Yesterday was appointment day for Hope. She started with the regular weight, height, pulse ox check. All looked pretty good there. Her pulse ox was lower than it has been 82 as opposed to 86, but Dr. Prieto said that is because we increased her Captopril...I guess when you increase that it puts more blood in the body and less to the lungs which means that the pulse ox goes down. We will continue watching that number to make sure it doesn't go to the 70s and stay there or we will need to decrease the Captopril. Everything is such a try and see what happens with Hope. After the regular stuff, Hope got her echo. She did really good for about 5 minutes. She was happy and cooing and smiling. That didn't last too long though and she went to her normal crying fit. It didn't help that the tech was doing some training and taking longer than normal. At least she didn't throw up on her this time! After the echo we met with Dr. Prieto which went really well. She said everything was looking just like she expected and she was happy to say that we could have an appointment free holiday. We don't have to go back until the 30th! She also took her off Pepcid, so we will wait and see how well Hope does without the Pepcid. I am hoping she will be fine and not have any reflux. After that was done, the cardiac surgery nurse came in to see Hope. She had a couple stitches that needed to be trimmed and the nurse decided to go ahead and trim them up. Of course, Hope decided she didn't like that at all and threw up all over. I kind of knew we wouldn't get through the whole day without a throwing up session. She always finds something to irritate her enough to throw up.
This is a really bad picture of Dr. Prieto. It is from the Cleveland Clinic website. I will have to take a picture of her with Hope at our next appointment. She is a beautiful woman and a great cardiologist.
This is Dr. Kwon and it looks just like him. I have issues with Nephrology because they are the ones in Akron that basically made the decision that she would not be a good candidate for surgery. Dr. Kwon understands how I feel and has already told me that it would never come to him for that type of decision.
Once we were done there we had to drive to Shaker and see Dr. Kwon (her Nephrologist). The high winds knocked out all the power, so we got to sit in a dark waiting room for a while because we were early for the appointment. The bad part was that without power it was almost impossible to warm up her bottle. I finally talked to the cafeteria and they were able to find me some hot water. Anyway...Hope seemed to really like Dr. Kwon. She smiled and started cooing for him. His nurse was jealous! Her kidneys are the same...small and low functioning, but they are working and that is good. Her blood work was a little better than the last time she had it done which is great. She will have some more blood work done the next time she is in to see Dr. Prieto. She will have an ultrasound done when they bring her in for her next surgery.
We are really excited about the holidays, but have not done too much to get ready for them. We are blessed to have a great family and friends to enjoy the holiday season with. Without our family and friends, this past year would have been impossible to get through. Thank you to everyone that has kept our family in your thoughts and prayers and for everyone that has gone out of their way to make our lives easier...and you know who you are!
I'm glad to hear that Hope is doing so well! Also, I'm glad that you have followed Aly's journey through the second surgery. I will pray that Hope has as good if not better of an experience. It's never EASY, but it's totally different the second time (in a good way). I'll be following along as your family heads down this road also. Has your cardiologist mentioned timing of the second surgery yet?
ReplyDeleteSo glad to hear that continues to do so well. She is getting big and more beautiful with each day. I am so happy for you guys. Her blanket is almost done, I will be sending it to you shortly. Take care and give Hope a big hug from me.
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