Friday, November 28, 2008

Enjoyed bowling with the family.

Posted by ShoZu

Wednesday, November 19, 2008

Surgery is a go!

We drove down to Iowa City today to meet with the Neurointervential Radiologist about Jake's AVM. Jake ended up having a field trip today in Iowa City today, so we ended up meeting him and his teacher down there. It worked out pretty well!

We met with 2 doctors, one being the head of the department (and will perform Jake's surgery.) The head doctor was very optimistic about everything. He said that placement of Jake's birthmark is very optimal for treatment, and cosmetically will be a fairly simple fix. Working with AVM's is this doctor's speciality, so that was encouraging to hear as well.

Jake is scheduled on December 12th at 7:15am for an angiogram and an embolization. He will have to stay overnight for at least 1 night, with the possibility of having to stay over the whole weekend. They are hoping to take care of the whole AVM with the initial embolization, but may require a second embolization that will be done through "direct puncture." During the angiogram, he will have the catheter run up his artery through his leg, and they will be taking constant x-ray pictures to see how the mass is shaped. Then, for the embolization, they will inject glue (which is chemically very similar to Krazy Glue) into the AVM and it will solidify and block the blood flow to the AVM. The procedure, we are told, will last approximately 3-4 hours. He will be under general anesthesia, so he won't feel anything. They will keep him over night that night to observe and follow up with the procedure, and if necessary do the direct puncture embolization on Sunday. Direct puncture would be less invasive, and as the name indicates, involves the glue to be inserted directly into the birthmark via a needle.

The doctor was optimistic that, given time, the embolization will take care of a lot of the mass of Jake's birthmark. He said that we may need to have some excess skin removed eventually, but he should see a big improvement in the weeks and months following the surgery.

Jake, again, was simply amazing during the appointment. He is so grown up and mature - and the doctors and nurse noticed. At one point, when the doctor was telling us about the direct puncture procedure, I leaned over and joked with Jake that if they do that, he might hear a hissing sound from all the air coming out of his birthmark. Jake took the joke from there and said that if they're not careful, he'll go flying around the room like a balloon. Jake took both doctors by surprise so much, that they both stopped mid sentence to laugh at Jake's joke, and tell him what a funny guy he is. The head doctor even said that he was impressed with Jake's sense of humor, and most patients (even adults) really freak out and get scared when they hear about how the procedure is done. It was pretty neat to see him interact and react to such weighty information.

He had to have his blood taken for some lab work for the procedure. He was quite the trooper in getting another needle prick.
We left the hospital feeling optimistic and thankful that Jake will have some relief. This has been weighing on him for quite some time. He's happy to have an end in sight!
Please keep praying, as the bleeding is still an issue until the embolization is done and is successful. He's getting pretty frustrated with having to deal with it. He'll be glad to not have to carry a roll of gauze in his pocket, "Just in case."
I'm sure Michael and I will have a laptop with us at the hospital, and will keep everyone updated as he goes through surgery and recovery. Thanks to everyone for all their prayers for Jake. They are greatly appreciated!

Blood pressure.


Posted by ShoZu

Jacob is excited.

At the hospital talking to doctor about Jacob's AVM. Looks like we're finally gonna get this taken care of. Jacob's excited.

Posted by ShoZu

Monday, November 10, 2008

Christopher's first wresting practice

Squat and Shoot
Posted via Pixelpipe.

Friday, November 7, 2008

Snow crab legs (continued)

Christopher got a kick out of the claws that were pulled from Jacob's meal.

As he used the claw to pick up and eat his French-fries, we discussed whether the claw is a simple machine or a compound machine. His education learned from at school tells him that it's a simple machine.

Posted by ShoZu

Red Lobster

Jacob gets much pleasure from fresh snow crab legs. He is very meticulous in getting every piece of available meat from each leg. The clean plate shows his appetite.

I don't remember ever being brave enough to try any kind of crab legs - especially at his age.

Posted by ShoZu

Wednesday, November 5, 2008

More Information about Jake

I got a phone call today from Jake's doctor. He went over the results of Jake's images that were taken on Friday:

It turns out that Jake doesn't have an hemangioma...he has an Arterial Vascular Malformation - or AVM for short. He explained that an AVM is basically a "miswiring" of Jake's arteries and veins. He compared the arterial/vascular system to a tree: a tree has a trunk (arteries) and branches (veins) and it's anatomy gets smaller and smaller to the leaves (capillaries). Jake's AVM is like having 2 trunks put together - and it's caused a high blood flow situation (which is the "whooshing" he heard when he listened to the birthmark). The blood doesn't have the correct route to take (going to the branches and leaves). One great thing he said is that the AVM is not attached to Jake's skull at all, it's just at the scalp - so that makes treatment a bit easier.

He is going to have us meet with an Intervential Radiologist, and Jake will undergo an angiogram. He said this will enable them to get a more specific picture of which vessels are not formed correctly. He said the MRA showed all of the vessels, but the angiogram will be much more specific in it's imaging. The angiogram will consist of having a catheter inserted (most likely into his thigh) and floated up to his birthmark to take images of the vessels. During that procedure, he'll also undergo an embolization. That will consist of a slightly larger catheter being inserted, but they will be able to steer this catheter and have it go to where they need it to go. He will have a coil inserted into the vessels that are malformed, and this will cause a clot that will shut down the blood flow to the birthmark. The doctor said that Jake should start to have some shrinkage of his birthmark following this procedure, but it won't go away completely. After this is done, then we can start to look at getting the birthmark removed - which will be much safer after the embolization is successful.

On a "not fun to hear" note...the doctor did inform me that if Jake were to have a puncture wound to the birthmark, he'd run the risk of bleeding to death. I almost had to laugh at how the doctor told me this...he prefaced it with "Not to freak you out, but...." freaked me out a little. He said that if Jake were to sustain a wound to that area, to put firm pressure on it - which is what we've always done when it bleeds - good to know that we've been doing the right thing! Michael joked that since we now know the risks - we should tie a pillow around Jake's head... :)

The doctor has already started the process of scheduling Jake's angiogram and embolization, and we should be getting a letter in the mail in the next 2 weeks letting us know when that is. He said that he put us on a "first available" basis, but if we can't make it at the time listed, then we can reschedule. Thankfully, I work for wonderful people, who told me not to worry about scheduling, so we'll go at the first available time they give us.

I did a little research online before posting this - hoping to find a resource that would help explain this process a bit more. (Jake's doctor did a wonderful job explaining things to me - he spent 20 minutes on the phone going through everything with me. However, it's hard to remember EVERYTHING that was said, so I turned to the wonderful internet to beef up my knowledge) I found one site, that really does a good job of laying out the whole thing. However, it explains AVM's found on the brain. Jake's is on the outside of his skull (thankfully) so his isn't going to be quite as drastic as they describe on this site (no seizures or headaches). It also explains the embolization therapy as well. Take a look, if you'd like: Like I said, Jake's isn't as severe as what's described here, but it's a good "general knowledge" resource for his AVM.

Please keep praying!