A much needed update

Sorry for the lack of updates lately... life has just been busy busy busy!

Shortly after my last post our family walked in honor of Max at the OC Congenital Heart Walk. It was a great experience to be able to walk with family, friends and along side many other heart families. Sometimes it is still hard to talk about everything we have been through as a family and it so nice to be around other families and heart moms who just get it. We also had the privilege of meeting a young woman named Heidi Burns who was born with a very similar heart defect as Max twenty something years ago. She is amazing woman who has beat so many odds... you can read more about her here and shop her super cute shirts that give back to so many heart families here. Meeting people like Heidi gives me hope that Max will lead a happy and fulfilled life! Thank you to everyone who walked along side us and who donated to the Children's Heart Foundation. Brad and I are still trying to figure out how exactly we want to give back and what we want to fight for, but this Heart Walk was a good start!

Shortly after the heart walk we saw Max's cardiologist for his 6 week post op ECHO, EKG, and exam. Max's heart is still doing amazingly well. He still has a leaky tricuspid valve and a leaky aortic valve but Dr. Doshi doesn't believe these valves will pose a problem in the near future. His oxygen saturations remain in the mid to high 90s which still amazes me every time we see the pulse ox on his little foot. Dr. Hanley (Max's surgeon) is the man! Upon leaving Dr. Doshi informed me that she didn't need to see Max for three months! I made her repeat herself and then I cried happy tears. Ever since Max was diagnosed in utero back in January we have had weekly checkups on his heart. I told everyone at CHOC cardiology that I love them but I was happy to NOT see them for three months. Well about a week after this great news I noticed a little red spot on Max's incision. After a day of watching it get worse I decided to be that annoying mom and I texted Dr. Doshi a picture late on Friday afternoon. In true Dr. Doshi fashion she got right back to me and told me that Max had an appointment first thing the next morning. Max saw the cardiologist on call who was able to drain the lesion and prescribe antibiotics. The good news is the infection was localized and we were able to catch it early before it turned into something else.

I wish I could say that the incision infection was the only hiccup we have had recently. About a month ago Max was in his swing and was falling asleep and I thought I saw him shaking. I convinced myself that it was the swing that was shaking and not Max. About two weeks later after my first day back at work Max started shaking while falling asleep in my arms. I was able to grab him tightly and he snapped out of it. We had a follow up scheduled with Dr. Doshi for Max's incision infection and when I mentioned these episodes, she suggested we get a neurology consult. She explained that heart lung bypass can increase the chance of having seizures and we want to catch them early if they are indeed happening. Shortly after the appointment Max had two episodes within five minutes of each other. Each episode only lasted a few seconds but it was pretty upsetting to watch. After these scary episodes Dr. Doshi was able to get Max an emergency appointment with Dr. Shrey at CHOC Nuerology. After a lengthy appointment Dr. Shrey explained to us that he doesn't think Max is having seizures and that his shaking spells are on the spectrum of normal infant behavior because he only has them while he is falling asleep. To be on the safe side we will do an outpatient EEG while he is falling asleep to make sure his brain waves are normal. I was very stressed leading up to this appointment and really prayed a lot that our Max wouldn't have to battle seizures along with his heart condition. We are still awaiting insurance approval for the EEG, but this mom is much more relaxed about the whole thing.

Along with seeing Max's cardiologist, neurologist and pediatrician, we also have been doing infant therapy and Physical therapy (PT). Many people have told us that early intervention is key, and after our first session with his physical therapist I totally get it. Because Max has spent so much time on his back as the result of two back to back open chest surgeries, he has developed a flat head and problems with his muscle tone in his trunk. There are certain post-op sternal precautions when your child has any open chest procedure, but those precautions can lead to other problems. The good news is that Max continues to make great progress in terms of his physical development. He rolls in both directions, sits with assistance and is finally beginning to bare weight on his legs. My dad called Max "rubber legs!" because his legs would just curl up or wobble when you tired to bounce him on his legs.  It's amazing how much can change in just a few days, but Max is now able to spend about 30 seconds on his less "rubbery" legs. I am so proud of how far mighty Max has come since his open heart surgery August 4th... He truly is our Miracle.

