Hell

It would be an understatement to say the last week has been the absolute worst of our entire lives. Our little bug is in the hospital with some serious issues with his heart.

Last Sunday evening, Jake woke up from a nap crying very intensely. This is a very specific cry, almost like a scream. After he stopped crying, he was perfectly still for a brief moment then finally settled down. When I looked over at him, he was very pale and in a sleep-like state. I went over to grab him and he was also cold and clammy. He came around within a couple of minutes. His temp was normal. We put him the oximeter and his pulse and O2 levels were fine and he even sucked down four ounces of milk. He seemed fine, but Greg and I were still rattled. We called our pediatrician, but their automated phone system wasn't working. We called the page number for our cardiologist and spoke to Dr. Berman who asked us to come into the emergency room for observation.

Jake had his vitals checked and then went for various tests in the ER - an EKG, X-ray, and Echo. Everything seemed to check out. They repeatedly tried to stick him for an IV line. After 8 attempts we finally said no more. It was four in the morning and he hadn't slept for more than 30 minutes at a time and we were all exhausted. They were ready to send us home, but one cardiologist said to admit him for 24 hour observation. This turned out to be a decision that saved his life.

Once we got to our room and got settled we were woken up again by another IV line attempt. Again it failed. Then our doctor came in and she was very concerned with Jake's episode. They set up another echo for later that morning. The echo showed signs of increased pressures in the right side as well as pulmonary hypertension. The poor function of the left ventricle had been causing a back up of pressure through the left atrium, pulmonary artery and the lungs. We had hoped to avoid it, but it was finally time for Jake to go into the Cath lab to get more accurate measurements and perhaps re-balloon the valve.

We finished up at echo and were being transported back to our room, Jake started gagging and then threw up all over me - he had just had a bottle of formula so I didn't think anything of it. He throws up all the time. He settled down and we got back to the room and started cleaning him up. He was his usual happy self - smiling and kicking. The nurse brought in his meds and I gave him a half dose of his digoxin. He immediately starting that scream/cry he did the day before. After a couple cries he stopped, almost as if frozen, and turned pale then blue. I started screaming for the nurse who had just left the room and Greg ran to get help.

What happened next is a blur. About 50 people rushed into the room. Greg grabbed me and we huddled in the corner while the team worked on Jake. Greg somehow had the clarity to yell, "he needs oxygen" and they got the mask on him right away. He held me while I was in hysterics. We never clutched anything or anyone as hard as we clutched each other.

It's too painful to rehash the next thirty minutes. Jake received compressions and shocks from the defibrillator. They tried to get meds in by poking them into his shin bones since he didn't have the IV line in. Our cardiologist came and dragged us out of the room. She came back and told us they were trying but she didn't think Jake was going to pull through. It was chaos and hell. I felt as if I was outside of my body. Finally after 30 minutes, she came and told us that his heart was finally shocked back into a normal rhythm. We were ecstatic.

Jake is in the ICU now. He has been stable all week. He had a cateterization to create a hole in his Atrial Septum to act as a "pop off" should the pressures in his heart get too high or should he go into arrest again. He's being treated for pulmonary hypertension. They've told us he'll need a transplant.

There is still another step we can take, though it comes with a lot of questions. The doctors in Boston might be able to do an endomyocardium scraping surgery to relieve some of the restrictive scar tissue from the left ventricle. Our doctor in Boston seems to think this is the way to go, but the doctors here do not have any experience with it so can't offer us any advice. We're waiting to hear from Boston on our next steps. From there we'll form a new plan.

I'm going to keep this blog to the lighter stuff - stories about us and Jake from life at home and in the hospital. The hard medical stuff will be updated on Jake's Care Page.

We love Jake more than anything and await the day we bring him home. We know we'll have many adventures to add to the One Bad Bug blog. Until then, please call on whatever you believe in to help him through and send positive energy his way. He has an army full of love out there pulling for him.

Here he is recovering the morning after his cardiac arrest.