The hard part about facing such a big surgery is that that is all you focus on - the surgery. That day, that event. I never spent a whole lot of time thinking about what would come after it. I knew it would take time to recover, had heard that his eyes would swell, but it was not something I thought a whole lot about. I was so worried about the surgery itself I just didn't allow too much time to think about what happens on that other side.
I think, for me, my anxiety of surgery had at least in part to do with my need to control. (Yes - I have now admitted this publicly). Surgery was completely out of my hands. So when we got back to Connor, I still wasn't in control, but I could play a part in what was going on and in helping him to feel better. I'd thankfully had some great cranio moms who gave me the lowdown on the not so pretty side of recovery, so I wasn't entirely unprepared that there would be some hard moments, but once I was back with my baby I at least knew what was going on with him and could participate.
The recovery, especially the first couple of days, is no walk in the park. Connor was still pretty drugged up and out of it when we first saw him and the swelling had not yet begun. He opened his eyes several times, but when they were open it was not like he was there. He was getting IV pain relief, which kicked in pretty quickly, but he also seemed to burn through it pretty quickly. He'd wake up screaming and flailing his arms. He had a brace on his left arm where he had an IV and arterial line that he would hit himself and anyone consoling him with. And I couldn't pick him up and rock him - all I could do was lay my face on his chest and talk to him and try to calm him down.
The first 24 hours were pretty rough. He'd thrown up after surgery so we had to get to a point where he could eat so we could give him some medicine that would last longer than an hour. And he was also running a fever. It was a cycle of him screaming and flailing, then he'd get some medicine and then he'd sleep a little bit. We had an awesome nurse who was very reassuring that all that was happening was normal, but it was so hard to watch - his heart rate would get up over 200, his blood pressure would go up and his alarms would all sound off. The nurse said that kids generally fall into two categories - those that kind of go with it and are easily soothed and relaxed by the medicine and those that fight a little more and tend to need more medicine. Connor, of course, fell into the fighter category.
That evening the neurosurgeons came by to reaffirm that everything went well and that he thought he would do well. Connor had one of his fits while he was there and the doc prepared us that this was the honeymoon phase of recovery - that it would get worse before it got better. Perfect. Around 11pm we went to get a CT scan to make sure all looked well. Moving was apparently not what Connor wanted, because right before we left he threw up everywhere. Projectile, soak through blankets and towels vomit. Thankfully that was the last time he got sick.
With the addition of food, and oxycodone, Connor was able to rest a little better, but we still had a hard time staying ahead of his pain. He would still wake up screaming and still required fentynal to calm him down. Exhaustion set in and I finally got more than a 10 minute cat nap around 3am. Only to have a resident come in at 5am to check on us. The room was dark, Connor and I were both sleeping - and he walked in to very loudly ask how everything was going. It startled us both and Connor of course started screaming. Had I not been so dazed I think I would have hit him.
FRIDAY
As the morning went on I started to think more and more that Connor wasn't just in pain, he was pretty agitated. He'd been in the same position on his back in bed forever and seemed to really be annoyed by his brace. I wanted so badly to just cuddle him! He needed plasma in the morning, but by early afternoon I was finally able to hold him.
That was probably our best night in the hospital. Connor was much more peaceful - I think a lot of that had to do with getting the brace off his arm and being held again. I could pick him up and cuddle him and he relaxed enough to nurse. He did have to get plasma again that night - which takes a couple of hours and sadly didn't start until after 11. I just held him in the crappy blue recliner and we both slept through most of it. The only scary part was that when it was done the nurse came in to disconnect him (he was connected to the line in his neck) and she got caught up in the tubing and pulled at his line. It totally freaked me out - which of course freaked Connor out. But she nonchalantly informed me that it would take a lot to pull it out because it was stitched in. After that was done we both were able to relax and sleep - it was fabulous! And then at 5am loud mouth resident came back and woke us up again. I could not believe it! And again Connor was crying.
SATURDAY
We were awake early, but I don't think either of us really wanted to get up. So we got comfy in the chair and Connor nursed and we both dozed off. When we woke up a little while later I was so excited to see that both Connor's eyes were open! His right eye had swollen shut by late Thursday. His left eye got pretty swollen, but he always had a little slit - he'd have to lean his head back to look through that little slit to see people, but it wasn't completely gone. I was excited to see the right eye, but it soon swelled back shut. But Connor also seemed a little more like himself. Other than some flailing when he was angry, he hadn't been moving much and was pretty stiff feeling. But Saturday morning he actually took some interest in his toys and starting batting at them a little.