Now that we are in cold and flu season we will need to take extra precautions with Max. Although Max looks great on the outside he will never have a truly normal heart. When many of us get sick our heart and lungs have to work extra hard and with Max he doesn't have the extra reserves that many of us are lucky to possess. I hope people will understand that if we ask our friends and family not to touch him without clean hands that we are just trying to keep our little guy out of the hospital. Beginning in November Max will be one of a few high risk kids that will receive the Synergist shot at CHOC. This monthly injection prevents Max from getting the RSV virus that sends many kids like Max to the hospital. Also at the beginning of January we will head back up to CHOC to meet with a team of 8-10 high risk infant specialists that will perform a detailed assessment of Max's development and determine if any additional services are needed (OT, PT, Nutrition, Speech, Social, Cognitive, Behavior, etc). I think it's the hospital way of making sure none of their high risk kids fall through the cracks. We are thankful for all of these specialist looking out for Max.

Also some of you might have seen this post on Facebook but I thought this blog post of 9 Things Parents of kids with Congenital Heart Defects Want You to Know was spot on. And don't worry we are not planning on expanding our family... 5 is enough!

This weekend marks our 4th year of walking in the CHOC walk at Disneyland for our niece Riley that contracted bacterial meningitis at 9 months. This year we walk on team Courageous Cousins for Riley and Max who have both have been through too much in their short lives. Fight on!!!

And now we begin to give back

Well we are now officially three weeks post op. Mighty Max has been doing really well. He still seems a little fussy but he has come a long way in two weeks. He is drinking a ton of milk and already gained two pounds since his surgery. We saw Dr. Doshi last week and everything looks stable. She did mention that his tricuspid valve (valve that separates the right atrium from the right ventricle) was leaky but we are hoping that it improves over time as the ventricles adjust to their new configuration. Now we see what everyone meant when they said Max would need cardiac care his whole life. There are many things to watch for even after his full repair! During this visit we also brought Molly and Luke for complete cardiac work ups. Siblings of kids with a congenital heart defects have a 10% chance of having a heart defect so we wanted to rule everything out. The good news is they both have completely normal hearts! Our next cardiology appointment for Max is in three weeks which is the longest we have ever gone in between appointments since his en utero diagnosis back in January.

Happy 3 months to this little love

We are home and adjusting to life as a family of five but Brad and I already want to jump in the heart family world to make a difference. On Sunday September 18 we plan on walking in the OC Congenital Heart Walk. For local people we would love for you to join us on team Mighty Max for a mile walk around the Irvine Great Park. Sign up here. And for everyone else please consider donating to the cause. All the money raised goes directly to the Children's Heart Foundation and the Adult Congenital Heart Association. Donate here.

Our team shirts!

Also at the end of October we will be walking for the fourth time in the CHOC walk at Disneyland to raise money for Children's Hospital Orange County. We have always walked for Team Riley for our niece that contracted bacterial meningitis and continues to fight on but this year we are walking for team Courageous Cousins!

So long LPCH

Thursday Max was officially discharged directly from the CVICU. Discharge was up in the air after Max had a rough night. Max's nurse informed us that he only slept two hours the night before and refused to take a bottle. Once I showed up Max looked at me like where have you been and gulped down 3.5 oz of milk. Nothing like mommy guilt for not being there with your baby but there are no beds in the ICU and sleeping is not allowed. Max still seemed very wired and just couldn't settle to sleep no matter what we tried. The team thought that he was experiencing a combination of ICU psychosis and withdrawal. We thought the best thing for Max was to get him out of the hospital and back to the quiet Ronald McDonald house. Thursday afternoon Max was very fussy and refused to settle and go to sleep. That evening I made a desperate call to the fellow on call and explained to her that Max had slept less than 4 hours in a 36 hour period. We talked about readmitting Max for a morphine taper, but after a late night run to the drug store Max passed out and stayed asleep for 8 hours straight. Each day he is slowly coming back... less fussy, less wired, and more and more smiles and giggles.

Upon Max's discharge I had pretty much given up on getting to see Max's surgeon Dr. Frank Hanley and thank him. As we were packing up and waiting for some paperwork for discharge we got a nice surprise...Dr. Hanley graced us with his presence. He generally does not hang out in the ICU so it was a very unexpected visit. I finally got to give this amazing man a hug and thank him for giving my baby a chance. Then Dr. Reddy, Max's attending, offered to take a picture of the family with Dr. Hanley (Luke was napping). I can't wait to show Max some day the gentle man that changed the course of his life!!!

The man!!!

