Coming home, take two...

The persistent fever is gone and we've never found out what really caused it in the first place. But who really cares at this point when...

We're going home!!!!

Yep, this time it's for real! We're cleared for departure from the Ronald McDonald House and our baby is in his seat ready for the trip back home.

I had plotted an escape route to I-495 to the northeast through Maryland but I decided that I may as well head straight for I-395 and then go through The Mixing Bowl (where I-95/I-395/I-495 converge southwest of Washington).

Well, it certainly was interesting. From the hospital, you head south on North Capital to New York Avenue, then southwest a bit until I-395. What made it interesting? Well, let's see...as we're waiting to turn right onto New York Avenue, a drug deal goes down right outside the passenger window. They didn't even try to hide it...a bunch of bills go one way, a baggie of (presumably) crack goes the other. Then we get to I-395 and people are trying to make lanes of travel where none exist.

But hey...the tunnels were really cool and we didn't end up in Anacostia so it's all good. Even better, we got to use the express lanes southbound which meant we bypassed most of the traffic that was standing still on I-95 until we hit the big mega-merge of 10-12 lanes at Dumfries (Exit 152 in Virginia). There we sat for about 30-40 minutes until we cleared the exit. But that was still better than the people who were stopped just south of Springfield (Exit 169 in Virginia). Memo to self: never drive to or from Washington on a holiday weekend!!!!

I will say that spending a couple of weeks in Washington was interesting, if not bordering on the positively surreal. And whilst it's an interesting place to visit, there is no way you'd ever convince me to actually want to live there. The traffic is congested, parking is nearly nonexistent, it's not a terribly friendly place for the most part, and frankly there are too many people in a very small area. I'll take the Raleigh-Durham area any day of the week and twice on Sunday! That's not to say that there weren't some enjoyable times there but it's definitely a place to visit but not to live.

I'd say the weirdest part of it was when Congress was off making that law trying to interfere with Terri Schiavo's feeding tube which had been pulled...it was surreal watching the story on the news and looking out Alexander's window at the Dome which was obviously in business passing that very law. Then not too far from where we were staying, there was another anthrax scare at a post office and that really freaked out a lot of people. The first weekend we were there, they had the ACC tournament at the MCI Centre downtown.

Even the license plates seemed angry. Gone were the DC plates that read A Capital City! (I thought that one was a real clever play on words) or Celebrate and Discover!. In their place were plates that read Taxation Without Representation. I hate to break it to them but taxation with representation sucks just about as bad, particularly when you realize that Congress is hardly representative of we the people...

Like I said...weird and surreal. It was like Washington just didn't seem aware of the same reality the rest of the United States has to contend with on a daily basis. I'll definitely visit again (the Smithsonian museums are worth that...plus I usually stop by the National Archives and Abe's place to remind me why we should keep fighting for truth, justice, and the American way even when they seem to be considered old-fashioned values nowadays.

Anywho, we stopped for lunch at Quantico just outside of the main gates of the big Marine barracks and the rest of the trip was fairly uneventful.

By the time we pulled into Zebulon, Mommy and Alexander spent some time with Grammy and Nicholas whilst I went home to unload the Escape. Then one more trip to Zebulon to pick everyone up to go back to the house.

Then it hit me on US-64 on the way back to Garner that second time.

This is the first time since 04 Feb 2005 that all four of us have been in the same vehicle at the same time!

After the last several weeks...that was a wonderful feeling (even if it was a real kick in the pants!).

We could get used to this, you know!

Our bags were packed, but...

It's almost a week since surgery and Alexander is doing very well. As Dr Bruce promised, the swelling would start going down just about as quickly as it came up after Alexander's surgery.

The past week has been a miracle unto itself. Alexander progressed very quickly after surgery and went through a couple of PICU step-downs until he hit the general neurology floor not very long after his surgery. That's pretty amazing considering that only a day or two before, his brain was being operated upon! The advances in medical technology are just plain amazing.

Dr Bruce was pleased enough with his progress that he returned home to Nantucket on Friday. He has a flat not too far from Children's for when he does surgery in Washington but his home is on the island. A word about that...he stayed an extra week in Washington for the purpose of doing Alexander's surgery. If that doesn't tell you what kind of a stand-up guy he is, I don't know what will.

We've been awfully pleased with the results of the surgery as well. In the past week, Alexander has been far more alert and awake than he had been for his entire life before the surgery. Come what may, that was one of what has been many miracles since his surgery.

I think it's safe to say that Dr Bruce and his team have given us our son back to us with a much better prognosis and quality of life than what he had before the surgery. That's not to say that there aren't potential problems down the road but for what we wanted to do (stop the seizures), it appears to have been done. The fact that he's quite alert and half of the seizure medicines have already been discontinued and the phenobarb is being ratcheted down is a very good development.

With that in mind, we were making preparations to get under way today... to the point of singling up all of the lines and turning the screws for a quick cruise in a southwesterly direction.

That is, until Alexander started running a fever!

Having been through one U-turn to the hospital, we weren't all that keen to do another one. So whilst we get to stay here for them to try to find out what was causing the fevers, Grammy and Nicholas hitched a ride with Gramps for the trip back to North Carolina. At least some of us are going home.

