Yesterday we were able to go be discharged! Little man seemed to turn a corner on Friday night, and finally started to perk up a bit. Since they were able to wean his pain meds (he's only on Ibuprofen) and he was keeping small amounts of food down (and wanting to eat- a great sign!), they decided it'd be best for him to finish recovering at home.
We were so excited as we were all DONE with that place. Pierce couldn't get very much rest because it seemed every 30 min-1hr someone was coming in to take his vitals, look at the incision, give him his meds.
He slept the entire way home. When we got in he was sick, but we think it was probably from the long car ride. Fortunately, after a few hours he was able to eat a bit of food and keep it down. We gave him his Ibuprofen and put him to bed around 7pm, hoping he could catch some winks before waking for pain meds.
Well, Pierce had other plans. Seems he wanted to make up for all the lost sleep. He didn't wake up until 10 am this morning! That's right... no pain meds all night! I am sure that if I had had this surgery, I'd be begging for the morphine.
Today he's been enjoying watching tv and snuggling with us. He seems pretty happy most of the time, just very, very tired. He's only gotten sick once today so we're hoping that tomorrow will bring a complete end to the nausea.
On a different note, we've noticed Pierce has started moving his left arm more than he has ever done before. He's raising it up over his head (he's never done this, even with help) and moving all his fingers. It's too early to say, but we're hoping this surgery is going to provide big results in Pierce's motor skills.
Thank you all for the continued prayers, notes of encouragements and calls/texts. It's been such a blessing to know we weren't alone on this journey. The last week has been so emotionally exhausting, especially the night of the surgery when we thought something had gone horribly wrong. We are so thankful for your prayers. And we are thankful that God brought Pierce through the surgery and are trusting in Him to help him make a complete recovery.
We will continue to recover at home until May 7th when we'll travel back to Duke to have Pierce's stitches removed and to go for another MRI scan to see how his fourth ventricle is shrinking.
Here's how you can pray:
1. Continue to pray against infection. Because Pierce already had a shunt, that increases his risk of infection from the surgery. We will continue to watch him closely for the next few months to make sure nothing comes up.
2. Pray that his fourth ventricle would decrease in size and that his brain stem and cerebellum would return to normal positions.
3. Pray for an end to the nausea and vomitting.
4. For miraculous results! We're hoping that this surgery will help Pierce take great strides in his motor skills.
4.28.2013
4.25.2013
Post op Day 2- pt 2
Today has gone better for Pierce pain-wise. They've been able to wean him off the high powered pain meds and he is now much happier on just Tylenol and Ibuprofen. We're hoping this reduces some of his nausea as well.
We hope we're rounding a corner, and we've definitely crossed some big hurdles today. For those who didn't see it on the news feed: Pierce's MRI looked positive. While the fourth ventricle is still enlarged (that is to be expected since the cyst has grown inside for some time), the lateral ventricles (drained by his shunt) went down from Tuesday's post-op CT. There had been some concern that his VP shunt was clogged by an air pocket or by blood from the surgery, but today's scan removed that concern and proved that it's working well!
Speaking of the scan, let me just brag on our boy for a minute. They were supposed to sedate him for the MRI, but the anesthesiologist couldn't fit him in. So, we tried it without sedation. No one expected he'd sit still long enough to get a clear picture, but wouldn't you know he went in wide awake and followed our instructions to lay still until the very end. I'm sure he was in a great deal of pain as he had been moved around a lot and had to lay on the hard board for the MRI. I was so proud of him. His neurosurgeon called to see how they fit him in with the anesthesiologist and was shocked when they said he was awake the whole time! It was such an answer to prayer.
Our biggest goal at this point is to help him move past the nausea and vomiting. I can't even begin to imagine how hard it must be to vomit when your neck muscles have been cut (he has a 6 in incision starting at the base of his skull and going all the way down his neck) and a large portion of the back of your skull has been removed/replaced. Ouch! But in true hero fashion, our boy is taking it in strides. While he's in a great deal of pain, he doesn't seem to cry much. Occasionally I catch a whimper, but he's cried very little throughout this whole process. And after he's done and able to lay down, he starts cracking smiles and chattering away.
I can't even begin to describe how exhausting and difficult the past few days have been. It's been such a reminder of those early days where we thought we were going to lose Pierce (hello PTSD!). You feel like you're on auto-pilot. But there is such a peace that abides in times like these. Such a supernatural peace.
Yesterday we watched as a family said goodbye to their 9-year old son who was hit by a car on Sunday. It was excruciating to witness the family coming in and out of his room and to hear the cries from them.
