CarrieKime

Every year since my son's birth, February has been an emotional month. Yes, my son is a survivor and is doing fantastic, but my mind always wanders back to his hospital stay and almost losing him. February was his most trying month, he was on ECMO and had his repair. My emotions are all happy though, just lots of happy tears.

I just wanted to put a post on here about how we have been doing since. Just in case anyone was curious.

Christian just turned 7! We have our appt. set for April 15th to have a follow up with the surgeon. (Dr. Kays did his original and reherniation surgeries, though we will be meeting Dr. Islaam at the clinic for the follow up.)

Just a brief history, Christian was put on ECMO at 2 days old for 10 days. He had a LCDH. His repair was done at 15 days and there was some internal bleeding after surgery (scary!) and they had to go back in and stop the bleeding within hours after the repair. We had annual follow up visits for the first 5 years, which consisted of a chest X-ray, checking on his pectus excavatum, checking for scoliosis, and making sure he was gaining weight. They also check his O2 sats with the pulse oximeter. He reherniated at 3 years old (discovered with chest X-ray at our annual check up).

Now we are at visits every 2-3 years. This time we are scheduled for a chest X-ray and an ECHO. I am kind of excited to see his heart. Should be neat. I am also slightly nervous. Hoping that nothing is found and praying daily that we get an all is well.

Christian is in the first grade. He loves to read. He is a smart boy with a winderful memory (most of the time better than my own! ) He has been taking tumbling for 6 months. He likes it. I noticed it has helped him build up his abs. I was very worried when he started that it would be too much on him (doing back bends mostly). His teacher never pushes them past what they are comfortable doing. Now, he says he is done taking tumbling because he wants to do baseball. We will be starting baseball here in the next month or so. He LOVES to ride his bike and play outside.

He doesn't really seem to have any complications. He gets the night time hacking cough mostly in spring and fall. I have been told this is just allergies. We aren't on any medications except Singulair (which the night coughing spells crop up). Singulair tends to calm the cough it makes him EXTREMELY irritable and whiney! I am going to try to get that changed. His hearing and vision are "so far so good." His pectus excavatum is looking better as he gets older (less noticable). His belly bulge (on the left) has diminished with age (I noticed a big improvement in the last year.). His tummy used to stick out on the left and was especially noticable after eating. His eating has GREATLY improved. It used to be like pulling teeth to get food in that boy! Now, he won't stop eating! Back in November, we had a little bit of reflux going on. He took Prevacid for 6 weeks and that seemed to help. At least, he hasn't complained.

Well, that is our updated story. I will let you all know how the follow-up in April goes.