Well December 15th finally came and it was time for Carter to have his surgery. This was something that we knew was going to happen but it never gets any easier, no matter how many times you tell yourself you're ready for your child to have surgery.
The doctors office called me on Friday to let me know that Carter's surgery was going to be at 9:00am and that we needed to be at the office by 8:00am. I was also told that he couldn't eat anything after 5:00am; something I was not ready to tell a 2 month old baby. So Monday, at 4:00am I woke up to heat up a 6 ounce bottle (when he usually only takes 4), wake him up, and try to get him to eat as much as possible so he can hold off until it's time to go into the operating room. Luckily, and thank God, he actually took all 6 ounces and I was so happy that he was able to do that.
After he ate and I changed him he went back to bed and I got ready for the day. Everything was already packed up. His diaper bag had clothes, blankets, comfort items, diapers, you name it I had it in there. I also had a bag packed for myself, not that I needed it because I knew I would be so nervous about his surgery that I wouldn't do anything but wait for him.
I woke Carter up around 6:30 and got him dressed for the day while Mike loaded up the car with everything we needed. We were in the truck by 7:10 making our way to Mott's and while I was making my way there I got a phone call that Carter's surgery could be moved up because there was a cancellation, something I was still incredibly nervous about but also thankful because he wouldn't get too hungry or fussy before his surgery, which I didn't want because I knew he would be in pain after surgery.
We made it to Mott's, went up to the 4th floor to check in and waiting to be called into pre-op. There were many families there waiting for their own children and babies to get surgery, or waiting to see their child after surgery; it was an eye opening experience sitting in the waiting room, because unless your own child has to have surgery you don't realize how many children have to endure the process or how many parents in that room know exactly how you feel without a word.
We waited for a while and Carter was called back to pre-op. There they took his vitals and weighed him so they knew how much medicine they would need to give him. Carter came in weighing 11lbs. 14 oz. Meaning Carter gained 11 ounces in a week, something that I am proud of him for, what a growing boy. :) We then met the anesthesiologist who asked us all sorts of questions and explained to us what she would be doing with Carter. She also told us that he would not have an IV put in until he was asleep so they wouldn't do any poking while he was still awake, which was a relief to me. He snuggled with Mike and I for about an hour and at 9:45 it was time for him to go into surgery.
Now Mike has gone through this process before of leaving the pre-op area and waiting hours for surgery that Carter and I went through in July but this was a very new experience for me. We were given Carter's case number and a pager to let us know that we would get updates on how he was doing and when to come back to the 4th floor to see him. After getting the information we made our way to the elevators where I had to take several deep breaths as I left my 2 month old to get surgery. Mike and I got breakfast and we talked and tried to keep our mind off of what was happening, well at least that's why I was talking so much.
It was said before the surgery began that this would be about a 3 hour process. We continued to check our pager and get updates on him being in the room and doing a good job. About an hour and a half after dropping him off we received a page that said, please come to the 4th floor; consult with Dr. My heart dropped. I kept thinking 'wait, it hasn't been three hours yet, why are we meeting with the doctor already?' It was terrifying. We made our way back to the 4th floor, checked in with the front desk and was put into a room to wait for the doctor, and we waited, and we waited some more until finally, after about 12 minutes of waiting, which felt like an eternity he came into the room.
All was well, thank the Lord, and the doctor told us that it was a smooth surgery and that Carter did a great job. He explained to us what he did, how to handle him for the next few days/weeks, and how he would be feeling once he woke up. He also answered any questions that we had and told us that he would be seeing Carter in two weeks for a checkup to make sure that the shunt isn't infected or malfunctioning. After leaving the room, we went back to the waiting room to be called back to see Carter; after another 15 minutes, it was time to see my tough little boy.
I was told that he had two bandages on his body; one on his head and another on his stomach. Under those bandages are steri-strips and stitches that need to stay covered for about a month. These are the areas where the shunt and the tubing was placed into his body. The stitches are going to dissolve and we don't need to go back in to have them removed which was nice to hear. Carter had a medium sized shunt put in and the doctor explained that the excess fluid would leave his ventricles slowly and not all at once. In emergency situations fluid is removed immediately but it's not something that doctors want to have happen because if the fluid leaves the brain too quickly it can begin to bleed, which is a very serious problem and Carter would need to go back into surgery due to a brain bleed. Instead, the fluid will slowly leave his brain and be drained into his abdominal area. Carter will see the doctor in two weeks to make sure things are still looking good and again three months after that. It's at his second appointment where Carter will have an ultrasound and we will see what his new "normal" is for his ventricles; that new ultrasound will be the one doctors compare in the future to make sure that fluid isn't continuing to stay in his head. It was a lot of information to receive but the doctors and nurses were very helpful and wonderful at explaining everything we needed to know.
