Dread and anticipation

So, Brock's surgery is set for November 29th, at 8:00 a.m. I have instructions to arrive at the hospital (OSF in Peoria), with him, at 6:00 a.m. *Yawn* That makes me tired, just thinking about it......

When Brock was seen by the orthopedic surgeon, I wanted to know if he could get a Baclofen pump at the same time as his hip osteotomy. When I questioned the orthorpedic surgeon, he thought it would be great---if the two surgical teams could coordinate a surgery date. Obviously, getting Brock a Baclofen pump isn't as easy as ordering a side of fries with your meal.

On November 7th, we had an appointment with the neurosurgeon, followed by an appointment with a physical therapist, specializing in the Baclofen pump.

I had read so much about the pump and thought it would be so great for Brock to try. However, my "excitement" quickly dwindled when I heard some complications Brock may encounter. Without boring each of you readers out there, I will try to explain Brock's situation as concisely as possible.

Shortly after birth, Brock suffered two severe brain bleeds, a grade III hemorrhage on the right side, and a grade IV on the left. Because of that, he developed hydrocephalus. However, he was so tiny he wasn't able to get a VP shut and instead he received a Macomb reservoir. The reservoir is a small bulb-like feature that was placed near his ventricle. While in the NICU, doctors were able to "tap" the bulb with a needle and pull off excess CSF (cerebral spinal fluid). Brock's hydrocephalus then resolved, in a sense, and he was never required to have a VP shunt.

BUT..........all this time, Brock's ventricles are still enlarged and filled with CSF. Something that has never been a concern until we addressed the Baclofen pump. The pump has a catheter that is placed intrathecally---into the spinal column. Such a procedure could cause the CSF to puddle at the site and in turn Brock may in fact require a VP shunt. (I am imagining a big body of water that is dammed up, until you make a break in the dam....then you have a flood!) According to the neurosurgeon, this is rare, but he has seen it happen.

Rare?

Brock is the epitome of rare.

If it can happen, it usually does for my boy.

Bummer. All I can think of is surgery, after surgery, and soon I have "Bionic Brock."

The physical therapy evaluation went very well. The PT thought Brock would be a very good candidate for the Baclofen pump. He has mixed tone, with lower tone in his trunk/upper extremities, and increased tone in his legs---especially with movement.

So......One Baclofen pump to go, please. ?
Nope. Brock has some hoops to go through first.

Step 1: Trial of oral Baclofen. Something that I dread, given the potential side effects, such as decreased tone all over, and lowered seizure threshold. In other words, Brock could become a floppy rag doll that has even MORE seizures!

Step 2: "Epidural style" Baclofen trial. This would be an all day (but outpatient) trial. Brock would be given Baclofen that would be injected into his spinal fluid, very similar to women receiving an epidural before childbirth. He would be monitored to see how his tone changed and what side effects he experienced.

Step 3: Catheter Baclofen trial. From the explanation that I received, this is a trial that is most similar to the actual pump system. Depending how Brock would respond to the previous trial, I don't even know if this third step would be necessary.

The plan I am pushing for is to somehow do an oral Baclofen trial while Brock is inpatient after this hip surgery. Baclofen can potentially help manage the post-op spasms and if there are any serious complications Brock would already be in the hospital. We shall see if that happens or not. I already have requested that Brock go to PIC after recovery this time. Brock went to the general peds floor last time and if anyone recalls....... Brock coded when he was given Morphine too close to his Valium dose. Something so FREAKY, yet somehow impressive to see dozens of people rushing into Brock's room with such quick response time.

Scary, nevertheless.

I've been saying that "ignorance is bliss." It is truly the case with Brock's upcoming surgery. Last time, I was dreading it, but I didn't know how it was going to be. Now. I. Know.

The most current information I have is that Brock will be inpatient for 3-4 days and casted for 6 weeks. The casts have really got me scratching my head lately. We did this in the summer last time around and Brock got by with long t-shirts and just had his diaper. It is COLD now. He will be home bound for those 6 weeks anyway so surely I can rig up something.....

As not to leave on a complete downer of a tone, I want to share a link. I made a funny video, using each of our pictures animated on Cardinals baseball players. We each got a kick out of watching it and Avery and Cora still ask to see it over, and over!

Personalize funny videos and birthday eCards at JibJab!

Stay tuned for more updates. I hope to get the annual triplet Thanksgiving picture, with their turkey......which reminds me, I should find that storage tote in the garage...... ;)
Until next time.....