Maxy Moose Update - 2 days Post Op
I am overwhelmed by all of the comments and messages we have received full of prayers and well wishes for our little man over the past few days. It warms my heart. I always say that my kids could never fathom how much I love them - but it's so true of so many other people as well. These 3 kiddos are so loved by everyone around them it's incredible.
I am also overwhelmed by the interest in my last post. I know that when we got the call that there indeed was something wrong, my world came crashing down. My first gut reaction was to think the worst. That he wasn't going to be OK, that he wouldn't have the same quality of life his brother and sister would have, that God forbid he would be paralyzed after the procedure. If we can help even one family going through what we have it's worth my time and effort. I know we heard the words "spina bifida" for the first time over the phone which in my opinion was absolutely the wrong way for our pediatrician to handle things because we were honestly terrified and thought the worst after hearing those words.
Most cases like Max's where babies have indicators of spinal problems such as a lower back skin tag, sacral dimple or hairy patch on their lower back turn out to be nothing. I actually have a few girlfriends whose babies were in the same situation, went through the ultrasound and even as far as the MRI and turns out there was nothing wrong with their sweet babes. Maxy moose just drew the short end of the tethered cord stick. But I would have loved to talk to some families who had been through the tethered cord release procedure and had someone to bounce ideas, fears and concerns off of. So as always - we are an open book and would love to share our experience with anyone.
So we are right about 48 hours post op and I am happy to report Max is doing so well. He started showing signs last night - about 24 hours after surgery - that he was in a little bit of pain and discomfort as they weaned him from the stronger IV tylenol and ibuprofen and switched to oral and suppository forms of the medications. Because of a late nap he went 5 hours without pain meds and it showed so while he's amazingly resilient and a super perfect patient we could tell he was agitated and uncomfortable so after a dose of pain meds he was back on track.
His IV was in his foot and he kicked it out this morning but the doc OK'd the nurses to leave it out as his antibiotics courses were all done. This is where I encourage parents to trust their instincts and advocate for their kiddos. I was checking his IV as they have asked us to do and noticed something looked off and sure enough it was messed up. I was also checking his incision and his dermabond glue is starting to peel so we had the nurse practitioner come in and have a look and all is well.
Since we've been in the hospital he started saying "Dada" - not that he knows what he is saying but he says it constantly and it's adorable. He's the talk of the floor and all the nurses love him. He loves wagon rides around the unit - he would stay there all day if we let him! We've heard lots of Gladiator references because of his name and they all think his chunk is absolutely adorable. He has them all won over and flirts with all the ladies. He had a sponge bath tonight and hated it but a quick lap around the unit took care of that and he was a happy boy again.
He's down for the night. He is on the every 4 hours vitals rotation and one of our favorite nurses is on his service tonight so we are hoping for a nice and restful night for him. To close I wanted to answer a few of the questions that some people have asked that I forgot to address in the last post:
1. Is this it for him? Meaning we had this surgery and this is it. He's healed and he's fine and we can say sayonara to his neurosurgeon and wish her well?
The answer to this is no. For now, post op, he will be monitored closely. Every 3 months he will have work up to assess his bowel and bladder functioning as well as follow ups with his orthopedic surgeon. Max will always have a neurosurgeon and will always be followed closely - especially in his growing years. Why is this? That leads me to #2...
2. Is there a possibility there are more surgeries in his future?
The answer to that question is yes. The neurosurgeon specifically referred to this week at "this first surgery" which wasn't comforting - but we appreciated - because it's the reality of the situation. Sometimes the cords will retether no matter how perfectly the cord release went the first time and it's just the reality of his condition. When he was first diagnosed I would read stories online of kiddos who had 7,8,9 surgeries by the time they were teenagers. Of course this made me sad but I took solace in the fact one little girl in particular lived a totally normal life - she was a dancer and a gymnast and wasn't held back at all by her condition. While we hope it's one and done for Max and future surgeries when he's older and more mobile would be infinitely harder - we now know that we - and more importantly he - is stronger than we ever imagined.
3. Why does he need to be flat on his back?
This is a scary one. When they went in to release his tethered cord they had to puncture his spinal column. When Dr. Bowman closed him up she of course closed his spinal column but we need to ensure as little pressure as possible on the base of his spinal cord to ensure that he doesn't leak spinal fluid. He will be completely flat for the 5 days we are here to mitigate this risk and then we go home he will get to be "up" which means head above butt in whichever position he wants - for 20-30 minutes a few times a day until his follow up November 1st when he will be released to resume normalcy.
4. Was it laparoscopic or does he have an incision? Is it big?
I wondered the same thing until his surgeon came in pre op and I asked her. He does have an incision that's about an inch or inch and a half and it really looks amazing for what he went through. He also has little teeny scabs all over his legs where they inserted electrodes to be sure that when they clipped the cord they weren't clipping any live nerves or anything that would affect his motor function. Here's a quick pic of his back and incision I snapped during a dipey change:
So I think that we've answered most of the questions that I maybe forgot the first time around but if there's anything else I may have missed feel free to ask away! I'll leave you with a few of my favorite pics from the last few days
XOXO
K
I am also overwhelmed by the interest in my last post. I know that when we got the call that there indeed was something wrong, my world came crashing down. My first gut reaction was to think the worst. That he wasn't going to be OK, that he wouldn't have the same quality of life his brother and sister would have, that God forbid he would be paralyzed after the procedure. If we can help even one family going through what we have it's worth my time and effort. I know we heard the words "spina bifida" for the first time over the phone which in my opinion was absolutely the wrong way for our pediatrician to handle things because we were honestly terrified and thought the worst after hearing those words.
