I'll spare you the details, but after some back and forth, we've decided on a surgical route for Pierce. We will just be doing the cyst fenestration in a few weeks. What this means is that we've opted to not place a 4th ventricular shunt catheter (sparing Pierce a complicated shunt system) and to go with the more aggressive and invasive surgery. After reviewing his scans, several surgeons have determined that now would not be a good time to attempt removing Pierce's current shunt by doing the ETV. The reason is that because of the cyst, Pierce's brain stem has been pushed too close to the area that they would need to drill for the ETV. This significantly increases the chance that the surgeons could hit an area of his brain that could cause damage. So we've determined, with the help of our surgeons, that a much safer approach would be to just treat the cyst, leave his current shunt alone and then attempt the ETV when his current shunt fails (statistically this is likely to happen in the next few years). While we are bummed that we are not yet ready to say goodbye to the shunt, but we are thankful that we have the option to avoid placing another shunt. So, so thankful.
The surgery will be rather invasive as the surgeons will have enter through the back of Pierce's neck. We've been told this will require a longer hospital stay (likely a week with the first 24+ hrs in the ICU) than a regular shunt placement. We've also been warned that this will likely be a painful recovery, but we are hopeful that this will spare Pierce multiple future surgeries.
Before Sunday, this surgery was scheduled to take place on April 10th. BUT on Sunday our little guy woke up with a nasty cold. I think that was his way of saying he didn't want surgery as a birthday present :) The cold, of course, took priority and he is now on a steroid cocktail to try and clear it up and to give his lungs a little boost in fighting this thing.
Because we will have to wait until Pierce is symptom free for at least 10-14 days before anesthesia will clear him for surgery, we won't know an official surgery date for another week or so.
The good news is that so far, Pierce seems to be handling his first chest cold pretty well! Much better than we expected.
Pierce taking his steroid nebulizer treatments like a champ! |
Thank you all for continuing to pray for us. Many of you have asked when we will be able to come out of isolation and the answer is that we will be out as soon as Pierce is recovered from this surgery! We are looking forward to having this all behind us and are hoping for a fun summer filled with lots of memories.
Speaking of memories... we are so excited to celebrate Pierce's 2nd Birthday! I can't believe that he is going to be TWO (or as he says... "t--oe!"). We won't be able to celebrate publicly yet... but are hoping to have a big shindig as soon as he's recovered. But rest assured, there will be loads of pictures.
Thank you for your continued prayers for Pierce. We treasure them and are so humbled by how many love our boy. We will update as soon as we have a surgery date!
We think about Pierce and Pray for him Daily! This lil boy has no obstacle he can't hurdle and he's a huge source of our motivation :)
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