This Tuesday morning, May 24, we arrived at Children's hospital to check in at about 6:30 A.M. A nurse brought us back to a room where we changed Leo into a tiny hospital gown, weighed him, gave him a mild sedative to make him somewhat groggy, and washed him with a special scrub soap on his neck, torso, and around the surgical area. He started to get kind of silly, and all he wanted to do was give me his "kisses" which are big open mouthed slobbery things. So sweet, but made it all the harder to have to let him go later!
A nurse came to help us wheel the bed down to a "holding area". I opted to carry Leo instead of having him on the bed so the bed was used basically to wheel all our stuff (a couple bags and such) down. The image I desperately wanted to avoid having in my head was of his tiny body on a huge hospital bed being wheeled away from me, so I was happy to be able to hold him up until the last second. The surgical team came to introduce us and walk us through and take any questions we had. Whereas before we walked down there, I had plenty of questions I wanted to ask, once we got there and Leo was still slobber-kissing me and pulling my hair and I was getting so nervous, I couldn't really hear or concentrate on what they had said anyhow, so when the anesthesiologist asked if we had any questions I was like a mute.
Thank goodness Robbie kept a level head and asked our questions for me. There was the anethesiologist, a resident, and a nurse there to talk to us. Everyone was there except the surgeon and the neurologist, who were the only ones we actually knew and had talked to beforehand. The nurse, Wayne, who was kind of gruff and who dismissed the anesthesiologist when she suggested he get our surgeon to consult with us. But the anesthesiologist asked again that he go get our surgeon (she could tell I was nervous) , and Robbie agreed that we would like to see him. She said they would be going in to surgery now, but that our surgeon would stop out to talk to us briefly in the waiting area. At that point she went to take Leo from me to carry him back for me instead of wheeling him away. I actually kind of pulled him back from her because I wanted to give him one last kiss. Kind of embarrassing, I was pulling my child back away from her!
We left through the holding area doors and there was a little empty area before you go through doors to get to the family waiting area, and so there Robbie pulled me over in a hug because I started to sob. Just then Dr. M came through the doors and I tried quite unsuccessfully to seem back together, but he was very reassuring and told us not to worry and he we would send updates throughout.
We checked in at the family waiting room, a big room with little areas of chairs and sofas and soft-sided tables. In some ways it was a looooooong day, but in other ways, six hours flew by. I had a bag full of things to keep my mind occupied. I started by pinning and cutting out some sewing pattern projects I have been wanting to get to. One was a soft printed fabric baby's prayerbook for our Goddaughter, and the other is a cowboy vest for Sammy for the little boy dress-ups area I'm making for his birthday. Cutting and pinning the fabric took way less time than I thought, so it was on to coffee, busywork, and reading "Madame Bovary". (I had realized the night before I might want a fiction book to read so I just ran to the basement and grabbed one of the classics off our shelf that I'd never read.) We received our first update about 2 hours in, and Wayne said that they had actually started surgery earlier than they thought, at about 8:45 after prepping and doing the anesthesia, and that Dr. J was going to be conducting the EMG nerve study for the next couple hours, but that Leo had done really well.
After that update, we took a pager and went down to the chapel to say the rosary and get some breakfast at the cafe. Came back up and passed more time until about 11:45, at which point the recpetionist came and said that Dr. M wanted to talk to us in a consultation room. We had been told that he would consult with us at the very end of the surgery and this was way too early. So we thought that probably he had the results of the EMG and wanted to discuss how he was going to proceed perhaps (neurolosis - clearing scar tissue, or nerve grafting, and where to take the grafts from).
