4/4/23 1:30pm UPDATE

I wanted to write a short update so no one is left hanging and you guys are aware of how Patrick is doing.

He isn't joining any aquire dance classes (yet) but he was up and standing yesterday for a few minutes, and again this morning. His IV ports have been changed, requiring one in his wrist that is sutured to his skin, and the big one in his neck also held in with a suture. They are both uncomfortable.

He developed a clot in the artery in his right wrist where the initial IV was but they are allowing his body to naturally dissolve it.

We did have a bit of activity on Sunday night after my visit. The hole where the balloon pump had been inserted into his femoral artery ruptured, and had he not been awake with a nurse in the room its possible we could have lost him. Thankfully it had nothing to do with his heart and all of that is going well, but that night he needed a blood transfusion.

He is extremely nauseous around the clock, as soon as he invests anything including meds and water. Because of this he hasn't been eating as much as he should. A dietician came in during my morning visit and talked to us about the possibility of having a feeding tube placed if the nursing staff and doctors couldn't find a solution for the persistent nausea.

He also wants a shave. I have never done that, so if I attempt it, there is a good chance he will need another blood transfusion.

Also, we have had so many people inquire about a Go Fund Me that I'm planning on opening one sometime today. I will announce it here. We have a long road ahead of us, as the kids and I will be returning home in about a week to resume school and reopen our shop. The financial help so many of you have offered has and will help tremendously.

Thank you for sticking with us through this trial! ❤️

** Also, KUAC posted a radio story they did of Patrick's journey. Give it a listen! https://fm.kuac.org/

4/1/23 11:03pm UPDATE

This is my first good chance to sit down and compose an update for everyone. The last couple of days have been hectic and exhausting, without much time to sit down and think.

I finally went in to see Patrick yesterday at 1:00pm, which was just six hours after the transplant surgery was completed. I have seen him hooked up to a ventilator before in 2007 when he had his bypass surgery, but this time was worse. I don't know why I convinced myself I wouldn't be affected, but I was. Perhaps it was the lack of sleep, or the severity of the situation, or a mixture of both.

Truthfully, it was also difficult because he was struggling. He was restrained because he was still under anesthesia but obviously attempting to touch the surgery site. He would move his legs and bend them, and they would tell him to straighten them. And he would constantly pull his arms against the restraints. It's that struggle and knowing that even though he was mostly unconscious, he was uncomfortable that broke my heart.

After a while the nurses gave him more pain medicine and he calmed. We spoke a bit about the procedure, but just as the transplant surgeon said of his part in the transplantation, there is a disconnect between the doctors and the nursing staff because their jobs are so different. The doctor performed his task, and the nursing staff's task is to manage the patient post-procedure. They know what happened but don't need to know all the details to expertly perform their own tasks.

Patrick was responding to most commands despite the remaining anesthesia and pain medicine. He would open his eyes when told, move his feet when told, but his hands weren't responding when he gave him a command. After a while when told to squeeze the nurse's hand he did, but it took a NP coming in a LOUDLY addressing Patrick to squeeze, when he finally squeezed his left hand.

The idea was to slowly begin weaning him off of the numerous supports - medicinal, implanted, and the ventilator - bit by bit. But that's not possible if they have a concern about one area or another.

Those supports included the breathing tube which had its own medicine mixed in with the oxygen; the foley catheter; a balloon pump to assist his new heart in pumping which should come out in a couple days, and a temporary pacemaker which has its leads going through his skin. The pacemaker will also be removed when the new heart is ready.

Last night's visit was exciting and not in a good way. The staff had removed the breathing tube which was wonderful, because it meant Patrick's body was improving enough to not need that extreme level of support. But his blood pressure had dropped dramatically low, into the 40s, and they were in the process of taking measures to raise it when I arrived.

While we were there it went up into the 140s, which also wasn't good. The ICU doctor in the room explained that high blood pressure would put undue pressure on the new heart and they needed to even it out.

