What a day...
Once again, I am exhausted. I will be so glad when I can be rid of this sheer exhaustion and go home and be tired of all of the normal "home" things! LOL
But today Willow had her surgery to internalize her shunt, and all went well with that. It did take a little longer than normal, but I guess they started later than they first thought they would... either way of course Jon and I worry and begin to think things etc... When the surgery was finished, we were told that all went well and that there were no complications. Now to refresh the memory of some, here is a link to explain the shunt (it will also help in the rest of this story): http://nhfonline.org/treatment.php
The part I will be talking about is referencing the parts of a shunt, if you remember she became allergic to the shunt itself, then even after it was removed still had problems with her eosinophil count. At the expense of restless nights, and days of researching and asking everyone the same question! We all learned that shunts are made of two types of materials, silicon and plastic, well since the shunt was removed and she was still having issues it had to be the silicone she was allergic to... In order to not repeat myself much, they changed the tubing and she was getting better! Well, that meant having to put in a shunt that also will not cause an allergic reaction, so the shunt itself is comprised of three parts....
"The shunt has 3 components. The first portion is the called the shunt catheter or proximal portion of the shunt. This is a small narrow tube (catheter), which is implanted into the ventricle of the brain, above where the obstruction has occurred. It is then connected to the valve and reservoir. The valve controls how much fluid is withdrawn from the brain, it is then stored in the reservoir until it is released to drain down the distal (bottom) end. The distal end is a small, narrow piece of tubing (catheter) which leads to the point where the excess CSF will drain and be absorbed by the body." (http://nhfonline.org/treatment.php)
The one in Willow does not, you see she has the catheter placed into the ventricle, and then the reservoir is not there, and the reason is there is not one made that goes through the extra processes it takes to make it a non-allergenic piece. Now one would think that it should not be a big deal, but Dr. Foody said the main point of the reservoir for her is that it would hold fluid so that if they ever have to test it (which they do often for infection and counts etc.) they could pull it from there. But she does not have one, the point of the reservoir is to preserve the catheter as well and not damage the mechanism that is allowing the fluid to flow, so if we ever have to test her (which as I said we will) we will always run risk of causing damage (ie breaking) the shunt and having to have surgery again! If all goes well and she does not become allergic to this shunt and does not develop any pseudo-cysts then we should be good for a bit!
The other news is that they did not put us back in PICU... I am shocked and honestly feeling a bit unnerved about it all. It came as such a surprise that I did not get to say goodbye to my PICU family up there... :( That is very sad for me. And now we also do not know how much longer we will be here, we may actually get out this weekend! Which is shocking, I am almost afraid to think of what life will be like home again! LOL
I want to thank everyone for their generosity, there support in many ways, their well wishes, healing energies, prayers, thoughts, visits oh it could go on. But really we all are so very grateful to know that we have such great friends and I hate to say that it does indeed at times take something horrible to show one who and what friends are, but thank you to each and every one of you.
But today Willow had her surgery to internalize her shunt, and all went well with that. It did take a little longer than normal, but I guess they started later than they first thought they would... either way of course Jon and I worry and begin to think things etc... When the surgery was finished, we were told that all went well and that there were no complications. Now to refresh the memory of some, here is a link to explain the shunt (it will also help in the rest of this story): http://nhfonline.org/treatment.php
The part I will be talking about is referencing the parts of a shunt, if you remember she became allergic to the shunt itself, then even after it was removed still had problems with her eosinophil count. At the expense of restless nights, and days of researching and asking everyone the same question! We all learned that shunts are made of two types of materials, silicon and plastic, well since the shunt was removed and she was still having issues it had to be the silicone she was allergic to... In order to not repeat myself much, they changed the tubing and she was getting better! Well, that meant having to put in a shunt that also will not cause an allergic reaction, so the shunt itself is comprised of three parts....
"The shunt has 3 components. The first portion is the called the shunt catheter or proximal portion of the shunt. This is a small narrow tube (catheter), which is implanted into the ventricle of the brain, above where the obstruction has occurred. It is then connected to the valve and reservoir. The valve controls how much fluid is withdrawn from the brain, it is then stored in the reservoir until it is released to drain down the distal (bottom) end. The distal end is a small, narrow piece of tubing (catheter) which leads to the point where the excess CSF will drain and be absorbed by the body." (http://nhfonline.org/treatment.php)
The one in Willow does not, you see she has the catheter placed into the ventricle, and then the reservoir is not there, and the reason is there is not one made that goes through the extra processes it takes to make it a non-allergenic piece. Now one would think that it should not be a big deal, but Dr. Foody said the main point of the reservoir for her is that it would hold fluid so that if they ever have to test it (which they do often for infection and counts etc.) they could pull it from there. But she does not have one, the point of the reservoir is to preserve the catheter as well and not damage the mechanism that is allowing the fluid to flow, so if we ever have to test her (which as I said we will) we will always run risk of causing damage (ie breaking) the shunt and having to have surgery again! If all goes well and she does not become allergic to this shunt and does not develop any pseudo-cysts then we should be good for a bit!
The other news is that they did not put us back in PICU... I am shocked and honestly feeling a bit unnerved about it all. It came as such a surprise that I did not get to say goodbye to my PICU family up there... :( That is very sad for me. And now we also do not know how much longer we will be here, we may actually get out this weekend! Which is shocking, I am almost afraid to think of what life will be like home again! LOL
I want to thank everyone for their generosity, there support in many ways, their well wishes, healing energies, prayers, thoughts, visits oh it could go on. But really we all are so very grateful to know that we have such great friends and I hate to say that it does indeed at times take something horrible to show one who and what friends are, but thank you to each and every one of you.
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