Its Over!

For those that don't know, we ended up in surgery somewhat urgently this week to correct the shunt. Lucas started throwing up on Sunday, and it occured again on Monday and Tuesday morning. This is one of the symptoms to look for with a shunt malfunction... first the sunsetting eyes, then change in appetite, crying from head pain, lethargy, excessive sleep, and throwing up. We've been on alert for these things the last few weeks wondering if we'd make it to November 5. He was tough to diagnose because even though he was sick these days, he would only do it in the morning, then better throughout the day. We didn't know if it was something else, especially since he was just getting over being sick. By Tuesday I knew something was up, as he was more lethargic and crying hard for no obvious reason, which is just not him. He also wasn't interested in eating. I called his neurosurgeon Tuesday morning and asked her if this "morning sickness" could be correlated, and she said yes, that sometimes kids will feel the effect of the pressure more in the morning, then appear fine the rest of the day (which was totally him). She told me to bring him into the ER to get a CT scan, and that she would tentatively be holding a spot for him late afternoon for surgery.

The CT confirmed the pressure had gotten worse from the scan three weeks ago on the right and that the pressure was now crossing midline and pushing/condensing the left side of the brain. This new picture made her suspicious of a block in the tubing, rather than scar tissue being the culprit (as she thought was the reason a few weeks ago). She felt that the catheter had moved too far to the side of the ventricle, which could make it less effective. The other difference in this scan, was now that the fluid area was larger and crossed over to the left side, it would actually make it easier for her now to extend a new catheter from the shunt valve on the left side of his head. This must sound so confusing... but remember, the shunt valve is physically located on the back left side of his head, and a few weeks ago she said if she had to take the catheter from left all the way over to the right front, she felt it carried too much risk of a brain bleed. *There's an explanation and picture of a shunt in a previous posting called "hydrocephalus" if this makes no sense.

So... we ended up in surgery Tuesday evening around 11 pm. She was able to pull out the old catheter, and feed the new tubing through the existing path (so there was no need to create another hole in the brain matter). She put this new tubing deeper into the ventricle and more in the center of the ventricle, which should be in a better position for draining. She confirmed that when she pulled the old one out, there were only a few drops of fluid and that it was not working. Dr. Yaun told me before surgery that her one worry before operating, was that when tubing has been in for awhile, it can sometimes be scarred over and you run the risk of tearing tissue and bleeding when its pulled out. Luckily, it was not attached at all and she said it pulled out immediately.

As scary as all this was, at least its over!!! I think I was more scared of this surgery than any of the others. As I've said before, sometimes it is harder to be in limbo and worry about all the outcomes, than to just barrel through it. That's just what we did on Tuesday. It was such a relief to see her come around the corner and tell me that it was over, that he was ok, and that it all went well. She said she feels really good about the way this was repaired. There is still a chance that there is scar tissue in the ventricle from meningitis that will keep the shunt from being effective and may require another surgery to correct, but we will try this first. If there is scar tissue, we have another option (Plan B) before putting in a second shunt, which is to go in through the top of his head and try to break up the scar tissue. We would try that before putting in a second shunt system (which would be Plan C). We are SO relieved we didn't have to put in a second shunt!! Actually, a relief that we didn't have to do either "B" or "C". We got out of this with the least invasive of the three options.

I should say that he was pretty darn happy even through all of the pressure... I heard it more this week than ever from the constant stream of people at the hospital, "awh, he's just so cute!" (as he smiled constantly at nurses and doctors on Tuesday when we waited all those hours for surgery). When Dr. Yaun came in to show us his CT scan and tell us she wanted to operate right away, he just sat there and giggled at her, and shook his head "no" every time she'd ask him a question. She was cracking up. I need to get it on video so you can see... he now shakes his head "no" at everyone he sees and gives a grin, because he wants to get a reaction. It is a beautiful thing to watch him do things to "see" a reaction on people's faces.

Not that this was a walk in the park by any stretch, there was a lot of crying that was just heart breaking. There's nothing worse than seeing his face and hearing his cry when he wakes up from surgery. Since he's not a cryer, hearing him scream out from pain or from being scared hurts me to the core. Yesterday he would startle really easily from the slightest loud noise, then start crying. It got to the point last night, that I couldn't lay him down for even a few minutes or he would really start screaming. Dr. Yaun said if they've been living and adapting to the pressure for a long time, just the act of removing the pressure and the sudden shift can cause pain. Other than for naps, he wanted to sit in my lap for most of the day. I guess that's to be expected, all kids just want their mommies when they are feeling bad, don't they?

I want to thank Danny (Bran's Dad) for being there for me and Lucas through the surgery. This all happened while Bran was stuck in California on business and he couldn't make it back in time for the surgery (very bad timing for a shunt failure). And Saundra was away on business too. But Danny was there all night by our side, waiting all those hours, walking us to the OR, and was still there when we could finally see him in recovery at 1 am. Danny said it was the first time he's ever heard him cry and so sad to hear (... I told you he never cries)! GranDan and Lucas have something special, Lucas really lights up when he sees him (and so does GranDan). I was glad he was there. My friend Courtney was also there for me Tuesday night. She has an amazing little 25 weeker too, about to turn a year old. She says our little ones are "going to have each other's back one day." :-) Unfortunately, she knows Children's Hospital about as well as I do, and we share some of the same doctors. I was so touched that the minute I told her we were heading to the ER, and probably the OR... her next message was, "What floor are you on, I'll be there." It was nice to get my mind off of things, as we waited about six hours for an operating room. I know our families would have been right there too, if they weren't out of state.

What a difference a day makes though... I'm happy to report he's getting back to himself today (Thursday). We were discharged around noon today and he's been chatty, smiling, and starting to eat again. Relieving the pressure that he's been living with for several weeks (or months) should be great for him after we get through a few days of recovery. I can already see a difference in his eye, and I can't wait to see if this makes his vision improve on that side.

Sorry for the long post, a lot has happened. I'll update everyone in a few days just to let you know how its going.

Just before discharge, feeling much better...