Monday morning first case Logan had his open heart surgery to fix his TAPVR scar tissue issue. I updated about his progress on Facebook and I am going to cut and paste everything on here to keep it all on one place. It was quite a week to say the least….
Feb 12th –
The cheif of inpatient cardiology just brought to my attention that Logan’s OHS is going to be on Valentine’s Day. He said there couldn’t be a better day to have it.
Logan’s fever is gone. He is stil fussy but who wouldn’t be? He has an IV in both feet and one in his hand and his other hand has the pulse ox. We were not able to get discharged for the weekend becuase of our insurance comanpany (Jerks). Apparently our insurance company takes a long time to get approval for admittance and Dr. Del Nido thinks it would be easier to just keep him here, since surgery is 1st case Mon. morning.
They just took Logan back. We have the Cheif of Everything in there. The Chief of sugery, the chief of anthesia, the chief of profusion, ect… They gave him a sedative so he wouldn’t be upset when they took him away from us. He went from giggling to staring blankly in about 20 seconds. Scott said that he recogined that look, but for him it was after a couple hours of drinking. They explained that they might need to do…..see more in comments….
Deep Hypothermic Cardiac Arrest. Which is where he is cooled to 6 degrees and taken off bypass completely with no blood circulation at all. Dr. Del Nido may have to do this if there is a lot of blood pooling behind the veins. They said t…hat kids are okay like this for up to 30-60 mn. It is such a scary thought thoug because at that point they are completely dead. They said they have done thousands and Boston does more than anywhere in the world. But it is such a scary thought to me. Overall they say in the scheme of things that this is a fairly low risk surgery. I just feel so less prepared this time and I am much more emotional this morning. Last time he needed surgery he was so sick that we wanted him to get better. It is so much harder when they aren’t looking or acting sick to agree to this. They think it will be 5-6 hours before he is out. It takes much longer to get into his chest this time around because of the scar tissue. The actual repair will only take 20-30 mn. The chief anestesiologist gave me a hug and said he has five children and he can’t imagine what this would be like for us but that he is going to look out for Logan. He said he imagines I have knots in my stomach and I said no they are all in my chest. My heart feels like a rock right now. I will update as soon as I hear anything.
The chief of anethesthiology just came out and said Logan is now on Bypass. He said that everything is going really well, Logan is tolerating everything beautifully. He said that Dr. Del Nido has an excellant view and right now they don’t think he will need the deep hypothermic arrest. He said he knew I was worried and wanted to come out and talk to us personally. He is a very nice man.
LOGAN IS OFF BYPASS!!!! He was only on bypass for about 30 mn. That is so awsome. And they didn’t have to use DH arrest. And they didn’t have to remove his thymus. Yay!!!!! I am so happy. His heart is beating again and his own body is moving blood again.
Dr. Del Nido just came out to speak with us. first I have to say he is THE NICEST MAN IN THE WHOLE WORLD. What a gift he is to us Moms. So kind and genuine, it makes all the difference in the world. Turns out there was no scar tissue at all…see more in comments…
It is very confusing but it turns out that the confluence of veins was attached to the back of the heart by a little vein (he called it a stump) and that ‘stump’ is what narrowed. There was no scar tissue in it at all. He said that he roo…fed the the top of the vein and confluence completely off and stuck all of it to the back of the heart. He said this is how his heart should be anyway. The other thing he did is go back in and relook at the AV valve. He said that there were some straight forward things they could do to make it even better. He said there is NO VALVE LEAK anymore. He is very confident that Logan’s valve is not going to have any issues until the fontan. I am however wondering if fixing this valve is going to take a longer recovery time. I know they have to really cut into the heart when they are fixing valves. He said that after looking at everything is very glad that we went ahead and did this. He said it was the right thing to do. He said after looking at that narrowing, he was very confident it would have shrunk back down in about a month. Dr. Del Nido is the very best Valentine’s Gift our family could ever ask for.
We are up in ICU. They are just working on getting him stable…having a little trouble.
Things have gone bad…they are having to reoperate. See more in comments….
