This may give you vague idea of why we took Annabelle in last Friday to get her checked out (click to enlarge).
It was going to be a logistical challenge today.
First off, it was a "run" day and I really didn't want to make today the first day that I skipped a run. Then we needed to get to the hospital by 7:45am or so to make sure we got in and out of the club foot clinic pronto. Then get to the neurosurgeon by 9:30 and then get me to the office ASAP after that.
I got up at 3am, was running by 3:30 and back by 4:45. We all went through our normal routines and were out the door just before 7am. I dropped the wife and child off at the CF clinic and then drove the two blocks to the neurologist's parking lot so we would not have to unload-load-unload-load and pay two parking fees on top of it all. I walked to the clinic and caught up with the girls just as they were being ushered in at 7:45am.
The doc came in, gave Annabelle the once over and pronounced no new casts until after surgery on March 24th - provided her little feet don't start regressing to their starting points . . .
Since there were no casts to take off or put on, we sat and had a nice chat with the doctor about "what-ifs" and "whadd-ya thinks". The great thing about doctor Wallace is he reserves his absolutes for the past tense; "What happened is . . . " the future tense with him is always possibilities leaving room for miracles . . . .
We made our next Club Foot appointment for February 17th - one whole month away. It was sort of weird to pass by the nurse in the hall and tell her we would not be back for a whole month - this after 10 straight weeks of visits (I think). There was that weird urge-to-hug moment and then we all realized this was a professional situation and we wished each other well. Nice folks - I won't miss going back there every week though . . .
We were out of the CF clinic just before 9am and made the two-block "hike" to the neurologist's office. I was hoping to get in early but the doctor was in surgery and didn't get there until our scheduled time of 9:30am. Come to find out that the office that performed the Cat Scan on Annie last Friday is not on the same network as the neurologist's office and they could not pull up the scans . . .
I offered to walk three buildings down, pick up the scans and bring them back - they took me up on the offer . . . soooo, I heel-toed it to the imaging center where the receptionist recognized Annabelle's name and gushed about how cute she was . . . "Oh, and here are the x-rays and Cat Scan . . ."
Back to the neurologist . . . .
Now-a-days it seems like the thing for docs to have is a big ol' jumbo tron for a computer monitor. I mean BIG - almost 6 feet wide.
The doc slapped the disks in and the images filled the left wall of his office.
I actually got the doc to give me the image disks once he had uploaded them to his computer so here are a few of interest:
This is one of the xrays from Friday. You can see the shunt catheter in the upper-right of the image which then attaches to the reservoir behind Annie's ear. The distal catheter then travels under the skin . . .
Past the rib cage . . .
And into the abdomen where they leave plenty of extra to accommodate Annabelle's growth over the next 3-5 years . . .
As we viewed the images, the doc gave us the rundown and we followed up with questions . . . here is what we found out . . .
The pressure / fluid situation is not nearly as "bad" today as it was the day Annabelle was born. We are in better shape today, even with a shunt malfunction than were were 5 months ago . . . .
The shunt revision requires an incision that is so small they don't even use stitches to close it up. The doc actually said they glue it shut! So that was a relief. The whole thing is pretty straight-forward, small cut, pull the old tube out, put the new tube in and connect it to the reservoir.
It should only require a one night stay and at least one parent is welcome to sleep in the room with her.
In fact, the surgery was is so minor (yeah - minor brain surgery), that we can continue with therapy appointments the next week . . .
The more interesting thing is that he felt Annabelle was a candidate for a "Third Ventriculostomy".
Now, keep in mind, I am no brain surgeon . . . but here is what I understand in layman's terms.
You have more than one set of ventricles producing cerebral-spinal fluid in your brain. There are the two big ones (we have talked about before) but then those two drain into successively smaller ventricles . . . sometimes the canal between the large ventricles and the smaller ventricles gets blocked - which leads to fluid build up that needs to be drained with a shunt.