The plastic surgeons came by in the morning to remove his dressing. I excitedly told them that I'd seen both his eyes that morning, but they prepared me that day 2 was when swelling was usually the worst. I was preparing that this was the day that the left eye would go too.
Saturday was also the day I would see his head for the first time. They cut away the dressing and removed the gauze and I got the first glimpse of Connor's new forehead. I was not at all prepared for how dramatically different it was. I knew they were removing the fused suture on top and that they were going to do some work to his forehead, but it looked almost flat and was very noticeably not the same. And then there was the very large incision across the top of his head. It completely broke my heart.
After the surgeons left it was the nurses turn to change the dressing on his central line. I knew I didn't want to be in there when they pulled the tape off his neck for that so I took the opportunity to get away for a minute. I walked down the hall and just bawled. I was exhausted and was so sad that the beautiful face that I had been staring at for 6 months was gone. I had gone into this knowing that he would look different, but it still somehow surprised me and really just made me sad.
Now that the central line was the only thing left in Connor, it was the new focus of his agitation. He seemed to notice it for the first time when his nurse pulled it when getting plasma and then would pull at it any chance he got. So when we could no longer tape it to his dinosaur dressing, we had to wrap it up against his head with gauze.
After the shock of the new head shape, and then getting his lines out of his hands, Saturday ended up being the turning point for Connor. Instead of being the day that his swelling was the worst, it was the day that it all started to go away. By the end of the day Connor was playing with his toys and both of his eyes were open - wide! The difference was amazing! There was actually talk of him going home on Sunday, which actually really scared me, but because he needed to get platelets Saturday night, that was not going to be possible.
SUNDAY
Saturday night was restful - we never got more than a couple hours of sleep in a row, but once Connor got medicine and/or nursed, he was able to get back to sleep pretty easily. I was prepared for our usual wake up call, but was pleasantly surprised when our morning resident didn't show up until after 6, we were already awake and playing, and he came in whispering! On Saturday I heard the resident coming back around 10am with Dr. Jane once Connor had dozed off for a nap. I did not want him waking him up again, so I caught them in the hall and tried to explain as nicely as I could that Connor needed to sleep, was a light sleeper, and that he'd woken us up the past two mornings and startled him and left me with a crying baby. So he was welcome to come in, but I would really appreciate it if he would try not to wake him up and whisper. I was very pleased that he had a different approach on Sunday morning.
Sunday was a pretty uneventful day. Connor would have fits when his medicine would wear off - and he'd pull at his hat and the gauze holding his lines away, but in between he was more and more like himself. Everyone who saw him was so impressed with how well he looked and how much of his swelling had gone away. But I was getting concerned about what he would do to his incision once his hat was removed. When he was in pain he really pulled at the hat - would pull it over his face with both hand and really just dug at it, so I was afraid once it wasn't there he'd dig at his incision.
MONDAY
Monday, May 28th, 2012 - Memorial Day and Glenn and I's 7th anniversary. Because Connor's blood work looked good through Saturday, he just had to have his last draw early Monday and if all looked good we would get to go home. I was scared and excited. He'd had a rough night Sunday night. He didn't stay settled for long and when he was awake he was very upset. I even had them give him oxycodone for the first time since Friday. I really think he was just annoyed by being in the hospital, having the hat and lines still on him, and not being able to just be free. But he was so agitated I couldn't swear he wasn't in pain, so I wanted to make sure if he was it was taken care of.
Because it was a holiday everything was a little delayed and it was after 8 before we saw the first resident. We got the good news that his blood work looked great, he'd been stable for over 24 hours so we really were going to get to go home. The only hurdle we had left was to have the central lines removed. I had the option to help hold him for that, but I decided to bow out of this one too. Unfortunately I could not get far enough away to drown out his screams. I knew in my head that he would be angry at being restrained and that the tape would be the worst of it, but hearing him screaming all I could do was cry.
Once they were through we just had to wait for our discharge paperwork and Glenn and Cadence to arrive to take us home. I took off the little stocking cap so that I could get more comfortable with his incision and ask any questions I had about it then. I had imagined Connor digging at his incision the way he had the hat and ripping out his stitches, but was happy to see that it would be very difficult for him to do that. And he paid no attention to it at all. I think he really just wanted everything off of him.
The new shape of his head, and seeing him with no hair, was still hard. When I nursed him for the first time without anything on his head, it struck me again how different the shape was. But he was doing so amazingly. He was just a few days removed from a huge surgery, he was laughing and playing with his toys and was essentially back to himself.
