Thursday, February 2, 2012

Surgery Story

This is going to be long with lots of pictures, but I want every detail documented for Dylan. (We plan on turning this blog into a book for him some time down the road.)

THE DAY BEFORE SURGERY - JANUARY 10, 2012

The day before surgery was spent loving on that little foot as much as we could. We played with it, tickled it, rubbed it (all day long...or at least whenever he would give me the chance), and kissed and loved on it. We did our second try at getting a casting of his foot and this one turned out SO great! I'm so glad we got a better one than the first one. We also made a casting of his right foot too, with our extra kit. Now we have a perfect pair of his feet the day before surgery. They will be treasured forever. We took pictures throughout the day of his leg/foot. I had this urge to try to catch his foot and leg in every way I possibly could before it was changed. I was just so sad to be saying goodbye to a part of him and I wanted to remember every wrinkle and toenail and movement that it made.
                  

Before bed, we gave him a bath. I loved rubbing lotion on his little leg and foot one last time as it was. I was surprised at how well I kept myself together during most of the day, especially during moments like that. However, after lotion time, I walked past my mom to go make Dylan a bottle and she gave me this sweet smile and look of sympathy, like she knew that was probably hard for me to do and that look made the dam I had built around my ever mounting lake of tears start to breakdown. I stood at the sink and quietly cried and cried. It all of a sudden hit me that I had just rubbed lotion on his little foot for the very last time...and by this time tomorrow, that foot would be gone. I was sad and scared...but all at the same time I really felt so much peace. I knew the next day (surgery day) was the beginning of a new and better life for Dylan. So I wiped away the tears, finished making his bottle, and moved on.
     

After his bottle, Bryson and my father gave Dylan a blessing. It was SO beautiful and brought tears to my eyes, but they were happy tears. Bryson blessed Dylan with and promised him so many great things. We all felt so much peace and comfort. And then it was bed time. Again, I got teary eyed putting Dylan to bed, knowing what tomorrow morning was going to bring. He was happy and smiley and clearly had NO idea what was going to happen to him the next day, thank goodness!

{Waiting for his blessing & Cuddling with all his stuffed animals and Grandma}
  

Bryson and I had a hard time sleeping that night. We were up late talking, finishing packing for the hospital, and talking some more. After we finally got in bed, we just laid there in shock at what was actually going to be taking place the next day. We eventually fell asleep and got a total of maybe 4 hours of sleep.

THE DAY OF SURGERY - JANUARY 11, 2012

We were up early the morning of surgery. His surgery was scheduled for 7:30 AM so we had to BE at the hospital around 5:30 AM, meaning we had to leave shortly after 5:00, requiring us to be up around 4:00 to get ready. It was an early morning. :) Bryson and I got ourselves and everything ready and then got Dylan up just minutes before we left. He couldn't eat or drink anything, so it was a quick diaper change and clothes change and then we were off. I'm SO glad my parents could be there to take care of Kaden. It made everything less stressful.

{Heading to the hospital}

On the drive over to the hospital Bryson and I couldn't stop talking about how we couldn't believe this was actually happening. It felt so surreal! Once at the hospital we got admitted and were taken to our pre-surgery room. We got Dylan dressed in his hospital gown and pants and then just hung out. We took some pictures and tried to keep Dylan happy. He wasn't a fan of just sitting in this room, nor was he a fan of his medical bracelet and kept trying to rip it off, which resulted in some scratches on his arm that he was none to happy about. :) Some nurses came in and took all his stats and got us the rest of the way checked in and ready for surgery. They also had us pick out his cast color. We chose blue because that was what Kaden kept insisting Dylan's cast was going to be.
                

After about 15 minutes or so of waiting and talking to nurses, the anesthesiologist came in to discuss everything with us. She explained exactly what she would be doing and how it would all go down and then gave us the choice to give Dylan a medicine about 20 minutes prior to surgery that would help him relax a little, which would in turn, make the putting him to sleep a little easier (less of a fight). Knowing Dylan and the crazy fighter he is, especially when it comes to being held down, we decided to do the medicine. The nurse came in shortly after and gave Dylan that medicine. Shortly after the anesthesiologist left, Dr. E and his PA, Ryan, came in to talk to us. Ryan marked Dylan's leg that would be getting surgery with his initials. And then they left after explaining everything that was going to happen, as far as how long it should take, when they would call us, etc. We were invited to go into the operating room with Dylan to be with him while he fell asleep. I absolutely wanted to be there and so did Bryson so they brought us our operating room outfits and we headed to the operating room.
    

