Dec. 11 - Waiting

Song of the day (or morning, at least): Quiet by John Mayer "... and somehow I can't seem to find the quiet inside my mind ..."

It almost seemed like Garrett knew he wouldn't get to eat past 4 this morning, because he was up all night wanting to nurse more. So much for trying to get some sleep. Oh well. I won't complain about the time I got to spend cuddling the little guy, knowing he was just hours away from going through his third, and hopefully final, procedure to treat the vein of Galen malformation.

We got to the admissions desk at Saint Marys right at 6 a.m., and then it was a lot of waiting around with a little bit of talking to different folks mixed in. They said they'd take Garrett for surgery at 7:45, but we didn't hand him off to the anesthesiologists until 8:30. Now it's back to waiting.

Dr. Cloft said he thought it would take three or four hours. The risks are about the same as before -- maybe a little less since they know what they're dealing with. He said he'd still like to go through the femoral artery in the groin, but because Garrett has had two angiograms already, that might not be an option. The backup plan would then be to go through the soft spot in the back of the head. (Eek!) He made it sound like the risk involved with that isn't much different than going through the femoral artery, but somehow that's hard to imagine.

This procedure will be different than the previous two in that they won't be closing individual arteries with "medical grade super glue." Instead, they'll be going into the vein and adding coils to clot off the remaining arteries.

Chris and I were a little concerned about that, as some of what we've read online indicated using coils increased the risk of complications during the procedure and over the life of the patient. Dr. Cloft's perspective that this approach isn't much riskier than the use of adhesive was reassuring, however. Maybe what Chris and I read was related to a different use of the coils.

Dr. Cloft explained that platinum coils will be used, so they won't set off metal detectors and Garrett can still have MRIs to track his progress. When Chris asked what would happen if a coil were to come loose, Dr. Cloft said it would just travel down to another part of the vein and shouldn't be much of a problem, and he added that it's very unlikely one would come loose. The coils will essentially be packed into the vein like a bird's nest, so they should be stuck to each other as well as clotted over.

So that's what's going on this morning. Here's more of a breakdown of what happened with our long day of followup appointments yesterday ...

7:30 a.m. - Garrett had a chest X-ray. I thought it would be the same as the chest X-ray he received in the ER in Wabasha, where he was able to just lay on the exam bed, but here he had to be held in a seated position against a board. It's tricky to hold a four-week old in the upright position like that, with our own arms and hands out of the way. Garrett didn't enjoy it one bit.

8:30 a.m. - Garrett was off to have an MRI/MRA, which took about a half hour, and I got to stay with him the whole time. I think they expected Garrett to squirm and fight being restrained, which is why they wanted a parent nearby, but he pretty much slept through the entire thing. That was a little surprising, given how loud the machine was. We both wore ear plugs, but it was still awfully noisy. Then again, I imagine all the padding placed on either side of Garrett's head to help ensure he stayed still probably muffled the noise enough to sound about the same as being in the womb again.

10:45 a.m. - We met with the cardiologist, Dr. Cabalka. She said Garrett's heart is looking good. It's still large, but it's smaller than it was. They took his weight, too, and I was happy to see he's back up to his birth weight. He left Saint Marys at 2.88 kg, and yesterday weighed in at 3.2 kg.

1:15 p.m. - We met with Dr. Wetjen, a pediatric neurosurgeon. I don't believe Dr. Wetjen was involved in the actual procedures Garrett has had, but he was the first neurosurgeon to talk to us the first morning we came back to the PICU. At the appointment yesterday, he told us Garrett is doing surprisingly well -- much better than he expected. Apparently he's treated five other cases of vein of Galen malformation, all infants within the first days of life, and none of them survived to leave the hospital. Those were treated during his training in Utah, and he thinks our surgeons are better and the technology is better now, too, but that explains why he was all doom and gloom when we first met him.

Apparently yesterday's MRI showed that the ventricles in Garrett's brain were getting bigger, which isn't good. Garrett's head circumference had also increased from 35.6 cm (the last recorded size) to 37 cm. Dr. Wetjen said he'd just place a shunt in Garrett's brain to drain the fluid into his abdomen.

The procedure is pretty low risk, with less than 1 percent chance of neurological complications and only about 5 percent chance of infection. He noted that it was pretty common that part of the shunt would need to be replaced within the first two years, though.

Dr. Wetjen has installed shunts plenty of times. It takes about twenty minutes, and normally patients go home afterward, but because Garrett is so young and because of the vein of Galen malformation, he said they'd have him stay at Saint Marys for a few days just to keep an eye on him.

That was the original plan.

2:15 p.m. - We met with Dr. Nickles, the pediatric neurologist. From everything she checked, she seemed to think Garrett was looking good. She agreed with Dr. Wetjen that the ventricles were enlarging and needed to be addressed before the hydrocephalus caused any problems in the brain.

She explained again that Garrett should outgrow the antiseizure medicine in a few months. Essentially, as he gets bigger, the same dosage will do less and they'll just take him off it.

We didn't ask specifically about his future development at this appointment, but she probably anticipated our concern and said not to worry about whether he'll be "Harvard material," but just focus on getting him to gain weight so he can do better with his next embolisms months from now. I'm not thinking about where he'll go to college, but I am concerned about the huge unknown of what challenges he might face after all that he's been through. She said he's at risk for developmental problems. That doesn't guarantee he'll have them, but he's had "too much instrumentation in his brain" not to be at risk.

I think I might ask next time how much risk "at risk" means. I feel better having actual numbers, even if they're loose figures. Even if the likelihood is relatively small that he'll be able to grow and thrive and develop as if nothing ever happened, I can at least know that it's a valid possibility and try to direct my expectations and positive energy there.

4 p.m. - We met with Dr. Lanzino and Dr. Cloft, the neurosurgeons, for our final appointment. Dr. Wetjen stopped into the exam room first, however, to say that he had looked at the MRI/MRA some more with Drs. Lanzino and Cloft, and there was a change of plans. Apparently Dr. Lanzino had found an article about a doctor in France who had treated 400 cases of vein of Galen malformation. Obviously, that's a huge number of cases, considering how rare the condition is. Unfortunately, this doctor has passed away, but he has left some useful research. From the French doctor's experience, using a shunt to drain fluid in the brain takes pressure off the vein of Galen and can cause a brain hemmoragh. So obviously they didn't want to do that anymore.

Instead, they decided it would be best to try to finish treating the malformation. Reducing the excess bloodflow should reduce the obstruction currently preventing the fluid in the ventricles from draining properly, so both the vein of Galen and the hydrocephalus would be addressed with the procedure. The neurosurgeons reiterated that they'd rather wait until Garrett was older, but they believe the change in his brain is enough of a reason to do it now.

Interestingly, Dr. Cloft said the MRI showed that the malformation itself was actually improved more than he thought it would be at this point. Some of the additional feeder arteries had even clotted off on their own.

It's strange that Garrett's heart and the malformation were looking so much better, but the ventricles were still enlarging. If the malformation was improving, it seems like the ventricles should be better able to drain properly.

Hopefully his procedure today will be as uncomplicated as before and he'll come through with flying colors. This should be last one, unless for some reason they're not able to close off as much as they'd like.