Cardiology Appointment

We went to PCMC this week for Alyson's cardiology appointment. I think it was the shortest appointment we have ever had! As soon as we got there, they handed me the usual paperwork to fill out about her medications, any new symptoms, etc. and told us to go wait in the playroom and they would come get us in a few minutes. I was like "Wait...what?! We don't need to go down for an x-ray?" The girl looked over the order notes and said there was no x-ray ordered for this visit. I thought for sure this was a mistake, especially where we hadn't been down there in 6 months and we have ALWAYS had x-rays done at each appointment.

They called us back pretty quickly to get our appointment started and they were taking Alyson's measurements. Alyson is just shy of 38 inches tall and her weight was 31 pounds. I made sure to tell them that she is not really 31 pounds, she is wearing clothes and ate breakfast. I had Alyson stand on our kitchen scale a few days before the appointment and she is really 29.5 pounds which is still close to the 30 pound goal. They monitored her oxygen levels for a bit and her saturation stayed around 81% so she is still holding her oxygen levels pretty good.

Her cardiologist came in after the assistant was all done with her stuff and Alyson said "Hi doctor! Hi Dr. Puchalski!" Of course she butchered his name but he could tell what she was saying and he laughed and smiled and said she butchered his name just like his kids do. It was pretty funny. He listened to her heart and checked her out and is very pleased with how she is still doing. He is comfortable waiting another 5 months before we have to go back! I anticipated this before we went in but it was still so good to hear. I am not sure I am mentally ready for her to have surgery yet. I asked him a few questions about complications that could arise after the Fontan surgery. One was PLE (I kind of understand what this is but don't want to look it up to get a description so it freaks me out more) and the other was chylothorax. Chylothorax is basically a pleural effusion around the lungs and sometimes when someone gets it, they go on a no-fat diet. I asked the cardiologist if I needed to put her on a no-fat diet before the surgery and he said that it wasn't necessary. I mentioned that I see this kind of stuff on the IHH Facebook page and I had to drop out of it because it stressed me out to read of all the negative stuff that could happen. Reading all that stuff makes me feel like some of that stuff will happen, even though it most likely wont. He said I shouldn't look at it that way because she is doing good and if something does happen, they will address it when it happens. So my new goal is to have a positive outlook and not stress too much about "what could happen". Her Enalapril medication was increased to 2.8ml 2xday from 2.0ml 2x a day. That was a big increase I thought but she seems to be doing okay with it. The cardiologist was deciding whether or not to take her off Amiodarone (which is the medication for arrhythmias) but he said that he wanted to keep her on it until after the surgery so we didn't rock the boat.

So, we go back in August for a sedated echo. Her cardiologist would like her to gain a couple more pounds so there is a little buffer there. At that time, he will see if we will proceed with surgery. He said he would like to do surgery when they "can" do it and not when they "have" to do it. He also said he would like to do it before we get into respiratory illness season so that made me feel good about everything too....that he is weighing every option and doing what is best for Alyson. I really love him, I think he is so great! He helps keep me grounded with my worries that I have.

My cute friend Tammy who is also a heart mom came up to visit us while we were there because we don't get to see each other very often. She brought Alyson a darling mylar balloon and some treats. She is so thoughtful of everyone! She wanted to visit a couple heart moms that were there with their babies and drop them off a little treat too. So Frank and Alyson along with Tammy's little boys went to the playroom while we went to make a couple quick stops. Next door to one of the rooms we stopped at was a little girl and her family. They were leaving the room just as Tammy and I were leaving and I asked if their daughter just had surgery. Seeing her on oxygen and being carried around made my heart feel a little sad. They said that she just had the Fontan 6 days ago. They took her to the playroom for a bit which is where we had to go so I got to watch her play for a bit. I was in awe with how good she was doing! Seeing her made me feel good and positive for Alyson's surgery. Not that I am excited for it, but it made me feel positive actually seeing a child in person after having the surgery instead of reading about it and reading and focusing on the negatives.

After we left the hospital, we went out to lunch with Tammy and her kids to Red Iguana. I love that place! Best Mexican food ever! After a quick lunch, we had to say a quick goodbye because we had to get back to town as soon as possible so I could register Olivia for school. I can't believe she will be going to school....holy cow! I told her how sad I was about her going to school and that I would miss her too much so she better not go to school. Her response was "It's okay mom, I don't think the teacher will keep me all day!" LOL! I sure do love her!