwalk at Point Pleasant on Saturday as a birthday/father's day celebration. The difference between this year and last year is amazing -- Mac actually went on the rides this year. She even rode the helicopters that flew into air if you pull back the lever. She loved it! 

And speaking of loving things, Oliver L-O-V-E-S ice cream. Just like we all do. I think everyone enjoyed the first Kohr's of the season a little too much.

We get a Break

So Oliver's MRI got cancelled. Apparently, the machine broke down due to a power surge. I'm both disappointed and relieved. We'll have to reschedule in the near future, but for now, we can just enjoy the day. 

Time for Prayers Again, Please

You guessed it - Oliver is going to the doctor for another procedure. He is having a MRI as a follow up to his EEGs. He hasn't really done any of the twitching, but the doctor set this up a while ago. I feel like we should go trough with it since it should hopefully put the issue to rest, and also because an MRI will show if his hydrocephalus has gotten any worse. Since we still have no shunt, it is good to know how things are looking. Of course, since he doesn't show any signs of hydro, seeing it on the MRI would be disturbing because we would be left with a tough decision: if he has hydro but it doesn't seem to be causing any problems, do we leave it or fix it with a shunt? And, of course, the MRI requires sedation, which I HATE. It makes me so nervous (and usually causes some wheezing) every time. We are going to a local hospital, and he has never had anesthesia there. But I'm sure they know what they are doing...

So you can see why I am asking for prayers. Little or big it, it doesn't matter, I know God listens to them all :)