3 weeks...

It is nothing short of a miracle that Max went from this...

...to this in 20 days! Amazing! He loves showing off his scar and lifts up his shirt to show everyone that comes over to our house. 

It is hard to believe that 3 weeks have gone by since Max's surgery. His recovery continues to amaze all of us. He is no longer taking pain medication. I still feel like I should give him a little Tylenol before he goes to sleep, but he really does not need it. He continues to take aspirin daily, along with his other prescriptions twice a day (a diuretic, a heart arrhythmia medicine and a blood pressure medicine). He is back on his normal schedule and our family is falling back into our regular routine. 

All the glue, tape and bandages from surgery have all been removed and his scar looks amazing. The top of his sternum does protrude out a little at the top of the incision line, but we hope that will flatten down as it continues to heal. We saw his pediatrician this week and she practically started crying when she saw Max. She just could not believe how healthy he looked. We were all clapping and cheering when she checked his oxygen levels and it instantly read 96! 96! Are you kidding me?! Prior to surgery we were happy to get above 80, now he is in the mid-upper 90's! It is going to be a busy summer for me chasing after this kid. He now has more energy than he knows how to handle!

We see Max's cardiologist in 2 weeks. Until then, we will continue to send out thank you notes to the many, many people who found ways to provide service for our family. Max (and Morgen too!) received so many fun surprises from people. He now has a new stash of stuffed animals, coloring books, board games, crayons, stickers, jammies, puzzles and other toys. Multiple people provided meals for our family which was delicious and a blessing to avoid the cafeteria. We also received many encouraging cards in the mail, help with babysitting Morgen and a variety of other sweet acts of service. 

Overall, our family felt extremely loved and we will forever be grateful for all the help. I don't know the right words to summarize the past 3 weeks, but I do know my heart swells when I see my Mighty Max chasing after his brother and smiling up at me with his twinkle eyes. I know his body feels so good. His little spirit was not dampened at all by this surgery. If anything, he now has more magic and energy to share with everyone he meets. 

I love you baby!

Dr. Lacey (Max's pediatrician) and Nurse Sadie- they came to visit Max in the hospital. Max's primary care physician is actually his cardiologist, so his pediatrician did not need to come check on him at the hospital, she did because she loves Max and was worried about him.  She brought him a new game and variety of other little toys for him and Morgen. We love her so much and could not believe how sweet it was that she made a personal visit for our family. 

This is the poster I sent to the nursing staff that took care of Max in the hospital. I traced Max, added a little caption saying, "Thank you" and wrote out all the nurses names on hearts to decorate (just like his room was decorated). We loved all of our nurses and wish there was more we could do to thank them for taking such good care of Max. 

Home...

Our family leaving the hospital all together.
May 25, 2012

We are home! After 12 days in the hospital, my little family is all together relaxing at home. It feels great! It is amazing how fast and slow the time felt in the hospital. Now that we are home, it felt like we never left, except for the fact that we have a healthier Max! He feels so good. All he wants to do is run around and jump on the bed. His energy level is off the charts and it makes me so happy! We do need to limit some of his activities until his sternum in fully healed, he needs to take his medications and we need to limit the amount of fat he is eating but pretty much he is fully recovered! He loves being able to play with Morgen and I love that he is able to take a bath and wash off the hospital smell. He isn't ready to change out of jammies quite yet, but that is hardly a concern since we are staying close to home for the next week or so. 

While Max is full of energy, my energy level has crashed. All the adrenaline of having my baby in the hospital has worn off. I can't remember feeling so tired in my entire life. Just walking around is effort. Even after sleeping 10 hours last night, I still feel cloudy and exhausted. It will normalize soon. I am just grateful that I did not feel this way in the hospital. I was quite proud of myself for holding it together and maintaining enough self-care so that I had the energy to constantly watch over Max. 

