Max is going home!!!

We made it! Max gets to go home today. The hospital is an amazing place. I am just in awe with the knowledge and experience of the doctors who have helped us. The nurses have all been so sweet and helpful. Along with all the care we received from the nursing staff and doctors there are some other things we will miss about the hospital...

-endless supply of free diapers, wipes and formula
-instant hot water tap (so easy when you need to warm bottles)
-as many clean wash clothes and blankets as we need
-the nurses changing dirty diapers
-crushed ice and juice
-watching TV in the middle of the day and not feeling guilty
-the sweet volunteers who would hold Max when I needed a break
-hand sanitizer available around every corner
-the "call" button to the nurse station
-our Case Managers- so helpful, caring and wonderful every step of the way

I could go on. I also could make a list of all the things we will not miss about the hospital but I would rather just focus on the positive things because today is our happy day- Max is going home!!! He did it! He was tough! He was strong! He is Mighty Max!

What difference a week can make...

Max last week...

Max today...

I would say he is feeling MUCH better!!!

Hearts! Hearts! Hearts!

It is almost time to leave the hospital and Max has received over 250 hearts! Some hearts were hand delivered and most were sent in the mail. Every heart was unique and special. Max received hearts from aunts, uncles, grandpas, grandmas, cousins, greats aunts, great uncles, great grandma, great grandpa, second cousins, first cousins once removed, veterans, veterinary techs, preschoolers, nursery kids, neighbors, friends, pets, ward members and missionaries from the Winnipeg Canada mission. Hearts came from Hawaii to New York and many states in between. The smallest heart was 2 inches long and the largest heart was 2 feet long. The oldest person Max received a heart from was great grandpa Southwick (82) and the youngest was cousin Talan (2 months). The hearts were every color of the rainbow and decorated with buttons, ribbon, glitter, stickers, pom-poms, popcicle sticks, beads and candy. Each heart had a special message to Max. He received hearts with scriptures, quotes from Dr. Seuss, an original poem, and lots of loving, encouraging words. There are hearts with pictures of Disney characters and Superman. There are hearts written in Spanish. There are hearts with the BYU fight song. There are hearts that were hand painted. There are hearts that were made of gold. Max was called a champ, a tiger, an angel, a rockstar, a cougar, a baby and a hero.

Lots of hearts=lots of love for Mighty Max Kelly

One step forward and two steps back...

Recovery for Max has been up and down. We are still at the hospital and the doctors still can not give us a date when they think we will be going home. I just finished giving Max his 3rd bath today because he pucked all over himself once again. I am so incredible happy that everything regarding the surgery and the healing of Max's heart is going well but we just seem to be hitting every other bump along the road.

Max has something called chylothorax and consequently he needs to be on a special formula. The new formula is pretty nasty and Max was getting his food through a feeding tube. We have been slowly trying to reintroduce the bottle and in the past 24 hours he has made a lot of progress (step forward). Since he is taking his formula orally he is also given his medication orally. The medication makes him gag and then he vomits- medicine and formula both come up (two steps back).

Max has also developed a fever which is an indication of infection. Today the nurses took blood samples and samples from the fluid draining from his chest tubes. It take 24-48 hours for the lab to test the samples so we just have to wait to figure out the results. If it is negative for infection- good. If it is positive for infection- we have to start on IV antibiotics and stay at the hospital until it clears up.

I am just wearing out. We did not expect to be at the hospital this long. Everyday that we are here is another day I miss being with Morgen and Spencer. It is another day of sleepless nights on the hospital cots. It is another day of Max being exposed to germs. It is another day of gross hospital food. It is another day of no fresh air and exercise. It is another day that Max is uncomfortable and constantly poked and prodded by nurses and doctors. It is another day of being surrounded by sadness, worry, and frustration.

Hopefully we will start taking more steps forward with Max's recovery but at this point I feel like I have to have a pessimistic attitude so I can protect my hopes of going home soon. Max is so strong and he is toughing out the situation the best he can. I wish I could be more like him.

Pictures...

Our friend Laura came and took some pictures of Max. She is so talented and captured some great images of our tough little guy.

Recovery time...

Max's recovery has been a bumpy road but that is expected after open heart surgery. The main source of discomfort for Max has been headaches. Since he is so swollen the nurses said that he is experiencing his first migraine- poor guy. Lights, noises, touch... he is sensitive to everything and quite cranky. As the swelling goes down, so will his pain.

He is on a special formula now that is low fat and high protein. It tastes awful. In fact, one of the nurses said that at one point the hospital staff did a taste test of all the formulas that patients receive and the one Max is on was the worst of the bunch! We have to try to feed him a bottle and whatever he does not finish is given to him through a feeding tube. Most likely we will go home with the feeding tube since he needs to stay on the formula for at least a month.

Max has been transferred to the pediatric ward which means the doctors feel he is doing well. We are not sure how many more days we will be in the hospital. Right now we are just trying to keep Max as calm and comfortable as possible.

