Thursday, August 28, 2014

Recovering at Home - A Week of Recovery

When we got home, Max asked to go straight to Mommy and Daddy's bed to watch a movie. I enjoyed some snuggle time with my boy.

Lilly and Meg came over and brought us dinner and it was delicious! Walker and Allison also came by for a quick visit and brought some goodies for Max and lots of food for us to eat over the next few days. He really enjoyed seeing his friends and we were so thankful to not have to cook meals. We have awesome friends!

First night at home in his bed since surgery. He was really scared to sleep in his bed and tried to talk us into letting him sleep in his bed. After a lot of talking about it, he agreed to sleep in his bed. It was kind of a rough first night at home and he required a lot of pain medicine, but we are so thankful to be home.

Friday - First day at home
Watching a movie with Dede
It was a lazy day and we all tried to get caught up on sleep and we watched a lot of movies. Tripp, Jack, Crew, and Jess came by for a quick visit. Max loved seeing the boys and we really appreciate everyone coming over.

Our first outing since surgery. Max wanted blue ice cream. They didn't have any, so we got cake batter ice cream and added M&M's and sprinkles to it. He was happy with that.

Friday night was a really rough night. He woke up every 30 minutes to an hour crying from 8pm-1am. Max's incisional pain was seeming to get a lot better, but he was still requiring the maximum amount of pain medication possible. He seems to be having a whole lot of trouble getting comfortable in bed and on his pillow. I knew this would be a problem because he is normally strictly a stomach sleeper. Because of his incision, this is not possible, so he is having to sleep flat on his back. We just weren't anticipating that sleeping would be this big of an issue.

Mimi came by a few times this week to visit Max.

Having a rough moment...pain got away from him

Once his pain meds kicked in, he gave Lola hugs and kisses. He hadn't seen her in a week and missed her so much. It was very clear that she missed him too.

My cousin, Meghan, and her husband, Jeremy, sent the cutest and most thoughtful package to Max. It was filled with superhero books, toys, stickers, pajamas, etc. Max loves the Iron Man toy and immediately began playing with him. Jeremy picked it out for him especially because Iron Man has a pacemaker too and he thought Max might like that. He was right!

Meghan also made Max a Cardio Max Superhero cape and mask. They included a gift card for the Build a Bear store so Max could pick out his own bear. Then she included a matching cape for the bear. What an incredibly thoughtful gift! Max is going to wear his cape to the AHA Heart Walk in October too. I'm so excited for him to show it off!

We now have a superhero in our house!

Max asked if he could check Iron Man's pacemaker. I said yes, so he went and got his machine we check Max's pacemaker with. He knew exactly what to do without help and he told us Iron Man is now very healthy!

Snuggling with Daddy, Lola, and Iron Man

Saturday night was a rough one as well. I basically had to sleep in the bed with him because he cried off and on from 9pm-3am. I felt so terrible that I didn't know what to do to help him feel better. Instead of his pain getting better, it seemed to be getting worse and he was having more and more trouble sleeping at night. He started to verbalize that his chest wasn't hurting, but his neck and back were hurting. With little sleep for both of us, we got through the night.

Max has hardly been eating anything, so Daddy made him a big breakfast with all his favorites to try to get him to pig out.

Play doh and puzzles
Feeling like playing this morning

Dede loves playing with Max.
We are so thankful she was able to come spend several days with us. She wanted to spend time with Max and help Tyler and me. We loved having her here and she was so helpful!

Carmen came to visit Max and brought him the Jungle Book movie and a remote control helicopter. Max loves Carmen and he always wants to go to the hair salon to visit her every time he is in Hendersonville.

He was due for a haircut, so Carmen cut it while she was here.

Then we all shared a delicious meal together that Mimi and Carmen prepared.

Dede and Pop want to sell their house and move to Franklin, so Daddy and Max helped her find houses online. We drove around looking at neighborhoods twice while Dede was here. It was really nice to get out of the house. Monday night was, again, kind of rough, so I decided I would take Max to the chiropractor Tuesday morning.

Tuesday - 1 week after surgery
Ms. Betty, Max's Sunday school teacher, dropped by for a visit and brought him a Jake and the Neverland Pirates toy. That was so sweet! Ms. Betty was his teacher last year and will be again this year.

Dede went home today too. We are so thankful she was able to stay with us the past several days.

As it turns out, I am really glad I took him to see our chiropractor, Ben. Ben said his spine was subluxated in a similar pattern as someone that received whiplash from a car wreck. We think he was so stressed from the whole surgery experience that it caused his neck and spine to get out of alignment. That makes perfect sense because he wasn't complaining of incisional pain at all; it was just his neck and back that were bothering him. After his adjustment, he slept a full 12 hours straight with no pain medication that night! We were so excited but I also felt so guilty for not taking him in sooner. We will go for a few more adjustments before the problem is corrected, but I can already tell he feels remarkably better.