But don't worry guys, we'll be on the road behind you before you know it.

Alexander's recovering in PICU

We went by the hospital at o' Dark Thirty to see our little guy and he's recovering from the surgery just fine. He still had the breathing tube installed but he was definitely more alert and it's not long before that tube is gone. Then he gets Pedialyte and if that stays where it needs to, then he gets back to feeding on breast milk as soon as possible. He may be booted from PICU as early as tonight or it may happen tomorrow.

There is definitely a lot of swelling on the right side and toward the back of his head but the swelling that was evident in his face last night had actually improved. We're told this is because Mommy ordered Alexander to do a fair bit of peeing and it seems that he's been taking her orders seriously. :)

Every now and then, he would try to cry but would just turn beet red instead. But that's not necessarily a bad thing!

We caught Dr Bruce after his rounds and he was still very pleased with how things were progressing for Alexander which was very reassuring. He figures that tube is coming out quicker with Alexander getting more alert and grabbing onto it.

Alexander's first surgery

Beware the ides of March! That's good advice if you're a Roman Emperor or an area of cortical dysplasia because there are sharp things coming right at you to take you out!

Of course, things always work smoothly and on-time in our nation's capital, right? Anyone who has flown into Reagan National (DCA) or Dulles (IAD) can tell you, the airspace round the capital is congested and getting racked, packed, and stacked is a fact of life. Well, you've just described the holding pattern circling above Children's operating suites as well.

So when I arrived on scene half an hour before surgery was due to start (1100 hours), we found out that surprise, surprise...the pattern was completely full and we'd have to circle a bit before landing. But that's OK...that gave Mommy a chance to catch a much-needed cat nap and me to hold him for quite a while.

Of course, Alexander hadn't really had anything to eat since 0230 this morning (apparently surgery and a full stomach don't mix!) so you can just imagine how much he was loving the delay. Yeah...right unhappy and that pacifier just wasn't pacifying our little boy.

After circling for about an hour and a half, he was cleared for landing to the operating suite down one floor and it took us twenty minutes to navigate the rabbit warren that is this (or any other, for that matter) hospital. Initially, there was a bit of confusion as to where he was going but we did manage to get to a holding room where we could hold and kiss him one more time before it was his time to star in his own special episode of ER.

Time on the clock: 12:20 PM.

After Alexander went off with the gas passers (ha ha!), we had a decision to make as far as making some of the removed tissue available to a researcher at Harvard who is trying to discover why the neurons get stopped in their migration to the outer part of the brain and then back in again. Because Alexander is a unique case, his tissue may be of particular interest in this research and who knows, he might well help other little ones who have his same condition.

Time on the clock: 14:32 PM.

The IV lines have been placed:

It took longer than anticipated because Alexander has been a pincushion. But they're there now and the incision has been made round the top of his head where they plan to go through the skull to get at the dysplasia. Alexander is reported in excellent condition.

Time on the clock: 15:39 PM.

The surgeons have reached the brain and are starting to go after the dysplasia. Alexander is still reported in excellent condition.

Time on the clock: 17:02 PM.

Closing the incision has begun and the lesion is out. Alexander is still reported in excellent condition.

Time on the clock: 18:12 PM.

Surgery is done and Alexander is on his way back up to the PICU to recover. He is intubated and probably will be through the evening as he should be very sleepy but that tube can come out if decides to get active. There will be a lot of swelling on the right side and the right eye might swell shut but that should be finished in seven-to-ten days. Dr Bruce is confident that he's gotten all of the focal area and didn't touch the motor strip which is very good news. There are some other areas that might prove problematic later on but electrically that isn't indicated at this time.

Total time: 05:52:46.890.

Alexander cleared for surgery tomorrow!

We met with Dr Bruce today to read the runes (MRIs) of the area and hear the proposed surgical solution. This was my first time meeting Dr Bruce and he's definitely as genial and nice as has been advertised. Plus he's got a fanstastic wit thoroughly in keeping with his Scottish heritage (from Edinburgh).

The reading was consistent with the cortical dysplasia theories that we had been getting from other facilities. What makes Alexander relatively unique is that it's apparently unusual to see a focal dysplasia covering a relatively large area. Typically, focal dysplasias tend to be very small and the non-focal ones usually result in the whole hemisphere being removed.

As it was explained to us, the neurons in the brain migrate outward from the center and then back again to form the pathways. This particular region where the dysplasia is had something interrupt that migration and the neurons are just disorganized. Because of that disorganization, the signals coming from that region are not normal and thus leading to the seizures.

It has been obvious by now that the witches brew of medications has been unsucessful in controlling the seizures and that surgery to remove that area of the brain is required. It does him no good for the disorganized neurons to stay in there because of the bad signals so it's got to come out and the quicker, the better.

There is a 70-80% chance that removing the dysplasia will stop the seizures cold. There might be a few 24-48 hours after surgery because of irritation to the brain and they might be different in character (more tonic-colonic) but afterwards should go to nil provided all of the affected area has been removed. The area in question will fill with spinal fluid and there isn't any expectation of deficits in relocatable services/pathways.