This is me feeding Max for the first time. We can hold Max now but as you can see in picture it isn't easy or very comfortable with all the wires and monitors attached to him.Today the swelling has gone down a lot and Max has been awake more. He is starting to look more like himself. His eyes still look very sad but soon enough we will have our happy boy smiling back at us.Morgen was able to visit Max today. Morgen was more excited about pushing the buttons on the TV remote then seeing Max but it still felt great to have both of my little boys together for a few minutes. Hopefully the next few days will be full of rest and we will be home soon!

I "heart" Max...

Max has received so many hearts. His room is so cheerful, bright and full of hope from all of his family and friends. It is tricky finding enough room to hang all of his hearts without getting in the way of the monitors and equipment but we want Max to know how much he is loved. We are still getting hearts in the mail so there will be even more added to the wall by the end of the week!

Loves for Max...

Into the PICU

After surgery Max was brought into the PICU for recovery. Once he was settled and hooked up to all of his monitors we were able to visit him. His heart rate was pretty high when he was brought into the PICU but this morning it has settled down to a normal rate. Last night he was kept heavily medicated and this morning the nurses are weaning him off some of the medication with the hope of taking him off the ventilator today. It is a difficult balance to find with pain medication. Obviously we want Max to be comfortable and not throbbing with pain but too much medication keeps him from being awake and able to breath on his own. Right now we are waiting for him to wake up a little more and then the respiratory team is going to try taking him off the ventilator sometime this afternoon. He is really swollen today but he is responding well to touch and is wiggling around quite a bit. For most of the day I will just sit by his side. It is comforting to me to watch him breath, watch his heart rhythm and every once in a while I see his little eyes open for a second. I really can not believe how strong my baby is. He amazes me.

Here is Max being wheeled from the operating room to the PICU with the surgical team.

This is a picture of the first time we saw Max for the first time after surgery.

What do you do while you are at the hospital for 12 hours? We read, knitted, checked emails, updated blogs, checked facebook...

Max in the PICU

Surgery is over!!!

Max is all done! We just got word that the surgery is complete and the surgeons are working on closing the incision! He made it! He was strong! I am SO relieved but I feel like I won't believe Max is okay until I see him. Even though it has only been a few hours I feel like it has been an eternity since I last saw my little boy. In a few minutes the surgical team will be bringing Max up to the ICU. We will get to see Max just for a minute as his crib passes in the hall and then we will have some time to talk to the surgeons. I am so proud of my little boy. He was brave and made it through.

By-pass machine...

Max is doing great so far. He was hooked up to the by-pass machine around 10:15am. The last update we got from the nurse was all positive. Max was stable and tolerating the anesthesia well. We still have a long wait but so far so good.

My heart flips back and forth from worry to calm. I am so anxious for the surgery to be over and for Max to be stable in the ICU.

Back in the waiting room...

Max was admitted to the hospital this morning for his second heart surgery. It is almost 9:00 and Max has been in surgery for about an hour already. Spencer and I are sitting in the waiting room. Waiting...
We have had a busy day already. The last time Max could eat this morning was 3:30. We both got up with him to feed him a bottle and give him some extra cuddles. 5:00 Spencer and I were both up and getting ready. 5:30 we woke Max up from a deep sleep to get in his car seat and we were off to the hospital. 5:45 Max was wide awake while we were driving and started sucking on his hands. 6:00 we checked in to the Pediatric Admitting Office. 6:30 Max had a pre-surgery check-up (weight, length, blood pressure, oxygen saturation, etc). 6:45 Max fell asleep in my arms. 7:00 we walked down to the surgery waiting room. 7:20 we met with Max's anesthesiologist and surgeon. 7:30 I handed my sleeping baby over to a nurse and he went through the double doors into the operating room.

Spencer and I are a mix of emotions. There is no way to really explain how we are feeling at this point. I will say that it was easier for me to watch my baby go into the operating room because he was asleep. He look peaceful and calm. I can only hope that the anesthesia kicked in before he woke up and realized he was hungry, cold and not with mommy. We will hopefully get an update on the surgery and how Max is doing within the hour. We love you Max! Be strong!

Does this look like a baby who is going to have heart surgery in an hour? Max made us feel less nervous because he was being so sweet and cute while we were waiting this morning.

Max saying, "Don't worry dad!"

Sleeping in mommy's arms in the operating waiting room.

Last kiss from mommy.

Pre-op Appointment

Max went to the hospital today for his pre-operation appointment. He had an EKG, chest x-rays and blood work done. The technician struggled to find a vein to draw blood and eventually (after a few practice pokes) ended up drawing blood from a vein on his head! I had to leave the room because I knew I would get queasy seeing my baby with a needle sticking out of his head. All of his tests look normal and we got the okay for surgery on Monday as long as Max does not get sick this weekend.