Multiple attendings throughout Max's short stay in the ICU remarked what an amazing repair Max was lucky to receive. Brad and I knew that there were only a handful of surgeons across the nation that actually could give Max a biventricular repair, but I guess we didn't realize the high likelihood of a different outcome. Dr. Reddy trained at Boston Children's and remarked that she thinks Dr. Hanley is one of the top three surgeons in the world! I read recently that this man selected pediatric cardio thoracic surgery because it was the one area of surgery that scared him. Thirty something years ago outcomes from open heart surgery were very poor and Dr. Hanley saw this as an opportunity to really make a difference! We are lucky to have Dr. Doshi who made sure we ended up in the right institution with the right surgeon for Max. We have now seen too many stories of single ventricle repairs and bad repairs simply by parents not having the knowledge and resources for their child's specific condition.  Not all pediatric cardio thoracic surgeons and centers are created equal. Some of these institutions have 40% survival rates and places like Stanford publicly release their 98% survival rates and treat way more complicated kids.  There are several organizations trying to combat this problem and Brad and I plan on spending our time and money helping other less fortunate families make the most informed decisions for their kids.

On my way home!

In the mean time we are going to enjoy being a family of five under one roof. Molly and Luke flew home with my mom yesterday and we are going to drive Max back. When I said bye to the kids at the Airport yesterday Molly said to me, "Starting tomorrow we get to ALL be at our house for FOREVER!" Through the tears I know we have all been through a lot over the past few months, but we now get to be a family of five for FOREVER thanks to Dr. Hanley and all the wonderful people at LPCH!

Happy Day

Today is a great day not only are Luke and Molly coming to visit, but Max is getting discharged!

Our mighty max has truly been mighty. He was extubated successfully on Monday night. It took Max five hours to wake up from his Fentanyl and Morphine sedation drips but once he woke up everything moved quickly. After extubation they moved Max to high flow 8L/min of oxygen. Over night they slowly kept decreasing the oxygen levels and all the while his oxygen saturations stayed between 98-100.  By 1Pm the next day he was all the way off the oxygen. After carting around portable oxygen over the last two and half weeks and always having a nasal cannula on Max's face, it is so nice to see our baby again!

The whole waking up from anesthesia wasn't totally a walk in the park. Tuesday morning we walked into the CVICU to find Max very agitated. I quickly realized something was not right with Max's eyes. For my optometry colleagues, Max had a 70 prism diopter constant right esotropia (crossed eyes) and the right eye was not tracking at all. His nurse that morning was a little inexperienced and this mama was freaking out. I asked a lot of questions for my mind quickly went to this is NOT NORMAL and what neurological event happened during his surgery/recovery to cause this. A few hours later the doctors rounded on Max and assured me that this a very common presentation after being on such heavy sedation meds for a prolonged period of time. Throughout the day the esotropia became less pronounced and Max's eyes started working together as a team. Yesterday even when Max got upset I saw no evidence of an eye turn. Praise God!

Max was supposed to be transferred to a step down unit on Tuesday, but there were no open beds. Yesterday they told us that Max would be transferred first thing in the morning and once again no open beds. So it looks like Max is just going to be discharged directly from the CVICU. He had a pretty good day yesterday with all things considered. I spent all day in the CVICU holding Max, loving Max, feeding Max and trying to get Max to sleep. The kid was wired and with all the excitement of the CVICU he slept maybe 45 minutes total all day. We are hoping he had a restful night, but even if he didn't he will be out of that place in just a few hours.

This CVICU/recovery stay has been a complete 180 from our last stay. Max has a made a record turn around and will only have stayed 7 days in the hospital (6 days post chest closure) after open heart surgery! We were told expect the recovery to be two to four weeks. Brad and I are both shocked but what do you except from such a strong little boy. Max's new bi-ventricular heart has already made such a difference. His coloring is amazing and so pink and healthy! His breathing is normal and no more chest retractions. He takes a bottle two to three times as fast as he used to without taking breaks to breathe. It's like we have a new baby. We still have only seem glimpses of smiley/giggly Max but he is slowly coming back. I am sure it will help to be out of the hospital with his brother, sister, and Toto (grandma). After talking to his attending in the CVICU yesterday, we have decided to spend a few extra nights at the Ronald McDonald house before taking Max home to Orange County. We want to make sure he is completely stable before making the drive. I think the last discharge and subsequent emergency room visit has me a little nervous.

