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| London, 2009 |
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London, September 2003 |
I had my tubes tied on Saturday July 29 2000. After I came out of surgery London was having trouble latching on to feed. He would only feed for a few minutes and fall asleep. By Sunday July 30th, London was having a lot of trouble breathing. When my breakfast came, they took London to the nursery. Next thing I knew he was crashing. They had to stabilize him. The doctors there said it was either sepsis or heart problems. He ended up being life-flighted to UC Davis. By the time we got there, they already knew what he had. They took us in a little room and told us that our precious son had HLHS. We were given 3 options, the 3-staged surgery, a heart transplant or compassionate care. We both broke down. Well, I was already crying from having my son torn away from me and put on the helicopter. They told us he had 0% chance of living with compassionate care, 30% chance of living with a heart transplant and 30% chance of living with the surgeries. We decided we had to give him every chance at life, so we chose the surgeries.
London had his Norwood on August 2nd 2000 at 5 days of age. We were fortunate to have tons of family and friends to wait with us through the 6 hour surgery. He came out fine and made it through the most critical 48 hours after surgery. He recovered with flying colors. We were almost set to go home when his heart started having arrhythmias. He was given two bolus medications to bring his heart rate down, neither one worked. Finally he was given Amiodarone, this worked. Four weeks later, just as they were getting ready to send us home the second time, his heart rate started dipping, so they took him off the Amiodarone. That worked. We finally took him home, after 7 long weeks in the hospital.
He went in for his Glenn on February 1st 2001. London did wonderfully and we were home 5 days later.
London has since had 2 heart caths to coil many collaterals. In one of the heart caths, they lost a coil and it traveled up into his brain. He had no ill effects from it so far, they said if anything, it would affect his vision only.
London's Fontan was scheduled on August 1st 2002. He had to have his Fontan early because of the collaterals that were still growing rapidly in his chest. He did fine through the surgery, but within a week had a staph and strep infection in his chest. They had to take him in and open his chest back up to clean him out. His liver was so enlarged that after this procedure, he was not allowed ANY pain medications for about a day and a half. We had to stay in the hospital until his I.V. antibiotics were done. Finally, 6 weeks after his Fontan we went home.
London turned 3 on July 28, 2003. He is doing wonderfully. His g-tube came out several months ago. He had to go in for a minor surgery to close up his g-tube hole. It was an easy procedure and we went home the next day. He has picked up eating a lot. He finally is over the 30 pound mark, weighing in at 31 pounds! Woohoo! Way to go baby! We do have to go in this summer probably to have more collaterals coiled off. We thought the Fontan would help this, but apparently it may not have. We'll have to wait to see if the collaterals are left over from before his Fontan or are newly grown since his Fontan.
We are so happy that we gave him a chance at the life he deserved. We cannot imagine our lives without London. And if we lost him tomorrow, we would cherish the lives we had with him. We love you so much London!.
May 2005 Update
London is doing wonderful, he is now almost 3 years post-Fontan and will be 5 on July 28th. He recently had a heart cath in February and was given a clean bill of health, well, as clean as it can get with his HLHS. They do not expect any more surgeries or procedures in the near future and hopefully not ever. Even though we still do not know what the future holds for our precious boy, we love him so very much. We do not take a single day for granted with him.
May 2010 Update
London will be 10 years old on July 28th. He will be 8 years post-Fontan on August 2nd. Thankfully, the only two collaterals he had at the time of his Fontan were left over from before the surgery, they were small and had not grown, so they did not need to be coiled off. Also, he has not developed any new ones since his Fontan. He recently received another clean bill of health on his heart and is healthy in all other ways. Yay London! He runs circles around other kids and is doing wonderful! He is now in Karate & loves every minute of it!