As I walked up to his bed I took a breathe for what I was about to see; my sweet little man swollen from surgery with bandages on his body, an IV in his foot, and cuts on his body. He was wrapped up in a blanket and sucking on his nuk (what I call a pacifier). We stood and held his hand and got information from his nurse as to what we were waiting for before moving to the 12th floor for his overnight stay. Usually people are in the post-op recovery area for about an hour or two; Carter was there for 5 1/2 hours. Unfortunately he wasn't doing well with his pain and the nurse had to continue to give him pain medicine because it wasn't really working for him. He was also having a hard time with his breathing and his stats continued to drop. He would try to scream but rather than screaming he would turn bright red and hold his breath for too long of a time then the doctors and nurses liked, so they kept him longer to be observed.
This was where I was devastated for Carter. He was in a lot of pain, incredibly swollen, and hurt anytime he tried to move. Carter was either sleeping or screaming so they decided to continue to give him medicine and after about four rounds it seemed to be kicking in. However, they did need to give him oxygen and set him up with his own oxygen system. He stats continued to drop and we were discussing whether or not he would be going to the 12th floor or put into the moderate care unit due to the oxygen. After another 3 hours Carter got the okay to go up to the 12th floor but needed to stay on oxygen for the night to help his breathing.
It was a very long night with Carter and I'm pretty sure I was awake all night just watching him. I tried sleeping for a couple of hours but would jump off the couch when his stats would start beeping and warning the nurses. In the morning the neurosurgeons from the day before stopped by to take a look at him to see how he was doing. They were happy with his progress and thought that he was doing much better than the day before. I was told that if his stats didn't drop he would be able to go home later that day but for now, he was still being monitored.
I never left the room. My eyes were either on Carter or I was holding him. He continued to get pain medicine (infant Tylenol) and slowly but surely he began to eat more throughout the day. Around 5:30pm I was told that Carter could be discharged and go home. He was given a sponge bath because he cannot be submerged in water for about 4 weeks due to his stitched and bandages and was put into some clothes so he could go home. I packed up the truck, carefully put him in his carseat, and we headed home.
There is still a lot happening now that we are home and Carter needs to be watched very carefully to make sure that there isn't any malfunction or infection happening. For example, whenever Carter gets the flu we have to take him to the hospital because although it could just be the flu it could also be a shunt malfunction. If Carter is too sleepy during the day and not eating, time to go to the hospital again. We were told that we would be going to the hospital a lot more than your average new parent; something I've known for quite some time now... all those surgeries will do that to a new mom. ;)
So now Carter is home and I am watching him like a hawk. He has had a couple of rough days and still been in pain but slowly recovering nicely. I cannot begin to thank everyone for the kind words, prayers, and reaching out to my family during this time. Carter is a very lucky boy to have so many wonderful people thinking of him and praying that everything goes well. For now, Carter is good to go until his checkup in January and we won't need to go to the hospital (fingers crossed) until 2015! Now it's time to enjoy the holiday's and Carter's first Christmas. :)
The doctors office called me on Friday to let me know that Carter's surgery was going to be at 9:00am and that we needed to be at the office by 8:00am. I was also told that he couldn't eat anything after 5:00am; something I was not ready to tell a 2 month old baby. So Monday, at 4:00am I woke up to heat up a 6 ounce bottle (when he usually only takes 4), wake him up, and try to get him to eat as much as possible so he can hold off until it's time to go into the operating room. Luckily, and thank God, he actually took all 6 ounces and I was so happy that he was able to do that.
After he ate and I changed him he went back to bed and I got ready for the day. Everything was already packed up. His diaper bag had clothes, blankets, comfort items, diapers, you name it I had it in there. I also had a bag packed for myself, not that I needed it because I knew I would be so nervous about his surgery that I wouldn't do anything but wait for him.
I woke Carter up around 6:30 and got him dressed for the day while Mike loaded up the car with everything we needed. We were in the truck by 7:10 making our way to Mott's and while I was making my way there I got a phone call that Carter's surgery could be moved up because there was a cancellation, something I was still incredibly nervous about but also thankful because he wouldn't get too hungry or fussy before his surgery, which I didn't want because I knew he would be in pain after surgery.
