It's been a long road and we still have a ways to go but it's all worth it...every minute whether it's joyful, stressful or even heartbreaking...it's definitely all worth it. On February 16, 2012, Max had his open heart surgery to repair his heart defects and his pulmonary veins. He did great and within one week he was out of CICU. Throughout our 8 weeks in Boston, we had quite a few setbacks and bumps in the road. We learned that Max was allergic to milk protein and he also needed a G Tube. His G tube surgery was on March 6th and once again, Max proved to be the miracle he is. He started G tube feedings on Neocate formula and little by little put on some weight. He was able to come off oxygen during this time and tolerated room air very well. He was doing great on his Gleevec and had two caths before we came home. On March 28th, Max was released from CHB and we were ready to come home. I must say, I wasn't prepared for how much work taking care of Max was going to be. Between doctor visits, sometimes 5 days a week, to round the clock meds and g tube feeds...I was doing by best to juggle it all. Max was thriving and the month of April was great. We had a nice routine and he was adjusting to being at home. In May, we moved into our new house. Talk about a challenge...packing and unpacking with a 5 month old who has special needs due to his illness. But low and behold, we got it done.
Not even 4 days after moving in, Max was taken to Duke hospital for severe retching and color change. He was hospitalized for 2 weeks for aspiration pneumonia, GI bleeding and balloon dilation for his pulmonary veins. We went home with no changes and I was in complete fear of every moment that something wasn't right with my baby. On June 7, 9 days after being released, we went back to Duke hospital for retching, fever and once again a greyish color in Max. We were hospitalized for a week. Nothing was fixed or changed and the doctors insisted Max was fine and we could go home. I called a family meeting and explained to the doctors that I didn't feel comfortable leaving. I still felt like something was seriously wrong. They assured me, Max was fine. They just kept saying "cardiac babies retch, Max has PVS, blah blah blah." They said I would know what to do in case of an emergency. I left the hospital and just prayed to God to protect Max. Well, all I have to say is a mother knows best!!! 3 days later on June 17th, Father's Day, Max had such a severe retching episode that he started choking and turning blue. We called 911 and while the EMTs argued about how to put Max's carseat in the ambulance, I continued to pray to God to protect Max and please do not take him from us. By the time we got to the hospital, Max was in heart failure. They intubated him and hooked him up to all kinds of meds. He was swollen and had tubes and wires everywhere. I just wanted to scream and cause a scene at Duke. I wanted to tell them that it took Max to go into heart failure before they actually decided to listen to me. For three excruitcating weeks, Max was just pumped full of sedation medicines-morphine, ketamine, versaid, pentabarb, dex, versaid, fetanyl, methadone, ativan...you name it, Max was on it. During these three weeks, I was in constant contact with Boston and Max's cardiologist, Dr. Milazzo. No one could understand what Duke was actually trying to do. So on July 4th, when Max failed extubation, Matt and I decided to go back to the best place for Max...BOSTON!
Within 24hrs, Max was flown air ambulance back to CHB. I flew and met Max here. When I walked through those doors, that once overwhelmed me back in February, this time gave me the biggest relief. I knew Max was going to thrive and get better by being here at the number 1 hospital. Sure enough, Max was extubated two weeks after arriving in Boston. We
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