Sucker punch.
Eleven months ago how could we have possibly foreseen the road that God has for us, and for our Celia?
It's funny, because it's SO EASY to let our minds play tricks on us.
It's easy to think the Geneticist is wrong.
That she in fact does have CP not mito and we were right all along.
It's easy to forget in all the smiles and giggles that encompass our baby girl that she is fragile.
That her illness is progressive and terminal.
And then days like today SLAP you in the face with reality. And you can no longer keep your head in the sand where you'd like it...
We had her swallow study today:
Her esophagus doesn't fully close when she is chewing.
Most likely because of her muscle tone issues.
Which can very easily lead to aspiration or choking.
Both of which can be life-threatening.
And may I add that she (and we) are PROUD of that girl for her chewing. A 26 month old who was bottle fed only and had huge oral aversions *can* eat chicken nuggets with the best of them now.
*Or should I say could.
She can no longer have solid food that is not pureed.
Nothing. At. All.
And I'm going to be gut-level honest here:
It stinks.
She worked SO DARN HARD to chew her food, and now, it's all for naught. She is no longer allowed to chew anything except for "enjoyment."
To chew for fun, she can have saltines or cheerios that can melt in her mouth.
And the study also showed that water goes up and over her trachea, so she may be aspirating water too. She wiggled during the test so they weren't sure where it went after it went up and over her trachea, but very likely she could be having "silent aspiration" so we have to thicken her liquids as well with a special gel.
She also recommended a G-tube ASAP. She doesn't think Celia will be able to get her nutrition needs met long term with the "puree her food" solution and thought that giving her a g-tube when she is stable is a better idea than waiting until she is in dire straights. Things could get ugly quickly if she does aspirate.
She heard the wheezing she does when she eats or drinks (The Pulmonologist did not) and thinks she may need oxygen support when she eats. She wanted to wait until we get the results of the sleep study next week before proceeding with that thought as she may need oxygen to sleep at night, so we would use it for both feedings and sleep.
Is all of this a big deal in the scheme of things? No, of course not. We will do whatever we have to for our sweet punkin.
But as tears poured down my cheeks on the way home from the hospital, it just made all this more than a bad dream.
It's real.
It's happening, and the disease that will eventually take her life is progressing before our eyes.
It's funny, because it's SO EASY to let our minds play tricks on us.
It's easy to think the Geneticist is wrong.
That she in fact does have CP not mito and we were right all along.
It's easy to forget in all the smiles and giggles that encompass our baby girl that she is fragile.
That her illness is progressive and terminal.
And then days like today SLAP you in the face with reality. And you can no longer keep your head in the sand where you'd like it...
We had her swallow study today:
Her esophagus doesn't fully close when she is chewing.
Most likely because of her muscle tone issues.
Which can very easily lead to aspiration or choking.
Both of which can be life-threatening.
And may I add that she (and we) are PROUD of that girl for her chewing. A 26 month old who was bottle fed only and had huge oral aversions *can* eat chicken nuggets with the best of them now.
*Or should I say could.
She can no longer have solid food that is not pureed.
Nothing. At. All.
And I'm going to be gut-level honest here:
It stinks.
She worked SO DARN HARD to chew her food, and now, it's all for naught. She is no longer allowed to chew anything except for "enjoyment."
To chew for fun, she can have saltines or cheerios that can melt in her mouth.
And the study also showed that water goes up and over her trachea, so she may be aspirating water too. She wiggled during the test so they weren't sure where it went after it went up and over her trachea, but very likely she could be having "silent aspiration" so we have to thicken her liquids as well with a special gel.
She also recommended a G-tube ASAP. She doesn't think Celia will be able to get her nutrition needs met long term with the "puree her food" solution and thought that giving her a g-tube when she is stable is a better idea than waiting until she is in dire straights. Things could get ugly quickly if she does aspirate.
She heard the wheezing she does when she eats or drinks (The Pulmonologist did not) and thinks she may need oxygen support when she eats. She wanted to wait until we get the results of the sleep study next week before proceeding with that thought as she may need oxygen to sleep at night, so we would use it for both feedings and sleep.
Is all of this a big deal in the scheme of things? No, of course not. We will do whatever we have to for our sweet punkin.
But as tears poured down my cheeks on the way home from the hospital, it just made all this more than a bad dream.
It's real.
It's happening, and the disease that will eventually take her life is progressing before our eyes.
Continual prayers lifted...for all of you.
ReplyDeleteMy heart is sad for you tonight. We MUST get together soon though. Did you know that Abby has a g-tube? We got it when she was 4. One of the hardest decisions we made on her behalf but it was the best. I'm praying for you guys!!!
ReplyDeleteOh sweetie. Will it be a PEG tube? That's what mom had. The benefit? More energy conserved for other things, and no worries about choking/aspiration. Adequate nutrition and hydration are so important, and can help so much with other things.
ReplyDeleteI know the gel, mom used it all the time until she stopped taking anything by mouth - she used it to thicken her tea.
Still? It breaks my heart. I wish I could do something for you. Please make sure you are getting some time to yourself too. I love you and I will come whenever you need me. Praying for all of you.
Praying for you and sweet Celia.
ReplyDeleteSending prayers your way. Don't forget to take care of yourself, too. Hugs and kisses to everyone.
ReplyDeleteOh, Greg and Cristy; How could this be? She can't be declining at such a rapid rate, can she? We are about where you were earlier, thinking the diagnosis is wrong, the tests are inconclusive, or something. We know you have turned her over to The Lord (and in His hands is where she ought to be), but surely He will allow her to be with the parents He chose for her for a long time to come. (I know if I were The Lord I couldn't wait to get that beautiful, big-smiling, heart capturing, precious child into my the arms as soon as I could, but surely He will let her remain with her loving earthly family for a long, long time.) At least that is our prayer. We love you and know that Celia is getting the best possible care in the whole wide world. Her progress already is a miracle, and we will praying for more miracles!
ReplyDeletePraying for you all...
ReplyDeleteThis is so scary! It's hard not to wonder if the medical team is over reacting since Celia has made such progress since coming home. it's hard not to wonder if all of these invasions and changes will actually do more hardm. But, as you said, reality is upon you. I'm sure you are doing your own research. It's so easy to feel in my heart that the experts are wrong. I dream of opening your blog and reading that it's all been a mistake.
ReplyDeleteI'm so sorry to hear this. Eve had her gtube placed at CHOA. Will Celia go there? Sending prayers.
ReplyDeleteSharon- Yes we are seeing Dr Liu this Friday to schedule her surgery.
ReplyDeleteAnd to all.. thank you for your love and support!
Cristy- we saw Dr Lu when Abby was inpatient this summer- he is not our normal GI as he doesn't see CF patients. But we really really liked him. Sending lots of prayers your way.
ReplyDelete