We sat in the consult room for a good 10-15 minutes. When he still wasn't coming, I got close to a panic attack internally. My mind started racing, imagining if something had gone wrong and he was coming to give us the news. (My imagination is REALLY good, and I have probably watched too many ridiculous episodes of Grey's Anatomy and such!) As I lived out what my reaction would be to such news, I started to feel lightheaded, and as though my heart was racing and I was going to pass out. I recognized the signs of an impending panic attack, though, and I was able to negate those negative thoughts with more realistic ones and breathe slowly so it passed right by and I was fine. Finally someone came in to tell us there was a mistake and we actually were supposed to have gotten another phone update and Wayne was waiting on the phone for us back in the reception area. Wayne (and Dr. M later) was pissed that they did that to us later. I heard Wayne ask Robbie on the phone why we were back in the room. (As if we let ourselves back there???!) lol.
Well, regardless of the mixup, Wayne's news was great, he said that they had started grafting nerves and that they would NOT need to graft a nerve from the back of his leg as they'd originally thought, they had all the nerves they needed right in his neck. He also said it looked very promising in terms of successfully regaining some function. The fact that he said that when they hadn't even finished surgery and they always seem to go overboard to cover their bases and not promise too much, that encouraged me that we had made the right decision.
All morning I had been driving myself crazy worrying that we'd made the wrong decision. That I was playing roulette and if something happened to Leo I'd never forgive myself, because it wasn't like he wouldn't have lived a full happy life the way he was; it wasn't like this surgery was necessary for him to live. But I kept reminding myself that the risks of doing this surgery and having to put him under were actually probably LESS than the risk I take with him every single day when I buckle him in and drive him around in a car. And his quality of life and ability to participate in sports and other activities would likely be greatly improved.
We left through the holding area doors and there was a little empty area before you go through doors to get to the family waiting area, and so there Robbie pulled me over in a hug because I started to sob. Just then Dr. M came through the doors and I tried quite unsuccessfully to seem back together, but he was very reassuring and told us not to worry and he we would send updates throughout.
We checked in at the family waiting room, a big room with little areas of chairs and sofas and soft-sided tables. In some ways it was a looooooong day, but in other ways, six hours flew by. I had a bag full of things to keep my mind occupied. I started by pinning and cutting out some sewing pattern projects I have been wanting to get to. One was a soft printed fabric baby's prayerbook for our Goddaughter, and the other is a cowboy vest for Sammy for the little boy dress-ups area I'm making for his birthday. Cutting and pinning the fabric took way less time than I thought, so it was on to coffee, busywork, and reading "Madame Bovary". (I had realized the night before I might want a fiction book to read so I just ran to the basement and grabbed one of the classics off our shelf that I'd never read.) We received our first update about 2 hours in, and Wayne said that they had actually started surgery earlier than they thought, at about 8:45 after prepping and doing the anesthesia, and that Dr. J was going to be conducting the EMG nerve study for the next couple hours, but that Leo had done really well.
After that update, we took a pager and went down to the chapel to say the rosary and get some breakfast at the cafe. Came back up and passed more time until about 11:45, at which point the recpetionist came and said that Dr. M wanted to talk to us in a consultation room. We had been told that he would consult with us at the very end of the surgery and this was way too early. So we thought that probably he had the results of the EMG and wanted to discuss how he was going to proceed perhaps (neurolosis - clearing scar tissue, or nerve grafting, and where to take the grafts from).
We sat in the consult room for a good 10-15 minutes. When he still wasn't coming, I got close to a panic attack internally. My mind started racing, imagining if something had gone wrong and he was coming to give us the news. (My imagination is REALLY good, and I have probably watched too many ridiculous episodes of Grey's Anatomy and such!) As I lived out what my reaction would be to such news, I started to feel lightheaded, and as though my heart was racing and I was going to pass out. I recognized the signs of an impending panic attack, though, and I was able to negate those negative thoughts with more realistic ones and breathe slowly so it passed right by and I was fine. Finally someone came in to tell us there was a mistake and we actually were supposed to have gotten another phone update and Wayne was waiting on the phone for us back in the reception area. Wayne (and Dr. M later) was pissed that they did that to us later. I heard Wayne ask Robbie on the phone why we were back in the room. (As if we let ourselves back there???!) lol.
