Pre-Op

Today has been a long day! We had to check in at the hospital at 7:30 this morning. We started in the Children's Heart Center and had an echo first. That took about an hour and a half for them to do the echo and EKG. The echo tech had a hard time getting the images he needed because Caden kept crying. It was really hard to keep Caden calm and hold still during the echo. Of course, this made the whole thing take longer, which only made him cry more. It was very hard. :(

 Watching TV while waiting for our appts to start

 Echo time

When he had the EKG, it was all fine while they put the stickers and wires on and while the test ran. But as soon as they started taking the stickers off, he started screaming and crying. I have to admit those stickers are REALLY sticky and I wouldn't want to pull them off my skin! And, Caden has really sensitive skin so I can only imagine how much it hurt.

Having his EKG

After we finished with the echo and EKG we headed to radiology for a chest x-ray. After waiting for a little while, they called us back and took us into the room. Caden did NOT want to cooperate for the x-ray either. He was super grumpy and kept pouting but at least he didn't cry during it. I had to stay in the room with him and hold him in place and hold his hands still when they did the side view. Thankfully they were able to get what they wanted on the first try and we finished quickly. 

Grumpy boy during chest x-ray

When that was done we had a few minutes before we needed to be back in the Heart Center to meet with cardiology and anesthesiology. Right outside the door to radiology is a large train. It is entirely enclosed in a case, but there are buttons around the outside for kids to push. There are two trains that wind through the track and the whistles blow and it makes lots of fun noises. Caden enjoyed his few minutes of down time before we went to his next appointment. 

Watching the train go by

Back in the Heart Center we met with the cardiology PA and the anesthesiology ARNP. Both of them were very helpful. The ARNP was the same one that helped get Caden ready for his cardiac MRI back in December and she remembered us. The PA was really nice and the two of them did a great job explaining everything to us. And, they did a thorough medical history and exam on Caden to make sure he was healthy and they had all the information they needed prior to surgery.

ARNP and PA examining Caden

Caden's surgery is first case tomorrow, April 9, and we have to arrive at 6:15 am. Anesthesia will take him back at 7:30 and the actual surgery should begin around 8:30. They said the surgery will take longer because of the scar tissue from his first surgery and cardiac arrest. So they said to anticipate it taking around 5 hours with another hour at the beginning and the end for anesthesia. So, it will probably be after 2:00 before we will get to see him again. It's going to be another very long day for us!

We also talked about the method of repair they will likely use. The PA said the plan is to do the baffle procedure, but that could always change once they are in the operating room depending on what they see. However, they said they don't like to mess with the pulmonary veins because of several reasons. So the plan is to create a “tunnel” through the heart to re-route the oxygenated blood coming through the pulmonary veins to the correct side of the heart (right now they are both going to the wrong side of the heart). They said Caden's specific anatomy actually looks like it will lend itself fairly well to this so that is good news.

Also, when I contacted Dr. Spray's office at Children's Hospital of Philadelphia for a second opinion, they told me he said he would do the baffle procedure vs. doing detachment and re-implantation of the pulmonary veins. Since he appears to be the “expert” in the field of scimitar syndrome, we were happy to know that the surgeons at LPCH were planning to take the same course of action. But we will see what the end result is when surgery is over.

The only thing that came up that was a little concerning was the fact that they aren't going to use pericardial tissue to create the baffle. We assumed that was what they would do. However, they said since Dr. Reddy used the pericardial tissue to plicate Caden's diaphragm during his first surgery (at 2 weeks of age), that it was already used and there wasn't any more. So the other two options are to use a thin gortex patch or to use bovine tissue. I asked if using the bovine tissue would be problematic since Caden is allergic to all milk products and beef. So he seems to be allergic to all things “cow.” The PA said she would talk to Dr. Reddy about this but she didn't think it would be a problem because it was dead tissue and would have been treated with formaldehyde. But I would just want to make sure they discussed the possibility of there being a problem with it due to his allergies to beef and milk products. She said whichever product they use to create the baffle should last a long time and there shouldn't need to be a need to go back in and replace it. But of course there are never any absolutes. We've learned that already!

While we talked with the PA and ARNP, one of the child life specialists came down to talk to and play with Caden in the waiting room. I had emailed back and forth with her a few times over the past month in order to prepare Caden for surgery. She brought some medical play toys to play with him. And she brought a stuffed camel to get ready for heart surgery. She said at first Caden was really quiet and hesitant to participate. But after a few minutes he thought it looked like fun, so he joined her. They helped get “Mr. Camel” ready for surgery and going through surgery by using an anesthesia mask, placing leads, putting in IV's, putting in chest tube drains, putting tape and bandages over the sternal incision, etc. They even showed him what a chest tube would drain into in the first day(s) after surgery. I think it was very helpful for Caden to do this with her. Up until this point, any time I mentioned surgery, he would get really sad, start to cry, and say “I don't want to have surgery.” I am really hopeful this helped him a lot to be more emotionally prepared for tomorrow.

Preparing "Mr. Camel" for surgery

Our last appointment for the day was blood draw. :( This was not fun for any of us. Poor Caden! I actually think the tourniquet around his arm was worse than the actual needle stick. But he did not appreciate it and screamed through the whole thing. I held him while the lab tech drew the blood and Greg stayed outside the room. I asked him to take a picture of it and he about passed out just because I asked him to watch. Greg doesn't do well with needles... 

Poor guy!

When the blood draw was over, we were all done with our pre-op day. I am so thankful it was done faster than they said it might be. We were able to leave the hospital and go get some lunch. Caden told us while we were waiting to get his blood drawn that he wanted to have pizza. He's allergic to all milk products so Greg looked up a pizza place that made vegan pizza and we went there. The server asked if he wanted some pizza dough to play with while we waited for our pizza. I told her to bring it and we would see if he would play with it or not. When it arrived, I showed him how he could play with it like play dough and he thought it was great fun! He was being so funny! He started dancing around to the music. It was hilarious! We enjoyed our vegan pizza and then headed outside to take advantage of the gorgeous sunshiney day.

 Playing with pizza dough

 Satisfying his pizza craving!

 We took Caden to a nice park that is close to the hospital and let him play as long as he wanted. He ran around and around the park, climbing everything and going down all the slides. He had so much fun. He and Greg played tag and had a great time. It was the perfect way to spend his last day prior to surgery. Who knows how long it will be before he is able to play like that again. 

Playing hard

As we prepared him for bed tonight, we took extra care and time in every part of our normal routine. We also read lots of books to help prepare him for what is coming. I'm not sure he completely understands what will be happening. But he understands enough to be scared and worried about it. It is heartbreaking.

We take comfort in the arms of our Savior and know that whatever happens tomorrow, we will receive strength from Him. Greg's boss sent us this Bible text and I think it is perfect for our situation. “Be strong and courageous. Do not be afraid or terrified... for the Lord your God goes with you; he will never leave you nor forsake you.” Deut 31:6

We are still “homeless.” The Ronald McDonald House still doesn't have any availability for us. We stayed at one hotel last night and are at a different hotel tonight. One of us might sleep at the hospital tomorrow night. But we still need a more “permanent” place to stay and the hotel expense is costly. We are at the cheapest place we can find for the moment and that is through a discount from the accommodations department at the hospital. But this adds a whole other level of stress to the situation which we didn't have when Caden had surgery as a baby. We would really like to get a room at RMH soon. But we are trying to not stress about it too much.

We will update again when able. Thank you for checking in on us. I may not respond quickly (or at all) to emails or messages, but I will read all of them. Please feel free to leave comments on the blog as well. They mean a lot to us and we appreciate them.