The recovery, especially the first couple of days, is no walk in the park. Connor was still pretty drugged up and out of it when we first saw him and the swelling had not yet begun. He opened his eyes several times, but when they were open it was not like he was there. He was getting IV pain relief, which kicked in pretty quickly, but he also seemed to burn through it pretty quickly. He'd wake up screaming and flailing his arms. He had a brace on his left arm where he had an IV and arterial line that he would hit himself and anyone consoling him with. And I couldn't pick him up and rock him - all I could do was lay my face on his chest and talk to him and try to calm him down.
The first 24 hours were pretty rough. He'd thrown up after surgery so we had to get to a point where he could eat so we could give him some medicine that would last longer than an hour. And he was also running a fever. It was a cycle of him screaming and flailing, then he'd get some medicine and then he'd sleep a little bit. We had an awesome nurse who was very reassuring that all that was happening was normal, but it was so hard to watch - his heart rate would get up over 200, his blood pressure would go up and his alarms would all sound off. The nurse said that kids generally fall into two categories - those that kind of go with it and are easily soothed and relaxed by the medicine and those that fight a little more and tend to need more medicine. Connor, of course, fell into the fighter category.
That evening the neurosurgeons came by to reaffirm that everything went well and that he thought he would do well. Connor had one of his fits while he was there and the doc prepared us that this was the honeymoon phase of recovery - that it would get worse before it got better. Perfect. Around 11pm we went to get a CT scan to make sure all looked well. Moving was apparently not what Connor wanted, because right before we left he threw up everywhere. Projectile, soak through blankets and towels vomit. Thankfully that was the last time he got sick.
With the addition of food, and oxycodone, Connor was able to rest a little better, but we still had a hard time staying ahead of his pain. He would still wake up screaming and still required fentynal to calm him down. Exhaustion set in and I finally got more than a 10 minute cat nap around 3am. Only to have a resident come in at 5am to check on us. The room was dark, Connor and I were both sleeping - and he walked in to very loudly ask how everything was going. It startled us both and Connor of course started screaming. Had I not been so dazed I think I would have hit him.
FRIDAY
As the morning went on I started to think more and more that Connor wasn't just in pain, he was pretty agitated. He'd been in the same position on his back in bed forever and seemed to really be annoyed by his brace. I wanted so badly to just cuddle him! He needed plasma in the morning, but by early afternoon I was finally able to hold him.
It felt like the first time I held him after he was born. He was right where he was supposed to be. A plush throne was made of pillows and blankets so that I could comfortably nurse him, but he had no interest in it and it just broke my heart. I thought for sure nursing would be the cure all, but he had no interest and still seemed irritated.
That evening we were moved from the PICU to the regular pediatric floor and it felt like we'd moved to a different planet. The PICU is a loud, bright place. People are constantly coming and going and there is a lot of activity. But the doors opened to the peds floor and it was so quiet. We moved to our own room where we could close the door, I had a bathroom and Connor was free - all his lines and monitors were gone with the exception of his central line in his neck. I could feel us both relax.
SATURDAY
We were awake early, but I don't think either of us really wanted to get up. So we got comfy in the chair and Connor nursed and we both dozed off. When we woke up a little while later I was so excited to see that both Connor's eyes were open! His right eye had swollen shut by late Thursday. His left eye got pretty swollen, but he always had a little slit - he'd have to lean his head back to look through that little slit to see people, but it wasn't completely gone. I was excited to see the right eye, but it soon swelled back shut. But Connor also seemed a little more like himself. Other than some flailing when he was angry, he hadn't been moving much and was pretty stiff feeling. But Saturday morning he actually took some interest in his toys and starting batting at them a little.
The plastic surgeons came by in the morning to remove his dressing. I excitedly told them that I'd seen both his eyes that morning, but they prepared me that day 2 was when swelling was usually the worst. I was preparing that this was the day that the left eye would go too.
Saturday was also the day I would see his head for the first time. They cut away the dressing and removed the gauze and I got the first glimpse of Connor's new forehead. I was not at all prepared for how dramatically different it was. I knew they were removing the fused suture on top and that they were going to do some work to his forehead, but it looked almost flat and was very noticeably not the same. And then there was the very large incision across the top of his head. It completely broke my heart.
After the surgeons left it was the nurses turn to change the dressing on his central line. I knew I didn't want to be in there when they pulled the tape off his neck for that so I took the opportunity to get away for a minute. I walked down the hall and just bawled. I was exhausted and was so sad that the beautiful face that I had been staring at for 6 months was gone. I had gone into this knowing that he would look different, but it still somehow surprised me and really just made me sad.
