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!!!