Walking to the operating room was the first time that morning that I started to get emotional. THIS WAS IT!  The tears started to well up, but I knew I had to stay strong for Dylan. I didn't want to be a mess while trying to comfort him as he was falling asleep so I bit my lip and stifled the tears. The operating room was big and felt so cold and sterile. The anesthesiologist and a few nurses were already in there finishing setting things up. The anesthesiologist had us lay Dylan on the operating table, which he immediately started to fight and flail...even with those drugs that were supposed to calm him down. She attempted for a second to put the mask on (or at least close enough to) his face, but he was all over the place. She told me to pick him up and hold him like a baby with his head resting in the crook of my elbow. He calmed down a little bit. So they had me sit down in a chair close to the operating table and they put the mask on Dylan's face while he was in my arms. So whatever was in the mask is what was going to initially make him fall asleep and then once he was asleep they would be able to easily insert the epidural and IV and be able to give him everything else that way. The anesthesiologist was saying that this part (the mask part) should only take a couple seconds. Well, true to Warrior Dylan's fighting ways...he fought it hard. And not physically, per se, although he was putting up a little fight physically as well, but he was fighting the sleep. The mask was on his face for the few seconds she said it should take and she was like, "Okay, he should start drifting off any second." And then seconds went by and more seconds and you could see in his face and eyes he was fighting it. Bryson and I had our faces right by his face telling him everything was going to be okay and that we loved him. At one point you could see his eyes start to give up that fight. That was when my eyes started to fill up with tears and I knew I wouldn't be able to hold them back much longer. My voice was getting shaky, but I kept telling him how much I loved him and that he was going to be okay and we would see him so soon. Bryson was right there too, holding Dylan's hand and whispering in his ear too. And then he just went limp in my arms and I completely lost it. The tears flowed and I just wanted to hold onto him and not let him go. But the nurses took him out of my arms and laid him on the table and ushered us out of the operating room. I took one last look back at him as we walked out of the room, laying so lifeless on the table, and really lost it. Bryson held me while I cried and the sweet nurse, with her hand on my back, assured us that he was going to be okay and they were going to take really good care of him. I knew he was going to be okay, but it was hard to let him go. As Bryson and I walked back to our room to change and get our stuff, I looked down the hall and saw Dr. E getting ready and wanted to shout out to him to be careful with my baby!

After my initial breakdown right after putting him to sleep, there were no more tears. Bryson and I both said that we felt an overwhelming peace the whole surgery and we felt no reason to really worry or fear. We knew he was in good hands, we knew we were doing the right thing, we knew he was going to be okay. It all just felt very right. We went out to the waiting room to wait for my parents to get there (they had dropped Kaden off at a babysitters and were meeting us at the hospital right after he went into surgery) and for a few minutes Bryson and I talked about what they were doing at that exact moment. We started to get emotional imagining them cutting into Dylan and decided that probably wasn't the best thing to think about, so we changed subjects. My parents got there shortly after and we headed down to the cafeteria to grab some breakfast. We took our time and talked and didn't dwell on what was happening. It was even somewhat enjoyable and relaxing. After breakfast we headed back up to the waiting room. Mind you, they had told us a nurse would most likely call us halfway through surgery to let us know how it was going and so we knew when the halfway point roughly was. Well, he went into surgery around 7:30 and was scheduled until 9:30, so around 9:00, we started wondering where our phone call was. We passed time playing on our phones and taking silly pictures with the iPad Photobooth app. hahaha. (By the way, we got our iPad for FREE from Bryson's work! How awesome is that? It was a lifesaver during our hospital time.) I kind of feel bad, like maybe we should have been a little more solemn given the situation or something, but here we were, all four of us laughing our heads off at the silly pictures. I'm glad we were able to lighten the mood and have a little fun. By 9:30 though, I was starting to get worried a little. We never received our halfway point call and my mind was starting to think of the worst case scenario. I kept brushing it off, but by shortly before 10:00, Bryson and I both were really starting to worry. What was wrong?? No call! It had been almost 2.5 hours and he was only scheduled for 2 hours of surgery! Luckily shortly after 10 they called us to let us know that Dylan was in recovery and doing well and then shortly after we were brought to a consultation room so we could talk with Dr. E about how everything went.

