She closed her eyes at the flash but I just love those big fat cheeks!
On the drive to the hospital - Elle was hamming it up big time! Look at that smile!
Since Elle had just been released from the hospital on Saturday for her "viral syndrome" we kept her carrier covered all day. We were in the heart patient waiting room so we didn't want anyone to get too close to her. Plus - I had taken her to see her pediatrician on Monday because she broke out in a rash from her neck to knee caps. The rash was just the outward expression of the virus so our pediatrician said Elle was in the recovery stage and was ok to go meet with the surgeon. Thankfully, when Elle woke up on Tuesday morning, the rash was gone. The first part of the day was spent in the echo lab. Elle had to have a sedated echo because the echo she had while we were in the hospital over the weekend didn't give clear enough pictures (Elle was crying during most of it). The nurse we had was really nice and we enjoyed our time with her. She was loving all over Elle. That's pretty easy to do - especially when our little princess is flashing huge smiles, talking non stop and blowing spit bubbles. Lee and I were able to be in the echo room with the tech and the nurse. The tech was very thorough and it always amazes me how they can distinguish what is what on the echo. It is a lot like a ultrasound...sometimes you can definitely see what they are pointing to and at other times it just looks like a blob. After the echo Lee and I grabbed a quick lunch and then went to meet with Elle's surgeon. Dr. M is such a nice guy - he had seen us before we were released this past Saturday so this was really like a follow up visit to nail down the specifics. Ok - I have to write this stuff out so I can understand it too! Elle's BT shunt is doing exactly what it is supposed to do - re-routing oxygen poor blood back into the pulmonary artery to be carried to the lungs where the blood becomes oxygen rich. One of the problems with Elle's heart is that her pulmonary valve is very restricted. But - there is good news - there is enough blood going through the pulmonary valve so that between the BT shunt and the blood moving through the valve - Elle's body is getting a sufficient amount of oxygen rich blood. So - we're not rushing into surgery. After talking with Dr. M - surgery will most likely be at the end of September - first week in October at the latest. Dr. M also went over exactly how he is going to go in and fix Elle's heart. Again, I have to write this out for me - it's one thing to sit there and have the doctor explain, it's quite another to actually sit down and study what he will be doing. He drew us a picture so I have that in front of me! Dr. M will open up Elle's chest and she will be put on a by-pass machine. He will open up the pericardium (the sack around the heart) and cut an incision in the right atrium. It will be through this opening that he will use tissue from the pericardium to repair one of the holes that is in the right atrium. This hole is called a atrioventricular septal defect (ASD). He will also go into the right ventricle and repair the hole that is between the right ventricle and the left ventricle. This hole is called a ventricle septal defect (VSD). To fix her pulmonary valve, Dr. M will make an incision into her pulmonary valve and try to "scrape" away some of the muscle that has caused her valve to become so restricted. He will fix this incision with the tissue from her pericardium. After that, he will remove the BT shunt and then check to be sure everything is working properly. Once he is satisfied that her heart is functioning properly, he will close her up and she will recover in CVICU for a few days. After her recovery in CVICU we will go to the cardiac recovery floor for a few days and then we will be home! Of course, there are tons of risks involved and evidently one of the side effects of the complete repair for kids with Tetralogy of Fallot is that her pulmonary valve will leak. I have no idea what those side effects will be. I have been mentally preparing myself for surgery. It's the recovery that scares me. Dr. M is an amazing surgeon but our faith lies with our most precious and holy Lord. HE holds everything in the palm of his hand and will guide Dr. M and his team. I pray that Elle will stay well so we don't have to postpone surgery. I pray for God's perfect timing in all things and I pray for peace and strength during these next few weeks before and after surgery.
1 comment:
hey!! Our internet has been down so I am just now catching up on all of your posts. If Elle's surgery goes as Olivia's did, she will be in the cvicu for 3 days and in her own room for 3 days, then it is home sweet home. Olivia does have a leaky valve because Dr. Fraser told us that when they are taking away the hardened part around the valve they can't be too agressive because they can't put it back once they take it away. Did you know this repair was the first open heart surgery they did on a baby? That was about 60 years ago so in the time that has passed they have gotten it down pat!! Trust your decision to go to TCH and also know that the timing is right. She is growing and thriving and this will only help her continue to do so. We will keep Elle, You all, and all of her doctors and nurses in our prayers. She will do FABULOUS!! It will be a distant memory before you know it.
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