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!

Day #2...

Wanted a granola bar and then promptly fell asleep, so we ended up with melted chocolate all over his face and hands...

Max got a new friend from Great Grandma B. The new Angry Bird stuffed animal has been his constant companion since...

Sad face because it hurt a lot sitting up for the first time...

Standing up with lots of help from his nurse. That face just breaks your heart huh?

But all the hard work paid off because he got to cozy up in the chair, surrounded by pillows (the marshmallow chair, as we have been calling it) and take a nice long snooze.

He slept so peacefully in the marshmallow chair. He looked like a little angel. 

Overall, he did fantastic today! He ate, he drank, he slept, he took his medicines, he got out of bed... all the things the doctors wanted him to be doing today. The only thing we are struggling with is getting him to go potty. His little bladder is full but he can't seem to relax enough to let it out. Tonight I am hoping that he will sleep more peacefully and let his little bladder relax. 

It has been nice to see his personality coming back more and more. He is making little silly remarks and pulling his stubborn attitude when it is time for medicine. He is still in a lot of pain but it comes and goes throughout the day. We have watched Cars 2 about a dozen times today, but whatever keeps him happy right? 

The team...

Right now there is a group of 12 people right outside Max's room all talking about HIM! Cardiologists, surgeons, physician assistants, dietitian, child therapist, respiratory therapist, nurses, floor manager, head nurse, and physical therapist. It is incredible that Max is literally surrounded by such a talented, caring and brilliant team. We have some big milestones that the team wants him to reach today... catheter out, arterial line out, eating solid foods and, the big one, getting out of bed. Dr. King, his cardiologist, suggested bubbles to be the motivator to get out of bed and walking around. Max is pretty whiny and can't seem to figure out what he wants. One minute he wants to watch a movie, then he wants a snack, then his tummy hurts, then he wants to have a drink, etc. He is dealing with a lot. Whining is to be expected. 

Day #1...

Checked in and feeling happy...

Walking to the OR waiting room and feeling a little loopy after getting some "happy medicine"...

Right after surgery, stable in the PICU...

Visit from brother after waking up...

Worried mommy...

First drink of apple juice. Tasted good but when he was done he said, "But I wanted a strawberry smoothie!"

Bypass Machine...

Max is off the bypass machine. I can finally feel a little relief. As far as we can tell, everything with the surgery has been going very smoothly. We are getting regular updates and the hospital has felt very calm. The thing that feels so weird is the fact that I do not know where Max is. I know he is, obviously, in the hospital and I know he is on the basement level, but I do not have any idea where on that basement level he is. He is in a room surrounded by the surgical team. I always know where my kids are. Even if I am gone and they are with a babysitter, I still know exactly where they are. Right now, I don't know where my Max is and it makes my heart ache. According to the doctors he is doing fine, but until I see him I will not KNOW that he is fine. I can sense him. I know he is close but I need to see him. I need to feel his skin. I need to kiss his head. I need to touch his toes. I need him right now. Max is the only thing that will make me feel better.

Keep fighting my Mighty Max! 

Max = The Hulk...

Last night I asked Max if he was going to be strong during his surgery. He quickly responded, "I'm going to turn into The Hulk during my surgery." That comment typified Max! He is so strong and silly. 

Then this morning Max woke up at 4:30 a.m. and was calling for Mom and Dad. I went in there and snuggled my boy. I watched as he fell back asleep and smiled as he dreamed. I went back into our room at 5:30 a.m. to get Mary up and we got ready for the day. 

After waking Max up and giving him a huge snuggle, we walked him out to the car. He kept asking where we were going and why it was so early. We told him that we were going to the hospital for his surgery. 

On our way to the hospital, Max was really chatty. He talked about everything he saw. He also said, "Today, the doctors are going to fix a little piece of my heart that is broken, right?" He is such a tough little guy!

