While this is fresh on my mind I thought I would get this out here. The girls (yes, both of them) had appointments yesterday in Little Rock at Arkansas Children's. Not only did they have appointments, but I also had to run by medical records to get a report from last December for Blair as well as return her car bed to Occupational Therapy at the hospital.
We went down to spend a few days with Britt's family before their appointments. I wish I did some better planning though since his Mom was gone most of the time. But, with all the upcoming appointments and surgeries I felt it was better to go before-hand.
Anyway... so, both girls had an appointment with the same Cardiologist. I will just be honest and upfront here and tell you that I don't care for her. Not that she's not nice or anything, but these people are just NOT thorough with following up. And, that's one thing that is very important to me. I don't care if you have to make me believe during the entire appointment that you CARE and WANT to see my child. DO IT! Maybe if you can't keep up with everything you should hire an assistant to follow you around to help you follow-up with the patients and their families!
Now that I've got that off my chest I will tell you about their appointments....
Blair had an Echo that showed us the size of the hole (VSD) in her heart. They said it's very very tiny and should close on it's own. Her heart is rotated... and not that it's really rotated because it's sitting the correct way in her chest, but it's on the right side (literally) of her body. Other than that everything looks great and looks like her heart is working properly.
They did an Echo on Baylee as well. I was SO proud of her as she went with the lady ALL BY HERSELF to get it done since I was with Sissy! As we said before she will wear oxygen at night. Little Rock ordered 2 liters, but I called the Hypertension Specialist just to make sure I heard right and she said 2 liters is okay, but sometimes that is uncomfortable for the child. She said 1 liter would suffice and that's what they would write the script for. They were not able to measure the pressure by a leaking Tricuspid valve because it wasn't leaking yesterday. She will have to have another Heart Cath by November and I'm thinking that it will take place in Boston. After all, they are the one's wanting the report anyway in case they have to change the medicine or anything. Britt and I are still discussing what we are going to do with that. Yes, it would be more convenient doing it in Little Rock because Britt's parents live right there, BUT is it the BEST place to have it done? I'm positive I can answer no to that. Today, the lady from the Home Medical Supply place came by to switch out the equipment. We still had all the oxygen stuff from when Blair came home on it last year. She replaced a couple bottles of empty oxygen and reminded me on how to use everything.
Tonight we started Baylee on her oxygen. Of course she did NOT want to wear it, but she quickly fell asleep. I started her off on 1/8 of a liter of oxygen and after she fell asleep I turned it up to 1 liter. She just didn't like the blowing in her nose feeling. Which I don't blame her. It's kind of like a dog when you blow in their nose... they don't like it.
Sunday we leave for St. Louis for Blair's appointments. She has one with a Pulmonologist and has to be cleared by Anesthesia for surgery. I promised Baylee I would take her to the Magic House and she is SO excited about it! After all, dragging her through a hospital all the time and her doing so well with it requires some reward! :)
Hugs - Tiff