When I got there we waited for the echo results and grandma and I took turns holding John, we took pictures and spent quality time getting to know our precious little boy. Mitzi and I ate as best we could considering how bad our nerves were. Finally, after what seemed like an eternity Dr. Weiner came into the room and said the echo showed a “really severe heart defect”. He went on to describe “Tetralogy of Fallot”, the four defects within my sons little heart, and that it would require open-heart surgery to repair it in order for him to survive. We were devastated, I looked at Mitzi who was already crying and I was tearing up too. I wanted to learn as much as I could from the cardiologist so I listened to what he was saying and tried to ask as many questions as I could think of in order to gain at least some understanding about what he was saying my perfect little boy had. As he was describing his condition he drew a diagram on a napkin of an odd shaped heart with some arteries coming out of it to give us a visual of what he was saying. He then said that nurses from CHOC (Children’s Hospital of Orange County) would be coming to take John to CHOC’s NICU for further testing and observation. As soon as we heard they were taking John elsewhere my wife told the staff at Saint Joseph's that she was not going to stay there without our baby, and then we immediately started getting her things together so she could go with John to CHOC. I remember following as they took my son and wheeled my wife via underground tunnel to CHOC’s NICU. I could not believe what was happening. I started cursing the devil for attacking my innocent son with this disease, and trying to turn this beautiful experience into one of despair and heartbreak. I had a lot of trouble remembering to look first to God's Word, because when things change in a moments notice, and the devil distracts you with all these negative thoughts
and “what ifs”, it’s difficult to do.
Throughout this ordeal, relying on the Lord really made things easier, and I cannot imagine facing something like this without having God in my life. I don’t know that I would have been able to handle it. Just before they took John to CHOC I made it a point to reach out to our Pastor (Pastor Mike Webb) and ask him to pray for John’s healing and so the next Sunday he asked the church to be in agreement with us for our son's healing! It's funny how even with all these people praying and offering support we still felt so very alone, at least I did at the time. John ended up staying in the NICU for 5 days because they wanted to monitor John and watch his Oxygen levels to make sure he did not need a BT (Blalock-Taussig) shunt. My wife said all they were doing was "babysitting him" and that we could watch him at home. The nurses at CHOC’s NICU were nice and almost all of them would look at John and ask,
“Why is he here again?”. Probably because he was one of the bigger babies in the NICU.
John had never had a Tet spell “turned blue” or had less than 98-100% oxygen level (not even when they gave him shots or ran tests, which made him cry so hard no sound even came out). I have never been a fan of hospitals and I was groing tired of hearing some of the negative scientific/ medical stuff the people were saying (as if they couldn’t imagine spiritual intervention at all). One nurse even had the audacity to say “he will never play sports at a high level”. I was dumbfounded and could not believe she had the nerve to say that. I told my wife “John will play or do whatever he wants to do, all things are possible thru Jesus” and I meant it. The next day my wife put a onsie on John that read “Future Quarter Back” and I loved it! John was discharged from the hospital on the 5th day of his stay in the NICU soon after the Dr. Gandy, another cardiologist, read the results of his echo that showed the PDA closed
and he was still sustaining 100% oxygen levels. We got the call from the Dr. while attending a mandatory Infant CPR class at CHOC. A class we almost didn't make it to since my wife didn't want to leave his bedside until she got the results of the echo (a class that scared me so much and made me doubt my ability to care for my son). With Joy in our hearts we finally got to take John home to meet his brothers, who were so excited to do so. Soon after I called our Pastor and made arrangements to have John dedicated at our church the Sunday after he was released from the hospital.
Throughout the next 3 months he grew so fast (we were lucky if we could get him in an outfit more than
once…LOL!). The emotional roller coaster was going full steam ahead not to mention all the doctors appointments he had. At his 3-month appointment, he was 14lbs. 14oz. and 25in long. Up to this point, he had been gaining an ounce a day and maintaining a 100% oxygen level. My wife and I thought he was doing great, then they performed an echo and said it showed that the hole in between the chambers of John's heart along with the rest of his body had grown. This was causing more strain on the pulmonary valve and made it more restricted. Dr. Chun, his Cardiologist, advised us that he may start to develop symptoms of turning blue (cyanosis) and could even end up in the emergency room needing emergency surgery. John’s doctors wanted us to be proactive and wanted to schedule him for surgery within the next few weeks. We were in shock, we had been thinking that it was such a blessing that
John was doing so well and now they are saying he will have to have surgery 2-8mths sooner than they had originally planned. Though we did not want John to have to endure any type of surgery at all, we still had to do what was in his best interest so we scheduled an appointment with the surgeon. We had a meeting with Dr. Gates (John’s surgeon) and he advised that the prognosis for him was excellent especially since he had never had a Tet spell, trouble putting on weight, fatigue, or tiring very fast, or any other signs. Though looking back on it, it does seem he never had the level of energy he has today.
