Surgery #2

Oh surgery....I know this was necessary...but it was not fun!! We knew what to expect a little more this time, having already gone through it once before. That almost made things worse though. We knew the rough road we had ahead of us and that made me stress a little more leading up to it. But we just kept planning for the worst, which we thought last time was pretty bad, so we were planning for similar to last time and then hope that things might be a little better than last time. Unfortunately...this time took "worse" to a whole new level. :( This surgery was a lot more invasive and major and the poor guy was not happy about it. :( It was heart breaking.

Monday, May 19th - All we told Dylan leading up to surgery day was that he was going to be having "surgery" and that the doctors were going to fix his leg since it was hurting him. He seemed good with that. We didn't want to freak him out by telling him too much about what exactly the doctors would be doing and how he would be in pain after, etc. The day before surgery, we decided to tell him just a little more so that he didn't freak out too much when we got there and they started doing stuff to him that they don't usually do during normal appointments. So we told him that we'd be going to the hospital and they were going to put him in special pajamas, have him go to sleep, and then they were going to fix his leg while he was sleeping. He started crying and said he didn't want to do that. We told him we know he didn't want to, but asked him if his leg hurt and when he said yes, we said that it was important for the doctors to fix it and this was how they needed to fix it. We ensured him that we would be there with him, monkey would be with him, we would be holding him while he fell asleep and that we would be there when he woke up. He calmed down a little. It broke my heart to begin this process that I knew was going to be scary for him. :(

So Monday morning we woke him up super early and we headed to the hospital. Surgery was set for 8:30 AM and we needed to be there at 6:30 AM. Dylan was not happy on the way to the hospital. He was allowed some water up until 6:30 and so we kept trying to get him to drink, but he wouldn't. By the time we got to the hospital he was calmed down. He was scared. You could see it in his eyes. He was somber and didn't say much and just kind of sat there while we filled out paperwork, etc. He would force a smile whenever we smiled at him, but you could just tell the nerves were rampant in his little body and mind.

Checking out the huge fish tank while we waited for them to take us back.

 

7:30 AM - They took us back to our pre-op room where we got him in his special jammies and waited for the slew of nurses and doctors to come in to do their business. Dylan was a champ. He smiled and tried really hard to be brave every time a new nurse had to ask him questions or listen to his heart, take his temp, etc.

Check out his smile! :) Such a sweet, brave boy!

Part of the special jammies included two socks, which we obviously didn't need both. So the nurse gave us a marker to make a sock puppet out of the extra sock. Dylan got a kick out of it!

 

 

They took Bryson and Dylan to another room to weigh him while I talked to a nurse. They gave him a sticker while there and even though he was so nervous and scared, he was SO sweet and made sure to ask for a pink sticker for his mommy. He is such a sweet boy!! See my pink sticker?

He kept playing with my hair every time a nurse was in the room asking questions. Maybe it calmed him down or something. He kept saying, "I'm smoothing your hair, Mommy!"

The longer the waiting went on, the harder it was on Dylan. He was so anxious and the nerves were affecting his stomach. He kept complaining that his belly hurt. Poor boy!

We tried to comfort him as best we could.

 

8:45 AM - The time finally came for Bryson and I to get in our "space man" suits, as Dylan called them, and then we all headed back to the surgery room. I got to hold him as they put him under with the strawberry flavored gas that he chose. He cried and cried that he didn't want to do it and tensed up like crazy trying to fight it. I held him tight and we told him it was going to be okay, that Mommy and Daddy were right there with him and that we love him and would be waiting for him to wake up. And then he was out. It worked much faster this time and I could feel his body relaxing, as he verbally tried to fight it, and then he just laid there still in my arms. Worst! Part! Ever! We laid him on the table and walked out. I totally lost it. I don't think that will EVER get easier. We knew he was in good hands, but it's so hard to leave him behind.

And then the waiting game began. My parents met up with us and it was SO nice to have their support. We grabbed breakfast together and then headed to the waiting room. We talked, played games on our phones, etc. This was a LONG surgery! It was scheduled for 4 hours but ended up taking almost 5. While sitting in the waiting room, we would see families go IN to surgery and come OUT of surgery...and we were still there waiting. They were so good to call us every hour to let us know that things were going well and they were still working, etc. That helped ease some nerves throughout the 5 hour process.

