Linus's Story: Part 3

Tues before last, Trina and I walk into Linus's room. My mom watched the other two boys for us so we could both see Linus together. It's been a while since we weren't split up between boys. Much to our surprise a doctor walked right in behind us. You never see doctors after normal hours so I was a little scared. She goes on to introduce herself and to tell us that she was just about to call us. Dr HappyDance came by to see Linus and was not happy about his condition. He's always breathed a little faster than normal, but that day it seemed worse. They gave him extra Las1x to pull the fluid out of his lungs, but it didn't seem to help. The OT hadn't been able to work with him on his suck swallow reflex because he was breathing so fast. This was not a good sign. We were told he would need a 2nd balloon catheter procedure in the morning and that we needed to be there to talk to the DrHD before hand.

We were shocked. He'd been looking so good. They'd only moved him downstairs 5 days prior. We thought we'd have a few months to get him home and grow him up a bit before his next procedure. Apparently not. We held him and cried until it was time to go home to our other boys. Then we held each other and cried.

Once again my mom watch Simon & Dexter while we went to be with Linus. Dr HD explained that he was unhappy with Linus's progress. His echo showed no improvement in his left ventricle (LV) function and his lungs were taking on more fluid. He went over all of the possible complications that doing another cath may cause. The list was long and almost all of the complications could lead to death. We signed consent and waited for the anesthesiologist to come talk to us about all of the complications Linus could have on his end. Once again, the list was long and filled with death. We signed again with a heavy heart feeling like we had no choice since doing nothing would most certainly lead to death, albeit a slower one.

Our first update call came an hour or so later. They had finally gotten Linus knocked out. He doesn't deal with anesthesia well so it's always a dangerous project for them. At that point he was "mostly stable" with a ventilator and meds so they were going to proceed. The next update we got was that the measurements were taken, they were not going to balloon the valve and the doctor would be right out to talk to us. We were so confused. We were shown to a consultation room and told the doctor would be right in. A while later he showed up. He explained that he went in through both the femoral artery and vein at the same time with two different catheters so he could take real time pressures on either side of the aortic valve. He would have been happy with any gradient under 30 and Linus's was only 12. That told him the reason his left ventricle wasn't working properly was not because it was pushing hard against an obstruction and losing. It just wasn't trying to push. His thinking was that we no longer had a valve problem, we had a heart muscle problem. He recommended Linus be put on blood pressure medications and a diuretic to keep the fluid out of his lungs. Hopefully his left ventricle function would improve, because if it didn't, he'd be on a heart transplant list.

We were in shock. Gone was our ultimate fear of having to reconstruct or replace his aortic valve before he was ten pounds. It had been replaced by the fear of needing a full heart transplant. How could this be happening to us, to our little boy? When we went upstairs to see him he looked terrible. If I didn't have all of the machines to assure me he was alive, I would have wondered.

The next 4 days were a barrage of bad news and complications. He spiked a 102' fever and was started on 3 potent antibiotics. Blood, urine and lung aspirate cultures were taken and luckily came back clean 3 days later. As the fever broke, his blood pressure dropped. They had to stop one of his pressure meds and give him 3 blood transfusions. He had no pulse in his leg for days. An ultrasound showed a huge clot almost fully occluding his femoral artery. Then his right partially lung collapsed. He needed IPV treatments several times a day. Every day there was some new terrible thing he had to overcome. I couldn't understand how he kept going. We spent hours at his bedside. We cried buckets of tears and felt helpless to ease his suffering.

Linus's new room upstairs in the CVICU. So many machines to regulate one tiny boy.

A few hours after his 2nd catheter procedure. Eyes swollen. Completely sedated.

Ventilator tube and CO2 monitor.

Blue NG tube usually used to feed him is now being used to vent his belly so gas doesn't build up.

Teeny blood pressure cuff.

Picc line to deliver meds directly to his heart. Used to have 2 lumens, but one clotted off.

An arterial line to monitor arterial pressure and to draw blood. The blue wire is a temperature monitor that correlates with his heater so he's kept as comfortable as possible.

The red glow at his ring and pinky fingers is a pulse oxymetor that keeps track of his oxygen saturation.

Pressure bandage at his hip so the artery and vein that were catheterized don't bleed.

Blue leg with no pulse due to the large clot in his femoral artery.

IV in his foot giving him one of many blood transfusions.