Feeling good today...making Mommy some coffee

Playing grocery and cooking some lunch
So glad he is starting to feel back to normal 

Sunday, August 24, 2014

Time To Go Home!

Good morning!!! Last night was much better than the first night and Max and I both got a few stretches of sleep. Daddy went home for the night so he could get a good night's rest too. In the morning, Lara came by for another quick visit and it was good to see her although Max was still mad at her. The last time he saw her he went into surgery. We all had a little laugh about it.

Snuggling with my buddy. During the night I spent a lot of time snuggling with him in his bed. He asked me to and I loved every minute of it.

Then, Nancy, the pacemaker nurse, came by to test Max's new gear and show us how to test it from home. 

Time to get up and move a little, but only after a good morning kiss.

Feeling a little like "Super Max" this morning
(courtesy of the Bailey Family)

We sure have been through a lot this week, but we made it and now we can go home. Thank you to everyone that prayed for us, sent us encouraging notes, and sent gifts to Max. We are blessed beyond words and can't thank you enough!

I think Max was very excited to be going home although it took LOTS of persuasion. He finally got comfortable at the hospital and trusted the staff after 2 days. When we told him it was time to go home he cried and cried and said he wanted to stay. I think that was because he finally got a handle on the routine at the hospital and going home was going to be a whole new ballgame.

Look hard...this is the only picture you will probably ever see of Max sleeping in the car. He fell asleep on the way home and we couldn't believe it. He has never been a car sleeper.

Once we got home he was very happy. All he wanted to do was watch movies in Mommy and Daddy's bed. 

He tried to talk us into letting him sleep in our bed, but after a lot of discussion we convinced him he would sleep better in his own bed. 

Post-Op Day 1

So, the first night was a really rough one. We had a hard time getting Max's pain under control until about 1am. Mimi and Pal stayed until bedtime and then Max, Tyler and I all got ready for our sleepover. The problem was that Max and I couldn't sleep. Tyler slept on the pull out couch, but I couldn't get comfortable and my mind was racing. Max didn't recover well from the anesthesia and because his pain control was still not adequate, he didn't sleep at all. He would close his eyes and about every 20 minutes he would cry out looking for Tyler and me. Then when the nurses came in to give meds or take vital signs, he got really scared and would cry. It turned out to be easier on all of us if I just sat beside him in the chair so every time he opened his eyes he would see me. That seemed to help keep him calm. 

The morning after surgery

Max and Nurse Heather

I do have to say that we had the most amazing nurse, Heather, for 2 days in a row, and Max ended up getting to the point where he trusted her. The cover on his arm just protects his IV. When the nurses came in to flush his IV or to give him medicine, they would make sure to always tell him, "No owies; I'm just going to give your arm a drink because it's thirsty." When they would take his blood pressure, they would say, "No owies; I'm just going to give your arm a hug." They always made a point to let him know that they weren't going to hurt him every time they came in. This was really helpful because he kept saying he didn't want to get another pacemaker. They would always reassure him and let him know that there would be no more surgery. That part was over and now he just gets to get better. I think this is part of the reason he wouldn't sleep either. He was told in pre-op that he would go to sleep after breathing through the mask and then when he woke up the surgery would be over. I think this is why he was scared to go to sleep that first night. He would open his eyes and say that he didn't want to get another pacemaker. 

Sweet Daddy tried to get Max to eat some breakfast, but he just wasn't interested. He hardly ate anything the whole time we were in the hospital. I can't blame him. He had so much manipulation in surgery with his chest and abdomen that I'm sure everything was sore so he didn't feel like eating. 

He was also terrified to move at all, so he kept wanting us to adjust him in the bed because his back was getting stiff and sore. All he wanted to do was snuggle his stuffed animals and watch movies in bed. He was definitely grumpy just wanted to be left alone to lay there. 

 Pal came to spend the day with him on his day off work. We knew we had to get him up and moving, so we decided to take him on a wagon ride. Max was really mad about this, but it was good for him overall. It helped show him that he could move a little and it wouldn't hurt too much. 

Sweet Pal trying to soothe Max when he didn't feel so good

After our stroll around the hospital, we opened the gift box that Mimi's staff gave Max. It was amazing and incredibly thoughtful! There were all kinds of snacks, toys, books, puzzles and fun things for Max to play with. Honestly, the highlight of his day was opening that box. He hadn't smiled or been happy all day until Daddy helped him open the box. The box even had a Superman shirt and a flashlight. I think the flashlight was his favorite because he liked shining it in the nurses eyes every time they came in the room. 

First smile of the day from our little patient
Daddy is really good about getting him to smile, laugh, and make light of any situation.