 

 

1:30 PM - We finally got the call that surgery was done. Shortly after, Dr. H, came out to let us know exactly how things went. He said they went great. Everything is turned the right way and straight and his stumpy is shaped well, etc. He gave us some post-op instructions (keep cast dry, cast on for 6 weeks, let him do as much as he feels comfortable doing, etc.). We waited a little longer for them to finally bring us back.

2:15 PM - The next worst part of surgery is going back to recovery and seeing your child all drugged up and non-responsive and hooked up to a million wires. I well up with tears without fail! We were finally brought back and Dylan was totally out of it. They said that he had already woken up, crying of a lot of pain, so they gave him some medicine to knock him out and checked his epidural. So we waited and waited for him to wake up again to see how he was doing.

After awhile he started to respond to us a little. He was still out of it, but would answer our questions. It was really cute!

3:00 PM - He finally woke up. He was good for about 5 minutes, long enough to start eating a popsicle. Then he started screaming and crying that his leg hurt. So they gave him an extra bolus in his epidural and some more pain meds to help him and knock him out again until the epidural was fully working.

Daddy feeding him his purple popsicle.

Shortly after the meds knocked him out again. The nurses kept laughing at how horrible his lips looked from his purple popsicle...that is not a color they usually like to see on a patient's lips! :)

He held tight to his beloved monkey, even knocked out!

4:00 PM - He was still asleep, but his stats were stabilizing, which let them know that he was getting more comfortable/relaxing so his epidural must have been working. They decided to go ahead and send us to our patient room. His poor body must have felt good to finally be comfortable, because he slept and slept! Bryson and I took the chance to take quick naps here and there, between updating family and friends on his status. I wanted to be right there when he woke up.

7:00 PM - He FINALLY woke up! He was a little uncomfortable and in pain, but doing much better than before! He was able to smile for a picture (or 2 or 3), eat about 1/3 of a popsicle, throw up the popsicle, get put on some meds to help his nausea and show us just how much of a trooper he really is. He amazes us! He was clearly uncomfortable but didn't complain too much. At one point he was acting bothered by something so I asked him what was wrong and he said, looking down at himself, very concerned, "Mom, they put a diaper on!" He was not too happy about that. haha! :)

Smiles! :)

He even waved and smiled for a video. :)

Not feeling too great. But staying somewhat distracted with a cartoon.

 

He stayed awake for about an hour before falling asleep again after getting some pain meds. Even with the epidural, he still needed to be on pain meds round the clock. Check out his pain management plan...yikes! But this is what seemed to finally keep him good and comfortable.

ET phone home....

The night went pretty smooth. Which was WAY better than last time. Last time, that first night was beyond horrible...up every 5 minutes crying for hours on end as we tried to figure out the right pain med combination to get him comfortable. This time, with the epidural and getting his pain med plan figured out early on, he was fairly comfortable and slept pretty well. He would wake up to get his pain meds and then would go right back to sleep.

Daddy keeping him company during a short midnight waking.

Tuesday, May 20th - The plan was to turn his epidural off at 6:00 AM to see how he handled not being on it. If he did okay with pain meds only, then we could take the epidural out and head home shortly after. So the epidural was turned off at 6:00 AM and by 7:00 AM he started getting uncomfortable. We tried giving him some more pain meds to help.

We had a good laugh about Daddy's crazy bed head. :) haha!

He REALLY wanted to see Kaden. We called him before he headed off to Preschool and Dylan just cried when he talked to him. He missed him SO much!

As he got more and more uncomfortable, even with pain meds, we tried to distract him with popsicles. They would help for a few minutes, before he'd start complaining again of his leg hurting so bad.

This picture KILLS me! He was really starting to get uncomfortable. He'd just cry and cry that his leg hurt. He'd say over and over, "OW! MY LEG!!". :(

In between sobs he'd ask for Kaden. Bryson got this little clip of me trying to comfort him. If you turn the volume up enough, you can hear that he is crying for Kaden. And if you can tell....I am FIGHTING tears back hard. It was killing me to see him so uncomfortable and to not be able to 1. relieve his pain or 2. immediately provide the one thing he wanted...his best friend, his brother.