{My dad was laughing at us because we were all on our smartphones/iPad at one point...but he joined in too. I had to include our photobooth pictures. I'm sure Dylan will love to see what we were doing while he was in surgery. :) }
                          

{One of my fellow FH moms posted this picture on my Facebook wall during surgery and it made me well up with tears. How beautiful is this picture? And SO comforting to imagine!}

Dr. E said surgery went really well. Everything just worked out really nicely.  They were able to do the Boyd amputation, which was what we (and they) were hoping for...at one point there was a question about whether they might have to end up doing a Symes (which is just the other type of amputation) once they got in there, but this ended up not being the case. So the amputation went smoothly. They said the osteotomy (straightening of the tibia) went as perfectly as it could go. They said that typically doing one of those is kind of a guessing game. They make the cuts and remove pieces of bone that they need to remove that they feel will make for the straightest bone in the end and then just hope that the cuts they made with the now missing pieces would fit back together well and typically they do, but not absolutely perfectly, which isn't bad and is corrected during the healing process, but that Dylan's all fit back together like a puzzle...perfectly. So they were really pleased with how that went. He went on to let us know some basic information about the cast, that it would be on for about 6 weeks, things to look out for (fever indicating infection, foreign objects being shoved into the cast, not getting it wet, etc.). He warned us that there is a chance the cast will fall off and told us what to do if it did. Then they said that they would bring us back to Dylan shortly. A couple minutes later a nurse came in to get Bryson and I and walked us back to the recovery room. As we were walking back there, she said Dylan was already awake and was a little fussy. She said that he was already awake when they got him and so they were now trying to get him to drink some liquids. (Makes me wonder when did he wake up if he was already awake when the recovery nurses got him!?!?)

We turned the corner and there he was, fussing in some nurses arms. She immediately stood up and helped me sit down so I could hold him. I started to well up with tears again. I didn't full on start crying, but it was definitely hard to see him...cords connected to him all over the place, a huge blue cast on his leg, he had these big red marks around his eyes (I'm assuming from taping his eyes shut during surgery) and he was groggy and breathing funny and sounded really hoarse. It was very sad. We took turns holding him and feeding him some glucose water (sugar water). Every time he would finish one of the little 2 oz bottles, he'd start crying for more. He must have been really thirsty. He was pretty groggy, not super fussy at this point, just a little fussy. The nurse even got him to smile at one point by playing peek-a-boo with him. His oxygen levels kept dropping so we had to constantly hold an oxygen mask close to his face to keep his oxygen at a good level.
              

The most heartbreaking thing happened while we were sitting in recovery. Bryson was holding him and they had a blanket on him to keep him warm. At one point his cast was poking out of the blanket and it caught Dylan's eyes. He sat up and started gently rubbing the cast. Then he picked up the blanket and looked at his other leg, as if he was checking to make sure nothing was wrong with that one. It was so sweet and so sad all at the same time. He clearly understood something had happened to his leg and he wanted to make sure the other one was untouched. He kept rubbing his little casted leg like he was trying to come to terms with it all or something.

After about an hour in the recovery room, they moved us to our private patient room where we would be staying the rest of our time in the hospital. Dylan was still pretty loopy on the way over and could barely keep his head up while in Bryson's arms. He loved looking out the windows, though, and enjoyed the walk to our room.

After we got settled in our room, my parents met us up there to say hi to Dylan. Dylan was surprisingly in a good mood for the first hour or so after we got in our room. I mean, he was uncomfortable and not his normal self by any means, but he was smiling and being cute. He loved playing with the little blue circle pillow that he laid on in the operating room. My parents hung around for about 30 minutes or so before leaving to go take care of Kaden. It was nice having them there.
      

{My mom wanted to get a picture of us before they left. However, as we were trying to get a picture a nurse walked in, so I turned my head and then Bryson turned his head and all the while Dylan's smile just kept getting bigger. Love it!}
     