This whole experience has been a whirlwind. There has been a lot of stress over the last couple of months, but we are hopeful that things will continue moving in the right direction. We were told yesterday than on Max's last ECHO the valve under his aorta is a little leaky. This is very common after open heart surgery and is something they will watch. Max will continue to be followed closely by Dr. Doshi and CHOC and hopefully no further surgical intervention will be necessary. I told some of our favorite doctors and nurses at Stanford that we love them but we hope to not see them again anytime soon!

Thanks everyone for your continues support and prayers. Our family has been through a lot but seeing Max come out the other side of this truly is the biggest miracle! MAXIMUS! MAXIMUS! MAXIMUS!!!!

Moving forward

Good morning! I wanted to give everyone a quick update. Max is still doing really well and is stable. His heart rate, oxygen saturations, EKG, etc all remain wonderful. Our little guy is still intubated but there are slowly decreasing his sedation. The plan today is to extubate and switch little Max to CPAP (less lung support). For those that have never heard of intubation it is a tube that runs down your throat to your lungs and is hooked up to a computer generated ventilator. This computer system basically breathes for you. To take the tube out (extubate) is a BIG step in the recovery process and requires Max to start breathing for himself. We hope today goes smoothly and we have been reassured by the team they have reviewed his failed extubation from last hospital stay multiple times and are determined to make it successful. So far this CVICU stay has been a completely different experience for both Brad and myself. Although this surgery was much more invasive and required heart/lung bypass, this surgery made Max have a fully functional heart. His new cardiac stability has made a world of difference for his recovery. One of our nurses that trained at Boston Children's drew us this before and after of Max's heart. You can see from the before picture how much blood mixing and how inefficient our little guy's heart truly was.

Before: DORV, TGA, VSD, PA Band 

After

Brad and I treated ourselves to the movie Bad Moms yesterday. It was a great distraction and provided some much needed laughs, but it also made me miss our kids. Molly and Luke have been in San Diego with my mom and with Brad's parents. We are thankful for family to help us out during this extremely difficult time, but are so ready to have our family back together again. On Thursday the kids come up to see their baby brother. I can't wait to give them a big hug and show them the wonderful and fancy Ronald McDonald House that we have been staying in!

The Longest Day

I know many of you have been anxiously waiting to hear... Max's complete repair was a success!

Our day started nice and early and we arrived at the hospital at 6:15 AM for Max's surgery to start at 7:30 AM. We were quickly informed that Max's surgeon, Dr. Frank Hanley, had an emergency surgery the night before that went into the early morning hours and that Max's surgery would be delayed until 10 AM. We didn't mind waiting, but waiting with a baby that had his last bottle at 1:30AM was definitely not very fun. With all things considered, Max did really well and only screamed a little! We met with Max's pediatric cardiology anesthesiologist, Dr. Downey, and enrolled Max in a few trials for kids undergoing open heart surgery. Stanford is a research hospital and they are always doing studies to try to make going on the heart lung bypass machine safer. Thanks to past trials over the years, Max's survival rate went from nonexistent to 98%. Brad and I both feel that enrolling Max in these trials will hopefully help future kids like Max have even better results.

They finally took Max to the OR around 10 AM. I gave Max a big kiss and was a complete blubbering mess. It's so hard to kiss your baby good bye not knowing what lies ahead. Dr. Downy is the sweetest lady and picked Max right up and started singing to him on the way to the OR. Brad and I are so thankful for all the wonderful doctors and nurses that clinically do such amazing things but are also so loving and human with our little guy. Dr. Downy and her team started prepping Max and getting all his lines set up. He has a central line in his neck and another central line in his groin, he has two IV lines, an arterial line, and a line that goes directly into the right atrium of his heart. Around 12:45PM Dr. Hanley came to meet with us in the family waiting area. He explained the procedure and reiterated that he was very confident that this surgery would be successful and hopefully Max's last. Up until that point I was nervous wreck, but Dr. Hanley's confidence and demeanor gave me a complete sense of peace. Brad and I shook this gentle mans hands and told him to take care of our little guy!