Reading "Brown Bear, Brown Bear" with Daddy

Max still wasn't hungry, so Pal tried to get him to eat his favorite food, Gigi's chocolate cupcakes. We thought that would work for sure, but it didn't. The little guy just wasn't hungry. 

Time to take a rest with the bear he affectionately named Bozo Bear. Thank you to our friends, Paul and Beth Frankenburg, who let Max borrow this special bear for his heart surgery. The bear was given to Paul by his parents when Paul had his first heart surgery in the 1970's. Since then, they let people borrow the bear when they have heart surgery to help them be brave and feel comforted. Max absolutely loved this bear and loved the idea that Bozo bear has a pacemaker too. Poor Uncle Eric came to visit, but Max was so tired that he slept the whole time he was there. He was due for a good nap though! Later that afternoon Aunt Chelsea came by for a visit too. She brought him the most thoughtful gift - a doctor costume so he could pretend he is a doctor. Of course he wasn't crazy about it when she gave it to him because he was still mad at the doctors for giving him a new pacemaker. He told her, "I don't want that!" We all just laughed, but of course now he thinks it's so cool. 

Just relaxing!

All tucked in and time for bed.

Wednesday, August 20, 2014

Surgery Day: Getting a New Pacemaker

The day we've been waiting for... on August 19, 2014, Max got his new pacemaker. We got to the surgery waiting room at 10:30 and our good friend, Lara, was waiting to greet us. Lara works on the pediatric surgery floor and was the charge nurse for the day. We couldn't have been more thankful for her because she took such good care of us. She took us back to the pre-op area and helped us get ready for surgery. The sitting and waiting was really hard on all of us, but Lara made us feel so comfortable. They took vital signs, changed his clothes, introduced us to the nurses and anesthesiologists that would be taking care of him, and also let Max talk to the Child Life Specialist again. 

Playing with toys in the holding area
Sporting his "Jake and the Neverland Pirates" jammies that he got special for today

Lara taking his vital signs

The staff was all so wonderful and it was so special that Lara was a part of our special day.

The Child Life Specialist visited Max again and went over exactly what would happen today. He even got to pick out the flavor chapstick that he would smell in his mask when he went to sleep. Of course, he kept repeating that he didn't want a pacemaker and that he also didn't want to go night night. That part was really hard for all three of us, but thank goodness the markers saved the day! When Max got really anxious the Child Life Specialist brought him markers so he could color all over his bed. He thought that was the coolest thing he had ever seen and so did we!

That kept him busy and relaxed for a while.

Then he started getting really anxious again so we decided to pre-medicate him with Versed. This is a picture of before the Versed while watching Mickey Mouse on the IPAD....

...and here is about 10 minutes after the Versed was given. He became very relaxed and calm.

Surgery took about 2 hours and couldn't have gone any better. Mom, Dad, Eric, Chelsea, Tressa Kate, and Nana waited with us in the waiting room. It was really nice to have family there to help support us. When it was over, Dr. Mettler, the surgeon, came to talk to us and said that everything went better than expected. It was nice to have that part over with.

We asked to keep his old pacemaker so we could show Max what it looks like, so Dr. Mettler graciously gave it to us. 

Here is what it looks like. As Tyler said, "Thank you pacemaker for doing your job for the past 3 years!"

Then we were called back to recovery and the fun began. Max had a really hard time waking up from anesthesia and was terribly uncomfortable. He stayed in recovery where we held him for about 2 hours before he was moved to his room on the cardiac unit.

His incision is significantly longer than his initial one because the new generator is larger. 

Dr. Donahue was the anesthesiologist that took care of Max. After talking briefly, we found out that he knows Tyler's whole family that lives in Hartford, WI. What a small world!

All tucked in with Monkey beside him.

Uncle Eric, Aunt Chelsea, and Tressa Kate came to support us and visit Max. They brought Max a dress up costume so he could play doctor. What a thoughtful gift!

Mimi and Pal stayed for a long time, as well, and brought us all kinds of goodies for us. Before surgery, Max asked for not one, but two, chocolate cupcakes. Pal was so sweet to go them from Max's favorite cupcake store so he could eat them when he felt like it. 

We are so overwhelmed and comforted by all of our friends and family that have prayed for us, sent us well wishes, and sent Max gifts. We are so incredibly blessed in so many ways and are so thankful for you all. Thank you also for your continued support as Max heals from his surgery over the next few weeks. 

Dr. Mettler, the cardiac surgeon, came to visit Max the evening of surgery. It is beyond words how thankful we are for this man as well as his colleague, Dr. Radbill, who is Max's electrophysiologist. It's overwhelming for us to think about how these men impact families lives everyday in a way that is  literally lifesaving. I wonder if they will ever know how much these families appreciate them?

Dr. Radbill