Well, regardless of the mixup, Wayne's news was great, he said that they had started grafting nerves and that they would NOT need to graft a nerve from the back of his leg as they'd originally thought, they had all the nerves they needed right in his neck. He also said it looked very promising in terms of successfully regaining some function. The fact that he said that when they hadn't even finished surgery and they always seem to go overboard to cover their bases and not promise too much, that encouraged me that we had made the right decision.
All morning I had been driving myself crazy worrying that we'd made the wrong decision. That I was playing roulette and if something happened to Leo I'd never forgive myself, because it wasn't like he wouldn't have lived a full happy life the way he was; it wasn't like this surgery was necessary for him to live. But I kept reminding myself that the risks of doing this surgery and having to put him under were actually probably LESS than the risk I take with him every single day when I buckle him in and drive him around in a car. And his quality of life and ability to participate in sports and other activities would likely be greatly improved.
I also told myself that Robbie and I had reached this decision through prayer, and by worrying, I was trying to take things back into my own control instead of trusting that God would take care of us. I DID in fact trust that God would take care of us, but I also knew that sometimes, because of original sin, the doors of death and suffering and things that don't make sense has been opened. I knew for a fact that God would take care of us, but I didn't think I could accept the "what-if" of what if part of God's ultimate plan would mean allowing a complication, or even Leo being taken from us. I know in retrospect I just needed to trust, but this is what I was struggling with and what was running through my mind like the "madwoman of the house" that St. Teresa talked about having to get control of.
So, the next couple hours went quickly, and we were much encouraged by that update. I was lost in Madame Bovary when I glanced up to see my friend Holly and her husband Joseph, who were also at Children's that day for a difficult situation with their newborn daughter. My heart jumped up, I was immediately so happy to see them! I didn't think of this until now, and maybe this is melodramatic, but it felt kind of like Mary visiting her cousin Elizabeth. Both of us couples were heavy with something that day and it felt good just to visit, even if briefly and share a few minutes together. With the exception of the moment when I finally got to hold Leo again, that was definitely the highlight of my day. At the same time that they were getting up to leave to pick up a prescription, Dr. M walked into the room and we left our friends to speak with him in the conference room. He was visibly pleased with how the surgery had went and explained everything to us.
They had found considerable scar tissue on the C5, 6, and 7 nerves and they were able to release that scar tissue to hopefully clear up the pathways of conduction. The neurologist had tested nerve function before, and then after he was actually surprised to see that nerve function tested at near normal (where before it had been at about 30%)! This was great news, but it is one thing to have the nerve activity there in the test, and another to have it translate into function. So that is why once the cast is off in 3 weeks, we have to be aggressive with the therapy, twice a week at OT and every day at home, to get those muscles retrained and get them working. He had also been able to graft a nerve to the the triceps area, which was the most injured. The nerve graft basically acts as a bypass for the old bad connection. There was one large nerve, the long thoracic nerve, which goes to the scapula in the back, which tested no nerve activity, and he was unable to find the "source" of the dysfunction. But because they cleaned up the C5, C6< and C7 nerves, which branch out into that nerve (I may be screwing this up a bit) it is possible that by removing the scar tissue the nerve function may return to the long thoracic nerve on it's own. He said he's seen it come back and seen it not come back. If it doesn't, down the road at age 4,5, etc. he has other, non-surgical treatments they could try.
So we finished discussing everything and he needed to get back to help finish bandaging Leo which would be another hour or so, at which time they would take one parent (me) to go see him. When I walked back to get him, I got choked up again, but was happy to see a nurse holding him in a rocking chair with another nurse checking him. They had me sit in the rocking chair to take him and it was overwhelming to hold his limp body, full of bandages and tubes. He had two IV's, one capped in his hand and one in his foot, oxygen tube in his nose, a lead on his toe to check oxygenation levels, his neck and torso bandaging. It was a little much for me, but I was just sooooo happy to have him back in my arms. Once his oxygen levels were over 90 and stayed there, the nurse O.K.ed him to be moved up to recovery. They called Robbie to met me and walk up with us, and took off the nose oxygen tubes.
