Highs and Lows

So, we came into Tuesday with good news, everything was pretty much the same with medications and trials of breathing on his own, and the only news that we got from morning rounds was that current treatment was going to stay the same and they were going to add a breathing treatment today to loosen up some junk in his lungs.  He weighs almost 8 pounds now, but all of the weight gain is still retention of fluid.

They have been doing pressure support breathing trials for the last couple days, which means that they back the ventilator off for a period of time and allow him to breathe more on his own.  Before, this was to see if we could get him off the ventilator and extubated before surgery, but now, because we are pretty close to surgery, they will not be extubating him and the pressure support trials are simply to give him some practice and exercise in breathing on his own.  He has been able to go anywhere from 20 minutes to one hour on his trials and today they tried to go for two hours.  He did fine during the trial, but after that and after a breathing treatment, he had a hard time recovering and his oxygen levels had been desaturating pretty frequently.  They tried a few things out to stabilize him and to figure out what may be causing it.

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We FINALLY got to meet with the surgeon today.  This is where we didn't quite get the news that we were hoping for.  She said that the team reviewed his case and his echoes and made the decision to do Switch with the Nikaidoh Slide procedure rather than just the Switch itself.  Although last week we got news that his stenosis was minor, the combination of the stenosis, the bicuspid valve, the small size of his Pulmonary Artery, and the location of his VSD, they have opted to do the Switch with the Nikaidoh Slide. Although we were hoping for the "one and done" Switch procedure, we trust in their decision that this is the best procedure for him to have. It just breaks our hearts that this will not be his only open heart surgery in his lifetime.  He will need follow up surgeries at least two more times as he grows to full size to replace the conduit that is put in during the Nikaidoh procedure.

Surgery is scheduled for Thursday, March 24th (his original due date) at either 8am or 10am and will be performed by Dr. Vaughn Starnes and Dr. Cynthia Herrington. This is it the first time Dr. Starnes has operated on a Sbicca! He also performed Jamie's Grandfather's heart surgery years ago. Please keep Joey in your thoughts and we will update you on his recovery as soon as we can.

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Later on in the day, his oxygen levels were still very low and everything that they were trying was not fixing it.  The attending doctor decided to order another echocardiogram and chest x-ray. The x-ray was to check on his lungs to see if the tube had moved or if his partial collapse had gotten worse. The echo was to look at the ductus arteriosus and the small holes between his atriums. He has been taking medicine to keep the ductus open (normally this closes soon after birth) and the holes in his atrium septal wall (ASDs) sometimes begin to close on their own as well.  The echo showed that his ductus was beginning to close and this was probably the reason for the desaturated oxygen levels all day, because they even tried to double the dose of medicine they were using to keep the ductus open (prostaglandin) and that didn't work.  They decided pretty immediately that it was time to do the balloon septostomy procedure. They had held off until then because he was doing alright without it, but with the ductus closing and the VSD not mixing enough blood, it was time.  Within 30 minutes he was sedated and they began the procedure. The septostomy is a catheterization procedure in which they go into an artery in his groin, lead a catheter up and inside the heart and through one of the holes in the atrium, inflate a balloon and pull it back through to tear the hole open more and to keep it open.  This allows for more oxygenated blood to go through the heart to the body. They will fix the hole when in surgery.  The doctors said that the procedure went really well. His heart rate has gone down and his oxygen saturation levels have greatly improved!

The last thing that they will do tonight will be a blood transfusion. He did have some bleeding at the catheter site in his groin after the septostomy, but the transfusion is mostly just to get his red blood cell count up. Red blood cells carry oxygen through the body, so they want to maximize that as much as possible before the surgery on Thursday.

Jamie and I are doing fine.  It does make it harder that they have the no visitor rule still in play.  We would love for our families to get to meet him, but hopefully it will be lifted soon, or hopefully they will make an exception to get grandma and grandpas up here before surgery.  It is nice having an apartment close by this week. We stocked up on food so that we can just bring our breakfasts and lunches to the hospital. And whatever sleep we don't get at night we try to make up for with frequent naps at the hospital. Either the little window bench is comfier than it looks or we are just tired enough to be able to sleep on it every day! My milk has finally started to come in and boy does that 2-3 hours in between pumping sessions go really fast! Joey still won't be able to get any of my milk until sometime after surgery, but at least we will have it ready for him when the time comes!  Although today was hard (not to mention these postpartum hormones have started to kick in), we are hoping to get to hold Joey again tomorrow, so that we can get a little more cuddle time before surgery. We were planning on doing it today also, but things didn't end up going that way.  We continue to hope that the transfusion goes well and that he continues to be stable so that tomorrow goes as planned.

I don't think I will have any updates for the blog before his surgery, so please keep Joey in your thoughts the next couple days. I will hopefully be able to jump on here on Thursday during recovery time to give you a quick update on the surgery.  And you can expect a longer post about the surgery on the weekend!