This is a Cat Scan image. The white line on the lower-right is the shunt catheter entering the left ventricle. Notice that the left ventricle where the catheter enters is much larger than the right (I know, the right and left are backwards in this picture). This is somewhat unusual for a couple of reasons: 1) The ventricles should have an even pressure and size. 2) If they were uneven, you would expect the one with the catheter to be the smaller of the two.
Here is another Cat Scan image showing the disparity between the two ventricles (the white line should be going straight down the middle . . .
There are pros and cons to the 3-V procedure (mostly related to age) but after weighing it all out, (especially since we have one of the best pediatric neurosurgeons in the country at one of the best pediatric hospitals) I really think it is the way to go.
At 3 months of age, Annabelle's head was at the bottom end of typical in terms of size. She was only 5 1/2 pounds when she was born so she has always been a little small and this was no big worry.
By 5 months, Annie had jumped from the "bottom of her class" to almost the top. The circumference of her head still falls within the typical range but a jump that far that fast indicates that it is not just normal development causing it.
So there's that.
It was going to be a logistical challenge today.
First off, it was a "run" day and I really didn't want to make today the first day that I skipped a run. Then we needed to get to the hospital by 7:45am or so to make sure we got in and out of the club foot clinic pronto. Then get to the neurosurgeon by 9:30 and then get me to the office ASAP after that.
I got up at 3am, was running by 3:30 and back by 4:45. We all went through our normal routines and were out the door just before 7am. I dropped the wife and child off at the CF clinic and then drove the two blocks to the neurologist's parking lot so we would not have to unload-load-unload-load and pay two parking fees on top of it all. I walked to the clinic and caught up with the girls just as they were being ushered in at 7:45am.
The doc came in, gave Annabelle the once over and pronounced no new casts until after surgery on March 24th - provided her little feet don't start regressing to their starting points . . .
Since there were no casts to take off or put on, we sat and had a nice chat with the doctor about "what-ifs" and "whadd-ya thinks". The great thing about doctor Wallace is he reserves his absolutes for the past tense; "What happened is . . . " the future tense with him is always possibilities leaving room for miracles . . . .
We made our next Club Foot appointment for February 17th - one whole month away. It was sort of weird to pass by the nurse in the hall and tell her we would not be back for a whole month - this after 10 straight weeks of visits (I think). There was that weird urge-to-hug moment and then we all realized this was a professional situation and we wished each other well. Nice folks - I won't miss going back there every week though . . .
We were out of the CF clinic just before 9am and made the two-block "hike" to the neurologist's office. I was hoping to get in early but the doctor was in surgery and didn't get there until our scheduled time of 9:30am. Come to find out that the office that performed the Cat Scan on Annie last Friday is not on the same network as the neurologist's office and they could not pull up the scans . . .
I offered to walk three buildings down, pick up the scans and bring them back - they took me up on the offer . . . soooo, I heel-toed it to the imaging center where the receptionist recognized Annabelle's name and gushed about how cute she was . . . "Oh, and here are the x-rays and Cat Scan . . ."
Back to the neurologist . . . .
Now-a-days it seems like the thing for docs to have is a big ol' jumbo tron for a computer monitor. I mean BIG - almost 6 feet wide.
The doc slapped the disks in and the images filled the left wall of his office.
I actually got the doc to give me the image disks once he had uploaded them to his computer so here are a few of interest:
This is one of the xrays from Friday. You can see the shunt catheter in the upper-right of the image which then attaches to the reservoir behind Annie's ear. The distal catheter then travels under the skin . . .
Past the rib cage . . .
And into the abdomen where they leave plenty of extra to accommodate Annabelle's growth over the next 3-5 years . . .As we viewed the images, the doc gave us the rundown and we followed up with questions . . . here is what we found out . . .
The pressure / fluid situation is not nearly as "bad" today as it was the day Annabelle was born. We are in better shape today, even with a shunt malfunction than were were 5 months ago . . . .
The shunt revision requires an incision that is so small they don't even use stitches to close it up. The doc actually said they glue it shut! So that was a relief. The whole thing is pretty straight-forward, small cut, pull the old tube out, put the new tube in and connect it to the reservoir.
It should only require a one night stay and at least one parent is welcome to sleep in the room with her.