We made it to Mott's, went up to the 4th floor to check in and waiting to be called into pre-op. There were many families there waiting for their own children and babies to get surgery, or waiting to see their child after surgery; it was an eye opening experience sitting in the waiting room, because unless your own child has to have surgery you don't realize how many children have to endure the process or how many parents in that room know exactly how you feel without a word.
We waited for a while and Carter was called back to pre-op. There they took his vitals and weighed him so they knew how much medicine they would need to give him. Carter came in weighing 11lbs. 14 oz. Meaning Carter gained 11 ounces in a week, something that I am proud of him for, what a growing boy. :) We then met the anesthesiologist who asked us all sorts of questions and explained to us what she would be doing with Carter. She also told us that he would not have an IV put in until he was asleep so they wouldn't do any poking while he was still awake, which was a relief to me. He snuggled with Mike and I for about an hour and at 9:45 it was time for him to go into surgery.
Now Mike has gone through this process before of leaving the pre-op area and waiting hours for surgery that Carter and I went through in July but this was a very new experience for me. We were given Carter's case number and a pager to let us know that we would get updates on how he was doing and when to come back to the 4th floor to see him. After getting the information we made our way to the elevators where I had to take several deep breaths as I left my 2 month old to get surgery. Mike and I got breakfast and we talked and tried to keep our mind off of what was happening, well at least that's why I was talking so much.
It was said before the surgery began that this would be about a 3 hour process. We continued to check our pager and get updates on him being in the room and doing a good job. About an hour and a half after dropping him off we received a page that said, please come to the 4th floor; consult with Dr. My heart dropped. I kept thinking 'wait, it hasn't been three hours yet, why are we meeting with the doctor already?' It was terrifying. We made our way back to the 4th floor, checked in with the front desk and was put into a room to wait for the doctor, and we waited, and we waited some more until finally, after about 12 minutes of waiting, which felt like an eternity he came into the room.
All was well, thank the Lord, and the doctor told us that it was a smooth surgery and that Carter did a great job. He explained to us what he did, how to handle him for the next few days/weeks, and how he would be feeling once he woke up. He also answered any questions that we had and told us that he would be seeing Carter in two weeks for a checkup to make sure that the shunt isn't infected or malfunctioning. After leaving the room, we went back to the waiting room to be called back to see Carter; after another 15 minutes, it was time to see my tough little boy.
I was told that he had two bandages on his body; one on his head and another on his stomach. Under those bandages are steri-strips and stitches that need to stay covered for about a month. These are the areas where the shunt and the tubing was placed into his body. The stitches are going to dissolve and we don't need to go back in to have them removed which was nice to hear. Carter had a medium sized shunt put in and the doctor explained that the excess fluid would leave his ventricles slowly and not all at once. In emergency situations fluid is removed immediately but it's not something that doctors want to have happen because if the fluid leaves the brain too quickly it can begin to bleed, which is a very serious problem and Carter would need to go back into surgery due to a brain bleed. Instead, the fluid will slowly leave his brain and be drained into his abdominal area. Carter will see the doctor in two weeks to make sure things are still looking good and again three months after that. It's at his second appointment where Carter will have an ultrasound and we will see what his new "normal" is for his ventricles; that new ultrasound will be the one doctors compare in the future to make sure that fluid isn't continuing to stay in his head. It was a lot of information to receive but the doctors and nurses were very helpful and wonderful at explaining everything we needed to know.
Carter's shunt, although his face is swollen in these pictures you can see where the shunt is located. Now that the swelling has gone down the shunt is more visible. Once Carter has more hair though you won't even know it's there.
As I walked up to his bed I took a breathe for what I was about to see; my sweet little man swollen from surgery with bandages on his body, an IV in his foot, and cuts on his body. He was wrapped up in a blanket and sucking on his nuk (what I call a pacifier). We stood and held his hand and got information from his nurse as to what we were waiting for before moving to the 12th floor for his overnight stay. Usually people are in the post-op recovery area for about an hour or two; Carter was there for 5 1/2 hours. Unfortunately he wasn't doing well with his pain and the nurse had to continue to give him pain medicine because it wasn't really working for him. He was also having a hard time with his breathing and his stats continued to drop. He would try to scream but rather than screaming he would turn bright red and hold his breath for too long of a time then the doctors and nurses liked, so they kept him longer to be observed.
This is how I saw Carter when he started to wake up, poor guy.
What a swollen little face :(
Being monitored with his oxygen and pain in recovery.