At the hospital, we were checked in right away and taken back to the "Day Surgery" location. Our nurse was real sweet. After getting his stats checked out - height, weight, prescriptions - we waited. Max got to watch Cars 2 (which he absolutely loved) and after about 15 minutes we were on our way.

Literally minutes later, the nurse and the doctor came in and wheeled our little boy away. Watching him being wheeled away was hard. We walked up to the waiting room and now we are waiting for our first update. We'll keep you all updated throughout the day. Please keep all your prayers and thoughts coming for our little Max! 

Max "The Hulk" Kelly on the way to the hospital...

(This post was written by Spencer)

Mother's day...

Today feels a little bittersweet. 4 years ago today, I found out that I was pregnant with Max! It was probably one of the happiest, most memorable days of my life because, not only was I excited to have another baby, but it was also the day Spencer graduated from law school. I remember feeling so light and happy that day. Just grinning from ear to ear. Fast forward to this Mother's day, I feel very different. I love having a day to just relish the blessing of being a mom. My day will not be filled with breakfast in bed and carefree "princess treatment" from Spencer and boys because tomorrow morning we are taking our boy to the hospital. My day will be filled with packing Max's hospital bags. It makes me cry. Filling a bag with all of Max's favorite things. Things that we think will make him feel comfortable while he is so weak and sad. My day will be filled with packing Morgen's bags. It will be a long time that I will be away from Morgen. I'm use to having him be my sidekick going to the market, driving in the car, helping me make dinner, etc. But for the next 2 weeks he will be shuffled around and I will miss spending time with him and listening to him explain the rules to the new game he made up and peeking on him while he sleeps because I will be at the hospital with Max. My day will be filled with trying to think of all of Max's favorite things to do and trying to fit all those things into the day because I want him to have the happiest day ever (I'm sure some bowling, some Sorry, some trains and puzzles will be involved). My day will be filled with reviewing hospital paperwork and double checking the time we need to check in (6:00 am). I will cringe over the fact that Max can not eat or drink anything after midnight and panic that he will wake up feeling hungry. I will have to give him a bath with "a new bar of soap" and "wash [his] body with a full lather thoroughly for 3 minutes" and then "dry [him] in a freshly laundered towel" and "dress [him] in freshly laundered pajamas." And then I will feel bad that in the morning I will have to wipe him down again with antibiotic wipes given to us from his doctors that will leave his skin feeling sticky and smelling like the hospital. Today I will have to excuse myself and go cry silently in the bathroom so my boys do not worry about me. Tonight I will check on Max after he falls asleep and touch his hand and wait for his fingers to flinch and watch his chest to make sure he is breathing and give him a kiss on the forehead. Tonight I will let Spencer gather me up in his arms and hold me while I cry. I know we need to take Max to the hospital tomorrow morning. I know he needs this surgery but my mommy heart is going to fight it and try to think of another way to avoid all this "ouchy" for my son. 

So while this day is going to be filled with very hard things, I am going to do my best to remember that it is another wonderful day that I get to be a mom. It is a perfect day to beam with pride about the fact that I have 2 amazing sons who I love with all my heart. I love being a mom. It is hard. Being a mom is hard but it is worth it because Morgen and Max are mine forever! 

Pre-op appointment...

Today we spend 3 hours at the hospital. There is a lot of paperwork and a lot of tests that need to happen before surgery on Monday. Here is the run down of how we spent that time...

9:50 Arrive early for our appointment and wait

10:00- 10:25 Wait to meet with the surgeon. He was paged but never responded

10:25 Check in for lab work to start and wait

10:30 Max had a chest x-ray done- which he thought was just like getting his picture taken, complete with saying, "Cheeeeese!"

10:35-10:45 Wait while watching Price is Right

10:45-11:00 Meet with a nurse to review Max's medical history and talk to the surgeon. Max's surgeon is a remarkable man and answered all of our questions. Spencer and I both felt really calm after talking to him. 

11:00-12:00 Tour of the hospital with the Family Life Specialist. We got to see the rooms Max will be staying in, the play rooms, the nursing stations, etc. 

