Okay, so we knew about her heart--- maybe hoping things would be better than they are, but we were prepared for that one. Kind of.
(The surgery...if we get the chance...will be both terrifying and so full of hope...)
Still to come, the ophthalmology consult, the ENT consult, audiology, the genetics consult, the rehab consult, and now the new addition is the GI consult. Her lab work is looking quite positive for Celiac disease...sigh...
Hopefully, her tonsils out safely, to help her breathing.
Hopefully, some ear tubes will help her severe conductive hearing loss.
Almost all of her titers came back negative for immunity so it looks like she might need to be re-vaccinated.
And her tender grips are tearing the skin on her cheeks...does anyone have a good way to keep the O2 on her face and still keep her skin?
I am feeling just a little overwhelmed today.
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I'm so sorry you are overwhelmed. I'll be praying for you. Extra thin Duoderm is wonderful for holding oxygen on. It actually nourishes their skin when you put it on. It's used for healing wounds too. Ask your doctor to prescribe it!!
ReplyDeleteMy advice about specialists is put off everything you can until later. I know some things are urgent, but whatever isn't can be done later.
Keep your chin up. There are a lot of people praying for you.
Praying for your strength as you battle this overwhelming day! I have a friend whose daughter was just diagnosed with CD. I will get you some information if you will share your email address with me. Mattea is just so beautiful - you can get through this!!
ReplyDeleteTheresa
Rockledge, FL
BrevardBuddyWalk@aol.com
Hey Lou- that post above mine is a friend of mine, just FYI if you want to contact her :)
ReplyDeletePraying hard for you. IT CAN BE OVERWHELMING!! Know that the ENT and GI are good ones to start with, but rehab can SURELY wait (guessing you mean therapy?). I never had a genetics consult with any after Brianna, but I'm sure they won't have anything to say that couldn't wait until after her surgery either. One thing at a time... opthalmology can wait too- I'm sure that'll be added on your plate sooner or later.
Emma was home almost 6 months before her heart surgery and didn't get therapy until more than 2 months after that. She didn't get in with the GI doctor until well after that too... but celiac is a good reason to get in with GI sooner.
Call if you want to vent. know we're praying!!
For the O2 we just did socks on the hands and feet and no tape because we couldn't find something to work. There's two ways of wrapping the O2 cord, which I'm sure you know, but just in case, you can do it under the chin then around the ears and to the nose or you can do it from the nose over the ears and around the back of the head (worked better for us).
(((HUGS)))
Meredith
I would imagine that the tender grips are doing a number on her precious skin! Have you tried looping the cannula over her ears and snugging it up at the back of the neck? We gave up stickers as soon as Ralph's ears were substantial enough to hold up to the cannula. At least now, when he rips off the cannula, he doesn't take a bunch of skin off with it!
ReplyDeleteI agree with Lisa above...prioritize! Put off the less urgent things for later. Breathing and heart issues trump everything else. I'm thinking that opthalmology, genetics and audiology could probably wait a bit. There shouldn't be any harm in cutting back on gluten to see how she does.
I'm sure others have ideas on what to focus on and when. Take a deep breath and trust your instincts.
I am a teacher of medically fragile babies and have a daughter diagnosed with celiac disease after many GI visits. It is a biopsy driven diagnosis which means they will do an upper and lower GI exam which does not hurt at all because the child is under anesthesia. The prep is the bad part, no food the day before and pills to ensure total clean out of the digestive tract. The small intestine is biopsied and will look very lacerated if she cannot handle gluten. They will then put her on a gluten free diet for 3 months and redo the testing. If the small intestine is healed, it is indicative of celiac disease. The gluten free diet is tough at first and very expensive, I have found several edible products after much experimentation and usually cook all of Savannah's meals myself, although she manages salads in the school cafeteria. If you get the GI consult and the gluten free diet is indicated, let me know, I will really help you with products and recipes so you don't waste your money as much that is out there is TERRIBLE. There are good gluten free pastas and a wonderful baking mix (Pamela's) that you can buy on amazon.com, free shipping if your order is over $30. I can make this really easy for you, it is the least of your little girl's issues but will make her tummy feel so much better if it indeed is celiac disease. You also need to know untreated celiac disease (a gluten free diet)can lead to permanent damage to the small intestine so it is important you follow up with the diagnosis. I will keep you in my prayers and know your family will get through this, contact me if you have any questions!!
ReplyDeleteI'm feeling for you! One day at a time... breathing and heart issues first.
ReplyDeleteI'm so glad to see smiles and improved O2 sats in recent posts. I don't blame you for feeling overwhelmed but I also know things will iron out in time.
ReplyDeleteJoy
goo thing dad reads these comments once in a while as I just tried the behind the head deal with the O2 line. she was having a blast while I did my post with the line as a whip she could spin around in the air.
ReplyDeleteI can also help with gluten free foods. I can't afford bake mixes and fancier things, so have a system that works by learning forbidden and allowed foods and ingredients and can supply you with those lists.
ReplyDeleteAt first I was overwhelmed and thought I would starve to death, but quickly learned that the expensive part of "gluten-free" is paying for those words on the package and the high-brow stores that stock them specifically cater to a crowd that seems to be willing to pay an insane amount of money for the luxury of not having to study the lists.
I agree with your other gals. Prioritize and take it as it comes. It will all fall into place and you'll handle it. With God's help. ♥