Skyler had another appointment with the cardiologist today, and it didn’t go nearly as well as I had hoped. She said her aorta looks good, but her heart function has just not improved at all since surgery. She said it could be a long time before it gets to “normal” but yet she would liked to have seen even a small percentage of improvement by now. If it still doesn’t improve in the next visit or two, then she wants to try some different medications. These are medications used to treat adults with heart problems and are not yet proven on babies, so the dosing would be experimental. Sounds kind of scary to me. And, since they are medicines used on adults, there is just no evidence saying they would work for a baby.
The doctor even said that if Skyler doesn’t respond to medications, she might eventually be a candidate for a heart transplant. I cannot even fathom that! Especially with how good Skyler has been. She is so happy and learning more and more each day. I asked the doctor what it would mean realistically for Skyler if her heart did not improve. She said we would notice it when she starts crawling and walking, and that it could make it very hard for her to learn to do things. She would have very little stamina, so any “exercise” would wear her out. This would continue in that she wouldn’t be able to run and play with other kids or lead a very active life. My heart just breaks thinking of Sky with a future like that!
I’ve really had a hard time with this today, accepting that Skyler is not all better. I’ve been pleading with God again and begging that He help her heart to heal and do what it’s supposed to. I just want her to be happy and healthy and normal. I can’t stand the thought of her undergoing another surgery, especially a heart transplant. There is just nothing good I can think about that right now. A healthy heart is not easy to get, much less one that she wouldn’t reject. I just pray that she can fight through this and her heart will heal itself!