Catheterization Day.

Well, here we are talking about the exact thing that I was afraid of.  Tucker's next open heart surgery.  As much as I have dreaded this day, I knew that it would feel like it was right around the corner and it now is. 

Today Gary, Tucker and I headed into Children's for a Cardiac Catheterization prior to his next open heart surgery, The Fontan.  We arrived at Children's Hospital early and reported to the cardiology preop area.  This room is always filled with people who you get to know over the next few days.  You travel to X-rays and blood work together.  It feels like the parents are all robots just going through the motions.  We completed all of our testing and we met with Dr. Porras.  He always calms me and talks me off a "what if..." cliff.

The next day we reported early to the surgery floor.  It was surreal.  I had only remembered it once I saw it.  (It must have been the sleepless nights along with  anxiety.). I recalled where we had to go and we made our way to the desk.  Only to get bumped and bumped and bumped down the list.  Since it wasn't a rush, it was fine, just not fun with a hungry boy screaming "eat" all day.

After a while they gave Tucker a sensitive to calm down and relax himself as he was overtired and getting agitated.  This certainly brought some laughter to our room.  

It calmed him right down and he snuggled with us.

 

I just took action on We Need Pulse Oximetry in Massachusetts on AHA's You’re the Cure website.

I just took action on We Need Pulse Oximetry in Massachusetts on AHA's You’re the Cure website.

Echo..echo...echo...

Today was Tuckers big cardiology test day. I am thankful that I am not the cardiology RN that had to call my house and tell me to starve my 17 month old so that he could be sedated for his echo today. Now don't get me wrong I know that he needs these tests but starving a CHD child who already struggles to eat anything is borderline torture. We also had to keep him awake before his appointment. So yesterday started off with a migraine listening to Tucker cry with hunger pains and due to exhaustion. It was like a slow torture for Gary and I.

Tucker was checked in and placed in an exam room. He is still a little sick and struggling with a low grade fever. 99.0. So the RN called Dr. Porras to have him checked out. Dr Porras came down and told us that he was too sick to be sedated.  The technician did manage to get several shots, which Dr. Porras was happy with.  Dr.Porras would like to follow up with us in a few months as Tucker's oxygen saturation is creeping downward.  Even though this is normal now that he is walking more.  This does mean that we are one step closer to his next open heart surgery, the Fontan.

 

 

Please support us in our upcoming CHD walk. 

 

It's My Heart Walk!

Genetics, hearing loss and infertility oh my.

Tucker update for some of our new followers: As some of you may know, Tucker was born with half a heart. We found out about it during my 30th week of pregnancy. The next year was a roller coaster ride of which I have blurred only memories of. Here are the highlights, at birth he was only the third baby with his diagnosis,Tricuspid Atresia VSD, to forgo an open heart surgery at birth. Because of this we had MANY weekly appointments and even more trips to the Children's Hospital ER for retracting (labored breathing) feeding issues and the dreaded common cold. On February 28, we handed our little boy over to Dr. Emani and his team for Tuckers first open heart surgery, The Glenn. It was the longest 5 hours of our life. After several weeks of RN visits, handfuls of medicine and that terrible NG tube, I am happy to report Tucker's heart is doing well.

This is where we are now. After Thanksgiving, we had an appointment with Genetics where we were told that Tucker has a partial deletion of chromosome 15 which could interfere with hearing loss and infertility. After a closer look and more genetic testing they have determined that Tucker's heart defect is not genetic. Tucker will have to continue to have hearing tests and prior to having children his significant other will have to be tested to see of they are a carrier of the same chromosome 15. All in all, we are very happy and there is much to celebrate here.