Yesterday was a LONG day we left our house at 8:15am and didn't get home until 9:40pm. We hit the road and Ella didn't say a word, she was just quiet and still for the first hour and a half or so. I kinda think she new where we were going. She then fell asleep, which was a huge blessing since she had such a big day ahead and wouldn't get a nap. She slept until we got to Dallas and woke up in a good/calm mood. We saw a few small icy patches but overall the roads were very clear.
We pulled into the parking garage and she said "no thanks" very quietly and she sounded scared, she knew where we were. We made it a game to find the different letters on the different levels as we searched for a spot to park.
We headed inside and there were people everywhere, it seemed unusually busy to me. Children everywhere, I heard lots of coughing and sneezing, I held my breath as much as I could. We had Ella in her stroller with a clear shield over her face area. We got up to the clinic where Ella charmed others with her smiles, words, games and counting ability. We asked her if she wanted an echo, she said yes! We have been "practicing" at home since last time it was so bad she screamed and just wouldn't hold still. They talked about sedating her, but obviously that wasn't ideal for us, so we practiced a lot. It worked, she was scared but didn't even cry and actually was SO good. They echo lasted over an hour, and she just laid there eating her sucker and watching Danial Tiger's neighborhood and Thomas the Train.
Then she had to get an EKG, it took 4 adults to hold her down as she screamed bloody murder. I HATE holding down my daughter. It is TERRIBLE.
Next we talked with her cardiologist for a while and he decided to send us for labs and x-rays. Both of those were miserable, obviously. But Ella managed to stay polite through the tears. During her blood work she was crying SO hard and she just kept looking at the lady saying "no thanks! no thanks!" The lady thought it was the sweetest thing and told Ella she was going to make her cry since she was being so sweet. She even told every doctor, nurse, tech etc. thank you when each test was completed. I was so proud to be her mommy!
We then met with her cardiologist again and her cath surgeon, and we all agree that she looks good and doesn't appear to be in an emergency at this point, however something isn't quite adding up the way we would like with her oxygen level. We are going to be watching her sats closely for the next week or so and then we will report to them how things are going and from there try to make a plan.
Right now PLEASE be praying for wisdom for us, for her Cardiologist, her cath surgeon, and her heart surgeon! Please pray for her heart to show us what it needs and what it can handle. Please be praying for her lungs to be strong and working well! We were reminded again that despite how great she looks and acts she is a very sick little girl and we NEED your prayers for strength.
She is always in my prayers. The "No, thanks" about did me in, but I have to say it was better than "all done." Bless her heart.ReplyDelete
I can't imagine how hard it is to know what they will put her through and now that she can beg to get out of it! She sounds like some things at least are getting easier and you do a great job preparing her. I will continue to pray for answers and healing.ReplyDelete
I agree with Jeanie. The "no thanks" just about brought tears to my eyes. Such a special, thoughtful little girl. One of these days she will be reading all of the blogs for herself and she will have all kinds of emotions. Some things are heart wrenching and some are so very sweet. She is a special little girl, but Amy, you and Jon play a special part in this. You are raising her to be so kind and loving. This attitude that she has will be such a blessing to her as she deals with these issues as she grows up. Not every child has the advantage of a loving family to help them along in life. Thank you for sharing with all of us. I do not know you personally at all, but follow your blog and I have truly been blessed by you and that sweet, precious, wonderful little angel. She touches so many!!!!!!!!!!!!!!!ReplyDelete
What a sweet, precious, brave little girl. Ella remains on the prayer chain of Divine Savior Catholic church. The ark angels continue to watch over her.ReplyDelete