Cardiology update and additional diagnosis

  

We had our one month cardiology check up last Thursday and all is well. The appointment was our best one yet from Jasiu’s cooperation stand point.  We pull up to the hospital and he didn't cry, we checked in at reception and first thing he did after saying hi was pull out his hand for an arm band (our hospital gives those out at check ups just in case you were to have other tests outside of the Dr. office in the hospital). This was a good start but next, we get in, he runs to the measuring stick on the wall, then hops on the scale, then pulls out his finger for the pulse ox, raises his hand for the temperature reading, I’m thinking awesome ! Next is our dreaded EKG, because the stickers and leads always freaked  Jasiu out and it was hard to get a good reading, but this time, he just stood still we clipped the leads on and bam, test is done, no tears or hysterics. Finally the echo, when we dimmed the light he did cry for a second and said he wants to go home, pointing at the door, but I laid down next to him and from there he was fine, quiet and still for the entire echo. Never has this happened and I hope it’s a trend in the right direction.

Echo time

From a cardiology standpoint, echo looks good, no signs of fluid anywhere and so our diet change is fine and now no more restrictions. In fact  Jasiu has been feasting on French fries and pizza last week. We also cut down on one of the diuretics, Matolizone is now just every other day to see if he can handle it. One other thing I discussed with his new regimen is the constant bruising and head bumping. As you read in my previous post, this seems to be very common for Jasiu to bump and hit his head…. A LOT ! Based on this new information, Dr. H decided that the Coumadin therapy will be on hold for our guy until he gets a little bit more stable on his legs or more careful, whichever comes first.  Then he played catch with Dr. H and the NP. The doctor decided that it’s less risky to take him off of the Coumadin than to risk a brain bleed if he was to hit his head that hard and be on the blood thinner. I joked that the only way  to keep him out of trouble would be to tie him down to the couch, the doctor responded, we didn't save him with the surgeries so that he would sit down on the sidelines and not get to enjoy life to the fullest. So we continue to live life to the fullest and try to control this little ball of energy that we have now.

Not more than 24 hrs after we stop Coumadin, this is what is on Jasiu’s head ! It's hard to tell on this pic, but it's a pretty nice sized bump and scrape, that actually looks worse today than the day he got it because of the scab that formed. 

He likes to wear his souvenirs on his head. This one is from yesterday’s trip to Brookfield Zoo. We were literally a few feet from the exit already getting ice cream for the road home and there he goes tripping and falling hitting the ice cream freezer with his forehead.  Poor kiddo, he is one tough cookie.

In final news, and for purposes of documenting, Jasiu is starting potty training and he is doing very well. He has big boy underwear during the day and we put on big boy pull ups when we venture out However, on Friday he even woke up dry from the night and after nap time. This is a huge step for us and for Jasiu.  We are so proud of him. 

potty time

The Additional Diagnosis... Well turns out that what I thought was normal after multiple heart surgeries is actually a condition called DiastacisRecti - defined as a separation of the rectus abdominis muscle into right and left halves. Normally, the two sides of the muscle are joined at the linea alba at the body midline. It is essentially a cosmetic condition, with no associated morbidity or mortality.

 It is very visible in the picture below. Jasiu has had this since he was born and since we only saw him laying still before his surgery, I always thought it was because his chest was cracked open several times. This is nothing serious, just something that he should grow out of. The NP joked that I can try to make him do several sit ups daily to strengthen his abdominal muscles but she said its not necessary. They were actually amazed that I brought this up and Dr. H has not noticed ever before.  

Jasiu at our quick lake gettaway getting into trouble. - Notice the ridge in the middle of his stomach. 

Enjoying the summer ice cream cones