Shunt The Front Door

Today was sort of a whirlwind. Yesterday afternoon we were in a state of waiting and we were told we would wait a couple days to determine if he needed a shunt. We had another rough night, Dominic didn't sleep much, and despite continued doses of "Baby Vicadin", he was still very uncomfortable. When Dr. Sood and his team did rounds this morning at 10 am, they informed me that they needed to put in a shunt today. This decision was based on his CT scan, blood work, fever, demeanor and the puffy, fluid-filled areas on the top of his head. I first had to process this and then of course I went straight to the Internet to find out exactly what they were going to do. To be honest, I didn't realize it was another surgery at first. He always made it sound like it wasn't that big of a deal. But they actually put him back under anesthesia and have to open him up again. Fortunately, he already has a few holes in his head from the drains, so they were able to go through there. They placed one end of the small tube in the ventricle where extra fluid is causing problems. There is a valve in the tube that controls the amount of fluid that runs through it and this controls the pressure in his head. It also makes sure that the fluid flows in only one direction, away from the brain. Then they tunnel the tube under the skin from behind his ear to his abdomen where the fluid will be reabsorbed by his body. They cut a small hole in his abdomen to stitch the tube into place internally. It's pretty crazy; I can actually feel the tube when I gently press on his chest. For those of you who are visual learners like me, here's a pic of how it works:

 Dominic did great. The surgery only took an hour or so plus recovery - nothing compared to his hemispherecotmy. My mother-in-law and sister-in-law kept Mike and I company in the surgical waiting room and it was great to just sit and chat. The days can be pretty lonely when the only people you have to talk to are the nurses. By the time they had wheeled him back to our room he was awake, alert and looking around. He spiked another fever, which is very common post-op. He was also still crabby but the pain meds have helped that. Now we just watch for the next few days to make sure everything is working, no fevers and his demeanor improves. He will be pretty sore for a couple days since they push the tubing through all the tissue from his head to his belly. Then we will finally get to go home! That is of course if the shunt doesn't get infected (knock on wood).

In pre-op

We're not sure if this is something he'll need forever or not. Some kids eventually start processing and reabsorbing cerebrospinal fluid on their own and they can remove the shunt. Others have it forever. There is a risk of infection - while it's only 2% in hemispherecotmy patients, we have learned from past experience that Dominic usually falls in that small percentage. From the kidney stones to the brain stem swelling, to low sodium levels and vomiting, to needing a shunt. He always falls in that small percentage of rare side effects. But we are really hoping and praying that it does not get infected. If it does, they have to remove the shunt, drain the infection, treat it and put the shunt back in. There is also a chance that in the future the shunt could clog. In that case they'd have to do something similar to correct it.

Back from surgery, feeling good!

A little snooze

Here is a video of Dominic using his right arm 10 days post-hemispherecotmy. Yeah!!!

Out of surgey, shunt is in, on to recovery!

Dominic has been such a champ through all this. They really didn't think anything was wrong until they did the CT scan and blood work. Besides the fever, he wasn't too bad. Most kids are screaming and crying uncontrollably if fluid is building up and putting pressure on the brain. Not Dominic, he just whimpers and whines. He's one tough little guy. Today in pre-op I was rocking him and humming "Fairest Lord Jesus" (which my mom always sang to us before bed) and just looking in his eyes. We always call him our "Little Old Soul" because when you look in his eyes they seem to go on forever. He's been through a lot more than most people endure in a lifetime and yet he just returns my look with a smile. This little guy has been teaching me a lot about patience, endurance, strength and trust. I never thought I could learn so much from a 10 month old baby, but I have! God sure works in mysterious ways :o)

My favorite boys :o)

It's a New Day

 Dominic's surgery ended around 7:30 pm and Dr. Sood came out to let us know everything went well, no complications and he was in recovery. We were finally able to see Dominic for the first time around 8:30 last night, right before he was wheeled up to the PICU. We then had to wait again to see him as they got him settled into his room. Finally, at 10:30 they let us back to see him in ICU. He was so precious and sleeping peacefully. I guess 10 minutes prior he was not a happy camper, so they waited until his dose of morphine kicked in before they let us in. I am so grateful they were able to take out his breathing tube and his vitals are strong. Prior to surgery, the anesthesiologist said he may have the tube for a few days, depending on if he was able to breath on his own. But Dominic is a strong little guy and has been breathing just fine. His hemoglobin was a little low last night and this morning it has dropped even more, so they are going to give him another transfusion. It's not uncommon after a surgery like his to need more blood, so we're not concerned. Other than that, he seems to be doing really well. The swelling hasn't gotten too bad yet, although days 2-3 are supposed to be the worst. He still has the two drains from his head - one from the incision site to drain the blood and another from inside his skull to drain excess fluid to reduce the swelling. He also as an arterial line, two IV's and a catheter, but we're hoping the catheter can come out today.

Mike and I ended up going back to our room last night. I was really hesitant to leave, but the nurses, Dr. Sood and Dr. Chugani all said to go back and get sleep. The first night in the ICU is all about pain management and would sleep the entire time anyway. He has a nurse that sits with him and monitors him the whole time. Plus, there is really no where to sit and you're not allowed to be asleep when you're in there. There are two small chairs, but he's sharing a room with another little baby. We didn't see any other parents in there either, so after awhile we decided to leave and try to get some sleep. Again, I slept surprisingly well, but when I turned over and saw the clock at 5:45 am, I jumped out of bed. I couldn't wait to get here this morning to see him. We got here around 6:30 and he's opened his eyes a few times. He was awake for a good five minutes and kept slowly looking back and forth between Mike and me with a look like "what in the world did you do to me?!" I am so grateful he's too young to remember this. Dr. Sood stopped by and said he looked great. His drains look good and hopefully one of them can come out tomorrow. He also scheduled a follow-up CT scan for tomorrow.

Out of recovery, heading into ICU

We're hoping once he gets more blood his levels will come back up and they'll be able to move him to a regular floor today. In the meantime, Mike and I are just sitting here, sipping coffee, reading the paper and waiting. I think "waiting" should be my new mantra. We always seem to be waiting for something - waiting for med after med to work, waiting for test results, waiting for the surgery to be over, waiting to hear any news, waiting for him to wake up, waiting to see if his levels go up, waiting to see if he moves his right side. Waiting, waiting, and more waiting. After 8 months of it, I can't wait until I'm not living in a constant state of waiting.

Seeing him for the first time after recovery. What a brave little guy!

The Grandmas with happy tears!

All set up in the PICU

Good morning, Sunshine! Starting to swell...