After two hours of trying different oral pain meds and him being absolutely MISERABLE, they decided it was best to turn the epidural back on for another day/night and try the same process again the next day. Around 10:00 AM they sent the "pain management" lady in to turn the epidural back on. The nurses weren't supposed to touch the epidural, only the pain management people. Anyway, she fumbled with the machine. I watched her try a few different codes and they kept saying error. I got distracted with Dylan after watching her do a few tries and the next thing I knew she said that it was all set and would take about 2 hours for the epidural to fully kick in.

We kept doing everything we could to keep him as comfortable as possible...waiting for the epidural to kick in again. The nurses were great about making sure they were staying on top of the oral pain meds and giving him whatever they could to try to help ease his discomfort. We tried distracting him with cartoons. We even found that he liked when we "rubbed" his leg, so we'd take turns scratching/rubbing his cast, which kind of helped. But for the most part...he would thrash around in bed, crying in pain. It was HORRIBLE!

A moment of distraction, amidst cries of pain.

We waited and waited for two hours for that epidural to kick in. Shortly after the two hour mark, Bryson and I were wondering why the heck this wasn't kicking in. Why wasn't he feeling even SOME relief!?! Bryson went over to the epidural machine to just look at it and there on the machine it said something about how the machine was OFF!!!! It was NEVER TURNED BACK ON!!! FIVE HOURS of watching our child thrashing around, screaming in pain...only to find out the one thing that was supposed to for sure be bringing him relief was NEVER STARTED!! We called the nurses in, they confirmed that it did indeed appear to be off. They called the pain management team up and they also confirmed that it was off. They didn't know how it could have happened, blah, blah, blah...we weren't the nicest to them. We were SO upset!! It wasn't the nurses fault. That darn pain management lady obviously messed something up. It was so frustrating! Anyway, a different pain management lady finally got it started and the nurses gave him some strong meds to knock him out so he could relax while the epidural FINALLY started working.

Poor boy! :( :( :( :( :( Finally relaxing...

 

While he was out, my parents came over with Brielle and Kaden.

 

We hung out for awhile, waiting for Dylan to wake up. Kaden LOVED playing with the wheelchair. And Brielle LOVED walking around with the walker.

 

 

Dylan finally woke up and was SOOOOOOOO excited to see Kaden (and everyone else)!! His epidural was working and he was finally comfortable and happy to finally be with his best friend!

They watched some cartoons together.

Family pic!

Dylan was so cute answering all of Kaden's questions about what was hooked up to him. 

My parents brought over an awesome goodie bag that our good friends put together for Dylan. It was full of so many amazing goodies to keep him entertained and happy. Dylan wanted it all laid around him and didn't want to put any of it away for awhile. It was cute!

They even made him a big sign that we hung on the wall right across from his bed so he could see just how loved he was.

After my parents left with the kids, we busted out some playdoh for awhile.

 

Then he even tried to eat some dinner. He got to choose what he wanted...dinosaur chicken nuggets, carrots, green beans, milk, and jello for dessert.

He colored for a little bit and talked to Grandma and Grandpa Fish on the phone.

We devised a way for him to lay down and watch his favorite show, Lazy Town, on the tablet, since the TV had limited cartoon selections.

He eventually fell asleep, comfortable. And again we had a decent night.

I was pretty proud of my french braid that I did on myself in an attempt to get my hair off my neck while I slept. Not bad for my first try. haha!

Wednesday, May 21st - After the previous day's drama, we were ready for a somewhat drama free day...hopefully with a lot less pain than the day before. They once again turned off his epidural around 6:00 AM. He did better with it off. He was still in a significant amount of pain all day, but there was definite improvement over the day before when it was turned off.

Popsicles for breakfast! He was okay with this part of hospital life. :) This was taken shortly after turning off the epidural so he was still pretty comfortable.

Around 8:00 AM he got his breakfast...all his choice again...pancakes, eggs, sausage, watermelon and orange juice. The epidural was off long enough to not be working anymore. He was in a lot pain, but we could distract him better than the day before.

After breakfast he started to get a lot more uncomfortable. Crying a lot more. We kept giving him more oral meds and were able to get him comfortable enough to sleep from time to time. He was mostly crying all day, but not the blood curdling, thrashing around in pain like the day before. So...improvement. Not a ton, but a little.

