I know, there is so much to update on, but I think I can only handle talking about one thing at a time today.
We had Hannah’s followup with her ENT. I shared with her about Hannah’s hyperventilation episode as well as how she gets out of breath when being very active. We also talked about how Hannah really can’t cry very well anymore without getting winded. The term I re-learned today is called “stridor.”
Immediately she wanted to do a laryngoscopy. I just remember Hannah’s first time, and it was still horrible the second time around.
Long story short, she diagnosed Hannah with dual vocal cord paralysis, meaning both of her vocal cords are paralyzed in the closed position for the most part. Not completely, as she doesn’t have stridor issues when she is at rest and many times while she is sleeping. Because it is a neuromuscular problem (her Gaucher disease is the cause), the odds of it becoming better any time soon is pretty non existant.
She wants to prepare us for a tracheostomy. She was pretty adamant that Hannah is going to need a trach to protect her airway and her breathing, sooner than later. Not necessarily today but in the near future.
I talked to Dr. B., Hannah’s pediatrician, and he also agreed with the ENT’s assessment (she called him this afternoon to discuss Hannah), as he has been concerned about it to. The only bright part (if there is one) is that this is probably the reason she hasn’t aspirated her foods and has staved off aspiration pneumonia.
I’m not ready to share my feelings on this right now outside of saying that this is just breaking my heart. It is all I can do just to share it with all of you.
No comment, just a big, big hug.
Another hug here and prayers.
You have been given the hardest struggle a human being can endure. You are doing everything for this beautiful baby. She knows it and we know it.
I am so, so sorry. I am glad she is too young to know what this means. What she does know is how much you love her – that is what she lives for and that is what makes her feel secure and happy!!! Still, I hate this for her and your family 🙁
.-= Andrea´s last blog ..Did You Know? =-.
Oh, Carrie. We send our love.
~Jess
.-= Connor’s Mom´s last blog ..Hair and Boyhood =-.
I’m so sorry, Carrie. More prayers coming Hannah’s way, and to you as well.
Carrie, I saw your update on FB and wanted to come over and let you all know that I’ll keep Hannah in my prayers. I’m so sorry…I know this can’t be easy for you.
.-= Helene´s last blog .."Mommy, is a road trip fun?"…."Well, now, that depends on your definition of fun" =-.
Stay strong.
I’m here for you, crying with you and praying over you. Still… it’s not enough.
Love, prayers and big hugs!
My thoughts and prayers are with you. God bless Hannah, God bless all of you.
Lisa
can’t imagine what you are feeling…big hugs…
I had some time and came by to check up on you – Carrie – Words fail me – so I’ll send my best thougths and hugs.
So sorry to hear about this… stay strong! I also believe there is another little one on the July 08 board who has a trach. You may want to post about it? Not sure what his causes is but I have seen pictures! Hugs