Wow how time flys… Anyway we are past January/Febraury/March 2015 and (knock on wood) things are going well for all of us. Cam has been doing great growing and growing into such a sweet man. Our newest addition Baby Mogg 2 has had an anatomy ultrasound to check for all four chambers of the heart. We were told there are no major heart defects currently visible in the new baby and we were over 20 weeks along at that test. They cautioned us that there are some defects one cannot see in the ultrasounds or test until after birth which we can understand but it’s still a relief for now, no news is good news. We did find out it’s a boy! Cam will be a big brother and is very excited to have a playmate. Cam wants to name the baby boy after a super hero like robin so he can be batman or iron fist but that may not happen.
Cam had another cardiology visit in Febraury where the testing went much less stressful and unnerving unlike the previous visit. We practiced the ekg and Echo at home a few times just going over and over what to expect as he is very aware and quick to follow what is happening. We practiced with stickers for the ekg and just a toy stick for the echo moving it over his chest, belly and neck somewhat like they do each time. We reassured him there will be no shots or tubes put into him or as he calls them pinches and wires. Cam was a very good boy and there were rewards for his bravery and patience. The results came back with his heart function showing as ‘better’ compared to the last visit. We don’t need another cardiology follow up for four months so our next appointment is at the end of June. Cam is finally off Lasix completely so the only medications left are half a baby Aspirin once a day, 2ml Enalipril twice a day for heart function and the Coumadin which a blood thinner or anticoagulant like 3 times stronger then aspirin. We are currently giving Cam 2.5-3mg tablets a day. The Coumadin medication is still not leveled according to the weekly blood work. They want his Coumadin level to be between 1.5-2.5 and we have been just under that for months.
The Coumadin has been a head ache to say the least an arm sore for poor Cam. They need blood work to test the Coumadin level which we call it a pinch for Cam. Cam hates it and so does Momma but Cam is truly brave! The Coumadin level can be altered by diet very easily and especially anything with vitamin k. At first we expected it to change after the fat free diet restrictions were lifted last year but then we ran into other things with vitamin k in his diet like his pediasure. The medication is still not leveled so we are having to do miserable weekly blood work trips and I’ve made a clear point not to allow more then 1 daily pediasure. Cam doesn’t need pediasure but I find it could help his body and heart to have those extra vitamins he’s missing in his picky toddler diet. Also, Cam loves that stuff it’s like a milk shake and asks for it every single day. Anyway Cam should be on the Coumadin as long as the fenestration is open in his heart. The fenestration (window) is a small hole they created in his heart during the Fontan surgery. A fenestration is placed between the right-sided pulmonary blood flow and the left-sided systemic circuit. This window is created between the conduit and the outside wall of the atrium, acting as the needed safety valve to guard against too-high lung pressures. I’m to understand it should naturally close eventually maybe months or longer. Hopefully there will not be a need for a Cath or intervention to close the fenestration but that’s possible if the Doctors decide it’s necessary.
We had a heart walk for Cameron in Mandeville thank you all who came out to support us, it means alot to our family. We took Cam to the Marvel Live show to see all the super heroes. When the villan Loki came down from the ceiling his mouth dropped like wow he can fly. It was a special event for the little man and he loved it! We also took Cam to the Monster Jam show which was great to see that he still enjoys that too. Mardi Gras was fun especially Endymion where we made out like bandits with Cam in the ladder. We have been to a few birthday parties of friends and families really enjoying ourselves I’ve added some of those pics too.
We are past the 3 scheduled HLHS surgeries to have Cam’s heart reworked so he can be alive today to enjoy life. There will be regular check ups and he will be followed by his cardiologist all his life. Some have mentioned that the heart can maintain with this new functionality up to adult hood. Sometimes a heart transplant could be necessary down the road depending on the condition of the heart and the amount of work and stress it can handle through time. Until then we take evey day as a blessing, thank you for following our journey. If anything new comes up we will be sure to post.