Yesterday we went to the annual cardiologist visit. Benji was very tired because he didn't sleep the night before. Schedule changes cause issues with sleep schedules and we just went back to school on Wednesday after 2+ weeks for winter break.
The last month or so, there has been a feeling. I can't explain it. I just have had a feeling that change was coming and it is/was centered around Benj.
I need to say, I fully appreciate medical personnel, please don't think I don't. After I woke Benj up from where he crashed in the waiting room... the nurse took us back and proceeded to get his vitals. (Standard procedure.) Benj weighed 133.4lbs and is 65.5". (Major growth spurt.) His oxygen levels were at 99%. Blood Pressure in his right arm was 95/70. (Note he was resting, had been asleep.) Everything looked good; until the blood pressure in his right leg was read. It came back 111/75. Not a major difference, but I realized there was a problem when the nurse came back to check it again. The second time his leg was 126/103.
My mother's gut twisted. I knew something was going on. I started praying. Praying to know what questions to ask. Praying to be able to maintain composure no matter what news we were given. Praying to be Benji's rock if needed.
The doctor came in and she started reviewing his medical history. Asked a few questions about anything being different. I brought up his fatigue and headaches. She said she was pretty sure that would be his ongoing sleep issues. (Which the child stays up all night unless we are able to wear him out.) She noted that at birth the only procedures done was the repair to the CoA and the PDA, there was not a cath procedure. That mother's gut twisted a little bit more.
First step, the EKG. Benj laid down on the table and was asleep before he was completely hooked up. As he lay there lightly snoring and still, it was a moment of peace. It came out good. Rhythms are healthy.
Next, the ECHO. His aorta is nice and healthy. The repair is maintained. (Subclavian flap repair at one week of age.) His bicuspid aortic valve has moved into the mild stage where it was slight. The thickening of the left ventricle is concerning. There is a significant change, and our cardiologist is conferring with the surgeon as to whether we do a heart cath now or wait.
All of this can be overwhelming. For almost 12 years while Benj's heart has been monitored, it was stable and we had convinced ourselves that the big hurdle was done. We were fooling ourselves. Benj will always need a cardiologist and always keep an active role in maintaining health. As I research his condition (originally CoA, PDA, BAV with stenosis) I am seeing that this will be a lifelong medical concern.
I know what our journey is taking us to is a walk in the park for some of those in the CHD community and I will not take away from that. Yet, this is new and undiscovered for us.
- How do you talk to your 12-year-old child that has Aspergers about what is coming?
- How do you prepare siblings for the changes that will be coming?
- How do you keep a level head? (hello?!? This is my baby we are talking about.)
I'm trusting in God, I know He will bring us through. He always does. He is always faithful. I ask that you pray with us for God's favor and provision.
~ Benji's Mom