This world is so broken. So, so broken. And so this week, I've found myself basking in the joy that we have hope beyond this fallen world. Hope in a Risen Savior who loves us. Who is coming to rescue those who love Him from this pain and sorrow.
And as I watch Pierce struggle through such intense pain... I am reminded of the character that is being built in both he and I (and Nik, too). I LONG for the day when Pierce will no longer suffer anymore. And while I know that pretty soon he'll be back to his healthy self, I also know that as long as he's alive, he'll always have some form of suffering. We all do. Every day. May we always rest in the grace of Jesus which will sustain us until He comes to remove all our suffering. And may we suffer well, trusting in our loving Father who never leaves or forsakes us.
Here's how you can be praying for us during this time:
1. For the nausea to subside and for Pierce to begin eating normally again. He wants to eat, but knows it will make him sick so he is hesitant to. Please pray he's able to keep food down soon.
2. For the pain to subside. Pray that the lower powered pain meds are able to control his pain.
3. For protection against infection during this recovery period. The risk of infection is higher during the first 10 days, so please pray that during this time, Pierce will not develop an infection.
4. Pray that his brain would heal, that his cerebellum (which was severely squished by the cyst) will begin to fill in where the cyst once was, and for his brain stem to return to a more normal position. You can also be praying that Pierce's body would naturally absorb all of the extra fluid that was released from the cyst. They neuro team will be scanning him frequently and it will be a few months before we know for sure that the surgery was a success. Please pray that it was!
5. For wisdom on when to return back to Charlotte. At this point, we're unsure of when we'll be discharged, but we're also a little unsure of how soon we should return home.
We hope we're rounding a corner, and we've definitely crossed some big hurdles today. For those who didn't see it on the news feed: Pierce's MRI looked positive. While the fourth ventricle is still enlarged (that is to be expected since the cyst has grown inside for some time), the lateral ventricles (drained by his shunt) went down from Tuesday's post-op CT. There had been some concern that his VP shunt was clogged by an air pocket or by blood from the surgery, but today's scan removed that concern and proved that it's working well!
Speaking of the scan, let me just brag on our boy for a minute. They were supposed to sedate him for the MRI, but the anesthesiologist couldn't fit him in. So, we tried it without sedation. No one expected he'd sit still long enough to get a clear picture, but wouldn't you know he went in wide awake and followed our instructions to lay still until the very end. I'm sure he was in a great deal of pain as he had been moved around a lot and had to lay on the hard board for the MRI. I was so proud of him. His neurosurgeon called to see how they fit him in with the anesthesiologist and was shocked when they said he was awake the whole time! It was such an answer to prayer.
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| Being brave and all smiles after the MRI |
Our biggest goal at this point is to help him move past the nausea and vomiting. I can't even begin to imagine how hard it must be to vomit when your neck muscles have been cut (he has a 6 in incision starting at the base of his skull and going all the way down his neck) and a large portion of the back of your skull has been removed/replaced. Ouch! But in true hero fashion, our boy is taking it in strides. While he's in a great deal of pain, he doesn't seem to cry much. Occasionally I catch a whimper, but he's cried very little throughout this whole process. And after he's done and able to lay down, he starts cracking smiles and chattering away.
I can't even begin to describe how exhausting and difficult the past few days have been. It's been such a reminder of those early days where we thought we were going to lose Pierce (hello PTSD!). You feel like you're on auto-pilot. But there is such a peace that abides in times like these. Such a supernatural peace.
Yesterday we watched as a family said goodbye to their 9-year old son who was hit by a car on Sunday. It was excruciating to witness the family coming in and out of his room and to hear the cries from them.
This world is so broken. So, so broken. And so this week, I've found myself basking in the joy that we have hope beyond this fallen world. Hope in a Risen Savior who loves us. Who is coming to rescue those who love Him from this pain and sorrow.
And as I watch Pierce struggle through such intense pain... I am reminded of the character that is being built in both he and I (and Nik, too). I LONG for the day when Pierce will no longer suffer anymore. And while I know that pretty soon he'll be back to his healthy self, I also know that as long as he's alive, he'll always have some form of suffering. We all do. Every day. May we always rest in the grace of Jesus which will sustain us until He comes to remove all our suffering. And may we suffer well, trusting in our loving Father who never leaves or forsakes us.
Here's how you can be praying for us during this time:
1. For the nausea to subside and for Pierce to begin eating normally again. He wants to eat, but knows it will make him sick so he is hesitant to. Please pray he's able to keep food down soon.
2. For the pain to subside. Pray that the lower powered pain meds are able to control his pain.
3. For protection against infection during this recovery period. The risk of infection is higher during the first 10 days, so please pray that during this time, Pierce will not develop an infection.