In fact, the surgery was is so minor (yeah - minor brain surgery), that we can continue with therapy appointments the next week . . .
The more interesting thing is that he felt Annabelle was a candidate for a "Third Ventriculostomy".
Now, keep in mind, I am no brain surgeon . . . but here is what I understand in layman's terms.
You have more than one set of ventricles producing cerebral-spinal fluid in your brain. There are the two big ones (we have talked about before) but then those two drain into successively smaller ventricles . . . sometimes the canal between the large ventricles and the smaller ventricles gets blocked - which leads to fluid build up that needs to be drained with a shunt.
This is a Cat Scan image. The white line on the lower-right is the shunt catheter entering the left ventricle. Notice that the left ventricle where the catheter enters is much larger than the right (I know, the right and left are backwards in this picture). This is somewhat unusual for a couple of reasons: 1) The ventricles should have an even pressure and size. 2) If they were uneven, you would expect the one with the catheter to be the smaller of the two.
Here is another Cat Scan image showing the disparity between the two ventricles (the white line should be going straight down the middle . . .In a Third Ventriculostomy, the doctor makes a small hole in the top of the skull and uses tiny instruments to go down through the large ventricles into the third ventricles and then actually punctures the "floor" of the 3rd ventricle to allow the fluid to flow freely into other spaces within the skull and be absorbed naturally . . .
When the procedure is successful . . . . . . wait for it . . . . . .
SHUNTS ARE NO LONGER NECESSARY
It is a relatively low-risk procedure with a big payoff if successful. The doc warned us that the success rate is only about 22% but after looking at the images together, we all agreed that it was worth a shot.
When the procedure is successful . . . . . . wait for it . . . . . .
SHUNTS ARE NO LONGER NECESSARY
It is a relatively low-risk procedure with a big payoff if successful. The doc warned us that the success rate is only about 22% but after looking at the images together, we all agreed that it was worth a shot.
One of the things that really struck me is that I have been praying all along that one day Annabelle would not need a shunt. I knew nothing of this 3-V procedure and had no "real-world" reason to believe that the need for a shunt is reversible. And yet, here was the doctor saying that what I had assumed was impossible was actually possible . . .
Here are four websites regarding the procedure that I found helpful (was going to make them into fancy little hyperlinks but, believe me, that won't make them any easier to understand . . .)
http://www.upstate.edu/practice/neurosurgery/education/med_students/3v/
Here are four websites regarding the procedure that I found helpful (was going to make them into fancy little hyperlinks but, believe me, that won't make them any easier to understand . . .)
http://www.upstate.edu/practice/neurosurgery/education/med_students/3v/
http://www.hydroassoc.org/docs/FactSheet_Third_Ventricular_Endoscopy.pdf
http://www.medscape.com/viewarticle/520953_3
http://www.medscape.com/viewarticle/520953_3
There are pros and cons to the 3-V procedure (mostly related to age) but after weighing it all out, (especially since we have one of the best pediatric neurosurgeons in the country at one of the best pediatric hospitals) I really think it is the way to go.
So that is the news. No casts for two months. No CF Clinic for a month. Shunt revision less involved than we thought. Possibility that we could eventually be shunt-free if the new procedure works.
All in all, a pretty good day all things considered, I thought.
The doc is working on scheduling the surgery sometime this week and we will keep everyone posted.
Some items to pray for this week:
1) Peace of mind for mom and dad (especially mom)
2) That the shunt revision goes smoothly
3) That the "3-V" procedure is successful leading to the eventual removal of the shunt
Thank you for your prayers and support. It really means so much to us.
3 comments:
she is so gorgeous and such a little fighter. you are in my thoughts and prayers. stay strong!
Go Annabelle! She continues to surge ahead like a mighty warrior leaving medical waste in her past. Way to go sister.
I showed the x-ray images to the boys this morning to explain Annie's surgery to them. When we scrolled to the bottom of the post the boys both "awww-ed" at her picture. Then Jordan said, in the sweetest most sincere tone, "Leave on this picture. I love her."
Post a Comment