Update since OHS #1

I previously thought that when you were in the hospital (or sitting with a patient) that you were beyond bored...and, for the most part, just watched TV all day long. In our hospital experience within the past 5 weeks, I have hardly watched any TV and can't remember much time of just plain boredom. I usually don't know what day of the week it is...or when I ate last...or much of anything. Our hospital rooms have all been interior rooms (i.e. no windows), therefore, we can sit much of the day without realizing we missed "lunch". There have been days where we arrive before daylight and leave after the sun has set.

So that all being said, this is what has occurred since my last post...

We knew a procedure of some sort was imminent. We knew that the cardiologists and surgeons were debating a heart cath to balloon his pulmonary valve or open heart surgery to (hopefully) fully repair all of his heart defects. I had been carefully listening to the doctors and nurse practitioners each time they came in and discussed his case. I knew the pros and cons to both (or so I thought at the time). And on Tuesday, I was fully prepared to tell the cardiologists that I wanted them to at least try the heart cath because he was just too small for the full repair (i.e. open heart surgery). But, of course, the cardiologist came to do another echo and gave us some various information and answered our questions that afternoon...And I realized that he is a whole lot smarter than me and I just needed to trust him. So open heart surgery seemed the way to go. We were told that a possible angiogram would happen later in the week because the echo wasn't able to provide all the pictures they needed to locate the coronary arteries (how they laid across the heart).

On Wednesday morning, we arrived at the RNICU where his nurse told us that surgery was most likely going to happen on Friday. Open heart surgery for the full repair! I had been preparing myself for surgery to occur on the following Monday at the earliest...BUT FRIDAY?!?!?!!! I had a little bit of a cry and then pulled it back together. Friday it was. As time moved on, we heard that a last minute opening had occurred in the operating schedule and Robert would be the first case Friday morning. We spent as much of our time with him as possible. Because of pre-op tests, labs, x-rays, etc., we were asked to leave the room throughout the day only to return to find one more bandage or one more monitor. We met with Dr. Dabal, his pediatric cardiac surgeon, on Thursday afternoon. He explained the entire procedure, what they would be doing, and what the possible outcomes were. Of course, everything came with a percentage...For example, 2-5% of receiving a pacemaker. My thoughts were 2-5 out of 100...Well, it was 1 out of 4000 for TOF...Those odds just don't look so good anymore. And asked us to sign consent...

Friday came quickly and we were up at 4am for surgery to start around 9am. All the grandparents arrived before 8am. At 8:30am, we walked with him to the Cardiac Operating Area and said our "see ya later's" (NO GOODBYE'S!) and then were escorted to the CICU waiting room.

Our wait included a few visits from friends and family, including the Hathcock family! When I posted in the TOF facebook group about our upcoming surgery and needed advice, my email buddy, Stephanie, sent me a message about stopping by the CICU waiting room as they would be at a cardiology appointment that morning at UAB as well. We have never actually met the Hathcocks, but through six degrees know the same people. It's nice to know someone going through the same type of thing (Micah is 3 months old), using the same doctors, and near each other in proximity.

A few hours after surgery had actually started, we received the call from the waiting room nurse that the surgeon was ready to see us. The surgeon came in and through a lot of words told us that he was unable to do the full repair. Basically, the right coronary artery sits right over the pulmonary valve making it VERY difficult to make the cut to repair and enlarge the pulmonary valve. Therefore, Robert was given a central BT Shunt. Even that was more complicated as he was on the heart-lung bypass (usually not when just receiving the shunt), therefore, he bled more than usual. Also, Robert has a right arching aorta (versus left arching aorta like most people)...This apparently means (for Robert, at least) that he has 4 smaller branches of the aorta versus [in a left arching aorta] 1 large branch and 2 smaller branches. Originally, this is one of the reasons that we were told the BT Shunt was not an option (the larger branch was not an option)...When the shunt is sewn into one of the branches of the aorta it actually make that branch smaller (due to the stitches), therefore, sometimes worsening blood flow.

The good thing about all of this is that we have bought some time before the full repair. He has time to eat, grow, gain weight, and be stronger. Of course, Robert is still on a ticking time clock...He needs the surgery for a full repair before he is one. We don't know when his next surgery(ies) will be, but his surgeon told us that he will probably need at least 2 more open heart surgeries and possibly a procedure in between (heart cath to balloon the pulmonary valve). It seems like we have a busy year ahead, but at least now, the cardiologists and surgeon have a map of his heart. They know where everything is and how they will need to get there.

After the surgery, Robert was in CICU and stayed there until Monday. And then moved to a recovery room for pediatric heart patients. In CICU, Robert had his very own nurse, scheduled visitation hours, and doctors rounding every hour. In the step-down recovery area, the parents do all the work...We feed him, change him, bathe him, etc. plus help administer all medications. Someone had to be with him 24/7 and he could not be left alone under any circumstances. They were preparing us to go home. On Tuesday, we were told that he was doing really really well so we would most likely be discharged on Wednesday. The surgeon came by to check on him and felt that we were fully capable of taking him home that day! So it took most of the day to meet with various people (who were teaching us how to do things) and then we left. The doctors were happy to hear that we were staying only a few miles away and were staying for an additional week regardless of him being in the hospital or not (another already scheduled appointment on August 3rd that we have had for weeks). So they scheduled an appointment on August 4th as well to have a check-up before we return to Mobile. At that time, Robert's pediatrician, Dr. Weinacker, and his cardiologist, Dr. Batten, will take over his care until we are told to return to UAB for further surgeries. I only hope that the next procedures/surgeries are scheduled and it includes no emergency flights! [Selfishly because I would like to have more than a handful of mix-matched clothes with me for a 3 week stay 5 hours from home.]

So 3 days later, as Robert recovers from open heart surgery, we are taking it slow. The slightest thing causes panic. Did he eat enough? Did he eat it too slow? Too fast? Is he crying too much? Is he crying because he's uncomfortable? Is he having enough wet diapers? Is he blue and ashy in color? Is he sleeping too much? Lots of questions...

I will be adding pictures later...Check back soon!