12:00-12:15 Wait while watching Dumbo

12:15-12:30 Blood work for Max- he cried the whole time :(

12:30-12:45 Wait, continue watching Dumbo

12:45-12:50 Max had an EKG- he cried the whole time :(

12:50 Back in the car to head home for lunch and naps

It was a long morning but a necessary step before surgery. The boys were champs. Now we just wait for Monday...

The boys showing off the view from one of the hospital rooms...

They were escorted around the hospital in this darling caterpillar wagon...

3 Angry Bird stickers + 1 Angry Bird band-aid + playing Angry Birds and Max was still crying after his blood work. So sad.

Fontan...

The procedure that Max will be having on Monday is called the Fontan. It is actually a 2 step procedure and he had the first part performed when he was 3 months old, now it is time for the final step. In a previous post I explained Max's anatomy, you might have to refer back to that to help understand the specifics of this surgery.

Since Max is missing his right ventricle, the doctors want to essentially reroute Max's blood to by-pass the right side of his heart. The right side of the heart has the function of pumping blood to the lungs, without his right ventricle the doctors need to get the blood to his lungs another way. The Fontan is how they do that.

The Pulmonary Artery (purple) carries blood to the lungs. The Superior Vena Cava (SVC, orange) is the large vein that carries blood from the upper part of the body to the heart. The Inferior Vena Cava (IVC, orange) is the large vein that carries blood from the lower part of the body to the heart. In a normal heart, the SVC and IVC carry blood to the heart, the right side of the heart then pumps the blood to the Pulmonary artery and then flows to the lungs.

 

Normal heart- showing the section where the SVC/IVC cross the Pulmonary Artery.

When Max was 3 months old, he had the first part of the Fontan procedure done, also known as a Bi-directional Glenn. During this surgery the doctors connected the SVC directly to the Pulmonary Artery. By doing that, the blood from the upper part of the body started to flow directly to the lungs, rather than pumping through the right side of Max's heart. The IVC still flowed into the heart.

SVC connected directly to the Pulomonary Artery. The IVC still flowed to the heart. 

 Now, for the final step of the Fontan, the IVC will also be connected to the Pulmonary Artery. After this surgery, all of Max blood will flow directly to his lungs, through the Pulmonary Artery and by-pass the right side of his heart. 

Both SVC and IVC will connect to the Pulmonary Artery. No blood will flow into Max's heart that is not coming from his lungs. 

How the Fontan benefits Max is remarkable. After this surgery his heart will have less work to do. He is missing 30% of his heart so the chances of his heart wearing out are much, much higher than another child or adult with a normal functioning heart. When Max was born, the single left Ventricle was doing double the work- pumping for both the right and left side of his heart. The Fontan takes away the work of the right side of the heart by having all the blood flow directly to the lungs. After this, his left Ventricle will only have to do the work for the left side of his heart- it won't have to work as hard. If the left Ventricle does not have to work as hard that means that it will continue to pump strongly for a much longer time! 

The actual procedure of connecting the IVC to the Pulmonary Artery is fairly simple. It is risky because the veins in Max's body are so tiny and everything needs to be very precise. The higher risks of the surgery occur because he will be on the Cardiopulmonary by-pass machine. Basically his body temperatures will be cooled to slow his blood flow, they will direct his blood through a machine and at that point they can stop his heart for a period of time while they operate. The by-pass machine freaks me out. That is the scariest part for me. Max's doctors have also explained that since this will be his 3rd open heart surgery, there will be a lot of scar tissue and it will take a while for them to cleanly open him up so he will be under anesthesia for quite a while. 

So that is what is happening to my baby on Monday morning. It is going to be so hard to let the nurses take him from my arms and then to have to sit and wait. It requires so much trust to let the doctors do this to my son. I have to have faith that everything will go well during surgery. Open heart surgery is so scary. 

So very scary!