The concern is the proximity of the dysplasia to the motor pathway and because the dysplasia is on the right side, the left side would be affected. Unfortunately, it's hard to say what the ultimate effects would be...it could be undetectable to weakness and no fine motor skills in the left hand (the hand is more likely than seeing the leg affected) making that hand useless. We won't know that for some months to come.

The hope is that Dr Bruce will get all of the dysplasia out in the first surgery. There are other areas that might need attention further down the road which might require follow-on surgery but the big deal is to get the known area taken care of first making it easier to fix other areas later on.

Of course, any time you've got surgery, you've got risks up to and including death but we've been assured that because there appears to be nothing else wrong with Alexander, these possibilities are remote but cannot in good conscience be reduced to nil.

Thus, we're at the point probably every parent in the world dreads... having to sign the consent for surgery. When you've got the best in the world doing the operating, that's pretty much a no brainer (Dr Bruce at this point shows his wit indicating that if we want the operation, we've got to sign the thing...apparently a bit different way of putting it than Julia is used to but certainly on the mark nonetheless).

The first hour in the surgery will be used to put him under the influence of anaesthesia and take the opportunity to insert a more permanent intravenous (IV) placing. This will allow IV fluids to be given without having to continually stick him. After seven weeks, six of which have been in three hospital facilities...Alexander's veins (and Alexander!) have been poked and prodded enough that he's doing a good representation of a pin-cushion.

The actual surgery itself is expected to take three or four hours but we've been ordered not to freak out if it goes a bit longer. As far as we're concerned, take your time and do it right. The old measure twice, cut once rule is just as important in surgery as it is in carpentry!

Once out of surgery, Alexander heads straightaway to intensive care (PICU) where he'll spend the next couple of days to recover from the surgery. He will have quite noticeable swelling on the right side down to his right eye but that should subside. He's then expected to get back to feeding and will be stepped down appropriately as his condition improves. With any luck, the seizures will be gone and he will go home with much less medications than he's been getting (and we get a more alert baby, happy bonus!).

That means we've probably got another week up here and a follow-up trip six weeks after he comes home along with scans for the next couple of years (but that can be done in Raleigh).

If that's the price we've got to pay to have our son have as best a quality of life as we can give him, we will gladly pay it.

BTW, Alexander passed the ten pound mark today!

Alexander's first plane ride!

Alexander is being transferred from Duke to Children's National Medical Centre in Washington, D.C. after having a consultation from Dr Derek Bruce. The signs were pointing to surgery and of course, any time you want to operate on our kids (or anyone we care about), if time allows, we're going for that second opinion!

We had contacted one of the doctors that works with Julia to see if she had any ideas on getting that second opinion from a neurosurgeon. After she had worked the phones for three days, we were put in contact with Dr Bruce.

He personally called her back (a highly regarded neurosurgeon, possibly the best in the world!) which in and of itself is regarded as unusual. But then even better, he spent thirty minutes with her discussing the case and after she was done, it was as if a load had been lifted from her shoulders and she could see a concrete plan to try to solve Alexander's problem with the seizures. A bit of Google action revealed that Dr Bruce's CV is as impressive as his bedside manner and we had no problems feeling comfortable with working a transfer to Children's in Washington, DC.

Dr George at Duke eventually came round and confirmed the diagnosis of focal cortical dysplasia and indicated that he could perform the surgery in the coming week. But at that point, the decision was taken to go ahead and go see Dr Bruce. I'm sure that Dr George would do a good job but when you have a chance at getting the pediatric neurosurgical equivalent of Wayne Gretzky performing the operation, that's really a no-brainer.

It's also a no-brainer when the past couple of weeks have basically been a case of playing with his medications and doing more MRIs for the most part. So bye-bye Duke, hello Washington!

So today, Alexander and Mommy got to ride a Super King Air 200 from Raleigh-Durham International Airport (RDU) to Dulles International (IAD) and were then transported by ambulance directly to Children's in (technically) northwest DC (DC is laid out in quadrants centered on the Capitol building...Children's is directly north of the Capitol and just barely west of North Capital Avenue).

Med Center Air

Grammy, Nicholas, and Daddy got the less impressive ground route from Zebulon to Washington, DC...including remembering just how much Beltway traffic stinks normally but particularly on a Friday night with less-than-stellar weather conditions. We had passed through storms in Richmond and the expectation was for a snow storm in Washington (which fortunately never came to pass!). It took about four and a half hours to get to the Washington area (with a stop north of Richmond for dinner and fuel) and then another 90 minutes to get round the western part of the Beltway to get to Children's using Georgia Avenue. Of course, we might have saved some time if the streets were better lit and signed but we got a good tour of Howard University, nonetheless. We even passed Walter Reed Army Hospital once. But we eventually found our way round to Children's National Medical Centre.

We're staying at the Ronald McDonald House about two miles to the northeast of the hospital and it looks to be a wonderful place. It's certainly a lot more affordable than the hotels round here. And the parking is cheaper, too.