 

While he slept, I went for a walk for some fresh air.

He kept waking up crying in pain, we'd give him more pain meds when he was ready and he'd fall asleep again, usually holding his leg in pain. :(

We finally decided to take the epidural out of his back. He had been doing OK with it off. Not super comfortable, but that is to be expected considering all he had done. But it was better than the day before and we could for the most part keep him comfortable with oral meds. It usually required giving him a heavy dose of a strong med that would knock him out, but at least he had some moments of awake time where he wasn't screaming in pain. They don't like to leave epidurals in for too long because of the risk of infection, so we decided to go ahead and remove it, stay one more night to get a better control on the pain meds without having to knock him out every time and then hopefully leave the next day.

Around 2 in the afternoon, we looked out our windows to see these crazy clouds forming and hail falling.

All of a sudden we were all being rushed into the hallway because there was a tornado warning. YIKES! Dylan was NOT happy! He was just about ready for more meds so he was in A LOT of pain and then to have to be moved into a busy, crowded hallway. He was miserable. He just kept crying, "Ow! My leg! My leg!" Poor guy. And poor everyone in the hallway that had to listen to him scream for 20 minutes. The nurses were able to bring him his medicine while we were in the hallway, so towards the end of our hallway stay, he started to calm down a little.

 

Multi-tasking Daddy...comforting Dylan while checking the weather.

We were in the hallway for about 30 minutes before finally being moved back into our room. Shortly after, our doctor came in to check on us and showed us this picture that his friend sent him from inside the hospital. CRAAAAZY! I can't believe there was a tornado that close to us! Luckily it never touched down in our area. I believe it did touch down eventually, somewhere further from us, and didn't cause too much damage, thank goodness!

Dylan fell asleep once we were finally back in our room.

Grandma and Grandpa came by with the other kids for a visit. Dylan was uncomfortable but able to talk with them and play with some new toys from some more friends for a little bit.

 

Kaden spent most of the time in the wheelchair again. :)

Check out all the love from Dylan's friends!! Warms my heart!

With the epidural off and out, he was able to move around a lot more and he'd flip from side to side to stomach to back trying to get comfortable. At one point he was asleep like this for awhile...whatever made him comfortable! :)

It was another rough day with most of the day spent with him awake and crying in pain or so heavily drugged that he was asleep. There was some improvement to be thankful for, but it was still a very hard, heartbreaking day. Around 9:00 PM though he woke up and for about 45 minutes he was HAPPY! It was SO cute! He was making jokes and laughing and NOT crying!! He was talking to us and saying how his doctor's mustache should go up onto his forehead. He also said that he wished he could have 100 eyes! It was so funny! We couldn't stop smiling. After hanging out for awhile, he said he was getting tired and wanted to go to sleep but that he wanted to say a prayer and give hugs and kisses first. He wanted to say the prayer and it went like this, "Dear Heavenly Father. Thank you for this fun day........and the not fun day at the doctors. I know check ups are not fun. Amen." hahaha! It was SO cute! We went to bed that night hopeful that the next day would be better.

 

The night was long, but for the most part he did pretty good. Better than he had during the day.

Thursday, May 22nd - He woke up fairly happy. He chose waffles, eggs, bacon, a banana, and a smoothie for breakfast. He ate a decent amount of it, which was a great sign!!

His doctor's came in to do a final check on him and let us know that we would be discharged later that afternoon! YAY! We sure love Dr. H and his PA, Mr. M., and all that they have done for Dylan.

Kaden had his preschool graduation, so I ran home to go to that while Bryson stayed with Dylan. They kept busy with playdoh and coloring. Dylan was doing significantly better. Still uncomfortable, but handling the pain so much better. He'd start to cry and get upset as the pain meds started to wear off, but while the pain meds were working, he was comfortable enough to play and talk. YAY!

 

When I got back to the hospital, I walked into Dylan's room and found it empty. I found them walking/rolling the halls and a smile on Dylan's face!! It was SO great to see!!

Everything finally seemed to be heading in the right direction. We looked forward to an uneventful day, managing pain, and patiently waiting to be discharged from the hospital!

