Thursday, January 2, 2014

Heart Catheter #3

Max was scheduled way back in September for a cardiac MRI and a heart catheter in preparation for his third surgery. Because of a pretty continuous ear infection since that time, it was pushed back until December 30th. Not wanting to push it back any more, we avoided the world 2 weeks prior to the procedure which meant Max missed the last week of school and we skipped out on the big family Christmas gathering. We still had a very joyful celebration with Edgar's parents and brothers and with my parents.

Like crazy people, we decided to move Max from his crib to a bed and we moved Max in with Clare for the next 6 months or so until we can move the boys in with each other. We decided to do this a couple of days before his procedure. What can I say? Cabin fever will force you to start tackling those house projects you've been putting off! Needless to say, the night before his procedure was really interesting and I think he finally went to sleep around 10:45. (He went down around 8:30!) I couldn't sleep at all. We got up at 4am and were out of the house by 5am. Houston traffic is awesome at that time (ha!) and we checked in at 5:55am. Max slept the whole way there. He woke up in the MRI waiting room and we read some books and watched some cartoons. He was incredibly happy and his mood gave us a lot of peace. We were called back around 6:30 and all the pre-procedure questioning started. The Cardiovascular Anesthesiologist said we were only going to do some light sedation for the MRI. When we pointed out that he was going on to the Cath Lab after this, the Doctor quickly said that light sedation is not what we are going to do and he was glad we said something. Can I get you some coffee doctor? They wanted to start his IV before he went down and Edgar and I said no. Max is notoriously a hard stick and I didn't want the trauma of trying to poke him and then getting him to take the mask with the anesthesia. (He has 9 pokes on his body where they tried to get the IV! He came out with two open lines on his feet. Momma and Dad know best) After some convincing, the doctors agreed and decided to do all of that once he was asleep. They gave him versed to ease the transition and then got Max to put the mask on. We were there for all of it and even with the versed, he was crying with the mask on while Edgar held him so he wouldn't fall off the bed. It was pretty emotional for both of us, but I wouldn't have done it any differently. We walked out in tears and went to go check him in for the catheter and wait. Although we've done this a lot, it never gets any easier. We sort of know what to expect and we know the things we need to demand (like the IV situation) and this time around we know that we need to make sure the doctors know exactly what the plans are for the day.

We signed paperwork for the Cath and then checked in on the 17th floor with the Heart Center. We waited in the pretty plush (full kitchen with meals provided, reclining seats, board games, books, magazines, TVs, etc., basically anything to distract you from what your child is going through) heart center waiting room for a little while, but it's hard for Edgar and I to sit there. Families are going through so much and you can feel the emotion and nervous tension. One very young couple was facing the reality that there was not much the doctors could do for their daughter. Most of the time when I'm in the waiting room, I just watch and listen to other people and just pray. It takes a lot to not just sit there and cry all day. Sitting there makes you realize that what Max is going through is nothing. We're not faced with the suffering that other families go through, and Edgar and I constantly remind ourselves that we don't want to forget for a second all these moments in the hospital.

Our cath Doctor met with us and told us the all the risks and her plan for the catheter. The major goal of both the MRI and the catheter is to see if they can patch the hole in Max's heart and give him full function of his heart. Up until now, they haven't been able to get good enough pictures of the hole. Dr. Heinle looked at it both times during his last two surgeries, and last surgery he almost went for it, but then decided not to. So there was a lot of hope with these procedures. Unfortunately, after the cath, the doctor didn't have much to say which leads us to believe that she wasn't able to see the hole either.

The MRI and the cath took about 7 hours and then Max was in recovery until about 7pm. We spent the day chugging coffee, walking the hospital, and reading (No time like the present time to start Pride and Prejudice!). Edgar wanted to play hide and seek in the hospital, but like a responsible adult, I declined his invitation. He did, however, not turn left for most of the day which led to some pretty hilarious entrances and exits from elevators and doors. (Zoolander has a very real and lasting impact!) We only made fun of a few residents. They keep getting younger and younger. Cute. Then Edgar discovered Fifa '14 on the iPad and he was gone. Oh well, back to Mr. Darcy.

It was a long day. We both felt a lot of peace which can only be attributed to all of the prayers. These days are supposed to be really stressful, but we didn't experience any of that. Our cardiologist called us from his vacation (!) to check in with us and tell us that he's hoping to present Max's case within the next couple of weeks and we'll discuss it in February. It seems like a long time to wait, but I'm grateful that his surgery will more than likely be past flu season. Thank goodness. This next surgery will be rough, but I can only hope that he will recover quickly and all of this will be behind of us. We've had to sort of regain Max's trust because all he knows was that he was in pain and why would we do that to him. He told me that he didn't like it and that his boo boo that he got in the big hospital hurt him a lot. Sad. I just keep telling him that it's only going to make him bigger and stronger. He's so brave.