First of all I would like to thank absolutely everyone who has messaged, text and emailed me over the past 24hrs.
You all have been so wonderful and I really could never thank you enough! Your support is overwhelming!
As you all know, Eve's bronchoscopy did not go well. In fact it couldn't really have gone any worse.
Despite having very high PFT's yesterday and a clear sounding chest, the doctors were shocked with what they saw.
There has been significant damage to Eve's lungs since her surgery in January.
Irreversible damage.
The walls of the lungs were very badly scarred and both lungs were completely full of thick, green, sticky mucus. The doctors said that they had never seen so much before.
Despite the 2 and a half hours of physio and treatments that Eve does EVERYDAY, her lungs are constantly regenerating huge amounts of mucus.
The doctors managed to clean out all the mucus yesterday but they both said that it will build back up in a matter of weeks no matter what we do.
I have asked why this is but the answer I recieved was that Eve has extremely severe CF, and this is just a reminder of how quickly the disease is progressing.
Heartbreaking.
There is nothing I can do.
I just have to sit back and watch her get sicker.
But I REFUSE to accept that!!
I don't give up easily, never have and never will.
And luckily for me I have passed that fighting trait onto my daughter.
I will take Eve to every doctor in this country, in Europe, in the USA and in Canada until SOMEONE has answers for me.
As you know friend, I am fighting mad for you, this is NOT her destiny! Keep fighting your fight momma!!! Love to you and Eve....
ReplyDeleteThis is sad :o( I am so sorry Claire. You are an awesome mother and I know neither of you will ever give up! I will be praying for Eve and I can't stop thinking of her. She doesn't deserve ANY of this. Why our sweet little angels? I wish there was something to make it better. I am so sorry. Hang in there mama. We will all be fighting for each other!
ReplyDeleteHugs and Love to both of you <3
Best of luck to you both, hopefully the new drugs in research will work
ReplyDeleteis your little lamb a candidate for a transplant? i am praying for you... i have 2 daughters w/ cf... one in heaven...
ReplyDeleteKeep the strength and perseverance to know that "severe CF" or not, your connection to Eve, your belief in her ability to kick CF's ass is the most important part of this fight. She will fight. Many warriors in the CF world have been on similar courses and have defied the odds. I don't have to tell you to keep believing, as I know you will. You inspire many, sweet Claire. So does Eve. She is not a statistic in this fight, she is a warrior, and will continue to be. DO NOT FORGET THAT!!
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ReplyDeleteAs far as traveling abroad, I support that fully! It is so important to know that you are doing everything! If you can, go see Dr. Anders Lindblad in Goteborg Sweden. I cannot tell you how incredible that team is.
ReplyDeleteMy heart breaks to read this. Stay strong and help Eve do the same!
ReplyDeleteJust letting you know, I'm thinking of you and sending hugs and mendy vibes! She's a little fighter!!!! xxx
ReplyDeleteTears for you.....keep fighting together we can win the war.
ReplyDeletekeep fighting for your sweet little girl try to keep your head up and think positive thoughts i know its hard my son also has severe cf its a battle everyday my prayers go out to your beautiful daughter and you stay strong and keep the faith
ReplyDeletePraying for both of you!
ReplyDeleteStay strong! She's a good fighter and she WILL get past this. Love ya! XOXO
ReplyDeleteAlways on my mind forever in my heart, you could always come to Australia Honey Love n Kisses Leelee
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