I could not be prouder of Max and for the mighty battle he fought to regain his strength. I am in awe of his determination and happy attitude that aided in the miracle of his recovery. I am also extremely blessed to have Spencer by side. Through it all, he was my comfort. He took care of everything at home and managed to juggle time at the hospital, caring for Morgen and his work demands. I love that man. And Morgen. My sweet Morgen. His schedule shifted around each day. I know missing mommy, skipping naps and having a variety of people care for him over the course of 2 weeks was challenging at times. Through it all he was an angel and genuinely cared for his little brother. 

The morning that we got home, Morgen approached me privately and asked in a concerned tone, "So is Max's heart all better now?" 

I could tell by the way he asked that he had been worried about asking this question for a long time. He waited until we were home to find out. I told him, "Max's heart is always going to be a little different, but the doctors fixed it so now it will be healthy."

Morgen's eyes lit up and responded, "So Max's heart is healthy now?! Just like my heart and your heart and daddy's heart?!!" 

I nodded. 

Morgen smiled and then turned around to join his brother in a game of jumping on the bed. 

Max's heart will always be a little different. It will never be the same as yours or mine, but thanks to a team of incredible doctors, Max's heart is now healthy. And my heart will forever be grateful for the blessing of being Mighty Max's mommy! 

Wrapped in love...

We have loved having Max's room decorated with all the hearts from everyone that cares about him. Another project that I wanted to do for Max was making him a quilt. We asked family members and a few close friends to contribute a square of fabric that I could piece together to make him a special quilt. I thought it would be so sweet to have Max snuggle up with his quilt, as if he was snuggling up with everyone that loves him most. Everyone sent such fun fabric and Max loves looking at all the squares, pointing out his favorites and trying to match who each fabric is from. He loves his "heart blanket" and I love what each square represents. We have had so much support, more than we ever expected, during this surgery and I know that is why Max's recovery has been going so well. Love is a magic medicine!

Each square is from someone who we love and who loves Max in return. Each square is different and was thoughtfully selected. The quilt turned out exactly how I wanted (with the help of my mom! Thank you!!!). It makes me happy looking at his "heart blanket" and it will be a treasure we will always keep. 

One step closer...

Max's chest... center incision which is healing nicely, center drain tube that is attached to the bulb and 2 plural caths on either side of his lungs

We are still here and still waiting for Max's body to be healthy enough to go home. Based on his energy levels, I would say he is ready, but there is still fluid draining which means there is still internal swelling. His center drain tube and right plural cath have stopped draining so those two were removed this afternoon. Now he only has his left plural cath. That left plural cath is needing to be drained twice a day. It is still putting out a high enough volume of fluid to keep us here, but once that amount starts to taper we can be sent home and I can be trained on how to drain his cath at home. We would need to call his doctor every afternoon to report the amount of fluid draining and once it stopped we would come back to the hospital to have the cath removed. 

With 2 of his 3 drains removed we are one step closer to going home! We are so close. Before we get the okay to leave he will need chest x-rays, an EKG and an echo-cardiogram done. Hopefully we will have more time to talk to his doctor tomorrow to ask when he predicts we will be going home. Dr. King did stop by this morning but Max and I were both asleep. It is amazing how much rest we are both getting. It is so different than our previous experiences at the hospital when they woke Max up every 3 hours. Last night we went to sleep at 10:30. He had to be weighed and take a medicine at 5:30. But then we both fell back to sleep from 6-8:30. It felt great! 

So not a whole lot to report right now. We are just trying to keep Max from being bored and patiently wait...

Silly face while wearing his Avenger jammies and chucks...

Kicking his feet up while he munches on his lunch...

Angel face!

It's not all fun and games...

Overall, I would say that Max has been having a pretty great experience at the hospital. He can drink chocolate milk whenever he wants, he has complete control over the movie selections, he can play in the toy room, etc. Just today he got a visit from Snuffles the Clown. She sang him a song, did a few magic tricks and blew bubbles for him. He loved it!

I love that so much effort is put into making the children and families comfortable during the hospital stay. Tonight is movie night so a volunteer brings around a cart filled with popcorn, soda and candy that is free to all patients and family. Once Spencer and Morgen get here, we are going to load up on some treats and snuggle up as a family and watch "Madagascar" together. 

