Room With a View

Well, here we are again in our room in the new posh wing of Children's with the view of DC and the Capitol Building. We are always reminded from nurses when we arrive in a room on this side what a beautiful view we have from our window. It is beautiful, but honestly, who notices the view when you are on the neurology floor for something like this? Ugh. But as I write this at 1 pm, we are sitting here waiting for discharge, so that is a good thing!

We arrived in the ER mid-morning yesterday and by noon they had determined it to be a shunt malfunction and three of the four ventricles were enlarged. It makes sense that it was pretty severe pressure because Lucas went downhill in a hurry yesterday. He threw up several times in the morning and by the afternoon was barely moving and crying a lot. I can't describe how hard it was to see him like this. We have heard so many times from the neurosurgery how sick kids can get, but we've never witnessed it this bad until yesterday. I found it very ironic how we were so against surgery and upset about it, but by the time the afternoon rolled around, we were practically begging them to take him to surgery right away. They initially suggested waiting until Tuesday morning so they could make sure they ruled out infection of the spinal fluid, but we asked that they not prolong it because he was in so much pain. The first gram stain of the fluid came back normal, so Dr. Yaun agreed that she could go forward with the surgery. The second day (today) came back clear too... they do three days of cultures.

I have to tell this quick story because we've been so touched by humanity along this journey the last year and a half. After a few hours of being in the ER and watching Lucas decline, crying out every time he was laid on his back (getting xrays were brutal)... it was time to put in the IV (and since his veins are shot from the NICU, this is never fun). I had to leave the room again for Bran to tend to him for this. It seemed to take an eternity, while I listened to him cry outside the room. Then I had to leave the area completely as I just lost it, it all hit me at once... watching my little baby in pain and the reality that we were there again ready to go in for another brain surgery. Why does he have to suffer so much? I started just sobbing in the hallway. The next thing I know, a janitor walks up to me and lays a box of kleenex's on my lap. He doesn't say anything at first, just quietly gives them to me and goes back to clean the floors. Then a minute later he comes back up to me while continuting to mop the floors and says "it is all going to be ok, I just know it," then asks me if it is my son or daughter back there. He keeps telling me it will be ok, that they do wonderful things here. It is probably not the first time he's watched a parent break down outside the ER, but it was so sweet and his kindness is something I will never forget it.

They got him into OR pretty quickly, was in around 2:45 and out at about 5 pm. Most likely, the catheter they put in two weeks ago was clogged by a collapsed cyst, as it wasn't working at all. Since he has scarring and pockets of fluid walled off in the ventricle from meningitis (which we knew about), there was a risk that the cyst could drain, and collapse around the catheter. This caused a back up in three of the ventricles. The fourth (the one with its own catheter on the left that was inserted in March) was still ok.

Ok, this next part is going to be complicated to explain... instead of just putting in another catheter in place of the malfunctioning one, she decided to run a whole new cathether on the outside of his skull (under the skin, between the skin and the skull), then drop the catheter into the right front where all the trouble is, where the original injury occured. If you remember from previous posts, the reason she talked of putting in second shunt system on the right was because it is dangerous to run a cathether from the back left where the valve is, all the way up to the right front, crossing midline. It could damage healthy brain tissue and carries the risk of bleeding. So, she decided to run it on the outside, then back down into the brain. He has two incisions this time, one the back of his head (made larger this time), and one on the top/front of his head (once healed it they will both be covered by hair). So he has a small tube running under the skin from the back, up and over to the front region. Unfortunately this required a hole in his skull in the front to insert the catheter back into the ventricle, but the bone will safely grow around it and will not pinch the tubing. Who knew. Lets hope this works and that it is the last time (at least for a few years)! She said she feels better this time, and since the three ventricles all balooned when the catheter stopped working, it is and indicator that the three are communicating with each other, which is what we want. If this is true, then there may not be a need to go to Plan B, to clear out the scarring.

The good news is he is doing really well today. He woke up from the surgery in pretty good spirits yesterday (not near as much crying as the last two times). He even gave Gran a raspberry when he was first coming around (just one of the bad things I've been teaching him lately... he now sticks out his tongue and blows raspberries on command). And the sweetest thing happened while he was in recovery... here he was 2 hours post-op, and he held his bottle and self-fed for the first time ever! I think he just needed a small bottle that he could grasp with one hand to show us this new skill (since he doesn't like to use his left hand to help, he would never hold his bottle at home with two hands). He just keeps on surprising us! See the picture below.

He had quite a bit of crying overnight and not a lot of sleep, but we're off to a good start this morning. Dr. Yaun said his CT looked good this morning and we're getting ready to go home in the next couple of hours. Please pray for a quick recovery and for it to be the last, and above all, no infection from the surgery. That is always the biggest risk. As always, thank you to all our good friends and family for your support the last couple days. We love you.

PS, we LOVE Dr. Yaun. She is truly an angel. We feel lucky to have her.

Holding his bottle for the first time...