Never mind...

After waiting and waiting and waiting, we eventually dropped off Jacob in the OR for his procedure. We went up to his room to pick up his belongings and bring them to the ninth floor because he needs to be in the PCICU after the surgery. They dropped the ball on this one. After confirming that they had a room in ICU - it miraculously vanished - surgery cancelled.
After taking an entire day off from work and cancelling a dental appointment, the surgery is pushed back until who-knows-when. We are more than a little bit irate.

Gastric tube surgery

Today Jacob is getting rid of his nasal-gastric (N-G) tube in favor of a permanent gastric (G) tube. I am very surprised of what a few days can do to improve one's health. While we were waiting, the doctors were doing their rounds and we got to listen to the discussion about Jake. The doctors said that his heart condition has improved and they were actually positive about it. It has been a while since I heard good thing about his heart. It is just past noon now and we are going to be called down shortly. I hope this photo is the last photo showing the N-G tube coming out of his nose.

Even better News!

Jacob has been moved out of the PCICU and is in a regular room. He just keeps surprising me lately. This is a huge step on his long journey back home. Plans are being arranged for his transfer back to St. Mary's.  It is still a long way off, but there is finally light at the end of the long tunnel.

Now for some good news for a change

Ever since his catheter procedure that was touted by the doctors as being unsuccessful, Jacob has actually been doing great! He has been extubated and is even off of the CPAP! The doctors have also cut him off of the milrinone to see how his heart is doing without it. Tonight's nurse, Corinne, stated that he seems to do better without all of the machinery that he has been on for over a month. Today was the first time since the Glenn procedure that his mommy has been able to hold him. Corinne (the nurse, not his sister), noticed that he has even been focusing better and better each day. He still has a little wander in his left eye, but c'mon, he had a massive stroke for goodness sake. Today was a good day; one of the days I consider a victory. I'll take them when I can get them.
Soon he will be given some tests to determine if he can be given a "G tube" so they can finally pull the N/G tube. The G is for gastric and the N/G is for nasal-gastric. The G tube will be surgically implanted and not be as irritating as the other tube. This will help with his feeding and hopefully a faster recovery than he is having now.

Comfortably numb

There are only a few times in my life when I find myself in a complete daze, as if my consciousness was floating somewhere above my body. One time was when I first found out that my unborn son had only half a heart; one other was when the hospital called us after a cath procedure was nearly fatal. That is how I feel today. Today Jake went in for another catheter procedure. This time to stent open a narrow left pulmonary artery. He seemed be on a decline in the past few days and one of the nurses agreed that he really needed to get this procedure done in order start improving. The procedure was to take about 2-3 hours. Jacob went down to the cath lab at one PM and didn't get out until six. After all of the waiting and anticipation, we wrest told that they really couldn't do very much. The entire left PA was narrow and could not be stented. They tried to widen the artery using a balloon to no avail. At this point, there is not much that can be done to make his recovery faster or easier. I also asked about his heart condition. I was told that they were not happy with the progress that he was making and that he would most likely need heart medication all his life to make it beat stronger. This is not getting any easier on Christina and I. We cope rather well with most of this stuff, as if we had a choice, but we avoid the talk about the worst outcome. Today has brought us closer to that possibility.
Today we met a couple of people that were visiting their grandson, Michael. He is three and was undergoing the final phase of the HLHS reconstruction surgery, the Fontan. We were telling each other of the horrors of seeing a loved one have to go through this and it reminded me of Joann who we had met before Jacob was born. Her son went through this 9 years ago. He also had major complications. This has given me hope once more that we will get through this. One way or another.

Left PA stent procedure

Right now we are sitting in Jacob's room waiting for the surgical team to bring him down to the cath lab. We had the usual discussions with the anethnetist and the cardiology fellow about consent, risks, what to expect, et cetera. He is wide awake and responsive.

Just another day

It seems like forever that Jacob has been in the PCICU. It has only been about a month and a half or so. More of the same good news-bad news I'm afraid. The good:
We brought Jacob's big brother to the hospital to see him; John Paul was ecstatic. JP only wanted to give Jacob as many stuffed animals he could find. Even though he rarely sees Jacob, he adores him. JP is a great big brother to both of his siblings. John Paul's art work is all over Jacob's room. It adds a very nice touch to the sterile room. Also, Jacob has not had a fever in four days. If all goes well, his stent procedure will probably be on Thursday. He has also been equated and is breathing only with the assistance of the CPAP.
The bad:
The nurse side that his blood pressure keeps dipping dangerously low from time to tome and he will have to be put back on milrinone.  Milrinone is a medicine given to heart patients when the heart is failing. It gives the heart a boost. Unfortunately, you can't stay on it forever. My fear is that even with the stent his heart may not be strong enough to keep him alive.
He is resting comfortably now and I though it would be a good time for a picture.

Status quo

It has been a while since my last post but not much has changed. Jacob has finally been extubated but he is still getting fevers from a staph infection. This infection does not want to leave Jake alone. Last Tuesday he was scheduled to finally get the stent put into the left pulmonary artery. As we were getting ready to go to the hospital, they called to tell us that he had another fever and the surgery would have to be postponed once more. Corinne has had one tooth break through. Jake, however, seems to be months behind his sister. He actually looks much younger because he is so much smaller. Of course, it doesnt help that Corinne would strip a turkey leg like a pirhanna if I tossed it into her crib. Let's just say she's a good eater. We plan on seeing him tomorow. More then. Maybe some happy family photos too.