When we got to recovery, I just continued to hold him for a couple hours and we just looked at our little boy, who suddenly for some reason looked HUGE. I think because his neck and shoulder area is usually pretty petite, but the rest of his body is a good size, he looked bigger than usual, and like a real toddler. He was so out of it, but they kept checking his vitals and making sure everything checked out, which it did. He finally woke up and seemed unable to make any vocalizations. His mouth was so dry and probably sore from having been intubated for the anesthesia. He is always pretty quiet, but obviously even more so even as he finally woke up and just continued to lay on my lap.
So, the next couple hours went quickly, and we were much encouraged by that update. I was lost in Madame Bovary when I glanced up to see my friend Holly and her husband Joseph, who were also at Children's that day for a difficult situation with their newborn daughter. My heart jumped up, I was immediately so happy to see them! I didn't think of this until now, and maybe this is melodramatic, but it felt kind of like Mary visiting her cousin Elizabeth. Both of us couples were heavy with something that day and it felt good just to visit, even if briefly and share a few minutes together. With the exception of the moment when I finally got to hold Leo again, that was definitely the highlight of my day. At the same time that they were getting up to leave to pick up a prescription, Dr. M walked into the room and we left our friends to speak with him in the conference room. He was visibly pleased with how the surgery had went and explained everything to us.
They had found considerable scar tissue on the C5, 6, and 7 nerves and they were able to release that scar tissue to hopefully clear up the pathways of conduction. The neurologist had tested nerve function before, and then after he was actually surprised to see that nerve function tested at near normal (where before it had been at about 30%)! This was great news, but it is one thing to have the nerve activity there in the test, and another to have it translate into function. So that is why once the cast is off in 3 weeks, we have to be aggressive with the therapy, twice a week at OT and every day at home, to get those muscles retrained and get them working. He had also been able to graft a nerve to the the triceps area, which was the most injured. The nerve graft basically acts as a bypass for the old bad connection. There was one large nerve, the long thoracic nerve, which goes to the scapula in the back, which tested no nerve activity, and he was unable to find the "source" of the dysfunction. But because they cleaned up the C5, C6< and C7 nerves, which branch out into that nerve (I may be screwing this up a bit) it is possible that by removing the scar tissue the nerve function may return to the long thoracic nerve on it's own. He said he's seen it come back and seen it not come back. If it doesn't, down the road at age 4,5, etc. he has other, non-surgical treatments they could try.
So we finished discussing everything and he needed to get back to help finish bandaging Leo which would be another hour or so, at which time they would take one parent (me) to go see him. When I walked back to get him, I got choked up again, but was happy to see a nurse holding him in a rocking chair with another nurse checking him. They had me sit in the rocking chair to take him and it was overwhelming to hold his limp body, full of bandages and tubes. He had two IV's, one capped in his hand and one in his foot, oxygen tube in his nose, a lead on his toe to check oxygenation levels, his neck and torso bandaging. It was a little much for me, but I was just sooooo happy to have him back in my arms. Once his oxygen levels were over 90 and stayed there, the nurse O.K.ed him to be moved up to recovery. They called Robbie to met me and walk up with us, and took off the nose oxygen tubes.
When we got to recovery, I just continued to hold him for a couple hours and we just looked at our little boy, who suddenly for some reason looked HUGE. I think because his neck and shoulder area is usually pretty petite, but the rest of his body is a good size, he looked bigger than usual, and like a real toddler. He was so out of it, but they kept checking his vitals and making sure everything checked out, which it did. He finally woke up and seemed unable to make any vocalizations. His mouth was so dry and probably sore from having been intubated for the anesthesia. He is always pretty quiet, but obviously even more so even as he finally woke up and just continued to lay on my lap.