4. Pray that his brain would heal, that his cerebellum (which was severely squished by the cyst) will begin to fill in where the cyst once was, and for his brain stem to return to a more normal position. You can also be praying that Pierce's body would naturally absorb all of the extra fluid that was released from the cyst. They neuro team will be scanning him frequently and it will be a few months before we know for sure that the surgery was a success. Please pray that it was!
5. For wisdom on when to return back to Charlotte. At this point, we're unsure of when we'll be discharged, but we're also a little unsure of how soon we should return home.
Post Op Day 2
Pierce seemed to do better last night both with the pain and the nausea. He moved to a regular room around 5pm and seemed to even cheer up, just a tad. He's still having bouts of pain and nausea. This morning I was able to get him to eat a few bites of Jello and drink some gatorade- so far he's held down both.
The neurosurgery team just rounded and they'd like to get a sedated MRI on Pierce today to get a clear, detailed picture to check on the fourth ventricle (where they operated) and also to see how his VP shunt is working. Please pray that this MRI will show encouraging, positive results and that all will be working like it should. Also pray that they will not need to place Pierce back on the ventilator for the scan. (They don't think they'll need to, but please pray we avoid this.)
We will update later.
The neurosurgery team just rounded and they'd like to get a sedated MRI on Pierce today to get a clear, detailed picture to check on the fourth ventricle (where they operated) and also to see how his VP shunt is working. Please pray that this MRI will show encouraging, positive results and that all will be working like it should. Also pray that they will not need to place Pierce back on the ventilator for the scan. (They don't think they'll need to, but please pray we avoid this.)
We will update later.
4.24.2013
Post op morning
Hi friends. While I don't have time to update all of the details from yesterday (blog to come), I did want to mention a few updates and specifics on how you can pray:
1. Pray for comfort. Pierce is in a great deal of pain and is very nauseous. We were told that around the 4th ventricle lies the body's center for nausea, which means when you mess with it, you often times have a patient who is extremely nauseous and vomitting. As you can imagine, this has created quite a cycle for P- pain, vomitting, more pain and now his lungs and esophagus are feeling affected from all of the irritation so he's coughing and hoarse which leads to even more pain. He's doing well from a stability standpoint- still in the ICU, still on a bit of o2.
2. They have him on the EEG to monitor for seizures. So far, he has not had one, but they have decided to keep it on for awhile. Please pray he does not have any seizure activity.
3. Pray against infection- both in his brain and lungs
4. Pray for rest. Pierce has not gotten much rest due to all the poking and prodding. Pray today brings rest and healing.
Thank you all for praying for us. Yesterday when everything was happening so quickly, we felt surrounded by love and prayer from all the messages sent. Thank you!
1. Pray for comfort. Pierce is in a great deal of pain and is very nauseous. We were told that around the 4th ventricle lies the body's center for nausea, which means when you mess with it, you often times have a patient who is extremely nauseous and vomitting. As you can imagine, this has created quite a cycle for P- pain, vomitting, more pain and now his lungs and esophagus are feeling affected from all of the irritation so he's coughing and hoarse which leads to even more pain. He's doing well from a stability standpoint- still in the ICU, still on a bit of o2.
2. They have him on the EEG to monitor for seizures. So far, he has not had one, but they have decided to keep it on for awhile. Please pray he does not have any seizure activity.
3. Pray against infection- both in his brain and lungs
4. Pray for rest. Pierce has not gotten much rest due to all the poking and prodding. Pray today brings rest and healing.
Thank you all for praying for us. Yesterday when everything was happening so quickly, we felt surrounded by love and prayer from all the messages sent. Thank you!
4.21.2013
Surgery on Tuesday
Pierce's big surgery is scheduled for 8 am on Tuesday morning.
On Friday, we went in for pre-op and were able to meet the surgeon (Pierce's primary surgeon is on maternity leave and so his case got passed to the chief of neurosurgery). The appointment went so well and we have total confidence that Pierce is in great hands.
We did learn even more about the procedure, which I'll admit, was hard to listen to. It is called an open craniotomy cyst fenestration. This means they'll make a large incision in the back of his head/neck area, remove a part of Pierce's skull, which will give them direct access to the cyst. They will then open up the cyst by making a large hole in it to allow it to drain. Then they will replace his skull and close him up. If all goes well, the surgery will take about 2-3 hours. Pierce will be heavily sedated for a bit afterwards to allow his body to heal and to hopefully avoid him being in pain. He'll be taken to the ICU for at least 24 hours and then, depending on how he wakes up, he'll move to a regular hospital room for a few more days before discharge.