Dr. Hanley was in the OR with Max for 4.5 hours. The majority of that time Max was on the heart/lung bypass machine. They give Max heparin (blood thinner) and potassium that slows his heart beating while he was on bypass. We have been told that the bypass machine is the size of a large table and is able to do all of the work of the heart and the lungs while the heart is being operated on. Dr. Hanley first performed the arterial switch portion of the surgery. He cut above the valves of the two great vessels and then switched the aorta and the pulmonary artery. From there he closed the small ASD that was created in the cath lab after his last surgery. Then came the super complicated closure of the VSD (Ventricular Septal Defect or hole). He actually made an incision in the right ventricle and patched the VSD. Thanks to Dr. Hanley's amazing hands and attention to detail he was able to preserve the integrity of the mitral valve. He did not need to replace the mitral valve with an artificial valve and he was able to leave all the chordates attached to the valve in their current location. After Dr. Hanley finished his portion of the surgery he spoke quickly to Brad (I was pumping) and then went to go update the ICU team. It took another 1.5 hours for the anesthesia team to stabilize Max and then he was brought up to the CVICU.

Finally around 7:30 PM we were able to see our baby. He looked really good with all things considered. We were a little surprised to find that they had left his chest open due to a small bleed that was close to one of his coronary arteries. They decided to patch this little area of bleeding with some glue type stuff and leave the chest cavity open in case the bleeding didn't stop. Dr. Maeda who is the transplant surgeon at Stanford actually closed Max's chest this morning in the middle of the CVICU. They quickly turned Max's bedside into a sterile OR and closed him up. We were told that everything went smoothly.

Overall Max has been doing really well post surgery. The team actually said that he is doing better than expected. Brad and I are so happy to see that his oxygen saturations are now reading 98-100. This number has always been such a source of stress for us since his PA band surgery at the end of May. Pre-opertatively Max was hanging in the 60s and 70s on oxygen, so we have come a long way in just a few hours.

We know that the next couple days Max is still pretty critical but we are very pleased with the way things are currently going. Brad and I know all too well from previous experience that things can take a turn for the worse quickly so we are prepared for the worst but hope for the best. But now we get to enjoy that we finally have a pink baby!

Over the next few days I will be on the lookout for Dr. Hanley. I sincerely want to thank this man for giving my son a chance. He is an amazing man and truly one of a kind. We will forever be grateful to Frank for fixing Max's broken heart. I look forward to the day that I get to tell Max about the gentle man that changed the trajectory of his life! Thank you for all of your prayers. Mighty Max is truly the biggest blessing!!!

A trip to the ER

We returned to LPCH a little sooner than expected. Max was discharged from the NICU yesterday around 2:30PM. He seemed a little tired and congested but those things were somewhat expected after being intubated and sedated for his heart cath 24 hours prior. We brought him back to the hotel where he progressively got fussier. Brad and I thought he was just constipated because he seemed uncomfortable and after 5PM refused to take a bottle. I went to CVS around 8PM to grab some tylenol and prune juice. By the time I got back to the hotel Max just didn't seem to be himself. He was very fussy and we couldn't calm him. I noticed he was breathing really heavy but I initially thought it was just from crying so hard. Then Max started having serious chest retractions, began bobbing his head, and every couple of breaths was gasping for air. We knew this was not normal and made the decision to take him to the ER.

Stanford ER is a very crazy place. There are metal detectors, security, and police everywhere. I barely gave the front desk Max's name when a nurse took one look at Max and alerted the pediatric staff that there was a baby not breathing well. I'm sure their sense of alarm was heightened because Max was already on a constant flow of oxygen and was still having trouble breathing. Within minutes a whole team of doctors and nurses were in his room. They turned up his oxygen to 4 L/min (he is normally at 0.5L/min) and started talking about reintubating him. The Respiratory therapist started suctioning his mouth and nose but didn't clear much. He then took a closer look way up his nasal passageway and saw impacted boogers. He began suctioning very aggressively for several minutes with lots of saline. The amount of stuff that came out of Max's nose was very impressive. As soon as the RT was done suctioning, Max opened his eyes and looked at us an smiled. His breathing quickly returned to normal and within minutes he was back to our normal baby. After an x-ray, some blood work, and a few attempts at an IV, Max was transferred back up to the NICU for observation.

Max was discharged again today and is finally back to our normal baby. He is eating normally, breathing normally, and sleeping normally. The doctors think because Max had been on the portable oxygen machine without humidification for so long (because we have been traveling) that it dried everything up. The dried boogers literally occluded his nasal airway which quickly became a big problem because babies breathe through their nose. We still can't believe that the whole scary experience was from boogers but he was in serious respiratory distress. Now we just need to love on Max and keep him healthy until the big day on Thursday!