Now that the central line was the only thing left in Connor, it was the new focus of his agitation. He seemed to notice it for the first time when his nurse pulled it when getting plasma and then would pull at it any chance he got. So when we could no longer tape it to his dinosaur dressing, we had to wrap it up against his head with gauze.
After the shock of the new head shape, and then getting his lines out of his hands, Saturday ended up being the turning point for Connor. Instead of being the day that his swelling was the worst, it was the day that it all started to go away. By the end of the day Connor was playing with his toys and both of his eyes were open - wide! The difference was amazing! There was actually talk of him going home on Sunday, which actually really scared me, but because he needed to get platelets Saturday night, that was not going to be possible.
SUNDAY
Saturday night was restful - we never got more than a couple hours of sleep in a row, but once Connor got medicine and/or nursed, he was able to get back to sleep pretty easily. I was prepared for our usual wake up call, but was pleasantly surprised when our morning resident didn't show up until after 6, we were already awake and playing, and he came in whispering! On Saturday I heard the resident coming back around 10am with Dr. Jane once Connor had dozed off for a nap. I did not want him waking him up again, so I caught them in the hall and tried to explain as nicely as I could that Connor needed to sleep, was a light sleeper, and that he'd woken us up the past two mornings and startled him and left me with a crying baby. So he was welcome to come in, but I would really appreciate it if he would try not to wake him up and whisper. I was very pleased that he had a different approach on Sunday morning.
Sunday was a pretty uneventful day. Connor would have fits when his medicine would wear off - and he'd pull at his hat and the gauze holding his lines away, but in between he was more and more like himself. Everyone who saw him was so impressed with how well he looked and how much of his swelling had gone away. But I was getting concerned about what he would do to his incision once his hat was removed. When he was in pain he really pulled at the hat - would pull it over his face with both hand and really just dug at it, so I was afraid once it wasn't there he'd dig at his incision.
MONDAY
Monday, May 28th, 2012 - Memorial Day and Glenn and I's 7th anniversary. Because Connor's blood work looked good through Saturday, he just had to have his last draw early Monday and if all looked good we would get to go home. I was scared and excited. He'd had a rough night Sunday night. He didn't stay settled for long and when he was awake he was very upset. I even had them give him oxycodone for the first time since Friday. I really think he was just annoyed by being in the hospital, having the hat and lines still on him, and not being able to just be free. But he was so agitated I couldn't swear he wasn't in pain, so I wanted to make sure if he was it was taken care of.
Because it was a holiday everything was a little delayed and it was after 8 before we saw the first resident. We got the good news that his blood work looked great, he'd been stable for over 24 hours so we really were going to get to go home. The only hurdle we had left was to have the central lines removed. I had the option to help hold him for that, but I decided to bow out of this one too. Unfortunately I could not get far enough away to drown out his screams. I knew in my head that he would be angry at being restrained and that the tape would be the worst of it, but hearing him screaming all I could do was cry.
Once they were through we just had to wait for our discharge paperwork and Glenn and Cadence to arrive to take us home. I took off the little stocking cap so that I could get more comfortable with his incision and ask any questions I had about it then. I had imagined Connor digging at his incision the way he had the hat and ripping out his stitches, but was happy to see that it would be very difficult for him to do that. And he paid no attention to it at all. I think he really just wanted everything off of him.
The new shape of his head, and seeing him with no hair, was still hard. When I nursed him for the first time without anything on his head, it struck me again how different the shape was. But he was doing so amazingly. He was just a few days removed from a huge surgery, he was laughing and playing with his toys and was essentially back to himself.
It has now been a week since we came home. I am still just amazed at how well Connor is doing. He has had nothing but ibuprofen for pain since Tuesday, and has had nothing at all since Saturday. He had a hard time at first rolling over to his stomach, so his sleep was a little off to start with, but he is back to his rollie pollie self. He is jumping and rocking in his jumper, screeching at his brother, and has now almost mastered sitting up by himself. I am in awe of his strength and so grateful for all the thoughts, prayers and kind words during all of this. Glenn and I have been blessed with 2 amazing boys and I am so thankful that we are all so loved!!
PS - this post has been started and stopped many, many times. I really wanted to get in as much info about our hospital stay as I could for my own record and really did not intend on it being so long. So if you read all of this thank you so much! You deserve a gold star!!