There are lots of great distractions to keep Max happy; however, he is in the hospital and there are parts that he does not like. He does not like taking his medicine. It is yucky. He does not like having tape or band-aids taken off. He has sticky stuff all over him and his skin is sensitive so he really puts up a fight when his bandages needs to be changed or removed. He does not like his tubes to be drained. The nurses have explained that most patients feel a suction sensation, not so much pain, but he gets upset and says it hurts. He does not like getting baths or having his diapers changed. I do that part and normally it would not bother him but I think it is just one more way that someone is touching him and bothering him- so he cries. 

It is sad to have him be uncomfortable, but in the midst of the "ouchy" stuff he says things that are so sad, they are cute. Here is a list of some of the expressions he will shout out whenever someone is doing something he does not like:

• I don't want anyone to touch me!
• I want to go home!
• No more ouchies!
• I don't like tape!
• I don't like the wires!
• No! No! No! Stop it!
• I really want daddy!
• This is the ouchy part!
• Stop it! It's done!
• I duper, duper don't like this!
• Someone is touching me!
• Let's take a break!
• Don't do it!
• But I don't want the medicine!
• What are you doing?
• But I really want a treat, right now!

It breaks my heart to hear him shout those things out, but I know the discomfort is only temporary and within minutes he is back to playing Cars or eating a snack. The fluid around his heart is drying up so the surgeon is going to pull his center drain and right drain tomorrow! His left drain is still putting out enough fluid to keep us here but it is tapering down. Hopefully we will be home by the weekend!

Getting a sponge bath. Saddest face ever huh? Those little shower caps are awesome- you just put them on his head, massage it around and then towel dry when you are done. It has rinse-free shampoo in there and they work great! He still doesn't smell yummy but at least he doesn't totally stink like hospital. 

Day after day...

Here is a glimpse into how Max spends his days at the hospital... 

Walks in the wagon. We take at least 5 walks a day. We go all around the hospital. We look for elevators to ride, we watch the tractors out the window and do a few laps around the Children's garden. Although, now he is walking by himself more rather than riding in the wagon.

Eat healthy snacks. 

Eat treats whenever the nurses allow it.

Play video games with dad.

Play Sorry (we play this a lot and Max has developed his own rules so he always wins!).

Snuggle mommy (this is my favorite!).

Make sour faces at the nurses whenever they enter the room. He is showing his pulse-ox monitor on his finger. This morning his oxygen level was up to 97!!!! The nurses still love him even though he sticks his tongue out at them and tries to hide under his blanket whenever they approach his bed. 

Hang out with brother as much as possible. This is the first picture of the two of them that I can actually see them looking alike. I love these two with all of my heart!

 Max also plays in the toy room as much as possible. Here he is scooting around on a little bike and playing trains. Obviously, he is feeling great and not in pain! Hopefully his tubes will stop draining soon so we can bust outta here!

One week down...

The view from where I am sitting right now...

7 days in and Max is still doing great. I am running out of adjectives to describe how he is doing... amazing, fabulous, remarkable, great, super, fantastic, etc, etc. Last night I slept at home and Spencer stayed at the hospital with Max. It was a nice break and I slept like a log! It was fun to wake up and spend some time with Morgen, take a long, hot shower and check on my little house. I also had to say good-bye to my parents and sister who were here helping for the weekend (Thank you for EVERYTHING!!!). When I got to the hospital this morning Max was watching Kung Fu Panda, finishing breakfast and totally relaxed. Everything seemed the same as yesterday; however, once Max got out of bed I realized that he is heaps better than yesterday. He wanted to walk to the the game room rather than ride in the wagon. He was practically galloping down the hall and started running to beat Morgen to the elevator button. He is climbing up and down from chairs all by himself and just all smiles! I love it! My little boy is back! He still has his draining tubes in that can be uncomfortable but other than that, he is feeling good. His chest is starting to itch a lot too, but that just means the incision is healing. 