He drank water from his sippy, and later even had dinner- pudding, applesauce and teddy grahams. I got him to give me some feeble grins and giggles, but overall he was still pretty out of it. He didn't cry at all really, all night, but he did kick at the IV and toe probe that were attached to his feet, and tried to pick at the IV in his hand by using the hand that was just poking out of the bandaging. Robbie and I took turns holding him most of that evening and night, except for about 2 hours when we laid him down in the hospital crib. He didn't start crying, but he started rolling back and forth in the crib, tangling the IV line and worrying us that he was going to hurt his arm so we held him instead.
His nurse that evening told us he had passed all his "goals" for recovery that day with flying colors so she was sure we'd be released in the morning. That was true and we got out of there about 10:30 in the morning. I am usually not someone who likes to just sit around, but I have to admit, being able to just sit and hold my baby (who is not such a baby anymore and who loves to be active!) was a real treat. I really tried to savor every minute snuggling my sweetie man. I will always remember that.
Our first day home was rough. We hadn't slept the past 2 nights and Leo was wired and couldn't sleep either. I really think the Roxicet pain meds were keeping him from being able to sleep. They told us they would make him drowsy but we hadn't seen that happen once after taking them, instead he couldn't stay asleep. In addition, the first day he was totally off balance, as he had to relearn to walk with one arm wrapped close to his body. I was going crazy trying to keep him from hurting himself, because he insisted on trying to run around and do everything he normally does, but with much less coordination!
The kids were SO excited to see him again, they have been praying at school about it for weeks. Jimmy's teacher said he was visibly much much quieter than usual on Tuesday. I had written him a note in his lunch not to worry- I know it has been on his mind a lot because even though I hadn't been talking about it much at school with anyone in advance, it seemed like everyone was asking me about it because they'd heard from Jimmy that Leo was having surgery. :) He's a sweet older brother and has a very special place in his heart for Leo. Barbara takes things more in stride, but she too was happy to see that he was O.K. and get to hug and kiss him.
The next day was much better. He did not seem to be in any pain so we didn't use the roxicet at all and he seemed to do better without it. He also got his balance back and was mobiling around the house again, figuring out how to do everything with one arm. He was back to smiling and laughing, and Robbie and I just kept telling each other we were so happy to have him back with his personality and all.
It took Sam two days to notice he only had one arm (out). He was trying to hand him two bear toys and handed one to LEo's free arm and then went to hand him the other and said "Hey! Where OTHER hand go?? Where Leo OTHER hand?"
Today, four days after, he is doing awesome. Our challenge is to keep him from undoing the bandages and wriggling his arm out. We wrapped some stretchy ace bandages around because he was unraveling all the bandages and getting free. Once when we were rewrapping the bottom bart was open and he was moving his arm. We kept the top part bandages because they don't want him to lift his arm yet, but it was still encouraging to see how easily he could move it as if nothing happened. It is supposed to take up to 5 months with therapy to get him back to his starting point, and possible a few more months to see his full post-surgical potential. I am hoping he is one of the ones who recovers much quicker, but we will see. I'm kind of dreading all that, but it will be worth it.
Well this was ridiculously long, as usual, but I just want to have it all recorded for him, since my memory is so poor. He was a trooper and a sweetie pie throughout. I'm so grateful it went well and I have my baby back!! Thanks to all of you friends who prayed for him and for all of us, it was so very much appreciated!
His nurse that evening told us he had passed all his "goals" for recovery that day with flying colors so she was sure we'd be released in the morning. That was true and we got out of there about 10:30 in the morning. I am usually not someone who likes to just sit around, but I have to admit, being able to just sit and hold my baby (who is not such a baby anymore and who loves to be active!) was a real treat. I really tried to savor every minute snuggling my sweetie man. I will always remember that.
Our first day home was rough. We hadn't slept the past 2 nights and Leo was wired and couldn't sleep either. I really think the Roxicet pain meds were keeping him from being able to sleep. They told us they would make him drowsy but we hadn't seen that happen once after taking them, instead he couldn't stay asleep. In addition, the first day he was totally off balance, as he had to relearn to walk with one arm wrapped close to his body. I was going crazy trying to keep him from hurting himself, because he insisted on trying to run around and do everything he normally does, but with much less coordination!