Here's how you can pray specifically for us on Tuesday:
1. Pray for the surgery to go smoothly with no unexpected bleeding or other complications.
2. Pray for Pierce to wake up easily from the anesthesia (a lot of former preemies have trouble with this one).
3. Pray that Pierce would not be in as much pain as expected.
4. Pray against infection. Because this is an open craniotomy, there is a greater chance for infection. Please pray that Pierce would not develop an infection. Also pray that his current shunt (which they will not be doing anything with during this surgery) will continue to function properly.
5. Finally, pray that this works! There is a chance, though small, that the cyst could return. Pray that this will not happen.
We will keep everyone updated on the blog. To keep it easy, we've added a tweet bar to the right. We'll post short updates from the hospital there. Thank you for praying for our boy!
Nik, Lindsay and Pierce
On Friday, we went in for pre-op and were able to meet the surgeon (Pierce's primary surgeon is on maternity leave and so his case got passed to the chief of neurosurgery). The appointment went so well and we have total confidence that Pierce is in great hands.
We did learn even more about the procedure, which I'll admit, was hard to listen to. It is called an open craniotomy cyst fenestration. This means they'll make a large incision in the back of his head/neck area, remove a part of Pierce's skull, which will give them direct access to the cyst. They will then open up the cyst by making a large hole in it to allow it to drain. Then they will replace his skull and close him up. If all goes well, the surgery will take about 2-3 hours. Pierce will be heavily sedated for a bit afterwards to allow his body to heal and to hopefully avoid him being in pain. He'll be taken to the ICU for at least 24 hours and then, depending on how he wakes up, he'll move to a regular hospital room for a few more days before discharge.
Here's how you can pray specifically for us on Tuesday:
1. Pray for the surgery to go smoothly with no unexpected bleeding or other complications.
2. Pray for Pierce to wake up easily from the anesthesia (a lot of former preemies have trouble with this one).
3. Pray that Pierce would not be in as much pain as expected.
4. Pray against infection. Because this is an open craniotomy, there is a greater chance for infection. Please pray that Pierce would not develop an infection. Also pray that his current shunt (which they will not be doing anything with during this surgery) will continue to function properly.
5. Finally, pray that this works! There is a chance, though small, that the cyst could return. Pray that this will not happen.
We will keep everyone updated on the blog. To keep it easy, we've added a tweet bar to the right. We'll post short updates from the hospital there. Thank you for praying for our boy!
Nik, Lindsay and Pierce
4.15.2013
2nd Birthday!
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| Swinging on his 2nd birthday! |
On Friday, our little man turned 2! It's so hard to believe that it's been two years since he was born. Honestly, the thought of how far God has brought him is just so overwhelming. I can't even begin to describe it. From 1 lb 8oz to 24 lbs. It makes my heart swell.
His second birthday brought up bittersweet memories, though more faded in my mind than the previous birthday. Parents of preemies often have a hard time reconciling both the worst and best day of their lives. It's such a weird dichotomy- fear, trauma and devastation in one hand and love, joy and gratitude in the other.
But I couldn't help but think how far Pierce has come. How many hurdles he's jumped. And by God's grace, how many odds he's conquered. I think back on the times when we celebrated each 24 hour increment, because with each hour that passed, Pierce's odds for survival increased. Now, two years later, we're so far from that point. It's truly miraculous. No oxygen. No tubes. No regular medications (yes, none!).
We weren't able to do a whole lot to celebrate (yet... party to come this summer!) because Pierce is still in isolation due to his upcoming surgery, but we didn't let that stop us from having a blast! We celebrated by eating lots of cake, swinging outside and watching his all time favorite movie. There were lots and lots of snuggles. Lots of kisses. And lots of joy.
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| Proof that you can still have fun, even in isolation! |
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| Special thanks to Amanda McQuade Photography (amandamcquadephotography.com) for capturing gems like this! |
Pierce's brain surgery is scheduled for Tuesday, April 23rd. We ask that you join us in praying for a speedy and painfree recovery and a quick hospital stay. The surgery will be more invasive than traditional shunt surgery and will require Pierce to be in the intensive care for at least 24 hours afterwards. We've been warned that he will likely be in a great deal of pain afterwards as they'll have to remove a small portion of his skull. Please pray that this is not the case. And finally, please, please join us in praying that this alleviates the swelling in his fourth ventricle and that afterwards, Pierce will make great strides (specifically with his gross motor skills) and that he will never need another surgery.
We will update before, during and after surgery on our blog.
Thanks for your continued prayers!
Lindsay
4.03.2013
Surgery, colds and an upcoming birthday
Quick update friends:
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.
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!
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.
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| 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!
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