They repair would take place on Wednesday May 5, 2010 (Cinco De Mayo will never be the same for me). The surgeon told us the surgery itself would take about 3hrs or so and that John would probably be in the hospital for 5-7 days. I confessed to my wife that John would be home for Mother's Day, because I did not want her in the Hospital on Mother's Day. Plus I just had a feeling God would see to it John was released by then. Dr. Gates, the surgeon, was very nice, very easy to talk to and very descriptive on what he was going to be doing during the surgery and what we should expect during recovery. I don’t think he expected us to know so much about Tetralogy of Fallot, the surgery, and about him as a surgeon (my wife loves finding out things about people and she used all of her skills to find out as much as she could about the man who would be doing surgery on our little miracle).
That day May 5th came quickly…too quickly! Before we knew it, we were at the kissing booth (doorway to the operating room) saying good bye to our baby and watching them carry John away… it broke my heart, it was the hardest thing I have ever had to do. His surgery went smoothly, took roughly 2½ hours from start to finish, and was less invasive then they had anticipated. They did not have to remove any tissue from the exterior of Johns heart, Thank God! We had to wait a little longer to see our son though because they had to get him situated in his room and stable. Seeing John for the first time after surgery, I was so excited! I didn't care about the wires, the tubes, any of it. I just wanted to hold him, touch him, and let him know I was there. I was glad that we could finally put the surgery behind us and move on to healing. It was difficult at time seeing our sweet boy laying there and I was
helpless to do anything for him. Especially when the alarms are going off because his blood pressure spiking or dropping, or when he would wake up and try to cry but instead you hear nothing because he has a tube down his throat. I had to leave the room when they pulled the Trachea tube out because he looked into my eyes as he tried to scream (as if he was saying Dad! Help me!), I couldn't take it... it crushed me to see him like that. The meds made John zone out, usually to Baby Einstein's on the hospital TV. He did this for a few days. Then the day had finally arrived when John was released, Mother's day and what a great Mother's Day gift it was! The Nurses at CHOC were so nice they even made a Mom's Day card with a poem and a picture of John smiling on it for Mitz. Honestly, I cannot say enough about how great everyone was at CHOC; they made us feel like they really and truly cared,
always asking if there was anything we needed and answering questions and helping when we needed it. They really enjoyed John too, nurses would ask other nurses to guess how old John was and they all would say what a cute baby he was and how he was always smiling. It was a much more inspiring time than before, but we were better prepared this time around. Well as prepared as one could be…
Two weeks after the surgery we had a follow up with the cardiologist for an Echo. Dr. Gandy said it showed that two of the valves in his heart showed mild backflow, but not to worry since it isn’t abnormal right after surgery due to the misshapen heart starting to heal and go back to a more normal shape. It worried us some at first, but we just confessed the Word, which we knew to be true, and did not look back.
At a month Post-op, we had another appointment with Dr. Chun and he decided not to do an echo, he listened thru the stethoscope and said how awesome John looked! He also commented on the fact that John was always smiling, its something everyone notices about him. He said his heart sounded like it was healing great and seemed surprised to hear that we were able to pick him up by his underarms just three weeks post op. He also said the check-ups could be less frequent since he was recovering so well. Mitz asked him if it was okay to get chlorine on his incision scar if we take him swimming and he said, “Treat him like the other two boys”, which was such a blessing to our ears! He advised us that he will do an echo in 4 months. Well recently on October 4, 2010, Dr. Chun did that echo and the results showed that there is still a backflow from the Pulmonary valve, he explained the possibilities of a valve
replacement surgery and said that John's results showed no need for immediate concern. He said they will monitor him and do tests when he is older, but it could be 10, 20, 30 years from now, or even never before he needs another surgery. He said he will see us in a year for another check-up.
Someone said to me not too long ago that they don’t know how my wife and I got through this ordeal. I will be the first to say its been a rollercoaster of emotions and been filled with tough times, but it has also been amazing to watch God work things out and to see John's strength and progress through this entire situation. He is by far the strongest person I have ever known and he inspires me in a way nobody else can. Had it not been for the Lord, our Church, Connor & Alexander (his brothers), Grandma and Grandpa, all Mitzi's family in North Carolina, my family in Tennessee, our extended families all over the country, and all of our friends; I don’t know that we would have made it through it all. Thank you all for being there!
Thanks to everyone at CHOC all the Doctors, Nurses, Cardiologists, Surgeons, Anesthesiologist and everyone else who helped keep my son alive and thriving… God Bless all of you!!!
No comments:
Post a Comment