They have been struggling to get him stable and then his blood pressure dropped to 30. Dr. Del Nido came up to take a look and determined that he needs to reoperate immediately. No time to take him to the ER. He is operating right in his room. He doesn’t know exactly what is wrong. He said he just needs to get in there. They asked us to leave and we are now back in the waiting room to see what happened
Dr. Del Nido just came in to talk with us. They got Logan stable. There was a blood clot around his heart. They have removed it and added another drainage tube. They said we could go in and see him in about 30-45 mn.
Its 9:30 pm and Logan has settled out beautifully. He is stable. I have to say though that was the worst thing that has ever happened to me. That is the first time I have felt in my heart that we were really about to lose him. He had an very big blood clot behind his heart and his poor little body just couldn’t compensate with it. more in comments….
We knew it was bad when all of his doctors came sprinting into the room. His cardiology ran like a madman into his room. His surgeon was throwing blankets and binkies out of the crib. I was just horrible. Then they asked us to leave. They said they were going to cut him back open right here and that they needed us to wait in the family waiting room. Scott and I looked at each other and we knew this could be it. Dr. Del Nido at that time didn’t know what he was going to find but said he just needed to get in there quickly. Thankfully it was just a clot that needed to be removed. Dr. Del Nido said it looked like old stuff and that he wasn’t bleeding anymore. As soon as the clot was gone his numbers shot back up. He is now perfect. His blood pressure is back up to 80 and his heart rate is down to 145. For those of you that want more technical details you can keep reading in the next comments…for those of you that don’t need that. He is is doing great tonight and they are confident we are know on the right path.His BP is 79 HR 145-150 His lactates were 1.4, his K was 4.4, blood gasses were 72, blood sugar was 140, respiratory rate was 26, off nitro, no pressors, temp is coming back up slowly to 96.5 right now. No Dope, and milrinone was just started.
Logan did fantastic last night! His numbers are right where they want him to be. They turned off the paralytic. They think he is out of the woods. I will update more after rounds. Thank you thank you thank you everyone for all your support, it means EVERYTHING to us. Hugs.
Pedro Del Nido was just in here and he said that Logan looks great. They are going to get the A line out right away (a line that goes straight into the atrium) and they have started to turn down the vent. I just saw him take a couple breaths on his own! He is starting to move around and even squeezed Daddy’s hand.
So they took the A line (artial line) out and got the 3 chest tubes out. Other than that he has just had a very very quiet day sleeping. They have begun to wean down on the vent, and on the sedatives. He is starting to move his toes, fingers, and lips, but is way to sedated to actually wake up. They are going to ‘wake’ him up more tomorrow morning and try to get him off the vent in later in the morning depending on how he is. He still needs to get some fluid off of him. All his numbers still look great. Heart rate is 120 BP is 80 RR is 25. His color and profusion is excellant. WBC was 10. He is just sailing now.
So today is looking like the day….it is get of the vent day. More in comments…
My heart broke into two when we walked in early this morning and Logan had his eyes open and was doing the silent vent cry. It is just awful. Today is going to be a hard day for sure. For those of you that don’e know, they have to get Lo…gan off as many narcotics as possible so that he can breath on his own when they take the breathing tube out. So inevitably he is going to be very uncomfortable. This is one of the hardest days. They did and ex-ray and he still has some fluid to get off before we can get the tube out so they went back up on some of the pain medication because it is going to be a little longer than we thought. They are thinking this afternoon instead of this morning. I am not holding my breath because I know not everything goes as planned here. All his numbers still look great. He is still sailing now.
Darn it! I guess today isn’t the day. They want him on the vent for one more day. He has too much pulmonary edema to come off this afternoon. They said he would probably be OK, but they don’t want to risk him not. And they said they don’t want to have to give him CPap. So today is going to be a very quiet day of sleeping.
So Logan is now breathing so well that they are going to re-evalute him for extubation tonight. The vent is on the lowest possible setting and he is actually over breathing for what he needs. He is seriously doing fantastic. I hesitate to say this but I am thinking we could maybe be home mid to late next week. Although, I know anything can and will probably happen. Buts right now its all great news
So extubation never happened last night. They determined that his airway is most likely swollen and they wanted him on steroids for 12 hours first. But this morning is it and Dr. Del Nido said he is holding everyone to it.