Most cases like Max's where babies have indicators of spinal problems such as a lower back skin tag, sacral dimple or hairy patch on their lower back turn out to be nothing. I actually have a few girlfriends whose babies were in the same situation, went through the ultrasound and even as far as the MRI and turns out there was nothing wrong with their sweet babes. Maxy moose just drew the short end of the tethered cord stick. But I would have loved to talk to some families who had been through the tethered cord release procedure and had someone to bounce ideas, fears and concerns off of. So as always - we are an open book and would love to share our experience with anyone.
So we are right about 48 hours post op and I am happy to report Max is doing so well. He started showing signs last night - about 24 hours after surgery - that he was in a little bit of pain and discomfort as they weaned him from the stronger IV tylenol and ibuprofen and switched to oral and suppository forms of the medications. Because of a late nap he went 5 hours without pain meds and it showed so while he's amazingly resilient and a super perfect patient we could tell he was agitated and uncomfortable so after a dose of pain meds he was back on track.
His IV was in his foot and he kicked it out this morning but the doc OK'd the nurses to leave it out as his antibiotics courses were all done. This is where I encourage parents to trust their instincts and advocate for their kiddos. I was checking his IV as they have asked us to do and noticed something looked off and sure enough it was messed up. I was also checking his incision and his dermabond glue is starting to peel so we had the nurse practitioner come in and have a look and all is well.
Since we've been in the hospital he started saying "Dada" - not that he knows what he is saying but he says it constantly and it's adorable. He's the talk of the floor and all the nurses love him. He loves wagon rides around the unit - he would stay there all day if we let him! We've heard lots of Gladiator references because of his name and they all think his chunk is absolutely adorable. He has them all won over and flirts with all the ladies. He had a sponge bath tonight and hated it but a quick lap around the unit took care of that and he was a happy boy again.
He's down for the night. He is on the every 4 hours vitals rotation and one of our favorite nurses is on his service tonight so we are hoping for a nice and restful night for him. To close I wanted to answer a few of the questions that some people have asked that I forgot to address in the last post:
1. Is this it for him? Meaning we had this surgery and this is it. He's healed and he's fine and we can say sayonara to his neurosurgeon and wish her well?
The answer to this is no. For now, post op, he will be monitored closely. Every 3 months he will have work up to assess his bowel and bladder functioning as well as follow ups with his orthopedic surgeon. Max will always have a neurosurgeon and will always be followed closely - especially in his growing years. Why is this? That leads me to #2...
2. Is there a possibility there are more surgeries in his future?
The answer to that question is yes. The neurosurgeon specifically referred to this week at "this first surgery" which wasn't comforting - but we appreciated - because it's the reality of the situation. Sometimes the cords will retether no matter how perfectly the cord release went the first time and it's just the reality of his condition. When he was first diagnosed I would read stories online of kiddos who had 7,8,9 surgeries by the time they were teenagers. Of course this made me sad but I took solace in the fact one little girl in particular lived a totally normal life - she was a dancer and a gymnast and wasn't held back at all by her condition. While we hope it's one and done for Max and future surgeries when he's older and more mobile would be infinitely harder - we now know that we - and more importantly he - is stronger than we ever imagined.
3. Why does he need to be flat on his back?
This is a scary one. When they went in to release his tethered cord they had to puncture his spinal column. When Dr. Bowman closed him up she of course closed his spinal column but we need to ensure as little pressure as possible on the base of his spinal cord to ensure that he doesn't leak spinal fluid. He will be completely flat for the 5 days we are here to mitigate this risk and then we go home he will get to be "up" which means head above butt in whichever position he wants - for 20-30 minutes a few times a day until his follow up November 1st when he will be released to resume normalcy.
4. Was it laparoscopic or does he have an incision? Is it big?
I wondered the same thing until his surgeon came in pre op and I asked her. He does have an incision that's about an inch or inch and a half and it really looks amazing for what he went through. He also has little teeny scabs all over his legs where they inserted electrodes to be sure that when they clipped the cord they weren't clipping any live nerves or anything that would affect his motor function. Here's a quick pic of his back and incision I snapped during a dipey change:
So I think that we've answered most of the questions that I maybe forgot the first time around but if there's anything else I may have missed feel free to ask away! I'll leave you with a few of my favorite pics from the last few days
All smiles pre op even though we were super hungry and super tired
This is quite possibly my favorite picture of all time now <3
My sweet man passed out before they took him. That pig hanging down though...LOVE
Looking super sweet snuggling his night night and his bottle
Wagon rides are the best
Always with the judgemental looks haha
XOXO
K
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