It was a very long night with Carter and I'm pretty sure I was awake all night just watching him. I tried sleeping for a couple of hours but would jump off the couch when his stats would start beeping and warning the nurses. In the morning the neurosurgeons from the day before stopped by to take a look at him to see how he was doing. They were happy with his progress and thought that he was doing much better than the day before. I was told that if his stats didn't drop he would be able to go home later that day but for now, he was still being monitored.
I never left the room. My eyes were either on Carter or I was holding him. He continued to get pain medicine (infant Tylenol) and slowly but surely he began to eat more throughout the day. Around 5:30pm I was told that Carter could be discharged and go home. He was given a sponge bath because he cannot be submerged in water for about 4 weeks due to his stitched and bandages and was put into some clothes so he could go home. I packed up the truck, carefully put him in his carseat, and we headed home.
Time to go home!
There is still a lot happening now that we are home and Carter needs to be watched very carefully to make sure that there isn't any malfunction or infection happening. For example, whenever Carter gets the flu we have to take him to the hospital because although it could just be the flu it could also be a shunt malfunction. If Carter is too sleepy during the day and not eating, time to go to the hospital again. We were told that we would be going to the hospital a lot more than your average new parent; something I've known for quite some time now... all those surgeries will do that to a new mom. ;)
So now Carter is home and I am watching him like a hawk. He has had a couple of rough days and still been in pain but slowly recovering nicely. I cannot begin to thank everyone for the kind words, prayers, and reaching out to my family during this time. Carter is a very lucky boy to have so many wonderful people thinking of him and praying that everything goes well. For now, Carter is good to go until his checkup in January and we won't need to go to the hospital (fingers crossed) until 2015! Now it's time to enjoy the holiday's and Carter's first Christmas. :)
At home snuggles in his blankie
First of all, I love you blog! Second my little Angel baby Mavi (Maverick) also has SB and is almost exactly 1 day older than Carter. We didn't qualify for fs because she also has a conjoined kidney (totally unrelated and asymptomatic...she just really wanted to be special! ). Anyways...she doesn't have a shunt yet but we are getting ready to have our first MRI on her head and I was just wondering if they talked to you about the ETV surgery as well as shunting and your thoughts on both options? I'm just trying to get as much info as I can heading into our conversations about this. Feel free to email me rather than comment here if you would prefer at celseybodily@gmail.com I would very much appreciate your insight. PS...Carter is adorable and I am so happy that he is doing so well!
ReplyDeleteThank you so much for the compliment for the blog and for Carter. I think he is pretty darn cute but I'm bias ;) I'm so glad you like it and find it helpful. I love your little girls name too so cute! We didn't talk about ETV actually, the doctors only spoke to us about the VP shunt. With Carter's ventricles that was the best option so we didn't get the chance to discuss further. I'm sorry I wish I had more to help you with. If you have any questions about the surgery Carter had and the prices please let me know. We are an open book!
DeleteThank you for the info, I will take anything. Mavi is scheduled for her ETV on Tuesday. If for some reason they decide that is too risky they will do a shunt at that time instead. It is so scary to think about surgery...brain surgery...but we are all hopeful that the surgery will be a success. I am assuming the recovery will be similar...any advice? Things I should bring, questions to ask, etc?
ReplyDeleteI know exactly how you feel. Surgery for your little one is terrifying but those doctors are going to do everything they can to help. I would ask how soon you would be hearing from them should they change their mind in surgery and put in a shunt instead that's something they should let you know during surgery and not after. Make sure they have a pager system to contact you (not sure if all hospitals do that?)
DeleteSorry it published my comment before I was finished! I would ask the recovery time and also ask what would make your stay there longer if it was needed. Carter was there overnight but came home the next evening. If surgery is in the morning get up an hour before she isn't allowed to eat and feed her as much as you can. Carter was only eating 4 ounces at the time but I woke him up and gave him 6 to tide him over before they took him in. Also bring a blanket you like to wrap her up in and snuggle with. It's good for them to have something that smells like home for comfort and for you to use later in her room to snuggle with. The morning after surgery all Carter wanted to do was sleep in my arms so be sure you have a nice soft blanket for that :). If you think you will get to antsy waiting during the surgery try to bring a book our spend a lot of time in the gift shop. I even bought a little something for him so when he's older he has his surgery gift and story. Things will be fine. Make sure after surgery to ask what to look for if something isn't working for her once you're back home. Also check to see what her recovery time for swelling will be at home, ours was about a week. Good luck and let me know if you have any other questions before her surgery day!
Delete