Shortly after my parents left, Dylan started to fuss a lot. He was clearly VERY uncomfortable. He would on and off get REALLY sweaty and just really miserable. He was so tired and his eyes were so heavy, but he was too uncomfortable to sleep. So he'd fall asleep for like two to five minutes and then wake up crying and moaning and wanting to shift positions. He wanted to be held, but then didn't want to be held, but didn't want to be put down. There was just no making him happy. His oxygen levels were still bad and we had to keep this tube that was blowing humidified oxygen pointed at him at all times, which was annoying because any time he'd move positions and start to fall asleep and if we didn't have the oxygen thing close enough to him, it'd start beeping, which would wake him up and make him cry and then he couldn't get comfortable again. The reason his oxygen kept going off was because he still wasn't breathing normal because he couldn't calm down enough so he was doing this weird shallow breathing thing. This all lasted for about 8 or 9 hours. It was a LONG 8 or 9 hours. A lot of trying to find what position would make him comfortable and what other medicines we could try to make him more comfortable and relax. Trying to get him to eat some crackers or drink a bottle. Finally around 9:00 PM we had given him some muscle relaxants a little earlier (on top of a few different pain meds) and he was finally somewhat relaxing. He started breathing normal and we could finally turn that oxygen tube off. He also started sleeping longer than five minutes at a time, but nothing super significant. I don't think he slept more than an hour at a time without waking up crying and needing to be held or put down or repositioned or comforted or needing more medicine. This went on ALL NIGHT LONG. It was physically and mentally and emotionally exhausting. At one point Bryson told me to lay down and I slept for about 2 hours while he took care of Dylan. Then he laid down and slept for about 3 hours while I took care of Dylan. That was all the sleep either of us got, other than the little 20 minute cat naps we could sneak in when Dylan would quiet down enough for us to, but then it was back up, trying to make him comfortable. It was a very long, exhausting night. Even now thinking about it makes me exhausted. haha. It's funny because looking at all the pictures, they look so peaceful. That's just because we only took pictures during the few calmer moments that we had in the 24 hours. Trust me...it was anything but peaceful! :)
                                

THE DAY AFTER SURGERY - JANUARY 12, 2012

Around 5 AM, Dylan fell asleep and actually stayed asleep for about two hours straight. He woke up around 7 AM and was decently happy. He sat up on his own and played with some toys (thank you to my sister, Heidi, and my parents for the new toys!) and ate some crackers and drank some milk and everything. It was a welcomed change! Around 8 AM they stopped his IV drip since he was drinking pretty normal on his own (milk and water). He started trying to crawl around his crib and was pretty content.
         

Around 10 AM or so they told us that since he was eating and drinking good and was having great wet diapers (they weighed each of his diapers the whole time we were there to keep track of how much he was peeing) and since his pain/comfort finally seemed to be managed for the most part, they said that they would be discharging us in a couple hours. We started packing all our stuff up immediately because we wanted to be ready to leave the second they said we could. We just knew that if we could get home with no noisy hospital sounds (beeping machines, nurse interruptions, noisy hallways, etc.) and just be back in the comfort of our own home, that he would be able to sleep better and be so much happier!

Around 12 noon we were finally discharged. We headed down to the Walgreens in the hospital to pick up his prescriptions and then were on our way. Dylan was pretty calm and content and we were excited to be home.

{Leaving the hospital to go home!}

He slept the whole way home and while we grabbed some lunch. We parked in our apartment parking lot and ate our lunch in the car so he could sleep a little longer. Kaden was excited to see Dylan and see his "big blue bandage". He was so sweet with Dylan. Dylan loved being home and being able to crawl around and play with his toys. At first he struggled to crawl but he kept trying and by the end of that first day home he was able to crawl pretty decently. Overall, he was doing much better. Still much more fussy than he normally is and clearly uncomfortable still, but nothing like how he was at the hospital. He got some good naps that day and those seemed to help tremendously.
                      

THE WEEKS POST SURGERY

Each day he got a little better and things got a little easier. For about a week post surgery, he would start to get really fussy as soon as his pain meds started to wear off. But as long as we kept up on his pain meds, he was pretty decently happy and content during the days. By about a week and a half post surgery he could go further between pain med doses during the day. By two weeks he was pretty much off of pain meds completely during the day. He would sometimes need one dose of some Ibuprofen during the day. Nights were MISERABLE for about a week and a half. Every night consisted of him tossing and turning and moaning and crying all night long. We moved Kaden into our bedroom and I slept on a blowup mattress in the boys room with Dylan so that Bryson could get good sleep since he had to go to work. Dylan would sleep for maybe two hours in a stretch before he would start tossing and turning so much and hitting his cast against the crib over and over, making it impossible to sleep. I would try to comfort him until it was time to give him medicine and then he'd be up for another 30 minutes after his medicine until it started to kick in and he'd relax and sleep for another two hours or so and the cycle would continue. So it was like, sleep for maybe two hours, then be up for around two hours, then sleep for two hours, then be up two hours, sleep for an hour before the morning light would then wake him up for good. I would pass him off to my mom at that time and then go take a three hour nap. This was our routine for the first week and a half or so. Around the week and a half mark he started going longer times of sleep and less time tossing and crying, more like maybe three...four if I was really lucky...hours of sleep and then up for an hour or so. I would still have to take naps as soon as someone got up to take over so that I could function the rest of the day. At two weeks, after his cast change, he started sleeping MUCH better. I think the fact that the cast was so much smaller and easier to move around in, as well as the pin in the bottom of his stump had been poking his stump for the first two weeks so after that was fixed, I'm sure that was more comfortable too. Around two weeks he started waking up only once at night for some medicine and tossed much less to where I could sometimes sleep through the tossing. Around two and a half weeks post surgery he finally started sleeping through the night and he was completely medicine free both days and nights.

