Day by day, a little bit better

It has been 9 days since Jacob has had the Bi-directional Glenn procedure and the completion of the Norwood procedure. After a scare or two, he is getting better day by day. We feel that he is really getting out of the woods.

His chest was finally closed after his swelling went down and the staff is slowly bringing him out of sedation. I would love to see him fully awake, but I have to wait. He is still not breathing on his own, and will be transitioning to a CPAP for some time but he is expected to be extubated in a few days.

Hanging in there

Jacob's heart condition is improving and it is doubtful that a transplant is needed. Jacob is proving to be a tough little kid. His swelling has gone down a lot. After tomorrow I feel that I can rest better. I am anxious to see him wake up. No one knows if the surgery has any effect on his neurological condition. He did not go into any distress like he did after his last procedure so I don't think another stroke will be an issue, but I am keeping my fingers crossed anyway. We won't know until he is awake and completely out of sedation. He has been under so long that it may take a while to bring him out. At least things are starting to look up. I intend to make this blog inspirational and not pessimistic but we are going to have to wait until Jacob is home and I can hold him in my arms every day. Sorry folks.

Complication...

Tonight is going to be another long night as I lie awake thinking about the implications of what two of the cardiologists said today. One said that Jake's heart was not beating as strongly as he'd like to see and the other said that while that was true, Jake's heart has just come through a serious trauma and needed time to heal. I hope that the second cardiologist is the right one. If the first one is right, it means that Jacob's condition will continue to deteriorate and he will be eventually put back on the heart-lung machine and put on the transplant wait list. A transplant is not an option I particularly care for. Jacob would have to take anti-rejection drugs all of his life making him susceptible to a great many immune system problems. A simple cold or ear infection turns into a big deal.
When the twins were born, we saved their cord blood in the hope that one day science would have progressed enough that a new heart could be grown in a Petrie dish somewhere. Maybe one day his heart will be replaced by one grown in a lab from his own stem cells, but that is not possible right now. Other than the problems a transplant would create, there are not a whole lot of five-month-old hearts waiting for recipients. Infant mortality in this country is pleasingly super-low...unless you are the one waiting for the organ.
Before any of this happened I was a supporter of organ donations. A friend at work has had a double lung transplant almost ten years ago at NY Presbyterian and he celebrates every year by hosting a charity golf outing at Rock Hill in Manorville. I am going to be pestering him a lot more with my questions...sorry In advance Charlie.
I am trying to stay positive and retain the sanity that I have left but it is getting harder as time goes on. Just when I think Jake is doing better, life throws him a curveball.
I can't say enough for the the support that I have received from close friends, friends I am not as close to as I would prefer, past acquiantances from days gone-by and, of course, family both close and extended. Now I seem to need the support of the Big Guy upstairs. I hope He is listening to all of the hopes and prayers being said for Jacob.

A sigh of relief

Jake's surgery is over and went well mostly. They could not close his chest due to swelling and they are going to keep him unconscious for a few days until they can close him up. Seeing him cut open with all the tubes sticking out of him was a little unsettling and not for the squeamish. The next twelve to twenty-four hours are the most critical and he may go into distress at any moment. That being said, the nurses told us to get the hell out and get some quality sleep because we live close enough to do so. I was pondering the thought of staying the night at his bedside but staff knows best. The guy i saw tonight sleeping in the waiting room on the couch will wake up with a terrible backache. He did not look comfortable. Jacob is still in critical condition and not out of the woods yet, but this was a big hurdle for Christina and myself as well as Jake. A lot of people say to me "I don't know how you do it." The truth is that I don't know either. I guess I have to do-it because nobody will do it for me. Right now I'm tired, sore from sitting and letting the iPad correct my spelling. I am not thinking clearly and have to hit the sack. Another long day at the hospital awaits and it's going to be 100 degrees in Manhattan tomorrow.

Hope, thanks Pandora

The last thing that Pandora released when she opened the box was Hope. I do not see hope as the curse to humanity that was told in the story. I am now waiting in the Pediactric ICU at NY Presbyterian and hope is the only thing that is keeping me going right now. Jacob is downstairs in the OR getting the Bilateral Glenn procedure, completion of the Norwood procedure and removal of the pulmonary artery bands that limited the blood low to his lungs. We got here at around 9:20am and we got to hold Jake for what we know could be the last time. We signed many consent forms for the procedure and were told of the risks. We already knew that this surgery was risky. What we did not know was that the stroke he suffered was hemmoragic and not ischemic. A hemmoragic stroke is much more dangerous. The neurologist had to clear him for surgery because there are additional risks associated with a hemmoragic stroke. If it were not for hope, we would be going through despair and depression. We are receiving so much support and well wishes from friends and family and we are grateful for it. Thank you everyone for your prayers and support. We are told that we would probably not hear anything until 7:00pm or so. This is going to be one of the longest days of my life.

'Twas the night before surgery

Tomorrow is the big day.  Jacob is going in for the Glenn Procedure to move the superior vena cava and the aorta.  The procedure will also include the removal of the atrial septum.  This will be his most extensive and most risky surgery to date.  The operation is scheduled for 1100AM and should last 4-6 hours.  It is going to be a long, long wait for his mother and I.  On the positive side, he will be stronger and his heart will be less strained.  His lungs will also be less likely to be affected from his heart due to the fact that the lungs will be supplied with blood from the body and not directly from the heart.  This is considered a low pressure flow and is less damaging to the lungs.  I am not looking forward to seeing him in recovery.  When he was an infant, he looked like hell afterward.  Now he is more aware than as a newborn.  I just hate to see the little guy in pain.  He's a screamer like his sister and I think he is going to give the staff a hard time.  I don't think I am going to get a lot of sleep tonight...

The anxiety sets in...life on hold

As we are less than a week from Jacob's next major surgery, the Glenn Procedure, Christina and I are becoming rather anxious.  Last night we discussed the all-too-real possibility of  having only two kids to raise after Wednesday.  Both us us have always known the risks behind this procedure but this is the first time we laid it out on the table how each of us feel.  While I keep pushing away the thought of losing Jakie, I still feel it is a strong possibility.  Christina and I both have bad-feelings about this surgery.  This poor kid hasn't been able to catch a break since birth, why would that change now?  Last night we discussed the issues of life insurance and funeral costs.  I know it sounds horrible, but we have to be honest with ourselves; he may not make it out of the OR on Wednesday and we have to be prepared for it.  How do you properly prepare for the death of your child?  I know we should be planning for his future, but we have to deal with the present first.

Back in NYC.

Jacob's stay at St Mary's was cut short last week after the doctor found that his blood pressure was a good deal different from side to side. We are back at CHONY.  The doctors' concern is that there may be something going on with one of the stents.  Jake's next surgery is scheduled for July 20, 2011.  This is the "big one."  The first surgery back in February was minor compared to this one.  This is the first time they have to arrest his heart and put him on a heart-lung machine.  I am anxious to say the least.  He is starting to sweat a lot just like before the last catheter procedure.  That means his heart is working overtime and he is just lying there. It really is time for the next step.
As far as his stroke recovery is going - he looks good.  His eyes cross less while he looks around. He looks left a lot more now.  He still has much weakness in his left arm and leg.  He sure cries like a normal 5 month-old. Deafening.
He is just too cute for words.  I think that, like his sister, he is starting to teeth.  He is still being fed via n-g tube though and won't be needing them any time soon.
FOOTNOTE:
NEVER DRINK A BEER WITH DINNER WHEN YOU HAVE A CHANCE OF BEING CAUGHT ON THE CROSS BRONX EXPRESSWAY.