His cardiologist did an exam and echo yesterday. He confirmed that everything with the surgery looked good- all the connections and stitching done during the operation look clean and are not leaking, Max's blood pressure is in the right range and his heart is pumping strong. The only concern he saw was a pocket of fluid around his heart that is not draining. They are going to give it a few more days to see if it drains naturally but if not, then they have a steroid drug that should help. His doctors indicated, based on the amount of fluid still draining, that Max should be here until at least Wednesday. 

Right at this moment I am sitting on the couch with my feet up, Morgen is playing a video game on the computer while Spencer and Max are playing a fierce game of Foosball. It is so nice for us to all be in the same room and to relax together. I love my little family and I could not be prouder of my little warrior, Max! 

Walking to the elevators in his new jammies!

P.S. Before I could finish this post Max decided he wanted to go to the other game room and play Sorry. He climbed off his chair and said, "I want to go play now. I can go by my own!" And then opened the door all by himself and ran to the elevator to push the button. Spencer had to chase after him. Silly, healthy Max!

5 days is a long time...

Max giving "thumbs up" to his daddy after eating a bite of yummy chicken noodle soup. He has a heart sticker on his forehead and a Toy Story sticker on his cheek from playing earlier in the day. 

In the grand scheme of things, 5 days is such a short amount of time, but in hospital terms, it is a very long time. Max has been doing so great. Each day is encouraging and filled with so many proud moments as I watch my boy get stronger right before my eyes, but each day is also very long. There is a lot of monotony about the hospital that can wear you down without you even realizing it. I'm starting to get to that point. Even though we have support surrounding us and tons of help, it is still hard to be here day after day. Tonight I can feel the weight of all my stress and sleepless nights wearing me down. My body aches. I miss my family. I miss eating dinner together and going through our night routine of baths and playing games together. I miss exercising and fresh air. I miss sleeping in my own bed with Spencer and walking up to my two knuckle-head boys wanting to watch cartoons. I know this is temporary and probably by the end of next week I will be home and settling back into our normal routine. We have been blessed time and time again since we have been here, but it is still hard. It is still exhausting. There isn't a way to make it better. Being at the hospital is just hard no matter what. We just have to do it. We just have to stay optimistic and pray that Max's recovery continues going as well as it has been. 

Cutest room in the hospital...

So ALL the hearts are up and Max's room looks amazing! So bright, so colorful and so, so happy! We counted them up today and Max has almost 500 hearts decorating his walls. Each one is unique and tells a story about the person it is from. It is so inspiring to me and Spencer to have Max literally surrounded by love and support from our family, friends and even people we do not know. Hundreds of people have rallied around Max to provide love and encouragement. Both surgery and recovery have been hugely successful so far and we know it is because he is being blessed by each of you from all around the country. Thank you for sending your love to Max. We think his room looks pretty incredible. I only wish I had a better camera to really capture what it looks like in here. In person, you can't help but smile when you scan the walls filled with every shape and color heart possible. 

Can you find your hearts???

Day #3...

Today was a super, super day!

Waking up with huge smiles and surrounded by all his best friends...

A long walk down the hall with the help of daddy and nurse Erika...

After his walk he needed to relax with some Cars...

Next, he was transfered out of the ICU to the Cardiac floor and was really excited to play Sorry with Morgen and Uncle Daniel in the toy room...

Since he is off all his monitors mommy can climb in bed with Max and snuggle up while reading books...

Max topped the night off by playing trains with daddy and going for a walk in the wagon...

All in all, it was a FANTASTIC day! Lots of playing time for Max. As his engery levels go up, his pain levels go down. Believe it or not, this kid, who just had open-heart surgery 2 days ago, is only taking Tylenol for pain relief. Tylenol. Crazy! Kids are remarkable.

Our next goals is getting him to eat and drink a little bit more and to start walking on his own. Right now he prefers scooting around on the floor to get from place to place rather than being on his feet. The doctors are also wanting him to start taking all his medication orally rather than through his IV. He does not like the taste and usually ends up throwing up. It is frustrating but he is slowly getting better at it. Hopefully tomorrow will be as great as today!