Saturday, May 18, 2013

Lyla update

We met with her cardiologist after the cath. I just love her cardiologist. He is always so good with Lyla and so honest with us. The cath results show that the Viagara is working. But unfortunately the cath also showed some danger in her lungs. The pressures in the arteries of her lungs have dropped considerably. He really did not understand why unless she was brewing a lung infection. He is not sure the surgeon will be willing to do surgery. So he sent Lyla's records to Boston. He said we are not going to shop around to find someone willing to do surgery. We will just see what Boston has to say since they are the best. He told us that with out surgery Lyla could die in 6 months or she could live 6 years. He said her quality of life will be incredibly poor. He said if this was his daughter knowing what he knows he would wAnt the surgery for his daughter. We really didn't think we wanted a second opinion but after he shared that with us we were on board with seeing what Boston would say.

Also the surgeon here agreed to meet with a panel of physicians here to see what they all think. They will meet next Thursday. So we wait!!!

Lyla's cardiologist thought she should stay the night since her lung pressures were so low.

About midnight her vitals were not so hot. Then at 1am they were not good at all. The rapid response team was called. Lyla was pretty sick. Her fever was 104. They did a chest X-ray and confirmed an infection in her lungs.

Friday she was not herself at all. She slept pretty much all day. Around 3pm she woke up and looked so much better. She was up for about an hour and then went back to sleep until Saturday morning. Now she is absolutely much better. Almost back to her normal little self. Except for her oxygen levels. When we try and take her off the oxygen her sats drop to the 60's. but really otherwise she is great!!!! She did test positive for rhino virus. But they suspect a pneumonia too.

So that's where we are now. Just praying for better breathing!!!!

Thank you so much for all the prayers!!!!

Here are some pictures from the last few days!!!


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  1. Oh Summer, I'm sorry you guys have to go through this especially since she looked so good on Wednesday!! But it sounds like they definately made the right call and its a good thing you were in the hospital when she spiked her high fever! Through it all she still looks amazing with that beautiful smile!! Well except her sleeping picture we were a little nervous. Your nerves must be through the roof!! Thinking about you three often and saying lots of prayers!! God is definately watching over Lyla and she is one amazing little girl! Love ya, thinking of you and praying everyday!!

  2. Summer, if you come to Boston, please feel free to contact me! I work with children with disabilities full time and part time at my church as well!!! Please don't hesitate to contact me, I would love to be of some help to you!!!

  3. She's an absolute little love bug!

    Praying for her to gain her strength and fight off the infection.

    As always we send all our love to all of you. XOXOXO

  4. Oh precious, precious Lyla. You've made it so many of us have fallen in love with her and your other little miracles. I pray that the surgeons will do the surgery and that she will continue to bless us here. My heart aches for you and your family and the roller coaster you have been riding. Hang in there and lets hope that when the ride is over you can look back and say, whew! we made it.

  5. Hey Summer. Wondering how you guys are doing. My daughter went through heart surgery at CHOP 3 years ago. Have been thinking and praying for you all frequently.