Tuesday, July 30, 2013

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 

Monday, July 8, 2013

Dancing in the Rain

Life isn't about waiting for the rain to pss... It's about learning to dance in the rain
We went on our first family “vacation” (only 4 days 3 nights) post Fontan over the 4th of July weekend and this was hanging on the bathroom wall. How appropriate for our life and THIS trip.  Instead of holding back and not traveling just yet, we pack up a bag full of meds, cooler full of fat free food and a large first aid kit and take off for a mini vacation (cardiology approved of course) 

My travelers as we head out

During this short stay in Wisconsin Dells, we visited the Urgent Care clinic, Walgreens pharmacy and the local Walmart, can you imagine if we went on a weeklong vacation. After this trip, Jasiu looks like he went to war instead of a vacation, our toddler is on the move all the time and I feel like I need to invest in one of those kid leashes or something and even that wouldn’t be enough to hold him down. He is LIVING his live, with each bump, bruise or cut and we are just learning to go with the punches.

To give you a quick recap of Jasiu’s adventures:  1) as we check in he decides to make a mad dash for the door and trips, Emily decides it’s a good idea to drag him by his foot to us and that creates a pretty nasty rugburn on his back (we didn’t even check into our room yet).  2) as we unpack, Jasiu thinks it’s a good ida to cover his head with his blankie and run around like a madman. Before I got to stop him he bumps his head on the rather tall table with his forehead. Creating a nice bump and a bruise 3) we go miniature golfing at the resort after we unpack and calm down after the bump, Jasiu gets a Hole in One on his first ever try to golf and a few holes down he trips backwards over the curb and hits his head on the only pointy rock in the area. He gets a pretty deep laceration about a half an inch long. After we get the bleeding under control with the help of the resort paramedics we visit the urgent care clinic with the help of our friends leading the way. The clinic doctor advised that this cut does not need stiches (I was sure this would require stiches but apparently it didn’t) A call to the cardiologist and we are advised to “watch for signs of possible concussion” and stop Coumadin and aspirin for 3 days.  Then we continue on with our vacation.
Forehead bruise (3 days later)

See the rug burn and head wound (both 3 days later)

 Next, I realize that one of Jasiu’s meds were not closed properly, totally my fault, and spills all over the medicine bag so we need to transfer our script to the local pharmacy to get our 3 days’ worth of meds.  Finally on one of our sightseeing adventures Jasiu falls asleep with the pacifier in his mouth and as we are walking along a bridge on the river, the paci falls out of his mouth straight into the Wisconsin river. No Nuk pacifiers in Walgreens so we had to head out to Walmart for a new pacifier, we almost had to buy a pink one but I was able to search the racks for a boy color in Jasiu’s desired shape and size. ( he won’t take other pacifiers and is one cranky baby/ car traveler without it).

Despite the above, we had a great time. We learned that both kids can take up to 4 hours in the car traveling before they get bored out of their mind. Jasiu loves jumping into the water and Emily wants to start swim classes. Both kids were so exhausted from the days’ adventures that they fell asleep very quickly in the evening. We also didn’t need to bring the pack and play because Jasiu did very well sleeping on the bed with Emily, although he didn’t like being smothered by Emily, who loves to cuddle and Jasiu is not a big fan of that, he needs his space when he sleeps.

We visited Christmas Mountain Village at the Dells and it was such a relaxing place to stay away from the hustle and bustle of staying on the main strip. It had plenty of things to do for the entire family and a nice porch for mommy to enjoy a frozen margarita on the front porch.  

Finally, we began the transition to regular food for Jasiu and he was quite happy to enjoy an ice cream cone, mac and cheese and ravioli one day at a time. On the day we came back, we treated the kids to some McDonald’s French fries for being good travelers and we actually had to take the fries away from our little guy to make sure he we didn’t go overboard in the first few days of transition.  He LOVED them. I don’t think he knew he missed them so much since we never mentioned them or ate things he could not in front of him, but the pure joy when we mentioned fries and then while eating was priceless. It was almost as great as when he got his sippy cups back.  

So this crazy journey we are on, we learn to dance in the rain and not wait for it to pass because frankly, our rain will never pass.

I hope the rest of the summer is just as memorable as this trip, just less painful for Jasiu.  Maybe on our next trip we will be able to eat out more instead of bringing a fridge full of food because of special diets.

Waiting and waiting for fireworks that never came :(

Upper Dells Boat Tour

Emily enjoying the water play

Mommy in the kiddie pool :)

Jasiu taking a siesta at the water park

Monday, July 1, 2013

Long overdue Update

I can't believe that I have not updated in almost a month. Believe me, that in our world no news is good news and good news it is. Two weeks ago we had a great cardiology visit with an x-ray but no blood work besides an INR check. This made for one happy boy.  X ray was crystal clear and since he's been of of the fluid restriction we have had a much happier boy  but a going crazy worrying kind of mama, so this eased my fears. So after this last appointment the doctor decided the next step is to cut back on one of his diuretics once a day as his body should be getting used to the pressures and the fluid should ease up and not be dependent on the diuretics so much. So he's now on metolizone 1mg once a day, aldactone still twice a day, 1 baby aspirin, coumadin (1.5mg 5 times a week and 2mg twice a week, we are still adjusting the doses on this one) and his multivitamin. Since he's easing on the diuretics we were able to stop the potassium and sodium supplements.

Other than the medical stuff we have had a very happy and ACTIVE little boy. Jasiu and Emily are enjoying their summer so much that their bruised legs and arms and heads show it. They both are enjoying life together so much and it brings joy to our lives that just two months ago this kid was fighting for his life. 

Next appointment in two weeks, complete work up, echo included. Enjoy your summer months as they go by too quickly :)

Jasiu enjoying all of his sippy cups taken out of hibernation after fluid restriction was lifted

Father's Day 2013

Jasiu went to his first wedding - they clean up pretty well :)

We are enjoying the splash pad

We cheered on our 2013 Stanley Cup Champions - The Chicago Blackhawks !!!

Just enjoying the summer - our little diva