New Year, New Checkup, New Results

Hi guys, I'm Benji's mom. Sharing my thoughts right now. Momma's have to process too.

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

New Year Refocus

The last year or so has been an unfocused jumble. I have not stuck to a routine like I should and it has shown.

It does not matter what label the doctors put on me or whether I am considered to have issues. First and foremost, I am me. God made me just the way I am.

What my family knows is that I need structure and I need to learn discipline. Along with that, I need to refocus my exercise and dietary needs. When looking at what needs to be done written in black and white, the realization is that this will not be a small task. Fixing my diet will not be that hard because we haven’t strayed too far, the problem areas are the exercise and structure.

I was in Tae Kwon Do, but I quit last year. I had some problems I needed to work through and now I don’t want to go back just yet. So, we need to find something else to replace that structure and exercise.

As far as my health, my heart is stable. I have a bicuspid aortic valve with stenosis. Right now it is considered mild stenosis. This is nothing short of a miracle considering after the surgery for my coarctation we were told I would probably have to have at least an ablation by the time I was two.  

Dietary wise, I am hypoglycemic and my body does not process any artificial sugars. This means all natural for me. Plus, I have a few interesting allergies and sensitivities that make life interesting. Lactose intolerance, red and yellow dye allergies, and the list gets odder from there.

Here is to a refocused new year!

Annual CHD check up!

Today I went to my cardiologist, Dr. Hermo at Children's Hearts in Nashville.  We got there a little early, but I didn't mind. I knew mom needed to allow time for traffic and everything since Nashville can be crazy at times.

My oldest sister came with this time, but she pretty much stayed quiet. I think she just wanted to get out of the house. And she sure did not want to get caught in a picture.

Anyhow, we ended up getting there about thirty minutes early which I guess is better than being late. That was fine with me, I brought my LEGO Ninjago: Character Encyclopedia with me plus there was the fish tank and a few toys there to play with. Which, as mom skillfully captured, I had to fix the blocks. Can you believe somebody had mixed the colors up? I of course had to put them where they belonged.

 Once we were taken back to the exam room we had to wait a few more minutes, but I was able to humor myself there too.

So, for review... At a week of age I had a subclavian flap repair for CoArctation of the Aorta and to take care of the patent ductus arteriosis. In addition to that my Aortic Valve is bicuspid with stenosis.

 There are a few things that Dr. Hermo does to make sure my heart is working well. She starts with a basic exam that involves listening to my heart and checking for my pulse in the extremities, that tickles sometimes. After that she checks my blood pressure, which was excellent (87/62). Then she uses the pulse oxymeter to measure the amount of oxygen in my blood and my heart rate which oxygen was 98% and pulse was 76, although I was wiggling my finger. I did not like the machine she used this time because it is the one that clips onto your finger and I thought it was going to pinch me.

After that, I went and got measured. I am 4ft 6in and 65lbs. Mom asked where I am hiding my weight.

Once that was done I had an EKG(?) where Dr. Hermo put 10 pads and wires on me and this machine printed out some lines. I did not like the way the pads felt. They were gooey and sticky, that made it hard to stay still for the machine to get the information it had to get.

After that I had the echocardiogram, which is an ultrasound of the heart. My aorta was checked to make sure everything looked good, which it looks beautiful! And the valve was checked to make sure there were no significant changes. Current diagnosis is mild stenosis with negligible change from last year. Treatment is to continue what we are doing and if any symptoms show up call. Other than that, we go back next year.

Praise God for another awesome year!

A Good Check Up

Benji went to the cardiologist Friday.

Benji has a repaired coarctation of the aorta and a bicuspid aortic valve. Since he was a year old he has been going for 6 month checkups to keep an eye on things. His last two check ups prior to this one there was minimal change with the valve and we were praying the same for this one (or better!).

Height: 47 inches
Weight 49.8 pounds

Pulsox 97% (this is oxygen in the blood 95+ is great)
Blood Pressure in the right arm 79/64  right leg 90/55 with pulse of 65

Because of the CoArctation repair, blood pressure can not be taken in the left arm because there is not a subclavian artery. (The repair was the subclavian flap) Also because of the corrected defect blood pressure has to be taken upper and lower to ensure good blood flow. All of his stats were good.

After the doctor did the echo-cardiogram with all the measurements and everything, she said he was looking really good. Benji even did well during the check up with no crying and being fairly cooperative. He still does not like the ultrasound gel used during the echo though.

The awesome news is that everything is stable, the repair is still beautiful and the valve is unchanged. As long as he is not symptomatic our next visit is in a year! We have reached another positive milestone! YA! And that is a big praise God!

Six Month Checkup

Yesterday, I went to my Cardiologist. Dad got to go with us this time, Dr. Hermo was surprised to see him. LOL.

The basics... I am 46 1/2 inches tall and 45.1 pounds. (Or at least I was yesterday)

Stats. Due to my defect my blood pressure has to be taken in my right arm. Yesterday my blood pressure was 80/61. To check that I have equal pressures Dr. Hermo also checked my blood pressure in left leg. It was 85/67. The oxygen was 97% with 90 pulse.

The echo was pretty much uneventful. I was a very good boy and stayed still for the pictures. The CoArctation Repair is still perfect. My Aortic Valve is bicuspid with mild stenosis.

This time Dr. Hermo also did an EKG and she said everything looked good.

The only thing we have to watch on is no aggressive sports (no football, soccer, etc) and if I play other sports, the coaches have to understand that I will get tired quicker than the other kids. For school, I have no restrictions as long as the teachers understand that I have to stay hydrated, not get over-heated and to be able to rest when I get tired.

After the check up we went to the Zoo. I was sad that the Bengal cubs weren't there anymore. I did get to see the big Bengal Tigers, the Eurasian Leopard, the Lynx and then the Reptile House.