Having three little babies at home together in time for Thanksgiving is like heaven. :) One of these days I may post about how this was possible. I'm forever 2 weeks behind on here...
Wednesday, November 17, 2010
Since I suck at updating lately, I'll reward your loyalty (read:buy your love) with photos of my beautiful boys. I could seriously kiss these babies til my lips chap. :)
Simon, my little snuggler. Look at those cheeks! 100% squeezable. I've counted no less than 3 dimples on this kid.
Tuesday, November 2, 2010
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.
Monday, November 1, 2010
I don't remember much of what happened when Linus was in surgery. A numbness had taken over. I was happy for it, though, because it beat back the cold chill of terror. We were told that someone from the cath lab would call and give me an update every hour or so. We received one call in almost 4 hours. I wasn't mad, I wanted them focused on him, not us. I finally got a call telling me that the doctor would meet with me in a consultation room to debrief me on the outcome. I'll save you from the "boring details" but basically he said the procedure itself didn't go as planned, but the outcome was good and that was what mattered. They had taken the .5mm hole he had in his aortic valve and stretched it to almost 5mm. He said that 50% of pediatric heart patients need a 2nd procedure before they turn a year old and since Linus required his first one at under 2 days of age, he would definitely be in that 50%. His left ventricle had been pumping against a closed valve and had sustained a decent amount of damage.
Unfortunately after the procedure, his Lactate levels rose to fatal levels and his belly became super distended. He was given two blood transfusions to neutralize the lactic acidosis. They did xrays and u/s on his belly and thankfully found mostly trapped air as opposed to necrotic or twisted guts. They ran a tube into his stomach to relieve the pressure.
Once again, I was shocked by how bad he looked. Add to that the fact that he was paralyzed and heavily sedated. I asked the nurse how long it would take for the meds to wear off. He said it would be a few hours, but that as soon as he twitched, he would hit him with more drugs. He was suffering from reprofusion injury which was quite painful. He said it was like the pins and needles your arm feels when waking up, but it would be his whole body inside and out. I can't think of a more terrible thing for my tiny son to endure.
When Linus would come to he was so sad and in so much pain. He would cry and cry and there would be no sound. His body would rock from the force of his tantrum. He'd be bright red and shaking his fists, but the vent tube made his fits completely silent. It broke my heart. Here he was screaming and no one could hear a thing.
The next week is kind of a blur. I was going back and forth between the two hospitals to spend time with my wife and all 3 sons. I had to make sure both milk banks had breast milk for my boys. I slept a little here and there. I slept in the CVICU waiting room, several rooms at the Ronald McDonald House, Trina's room and the NICU waiting room. I'd wake up and have to look around to try to remember which hospital I was at. I was running on coffee and fear.
It seemed that every day there would be a new complication with Linus and his doctors were in two very different camps regarding what needed to happen next. He was getting daily echocardiograms and they showed VERY slow but steady progress in his left ventricular function. I was warned several times that he was still critical and not to be surprised if he was in open heart surgery by the end of the week.
I had one doctor, lets call him Dr Pessimist say that if they stopped the prostaglandins (PG) and let Linus's PDA close, his left ventricle (LV) would fail under the heavy workload. I also had the cath doctor, who we'll call Dr HappyDance, who said that he thought as soon as the PDA closed and the LV had no more crutch, it would really shine and show us what it had. They stopped the PG and his LV continued to make it's painfully slow progress. He was also able to shed his many medications one at a time over the next few days.
Then came the jaundice. As far as backslides go, this wasn't a bad one. It was just one more thing piled on top of so many other "things". A few days under the lights and he turned right around. When they dropped a feeding tube down his nose and started giving him tiny amounts of breast milk, I almost cried. My poor baby had been on IV nutrition only and finally he was getting the good stuff, even if it was just a bit.
The next bit of bad news was that they saw a "blip" on Linus's echo and thought it was a blood clot in his LV. If this clot broke loose it could cause a major stroke or death. He was started on blood thinners to break it up. The next day I see Dr HappyDance at the bedside and he tells me how great he thinks Linus is doing. Sure, his progress was slow, but it was steady. He's a little guy and he's taking his own time to heal, etc. I said "Yeah, but now with this clot, I'm so worried" He says "There's no clot". Huh? He goes on to say that he doesn't think the blip was a clot, just a blip. Apparently Linus's blip was the topic of a heated "discussion" at bedside earlier and it was decided that they needed to do a TEE to determine what the blip was. The next day he was taken off his breast milk and sedated, again, to preform the more invasive, more accurate test. The blip was a blip. No clot to be found. That's another point for HappyDance.
Preparations were made to extubate Linus. Then Dr Pessimist said there was no way Linus could be extubated because the stress of having to breath on his own and have his LV pump all of his blood unaided would be too much for him to handle. He made it through several support trials where he still had the ventilator tube in, but was breathing on his own for 4 hours at a time. They planned on removing his vent the next day. Unfortunately Linus threw a huge fit and extubated himself in the middle of the night. He was so worked up that he had to be reintubated after only 30 min. Then his next set of bloodwork showed that his hemoglobin was really low meaning that his blood was carrying very little oxygen. Basically his ineffective heart was carrying ineffective blood. No wonder they had to tube him again. The next morning he had his 3rd blood transfusion. I was afraid Dr Pessimist would take this as a sign that he was right and keep him on the vent for even longer. I didn't want this for Linus and he absolutely hated that damn tube. He had to be sedated at least once a day when he got agitated and started pulling on his tube. They even put him in little soft restraints to keep him from tearing at it. Luckily cooler heads prevailed and he was extubated two days later. He was tubed for a total of 16 days. Two days later I was able to hold him for the first time ever. It was pure heaven for me. I cried like a baby.
After a few days, they gave him his first few cc's of breast milk by mouth. His first taste of food came 20 days after he was born. Not long after that he was weaned off his heater and could maintain his own body temperature. Then came the big news. He was healthy enough to moved out of the CVICU and down to the regular "heart patient" floor. We were both excited and nervous. Although we were glad they thought he was well enough to leave, we would miss the comfort of knowing a nurse was staring at him 24/7. On the floor he'd be in his own room with the nurse's station down the hall.
Linus moved downstairs and into his private room equipped with a TV, a PS3 & a full sized shower. He didn't use these things much, but they were nice to have. His personality started coming out a bit now that he wasn't so manipulated, bothered and sedated in vicious cycles. His time with a tube stuck down his throat caused his voice to sound like someone who's abused cheap liquor and cigarettes for far too long. It was raspy, but I loved being able to hear him. I started dreaming of a day when he could come home.
Then the next bombshell hit. They had decided to go back in and balloon his valve again. We were about to have to start all over. To be continued...
Full body restraints.
Tiny soft cuff restraints.
Holding Linus for the first time.
Looking at his mobile in his big boy bed in his big boy room.
So happy to be in his mother's arms and not in the CVICU.