While walking the halls, we came across a toy room and thought we'd spend some time in here. Bryson was tired and went back to the room to lay down for a little bit. Dylan and I had fun playing with cars.

 

I went to the shelf of toys (behind him in the pictures above...so not far) to grab a different toy real fast and when I turned around, my heart dropped...fast! Under Dylan were a few pools of blood. I said over and over, "Oh my gosh, oh my gosh, oh my gosh!!" and ran to Dylan's side to try to figure out where it was coming from. It was dripping all down the side of his wheelchair, all over his wheels, under his wheelchair dripping from his seat. It was everywhere! The toy room helper lady ran to get a nurse. I finally realized that his IV had come out somehow and was dripping blood like crazy. Luckily it ended up not being anything major...but oh my goodness! It freaked me out!! Poor Dylan was totally oblivious to the fact that his hand was oozing blood, he was having fun playing cars, until I totally freaked out and then he lost it. I snapped this picture as we were waiting for the nurses to show up. I was holding some paper towels to his IV site. You can see most of the blood, but there were a couple more pools under his wheelchair that you can't really see. So....the drama free day went out the window!! That would've been too easy! haha.

Once the nurses got him checked out and bandaged up, and we got the wheelchair cleaned up as best as we could, we headed back to the room. They quarantined the toy room and all the toys Dylan was near while they cleaned and sanitized everything his blood could've come in contact with (blood in a toy room for sick kids is kind of a big deal...oops).

We walked into the room, Dylan was hysterical, and Bryson was like...what the heck happened? He left us for five minutes and I walk in the room with our child covered in blood. Go me! :)

His shirt was drenched in blood.

Once we got him all cleaned up and changed and calmed down, we were making plans to go for a walk again. Just as we were getting ready they came in to tell us that we had to leave our rooms again...another tornado warning. :) So we headed back to the toy room...which doesn't have windows so we were safe there, to play for a little bit until we could go back to our room.

He colored for a little bit.

And then he spotted the air hockey table and wanted to play. :)

      

Around 4:00 PM, shortly after being let back into our rooms, we were discharged! YAY!!!

We were all SO excited to go home!!

It was a rough four days! But we survived!!! I'm not going to lie...the recovery has been really hard this time. BUT....4 weeks later and Dylan is doing GREAT. He was really uncomfortable and in pain for a good two weeks, but we'd see little improvements each day. It's been almost five weeks since surgery and things are much much better. He's off of his pain meds totally now. He gets frustrated with his situation (not having a leg, his leg still being sore, etc) but overall he has been a champ!! He just deals with his situation and moves on and figures out how to do everything now even though things are a little different for now. We have had to make a lot of adjustments in our life for the time being, but we are doing okay! He is a pro at driving his wheelchair and he LOVES to go places and ride around. We just do what we can do....and JUST KEEP SWIMMING!

LOVE THIS BOY!!!

We had his 5 week check up the other day and they took his cast off! We thought they were going to be replacing it, but they said it looks really good and healed and that he could keep it off now. YAY!! Swimming...and baths....and wearing pants that couldn't fit over his cast....these are all things we now look forward to! :) He did great at his check up. He did NOT like his cast coming off, but it wasn't the easiest to get off so it was a little traumatizing for all of us. But once it was off, he was fine. His leg is very tender, but he's doing okay. He's crawling on it carefully and stretching it out as best as he can. Each day gets a little better and that is all we can ask for!

Such a cool dude waiting to go in.

There was a large wheelchair in the waiting room and we had a good laugh about how big it was compared to his wheelchair that he is currently using.

Check out his used and abused cast!! Proof that this kid plays hard no matter his circumstances! :)  But it was definitely time to get that removed! haha!

Getting it removed. :(

So tired after an exhausting visit. But no more cast! Yay!

He will be fitted for his new leg in a little over a week and then get his new leg to wear a week or two after that. We all can't wait!!! It hasn't been an easy road, but we have and continue to survive! It gets a little easier each day. This is but a moment. A moment that may feel like forever while IN the moment...but we know that soon we will look back at this and be grateful that we made it through, grateful for what we learned, grateful for how we have grown and know that it was all because of our Savior and because of the many prayers said on Dylan's and our behalf. Thank you everyone!