Struggling with blood pressure

Gell well soon Riley!

For the last 24 hours Riley has been struggling with low blood pressure. They gave saline and packed red blood cells and that worked temporarily. They gave albumen which was supposed to boost his blood pressure with more lasting results, but that was also temporary. And because saline and albumen are both fluid, he has gotten swollen and all the extra fluid on board was affecting the pressure in his Glenn circuit and in another part of his circulation (I cannot remember the name), which is bad. Just before heading home last night, he was given a dose of Vasopressin. It worked to keep his blood pressure near normal levels for several hours, but now it’s wearing off and his blood pressure is back down into the high 60s/ low 70s. His blood pressure and how to treat it will be discussed during rounds that will begin in the unit at 9 am.

He started opening his eyes last night a bit and became a little communicative overnight responding to conversation with some nodding when his pressure was up. But because he still has some medicine on board that makes him largely paralyzed, he cannot move much. The nodding is a big step. I suspect he is also quite terrified to try and move anything anyway, even if he could for fear of pain. I remember that from previous surgeries that we could tell when he was really uncomfortable because he would become exceedingly still. 

When I spoke to the cardiologist last night she said, "Even though he's making progress, he is still a long way from being stable." That is becoming more and more clear unfortunately.

Blood pressure drops, gets albumen

Riley has struggled with his blood pressure all day and it continues to be lower than what doctors would like to see. Earlier today he received several boluses of saline to boost volume, which in turn boosts pressure. But with all the extra fluid in his blood and because his drainage tubes continue to have output, he’s also received packed red blood cells so that his blood isn’t too thin. But his pressure is still low, so he just received some albumen, which will hopefully stabilize his blood pressure as it "sticks in the veins" a bit better than saline. Another dose is being cued up right now.

Team Riley's Captain still sedated

A lot of what we see triggers unpleasant memories from previous hospitalizations. His blood pressure was exceedingly low about 24 hours after his Fontan. Soon after, he crashed and ended up on the extra heart-lung bypass machine called ECMO.

Since surgery yesterday, he has been kept paralyzed and sedated so that the does not move and disrupt any of the lines or IVs. However, in an attempt to help him be a little more comfortable, some of the medicine to keep him paralyzed is being weaned so that he can twitch and move just a bit like we do when we are asleep. The first muscles to wake up are usually the lips or the tongue. We haven't seen any movement just yet.

He received a dose of aspirin to try to prevent blood clots. In other news, we haven’t seen the arrhythmia in a few hours. Riley’s temperature is near normal now at 37.5 degrees, although nurses would like it to be closer to 36 degrees. 

Fever, arrhythmia, and other regular post-op stuff

Lots of medicine

First of all, Riley looks pink and we can see freckles on his nose that we’ve never noticed before because of his coloring. That is cool. His toes are pink, his fingernail beds are pink. His torso, arms and legs are a creamy color and not a reddish color. His lips—that are mainly occluded with tape from the ventilator—are pink. It’s crazy awesome.

There are some things we are worried about only because we have such a traumatic history with him post-operatively. He has a fever. It is 38.7 degree C now; it was 39 degrees C when I went home after midnight; the nurse said it should be 35 or 36 degrees. At least it’s moving in the right direction. Fingers crossed. He’s on top of a “cool pad” to help bring it down.

He's pink!

He is having a bit of an abnormal heart rhythm called an arrhythmia. The nurse said it’s been going on since early this morning and they are called PACs (premature atrial contractions). We are leery of them because after his Fontan, Riley had arrhythmias that became life threatening.

His left arm is also somewhat swollen. He has a history with thrombosis or clotting after his fourth or fifth surgery and we’ll be keeping a close eye on it and mentioning it to the doctors when they appear for “rounds” to discuss Riley’s case.

Other stuff: he was on by-pass for 378 minutes and should be completely ventilated until tomorrow at the earliest. They typically keep the kids on the vent for 24-48 hours and Riley should be closer to 48 just because he came into the unit so late at night. 

All in all, given the length and complexity of his surgery, he's doing really well.

The good siblings

Hattie, Riley, Ben & Carter in pre-op waiting room

Riley had quite the entourage this morning before surgery. In addition to mom and dad, he had stepmom, stepdad, Grampy, and his three siblings too! We all got up at 5 am and held off eating in solidarity with Riley. But once surgery was delayed due to a possible transplant coming into the center, the three siblings were able to have breakfast. The two stepsiblings headed off to school once Riley went in, but not before we managed to score a picture of them looking somewhat sensible (a rarity!)...

The sleeping sibling

Riley's brother Carter hung with us all day at the hospital and tolerated boredom and stressed out parents very well. After getting an update that things went well for Riley (and being somewhat confused by all the tears), he promptly fell asleep. He was a total rock star brother. Love that boy! Well done kiddos! We know that this has been hard on all of you too.

"Things went well..."

After what feels like weeks of sitting outside the CVICU, Dr. Hanley appeared in front of us. Riley is still in surgery as doctors are finishing up, but the five heart parts are all done. "Things went well," he said, "Things went really well." Due to all of the scar tissue from previous surgeries, it took a long time for them to get access to his heart cavity. Even so, Hanley said that he went to work around 11:30 this morning, which means he's been working on Riley's heart for more than 10 hours. He will be coming up to the CVICU in about 45 minutes and we'll get to see him about 30 minutes after that. Amen!

No news...

It's almost been 12 hours and I wish we had something to report. Honestly, at this point, no news is not feeling like good news. Quite the contrary. Keep sending positive thoughts our way. We need all the encouragement and positive energy the universe can offer us. Thanks.

"Things are going well"

We just heard that "things are going well," but doctors don't have an estimate for when they'll be done. At this point, he's been in surgery for more than seven hours and since they didn't have an estimate, we're guessing that they are not close to finishing up. It's probably going to be a few more hours. At least I've managed a few naps on the sofa in the waiting area outside the CVICU (cardiovascular intensive care unit) where Riley will end up after his surgery.

A pre-op view

R distracted with SF Giants highlights

Just a picture of Riley sporting his hospital-issue, Mickey Mouse pajamas before going back for surgery this morning. Nothing to report yet, just waiting, and waiting, and then wandering the hospital before waiting some more. Fingers crossed that no news is good news at this point.

Full speed ahead

The transplant that delayed us this morning fell apart and the team moved quickly to get Riley ready for his surgery. Once he said goodbye to his siblings, bonus parents, and Grampy from the registration waiting area, he went into the pre-op suite where he shedded his civilian clothing for Mickey Mouse scrubs, plain blue hospital pants, and grippy yellow socks.

Numbing medication went onto his hands to prepare IV sites. He also received a large dose of Versed to help relieve some of his anxiety and despite it's miserable taste, he managed to keep it down with some distraction. One of the team members overhead that Riley likes the Giants and promptly handed over his iPhone so that he could watch some Giants' highlights. That relaxed him almost instantly...and I'm sure the Versed was already kicking in as well.

From there Ken and I gave him some hugs and the team rolled him out of there to get prepped for surgery. That was around 9:30 am. Dr. Hanley would go into the operating room a few hours later. The whole procedure should last less than nine hours, but we should get periodic updates from the team. We had the opportunity to meet briefly with Dr. Hanley just outside the family waiting room. He went over the complex procedure and talked a bit about chylothorax, which is something Riley has suffered from in the past. The takeaway is that he may get it, but it's unlikley. The biggest risk is that he comes out with a permanent pacemaker.

Surgery delayed

An emergency transplant has delayed Riley's surgery. At this point we are simply waiting to see if it is delayed for a few hours or if it will be rescheduled for another day.