For some unGodly reason, besides stress, I was up at 6:00 this morning. The good thing about that is I had a whole hour to myself before anyone else in the house started stirring. I gave Aiden his much detested Pedialyte at 6:30, while he was still asleep, in hopes that he woud drink it. He didn't.
When I got Aiden up, it was 74* outside, so I dressed him in shorts and finished packing for our
At 9:00, Chris loaded my Jeep up for me with Aiden's cooler (he'll only drink cold Pediasure which is impossible to get at the hospital), the overnight bag, the camera bag and my purse. I think he also started the Jeep, but I'm not too sure. He then got in his Jeep; since I was staying at the hospital with Aiden and there was no way I wanted to drive home then back to the hospital.
Aiden and I got to the hospital at 9:30 where we had to check in at the volunteer/security desk. And we had to wait for a volunteer escort to go to admitting (yesterday's office which is 10 feet away) to wait for another volunteer escort to go to the 1st floor for pre-op waiting. I'm pretty sure I know how to navigate the hospital by now, but for whatever reason....... If I managed to get him to the hospital, I'm pretty sure that I'm not going to run away and avoid a cath lab. BTDT more than a dozen times.
In the waiting room, Aiden decided to make everyone in the room laugh. Apparently, his laugh is so cute, that no one can resist the urge to giggle with him. A little after 10:30, we got to go back to the private waiting room where his vitals were checked. Aiden then gets into his butt-less gown. After about 35 minutes, another nurse knocks on the door and announces that within 15 minutes, they will be ready for Aiden in the cath lab. So, Aiden's nurse walks out and returns with the
Dr. Secondary Pediatric Cardiologist comes in and talks to us for a few minutes. He says that they (Dr. Pediatric Cardiologist is going to assist) are going to try to go through the groin area first (known as a femural arterial stick). Why? I'm not real sure as I'm thinking that the scarred veins from ECMO has not resolved itself, nor has it gotten any better.) But he does assure me that Dr. Cardio-throacic Surgeon is fully aware that he may be called for the cut-down. We also discuss the impending valve surgery and he is confident in Dr. Cardio-thoracic Surgeon's skills as he has 30+ years of experience. At 11:30, Dr. Secondary Pediatric Cardiologist's nurse comes into retrieve the wet noodle.
Chris and I went to move my Jeep from the BFE parking space, the only one available at the time we arrived. I managed to get the "Amen" parking spot located on the second level right in front of the "Prairie Dog" tunnel that leads to the basement entrance of the hospital. Which I love this spot because Aiden does not have to be subjected to the weather when we leave. We then went to a Mom & Pop diner for lunch. The echo takes 30 minutes and the cath lab usually about 45 minutes to an hour. So, we were thinking as we were returning, Aiden should be coming out of surgery.
We got back to the hospital and the volunteers in the family waiting room were gone. So, I picked up the phone to see how things were going. Aiden hadn't made it to recovery yet, so we waited. And waited. And waited. Seriously, we waited a really long time.
Dr. Secondary Pediatric Cardiologist's nurse finally calls and apologizes for the lack of updates. The femural arterial stick didn't work. So, they tried to do a superiour vena cava stick, but that didn't work either. A cut-down was necessary. They had to page Dr. Cardio-thoracic Surgeon a few times as he was in OR and wait for him to show up. Then Dr. Cardio-thoracic Surgeon wanted specific tools to do the cut-down. So a trip to the OR was needed. Apparently, they had to make several trips to the OR in order to make the cath lab a suitable OR. So, 2 and a half hours later, they were half way through the procedure.
Finally, Dr. Secondary Pediatric Cardiologist and Student Doctor Whoever come to the waiting room. And we discussed the cath lab. He shows me the pictures of Aiden's heart, from a few angles.The first was the left side of Aiden's heart, showing the mitral valve. And then the right side, showing the tricuspid valve and right ventricle. The little squiggly things are the wires holding Aiden's chest together from his first OHS. The thicker/darker wire is the cath wire. (See, told ya I got really cool pictures!)
And then he handed me the printout of the results. (Click on the picture for better reading)
The pulmonary hypertension has completely resolved itself. YAY!!!! The numbers with the % signs are the O2 saturation levels for each area of his heart. The hand drawing is the new option for fixing the stenosis of the tricuspid valve. Aiden's only option is no longer a Glenn shunt and placed on the transplant list. Now, they think that Aiden is a candidate for having his pulmonary artery blocked off and re-routed, meaning that his little heart won't have to work as hard since the right ventricle is still smaller than it should be, but according to Dr. Secondary Pediatric Cardiologist - it is getting bigger. If Aiden can have his plumbing re-routed, he may not have to have the second valve surgery. But it is still a surgery, just not one we are planning in the near future. Previously, this was not an option since Aiden did have pulmonary hyptertension.
Now for the mitral valve news. Yeah, it leaks A LOT! Dr. Cardio-thoracic Surgeon is already planning the surgery. The mitral valve does indeed have a cleft and his blood flow is regurgitating back into the left atria at a significant amount. Dr. Pediatric Cardiologist is pushing hard for this surgery as she feels the valve is what is keeping Aiden from being a chunk.
During all this, Dr. Pediatric Cardiologist was doing the sedated echo. We don't know the results, but the plan is to hold a surgical conference on Friday and give all the information and numbers to Dr. Cardio-thoracic Surgeon.
We waited about 10 more minutes before we were called back to recovery. The doctor who escorted us back said that Aiden was so not in a happy mood, but he was still a precious thing. Aiden is NEVER in a happy mood when he wakes up from a nap.
Aiden was PISSED!!! He didn't want anyone touching him, he didn't want blow-by oxygen. One of the nurses was trying to get him to drink glucose water with an orthodontic nipple, which Aiden absolutely detests. We switched out the nipples and he was about 2% happier.
The recovery nurse brought over two rocking chairs and we could finally get to hold Aiden.
Chris kept trying to get Aiden to smile and laugh, but he wouldn't. Since he kept down the glucose water, they let me give him some Pediasure. He drank the entire bottle and was more than 10% happy. We had to stay in recovery a little over an hour and a half before they moved us to the oncology floor. Aiden was somewhat happy to get to go for a ride, but he wasn't supposed to sit up, which pissed him off even more. By the time we got to the floor, he was screaming bloody murder.
The nurse said that if Aiden continued to drink and didn't start to bleed through either of the pressure bandages that we would be able to leave around 8:00pm, which was 5 hours after surgery. He drank another bottle of Pediasure, got a huge dose of Tylenol and slept. He was content with sleeping as long as Chris laid next to him.
One of the local churches brought in Build-a-Bear bears for all the kids in the hospital. I will have to remember to send them a "thank you" note.
A little after 8 pm, the nurse brought his walking papers. Along with the cath follow up pages. I was thinking that we could remove the pressure bandages tomorrow, since we always remove the bandages the day after we come home. It just wasn't registering in my brain that we always stay the night, so removal would be 48 hours later.
So, 11 hours and 45 minutes later, we were home. Aiden was more than happy to be home. He was ready to play with his toys, but really couldn't do much since he isn't allowed to move his leg or neck. He has tried a few times to remove the pressure bandage from his neck as it is irritating him beyond belief. He doesn't like it and doesn't think it needs to be there anymore. He also is not liking the fact that he is double diapered due to the pressure bandage on his groin. The little boy is miserable. He has been snuggled up next to Chris since we got home tonight. He'll hug me and pat my back as if to say, "It's okay Mommy, I forgive you."