The cast was/is interesting to deal with. His first cast would only fit in stretchy sweats. So he only wore sweats or no pants for the first two weeks. Changing diapers with a huge cast on is kind of a challenge, especially with a baby who is super wiggly during diaper changes. You can't really grab the cast like you would grab two feet to hold his legs up and still, etc...but we've gotten used to it and figured out ways to make it easier. You have do some maneuvering to get his permanently bent, casted leg in strollers or high chairs or shopping carts with something that goes between the legs, but it works. You just have to put him in at a funny angle. :) Overall, the cast hasn't been quite as annoying as I feared it might be.

Things are now going really good. He is pretty much back to his normal self at all times. His new cast is much smaller and he crawls and moves around much easier with this cast so it's almost as if it's not even there. The only thing not normal is the fact that he can't take baths, so only sponge baths and washing his hair in the sink. But he does really well with those so it's not too big of a deal, but he does miss his baths. Every time we give Kaden a bath he speed crawls to the tub and just stares and tries to climb in. Luckily he can't. :) Oh, he also still can't walk like he used to (with assistance of some sort), but he still tries. It's just the way the cast bent that prevents him from being able to walk.

{Attempting to walk with the laundry basket like he used to!}
video

We are excited for our next appointment at the end of this month! He will be fitted for his first prosthesis, which he'll hopefully have by mid-March. We can't WAIT to see him walk!! I'm sure it won't be for awhile, but the fact that come mid-March it will be a possibility is SO exciting!!

9 comments:

  1. Our daughter has a lucky fin...her left hand..smaller than the right two fingers webbed, the third just a nub , and the second is stiff and bent. In a year they will de-web her fingers but we have to decide if we want to keep the nub finger or have it removed. I have loved reading through some of your post and seeing your thoughts and views...deciding to have a body part removed from your child is hard and something you do not picture or plan for while growing up. Thanks for helping me take a deep breath and remember that the Lord will guide us when that choice has to be made. Love to your family!!

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  2. Awww.....Awwwwwwww.....AWWWWWWW!! Lots of tears and lots of smiles while reading this. And laughs at your cell phone pictures while waiting for Dylan to get out of surgery, ha. Aww, thank you for sharing. You all are so incredible. We love you!

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  3. Incredible is right! Thanks for sharing that day with us. It took me right back to my baby girls surgery day just one year ago....oh and I cried a lot too :) Dylan will so appreciate you journal-ing all of this for him.

    Keep up the updates!

    Becca

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  4. Great job journaling it all! Makes me wish I had taken more pictures of this with our girl. This post may also help other Mom's and Dad's facing the same situation. : ) You are a sweet family!

    As I was checking FB that morning, the picture of Jesus in the operating room had been posted and it was right before your post saying Dylan was in surgery. I knew the picture was for you! I knew I needed to copy it and post it on your wall!

    Hugs,
    Amy

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  5. Katie, I love you... And sweet little Dylan too. I cried reading your post. Good job documenting the whole thing. I'm so glad everything is going well and I'm excited to see the prosthetic too. You're in our thoughts and prayers. XOXO

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  6. Such a beautiful post. You really are such an amazing mom and have such a wonderful family! Dylan is such a handsome little boy, I can't wait to see how well he does! Thanks for sharing your journey with us, it helps us all to heal and have joy!-Diana

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  7. I just found your blog and loved reading your posts. Dylan is such an amazing little boy! Many prayers for your family on this journey.

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  8. This brought tears to me eyes...tears for you and tears remembering our journey. I'm so, so glad his surgery went well. It's amazing to see him getting around in that video. Thank you for posting that. I look forward to hearing how his next appointment goes! Hannah is wanting a purple and pink prosthesis next time :)

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  9. I sat and cried as I read about your sweet boy and this challenging time! Can't wait to see him walking! What a miraculous day that will be.:) Thanks for sharing your amazing journey...you are an incredible mom!

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