The echo confirms Lyla has an ASD and a VSD. The VSD is very large. Dr. Leonard is concerned that Lyla might have pulmonary vascular disease since she has had such a large hole in her heart for so long. Lyla will have a cardiac cath in four weeks and this will determine if she is a candidate for surgery. I was shocked to hear that she might not be able to have surgery. I had to sit down at that point to make sure I understood what he was saying. I did ask what they would do for her if surgery was not an option. He kindly told me he would treat her with medication. WHAT???? That's it? That's all that might be able to be done??? Whoa!!! I promised this girl we would get her better darn it and this conversation wasn't really heading in that direction so I asked what the next step was. Dr. Leonard said we would schedule a cardiac cath in four weeks. We have to wait because of the bronchitis. Then he can determine the levels of her pulmonary issues. Then we will talk about the next step.
I am reminding myself constantly of all the odds this girl has already demolished. This is Lyla we are talking about. The girl who is determined to LIVE!!! The girl who has proven so many wrong in her short life!! She wasn't expected to survive two years ago. She wasn't expected to survive 15 months ago. Even at our referral appointment 6 weeks ago we were told that they could not guarantee she would survive. Well she sure proved all those predictions wrong.
Lyla has people praying for her all over the world!!
Jesus LOVES her!!!! I LOVE her!!! Her Daddy LOVES her!!! Her siblings LOVE her!!! You LOVE her!!!
I am not going to stress about what the doctor said yesterday. We will wait for the cath results and then we will decide the next best step. We will fight right with her!!! If this group says she is not a candidate for surgery then we will find a group that will find her a candidate for surgery!!! Right now we will just enjoy every moment with this precious girl. Time is a gift, we will not waste it!!
So we need you prayer warriors to stay with us please. Keep fighting for her in prayer.
You all Prayed her home!!
Certainly together we can pray her to good health!!!
Thank You Very Very MUCH!!!!!!
Lyla had a rough night of coughing and high fevers so I brought her to Dr. Przygodzki today and she tested positive for influenza B. This poor girl!!! Dr. P prescribed frequent breathing treatments, fever control and tamiflu!! This poor princess can't seem to catch a break but she is so tough and manages to still play & have fun!!! My Goodness do we LOVE this girl!!!!!
Heres a couple pictures of what has been going on around here since Lyla's arrival!!!
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See Gavin in the back sneakily drinking Lyla's bottle????
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Praying for Lyla's heart! She is a fighter - no doubt! I gave Sarah the names of some moms that have been told the same things about their babes' hearts. They both had surgery and are doing well.
ReplyDeleteSorry to hear about the flu. :-( Poor babe! Praying all the rest of you stay healthy too.
She is so beautiful! I will pray for her heart and healing.
ReplyDeleteAlways thinking of that warrior princess of yours. The story is so breathtaking of how it all wove together that I can't stop thinking of her! Praying for her heart and for more small miracles!
ReplyDeleteQuestion: Does Lyla also have Down syndrome? To ME, she doesn't look like she does. I know heart issues are commonplace with Ds, but I was curious if her own heart issues are independent of any chromosomal differences and if she was given up to the orphanage merely because of her hand?
Hope that's not too nosy?
Bellie is looking so good too!
How long is Tay visiting?
You go, momma bear!
ReplyDeleteLOL at those Strawberry photos. Cuties.
Sneaky Gavin! LOL
ReplyDeleteOh boy praying for Lyla.
Strawberry girls rock!
Once a fighter always a fighter. Will continue to pray for her. Hope the rest of the family does not get ill as well. Perhaps I will add the family in the prayer as well!
ReplyDeleteHi Summer! CONGRATS on getting Lyla home!!! I alwys have so much I want to say/share, but don't have enough time to do so. There's a lot to learn about cardiac surgeries. I recall being in your same shoes once we got Chrissie home from Serbia. Chrissie, too, fought the ECHO, and she, too, required a cardiac cath to determine her pulmonary rates.
ReplyDeleteThe deal with the rates that affects whether or not they're a candidate for surgery is that if the rates are too high (pulmonary hypertension), surgery could kill them instead of heal them. So, while we all want our kiddos to have surgery and be healed, it's not always in the best interest of the child.
With that said, there are cases where children are placed on medication to regular hypertension, and then their hypertension gets down to a "normal" rate and surgery might be considered.
There's a little girl from China who lives in the US who is now on the waiting list for a heart and lung transplant, after originally being told that there was nothing they could do, she wouldn't survive a transplant, etc. God works miracles all the time. He already has in getting Lyla HOME!!!
I can't wait to see God's plan for Lyla unfold. He certainly didn't leave her as orphan, so John 14:18 has already been fulfilled in Lyla's life. Praying the cath will show normal rates of flow so Lyla will be a candidate for surgery and complete healing.
PS Can't believe she has the flu. If she can survive the flu, she's going to do GREAT, I just know!!! Praying for y'all!
Praying for sweet Lyla to feel much better asap, and for the rest of your family to stay healthy.
ReplyDeleteAnd of course, for Lyla to be strong enough for heart surgery. She is such a feisty little girl - once she's over this nasty bug, I think her stamina will come right back and her obvious determination will serve her well during the health "adventures" awaiting her. What a lovely little girl she is (as are all of your daughters, not to mention your handsome sons!)
Best wishes from
Susan in Ky
Cousin to 2 from EE
Continuing to pray for this princess who has touched me so very deeply from afar. If you do not get the answers you want, keep looking. I'm near Children's Hosp of Philadelphia and they have a top notch cardiac unit with Dr's and surgeons (we have first hand experience:) ). I would help in any way I could, feel free to contact me if you need. If you are northern New York...Boston is the other top notch cardiac hospital. God is God. He is greater than any earthly physician. Many prayers going up on your family's behalf!
ReplyDeleteI have been there and done that it was a week after my little man got off the plane. When the doctors told me he was inoperable after doing the echo I thought I was going to collapse right there. They swore the pulmonary hypertension was so severe he would die on the table. We prayed so hard and by some miracle 3 days later when they did the cath they said it was not as severe as the originally though and we rushed into surgery 2 days later. He made it through like a champ. Unfortunately, 24 hours later the severe pulmonary hyptertension that was there prior to the cath returned. Luckily Uthe heart repairs were already done. We spent about 3 weeks in the PICU while he received nitrous oxide treatment. After that he was put on oral viagra ( LOL yup thats really the medication to treat it). Now 11 months later you would never know he had anything wrong. It's scary but you will get through it. If you need to talk please don't hesitate to contact me.
ReplyDelete2 Things.
ReplyDelete1. Prayer
2. Boston Children's Hospital
Keep fighting sweet Lyla!!!!!!
Stephanie Lynch