The kids were SO excited to see him again, they have been praying at school about it for weeks. Jimmy's teacher said he was visibly much much quieter than usual on Tuesday. I had written him a note in his lunch not to worry- I know it has been on his mind a lot because even though I hadn't been talking about it much at school with anyone in advance, it seemed like everyone was asking me about it because they'd heard from Jimmy that Leo was having surgery. :) He's a sweet older brother and has a very special place in his heart for Leo. Barbara takes things more in stride, but she too was happy to see that he was O.K. and get to hug and kiss him.
The next day was much better. He did not seem to be in any pain so we didn't use the roxicet at all and he seemed to do better without it. He also got his balance back and was mobiling around the house again, figuring out how to do everything with one arm. He was back to smiling and laughing, and Robbie and I just kept telling each other we were so happy to have him back with his personality and all.
It took Sam two days to notice he only had one arm (out). He was trying to hand him two bear toys and handed one to LEo's free arm and then went to hand him the other and said "Hey! Where OTHER hand go?? Where Leo OTHER hand?"
Today, four days after, he is doing awesome. Our challenge is to keep him from undoing the bandages and wriggling his arm out. We wrapped some stretchy ace bandages around because he was unraveling all the bandages and getting free. Once when we were rewrapping the bottom bart was open and he was moving his arm. We kept the top part bandages because they don't want him to lift his arm yet, but it was still encouraging to see how easily he could move it as if nothing happened. It is supposed to take up to 5 months with therapy to get him back to his starting point, and possible a few more months to see his full post-surgical potential. I am hoping he is one of the ones who recovers much quicker, but we will see. I'm kind of dreading all that, but it will be worth it.
Well this was ridiculously long, as usual, but I just want to have it all recorded for him, since my memory is so poor. He was a trooper and a sweetie pie throughout. I'm so grateful it went well and I have my baby back!! Thanks to all of you friends who prayed for him and for all of us, it was so very much appreciated!
!!
4 comments:
This was wonderful to read, Liz, and I hope it was therapeutic to write! You are such an amazing Mama to Leo, and to all your kids. Many prayers coming your way for the road ahead...
Oh Liz!
I have so much to say - but will try and make it short!
First of all, you guys are amazing! Handing your kid over is so hard. And, I know they are needed, but I too have this thing about those "beds/cribs" at children's. They look like cages screaming at me "there is something wrong with your kid!!" I know thats not true, but I am like you. I like to hold my child and not put her in that thing!
2nd - seeing you guys was the highlight of my day too! And, I was going to e-mail you today because I thought about how I wanted to write a blog post about being about to meet up there and how God so blessed us with seeing each other. I was worried you would think I was a dork though :)
3rd - did you know the visitation of Mary and Elizabeth is my all time favorite verse/story?! I don't know if you remember my story about it I shared at that retreat. I should write that up on my blog...
Ok, super long comment.
I am so happy your little guy is doing well. We were praying so hard that God would shower His love on the situation after you guys prayed so hard about what He wanted you to do as Leo's parents. As always, God is good!
So glad you wrote this - for yourself and for your son. What a beautiful story from his childhood about how much he is loved.
Aww, I'm getting teared up again guys! You are great friends. :) Holly, I don't remember the story?! I hope you will write it sometime! Maybe if my memory was jogged I would remember (I told you I have a terribel memory!) I have a special place in my heart for the Visitation, because I was actually named Elizabeth after that mystery of the rosary! My Dad had been meditating a lot on that mystery at the time so that is where my name came from, although my parents say they threw in Elizabeth Ann Seton too for good measure. ;) Thanks again to both of you for all the prayers! They were certainly heard and answered, Leo is doing so great!
Oh Liz, I'm so happy to hear that everything went well. And thanks for posting the story. I was thinking and praying for you that entire day. It's good to know that Leo is doing so well!
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