We were also scheduled to meet with Max's surgeon today but he was not available so we will have to wait and talk to him on Monday morning. Spencer and I were disappointed that we were not able to meet with the surgeon because we have lots of questions but, we understand that when a surgeon is busy you really can not interrupt. The same team of surgeons that performed Max's first operation will be working with Max again this time. These doctors are capable and very good at what they do so we have faith that they will take good care of our little boy.

Now we just have to wait until Monday. A supportive friend of mine dictated perfectly in an email how I feel. She wrote, "I hope that the time will pass both quickly (so that you don't have to worry too much) and slowly (so that you can enjoy not having a child in the hospital)." Time is either moving too fast or too slow right now. I am anxious for time to hurry up so I can have a healthier Max in my arms and have a huge worry lifted from my shoulders. But I also wish time could stop so I would not have to see my baby struggle while he is in the hospital. Only a few more days...

Max's surgery...

A lot of people have asked what will actually happen during this upcoming surgery for Max so I will do my best to explain. He will have 2 procedures done during this surgery, the Bi-directional Glenn and the Damus-Kaye-Stansel Procedure. And once again, I am not a doctor or nurse so I know some of my terminology is incorrect and I might not explain thing perfectly but I will do my best to explain things the way I understand. Also, Max's heart is quite complicated so when I explain the procedures I will explain them in terms of a "normal" heart first and then try to relate the differences with Max's heart.

Bi-directional Glenn:

Blood circulating back to the heart is low in oxygen (blue blood) and it flows into the right Atrium through the Superior vena cava (SVC) or the Inferior vena cava (IVC). The SVC brings blood to the heart from the head and upper extremities (arms). The IVC brings blood to the heart from the lower extremities (legs and torso). You can see the SVC and IVC on the image below:

Once blood enters to the right atrium it is pumped to the right ventricle and then to the pulmonary artery which goes to the lungs. Once the blood gets to the lungs it saturates with oxygen (now it is considered red blood) and it flows back to the heart.

With the Glenn procedure the SVC will be cut and connected directly to the pulmonary artery. This means blood circulating back to the heart from the upper body will not pump through the right side of the heart, instead it will flow directly to the lungs. With blood from the SVC flowing directly to the pulmonary artery there will be less stress on the heart because it will not have to pump as much blood to the lungs. The heart diagrammed in this picture is different from Max's but you can get the general idea of the Glenn if you just look at the SVC and how it will connect to the pulmonary artery.

In a few years Max will have the Fontan procedure done which connects the IVC directly to the pulmonary artery. At that point the heart will not have any blue blood pumped through it. All blue blood flowing back to the heart from the body will go directly to the lungs. Here is a picture after the Fontan:

Max only has 1 working ventricle, his left ventricle. Right now Max's left ventricle is doing double duty because it has to pump blood to the lungs and to the body. Without any surgeries Max's left ventricle would eventually stop working because it is working way too hard. The Glenn is the first step in easing the work of the left ventricle. Like I said, in a few years Max will also have the Fontan done and that will then complete his surgeries. After the Glenn and Fontan the left ventricle will only need to pump blood to the body.

Damus-Kaye-Stansel Procedure:

For this procedure the surgeons will create a "double outlet" for the aorta. The aorta is the main artery returning blood to the body. In order to maximize that amount of blood leaving the heart with a minimal amount of effort the Damus-Kaye-Stansel (DKS) connects the pulmonary artery and aorta using a patch. That way blood can flow out of the heart directly through the aorta or through the pulmonary artery and then to the aorta. Here is a picture:

Max's aorta is connected to his non-functioning ventricle. Right now the only way blood to getting to his body is through the hole between his ventricles and then out the aorta. With the DKS Max will have blood flowing out both ventricles which again will ease the stress on his one functioning ventricle.

This surgery is pretty scary because the flow of blood in Max's heart will be redirected. Most babies his age respond well to the surgery and recover well. The hope once this surgery is complete is that Max's oxygen levels will increase and the energy required by his left ventricle will decrease. Also, if Max responds well with these 2 procedures then he will be healthy enough to wait 2-3 years at least before his next surgery, the Fontan, is needed.

Max is 3 Months Old...

Mighty Max is already 3 months old! He is such a sweet little baby. During the day he is very mellow and "go-with-the-flow." At night he likes to keep us on our toes and most nights wakes up quite a few times. He loves when Morgen plays with him and he loves when we sing to him. Max does not really like pacifiers but he loves to suck on his hands. He is a great eater and prefers to snooze while someone is holding him or in his swing. Most people comment on his big eyes and button nose. I love his cubby cheeks and sweet little voice when he tries to talk to us. Max has had to go through a lot for only being 3 months old but hopefully by the end of this month his hospital stays will be over, doctor visits will decrease and he will get to spend more time just playing, cooing and smiling at home with mom, dad and big brother.

I have had a difficult time capturing what Max looks like in a picture. It seems like in every picture I take of him he looks completely different. I think the first picture is the most "Max-ish" but the rest are pretty darn cute too!