A plan and a date!

Sorry for not updating sooner, yesterday was a really long day. Max was scheduled for his heart cath at 10:30AM. We arrived at the hospital at 9AM and for various reasons (long first case and Dr. Perry being called into an emergency), the team did not take Max back into the cath lab until 1PM. Considering he had his last bottle at 5:30AM, waiting in pre op for four hours was fun! I've never seen Max suck so hard on a pacifier. Max doesn't even like pacifiers but he sucked so hard on that stupid thing hoping that if he sucked hard enough maybe some milk would come out! As of Wednesday, the plan was to get some data from the cath and then perform an atrial septostomy again to increase Max's red and blue blood mixing. Right before the procedure Dr. Hanley (Max's surgeon) advised the cath team not to proceed with the septostomy. Brad and I quickly inferred that if they were not doing the septostomy that his surgery was imminent. We received a call about an hour and a half later that Max's cath was successful and they had gathered all the data they needed. The cath data confirmed that Max had grown into the pulmonary band and that because he is now such a chubster that the band is now too tight. The tight band decreases blood flow to Max's lungs which results in lower oxygen levels. Dr. Hanley and Dr. Perry discussed the results and the decision was made that with the great pictures from the ECHO and the data from the cath lab, Max did not need the MRI. Max was successfully extubated in the cath lab and was transferred to the NICU. Brad and I love the NICU. We know there are really sick kids in the NICU but the vibe is so different than the CVICU. The nurses are amazing, nurturing, and loving. Max is so lucky to have them. We got to catch up with some of our favorite nurses (we missed you Krista) and show them all how cute and chubby our Mighty Max has gotten.

We love Roberta!

During rounds this morning we were informed by Dr. Sachs (Max's main cardiology intensivist at Stanford) that Max is scheduled for his full biventricular repair on Thursday August 4th. Because of Max's low oxygen levels and need for home oxygen, Dr. Hanley bumped another patient and put Max in his surgical schedule for next week. Brad and I have mixed emotions. We are excited that we made it to this point and that god willing this will be Max's last surgery. We are also scared to death of what is to come. This should be 8-9 hour open heart surgery and we already know how terrifying the recovery is from heart surgery. The CVICU is such a scary place and our anxiety runs high whenever we walk in that place. We know Max will receive amazing care there from the doctors and nurses but it is just heartbreaking to see your baby in that place. We have no idea how long his recovery will be but we hope to be home by the end of August/beginning of September.

Sleepy baby 

Max's recovery from the cath went really smoothly and he was discharged today! Our plan is to stay close to the hospital over the next few days. We hope to lay low and keep Max healthy until the big day on Thursday. Please keep Max in your prayers. Please pray that Max's repair is successful. Please pray that Max's recovery goes as smoothly as possible. Please pray that Brad and I have the strength to get through the ups and downs of the next few weeks. Max is truly our little warrior and we look forward to the day when his broken heart is fixed!

And we are out of LPCH at least for a few days!