Report from the pre-Fontan cath

Hanging out with daddy before the cath started

We had to be at CHOP at 10 on Friday, which meant Jensen was a very hungry boy. He actually did well with the whole NPO thing so we were relieved that he was easily distracted from wanting food. He was given pre-med which made him giggly and groggy, he was also waving to everyone and being super sweet. Anesthesia took him down about 11. 

He was looking a little bit silly from his pre-med

He was finished with the cath at about 1:00, which was faster than we expected. Jensen slept for a bit when he was wheeled into the recovery room but woke up not long after that. We had warned everyone on his team that he doesn't wake up from anesthesia well and would require extra doses of meds to keep him calm (this isn't our first rodeo).  When I say he doesn't handle it well, I mean he woke up angry, ripping at his IV, bending his legs (a definite no-no after a cath), bowing his back, growling, screaming, needing 3 people to hold him down, coughing, gagging.... It was so heartbreaking to watch. As his mom, I almost couldn't bear to see him in pain and scared. But that moment of weakness quickly passed when I realized that no one was moving on getting him the help he needed. I think everyone was shocked that he was so aggressive they weren't sure what to do. A few nurses and nurse practitioners got their egos bruised because Jeremy and I called them on being indecisive and not taking control of the situation. It was intense and scary and maddening and I almost lost my ever-loving-mind. Finally, Jensen was given a dose of morphine, he fell asleep in my arms and stayed that way for the next 4 hours. 

Just coming back from the cath

During that time we met with his nursing staff and the anesthesiologist to go over the procedures to order medication and why my child's care was not handled properly. We had told many people on his team that he would wake up like he did and they had no plan in place to handle him when it happened. These types of incidents prove that no matter where you are, world's best hospital or not, your child's care has to be at the forefront of your mind at all times. You have to be their advocate because there are many chances for them to fall through the cracks and I'll be damned if that happens to my kid. (Please note: these things happen and while I hate that it happened to Jensen, we still love our CHOP people. Yes we have to get a little aggressive sometimes, but we still trust this hospital with Jensen's life. We chose this hospital for a reason and in our minds, they are the best possible place for Jensen. We <3 our Philly team!)

Discharged!

After that fiasco, Jensen woke up much more calmly. He was hungry and thirsty and ended up drinking too much juice in a short amount of time. He threw up on just about everyone in the room, went through 4 different hospital gowns,  many bedsheets and towels and threw up in the elevator twice. He was so miserable but thankfully a dose of Zofran worked quickly for him. Once he got past the nausea he seemed to be feeling like himself. He ate some crackers and slept some throughout the night. By 8 am Dr. Rome had rounded and we were out of there by 9 am Saturday morning! 

My Philly boy eating crab fries!

Dr. Rychik & Dr. Rome were very happy with how his pressures looked in the cath. He had NO areas of stenosis, no need for any ballons or stents, only one small decompressing vein that they were able to coil off. That brought up his sats and he looks much more pink these days! Things looked so good that Jensen is no longer on Lovenox, only on aspirin (thank you sweet baby Jesus!). We also get to pick when we want to do the Fontan! We were totally shocked that everything went so well and that we get so much flexibility in the timing of the next surgery! 

Airplane selfie

 We could not be more blessed! Jensen is still a little sore but back to his old silly self. He's pink and happy to be home! Thank you all for your prayers and messages, they mean so much to us! We will keep you all updated as we start to plan the Fontan, but for now, we are going to take it easy at home after that whirlwind trip!

 

Best traveler ever.

Report from our pre-op day

Jensen is sleeping peacefully in his own bed tonight! And by his bed, of course I'm referring to the king size bed that he dominates while Jeremy and I are pushed to the edges...either way, Jensen is home =) Yay! 

Our wild man in the hotel

To do a re-cap of our trip, I will start with pre-op. At 8 am we had to be in Neurology for an EEG. Having someone in your face, scrubbing & measuring your head, first thing in the morning is not pleasant. Jensen absolutely had a meltdown until the poor EEG tech was finished placing all of the wires. He turned 50 shades of purple!! Thankfully he did well for the rest of it since he was able to sit on my lap and watch Thomas. 

He is the best kid to travel with. Seriously. He's amazing!

Next we saw Dr. Licht, his neurologist. He was absolutely amazed at how huge Jensen is and how well he was doing! He read his EEG and it came back totally clean, which means so signs of seizure activity. He did a physical exam and observed Jensen while he was being especially cute feeding his bunny, babbling constantly, and running to chase toys. I could not have been more thrilled with how this appointment went! Dr. Licht is so inviting and friendly that he made an otherwise over-stimulated Jensen very calm and comfortable. Love.That.Man. 

Snuggling with Daddy after his EKG

We discussed the possibility of some type of preventative treatment for Jensen's seizures during the next surgery. We decided that a post-op EEG would be the best way to ensure he isn't having seizures and that if he is, we aren't masking it with any prophylactic medication. He also talked to us about risks for another stroke, which for Jensen, are very low since his stroke was not caused by a blood clot. He also went over all of the "milestones" that Jensen has achieved and told us that he sees no problems with Jensen's slower start in speech. He thinks he will be right on track once he gets started talking. We always feel so relieved to talk with Dr. Licht! He is so smart and knows Jensen's noggin like no one else! 

He was such a good boy for his echo. And what happened to my baby? He looks so grown up!

Next we went to the cardiac intake center for pre-op. This includes EKG, chest x-ray, echo, & blood work. Jensen rocked them all! We were expecting a terrible echo but he literally didn't move the entire time! He laid on mommy and watched Elmo and was a perfect little angel...I'm so proud! Even the blood work went well, he of course cried for a minute when the needle was in, but he did awesome! After that he got to play with one of the therapy pups at CHOP. This dog was amazingly well behaved, even when Jensen tried to sit on her! He had so much fun!

 

 We spoke with Dr. Rychik after all of his testing was finished. He was very pleased with his echo and thought that the cath would be pretty straight forward with minimal interventions. He said he looked blue, his sats were lower, but there was no evidence on any stenosis on the echo. He had a feeling there were some collateral vessels (small vessels that form, causing blood to flow in different directions that what his surgical interventions allow for, which usually cause slightly lower oxygen sats). Overall, he was happy with how Jensen looked, but of course we would have to wait until after the cath to further discuss the Fontan....