So he ordered a chest x-ray and in the meantime used an ultrasound machine to attempt to look at the new heart to see if he could see anything that might cause the drop in blood pressure. He said they were looking for two things - blood somewhere it's not supposed to be, and if the heart is functioning about the same as it was prior to the drop in blood pressure.

He didn't see anything immediately that cued him into why Patrick's BP dropped, but the doctor did see fluid in his left chest so they were going to do some studies to see if that was something they needed to investigate.

This all sounds so serious, I know. But I can completely reassure you that Patrick was there in all of his snarky, sarcastic glory.

He said a few things that won't leave the hospital room. I didn't blush for two reasons - 1), that's just Patrick. And 2) it's probably nothing that the staff haven't heard before from men incredibly high on painkillers and in an intense amount of pain.

But he was also his joking self, pre-occupied with the sensation of having to pee and not quite comprehending that that was due to the foley catheter.

He also would respond to, "How are you feeling," with, "My chest hurts." Quintessential Patrick.

Then he asked if he was going to wake up with a vagina.

Before the end of the visit the doctor told him, "You're not the best I've ever scene but you're far from the worst. I think you're right in the middle. So it is very early to say everything's perfect but all in all things are pretty good."

Ahh, such refreshing obscurity.

But seriously, even I can see how the hiccups like blood pressure drops and spikes, the the coldness of his hands and feet, the spikes in temperature, are just hiccups in his road to recovery. I asked if the first nurse I met minded if I took a few photos. He said it might even be a good thing, because it would be easy to see as the days pass how he improves - from things like his color, to how open his eyes are, to his activity level.

I have visited him three times now, and will go again this evening, and there is marked improvement. He is in a tremendous amount of pain, but that is to be expected.

I explained to our 12-year-old today that during open heart surgery they saw through your sternum from the hollow of your throat, all the way down to the base of your breastbone. Then they use a device that cranks open your rib cage and holds it open - FOR HOURS.

Yes, your entire torso would ache with intense pain after a procedure like that.

But as Patrick told me today, it was all worth it.

This morning's visit showed him to be in pain, but speaking clearly and able to open his eyes and look directly at me. He hurt and wasn't sure if the kids should come by. Although he said yes, I know a few minutes of time with them will wipe him out. So we will go tomorrow morning, when I can have a friend of ours help watch the kids while I take them one by one back into the ICU to see Patrick.

Except Samuel. On top of having a cough, we can give him a cookie and his little four year old mind won't realize we had come and gone before we pull up at a park afterwards.

***

A quick update since that second visit of the day has happened.

Patrick looks much better. He is exhausted from the pain and is now suffering from intense nausea. But the puffiness has gone down some, and he is speaking more clearly than he did even this morning.

I wasn't able to speak to anyone who could go into great detail what went on during the day but am excited to see him tomorrow. I don't know what I'll do if I catch Samuel's cold, which as we parents are well aware of, is highly likely. But we will handle that hurdle when it comes.

I have some photos from my visits so far and will post them here.

Love to all of you ❤️

THE TRANSPLANT WAS A SUCCESS!

I'm going to start this by saying sleep deprivation isn't my thing. I can barely think.

Just minutes after my prior update I heard from the surgeon. He said Patrick came through the surgery and was doing well. The surgery was difficult due to his prior open heart surgery, and there is an increased risk of bleeding for the same reason.

But they were going to be moving him to ICU and waking him up to test his brain and heart function, as well as his motor skills to make sure nothing was impaired during the procedure. He said the heart function will be sluggish at first and then will pick up slowly. Patrick also has a balloon pump in his groin that should come out in a day or two.

He still has a breathing tube in but that won't stop me from going to go see him soon. He likely won't be awake. But seeing Patrick in that state is nothing new to me. The simple fact that he survived the surgery is crowding out any qualms I might have over tubes and wires.

So in short, number five - Andrew, as we affectionately call this donor unless we become blessed enough to find out his true name - was the perfect one.

Lucky #5.