Today Carson had his cardiology appointment. Its been three months since his last one. This is the longest he has gone without having his heart looked at.
Last week we went to Carson’s pediatrician. He cried [was scared] when they put the cuff on him to take his blood pressure. So I knew today was going to be difficult.
Prior to today Carson has been easily distracted while getting his echo done. The echo usually takes anywhere from 20-40 minutes and he is usually pretty good.
This time he freaked out when they took his blood pressure, I had to put his probe on his foot to check his pulse ox [which he showed off for! His pulse ox was 94, at home its usually between 83-86].
Needless to say he was not having any part of his echo. He screamed [turned blue] every time the guy put the ultrasound probe to his chest.
The guy was able to get 20 images and a good look at his heart function. He walked out of the room so I could try to nurse Carson to sleep, but that idea failed too. As well as mommy’s fabulous idea of bringing a sucker for him to eat while getting his echo.
While the ultrasound tech was out of this room Carson’s cardiologist, Dr Kung, came in to talk to us. She said she was going to look at what was on the echo so far and compare it to his last to see if we could just stop it all together since Carson was so worked up.
She left for about 5 minutes and came back to tell us his heart function is back to normal!!!!!
She lowered one of his medications and then comes out of her mouth comes something I did not expect.
She said “Now that his heart function is back to normal, after his next appointment (in 3 months) I will talk to Dr Harrington about him having his next surgery.
Carson has followed the HLHS (hypo-plastic left heart syndrome) series of repairs so far. So I had assumed he would continue to do so.
HLHS kiddos get the Norwood [CHECK] the Glenn [CHECK] and the Fontan [which Carson would not have but would have a biventricular repair]. HLHS kids usually have their Fontan at 2-3 years old. So I figured Carson would have his bi-vent repair at the same age…..
I asked her why now. She basically said that the more oxygen to his organs the better. Like I mentioned previously he is usually around 83-86% whereas a normal person is at 98-100%. Lack of oxygen to organs like the brain can cause developmental delays so it is best to get him to the highest oxygenation level as quickly and safely as possible.
So, she did not give me a time frame. I am assuming (making an ass out of you and me) that we will know within the next 6 months when he will have his surgery.
It’s very scary to think of him facing surgery [at any time] especially when it is so much sooner than expected. However, its exciting because the will be normal. Right now if he gets excited he loses his breath, if he is walking he gets out of breath, so it will be nice to see him run and play and not have to limit himself.
Until then, Carson’s next echo is scheduled in May and it will be sedated. What that means is that he will not be able to eat for a certain amount of hours before going in, and he will drink this drink that will make him very tired. He will either just fall asleep or be super calm. There will be a nurse by his side to monitor him and the meds will wear off in about an hour.
Other than that Carson is not 18 lbs and 2 oz and is 29.5 inches long.
He says MaMa, DaDa, Buh Buh (bye bye), hey, and na-ma (grandma).
He waves bye bye, blows kisses, puts one finger up when you ask how old he is, he dances like crazy, points to his boppy when he wants milk, and a bunch of cute other things.
He is walking, kind of, he mostly crawls to get where he is going but he is past the stage of taking his first steps but still hasnt quite mastered walking.
He is doing great! All the doctors and nurses are always so surprised with how well he is doing.
On a side note, the women who took Carson’s vitals today was super super sweet. She is the grandma of Gabriel who had HLHS and passed away on his first birthday. Her daughter Stephanie is pregnant and goes for her fetal echo on March 13. Please pray that this new baby’s heart is healthy! I know I would be a bag of nerves going for a fetal echo after Carson’s diagnosis so I could just imagine how scared they all must be.