A quick update, because life has really had a nasty habit of getting in the way this week, but an important update really shouldn't be forgotten.
After months of waffling (and not the Belgian kind) we've finally come to the Tube decision point. Despite our most heroic efforts, Aidan just isn't growing well enough on his own. My 15 1/2 month old boy wears 6-9 month clothing. It's time to do something. It's been time for quite some time.
The process begins with a call from the CPED coordinator, Michelle. (CPED = Center for Pediatric Eosinophilic Disorders - CHOP's EGID clinic downtown) Michelle and I discuss our options and I let her know that we're ready to try the tube. She tells me that a case manager will be in touch. We wait. A week later, I call back. No one has been in touch. Please, help us. Please? We wait. Days pass, I'm anxious and impatient, but finally the phone rings.
We have a case manager, and her name is Gina. She and I talk at length about what we're doing and what will happen next. She is going to work with our insurance and let us know how far in the hole we will be going to feed our son. We don't even care anymore. We just want this to happen. We are told to wait for her call. "Tomorrow" she says.
Days pass. No call. Still anxious, still impatient. Once again, finally, the phone rings. It's the Connelly Center downtown. They do tube training, and they want to schedule ours.
So it's scheduled. This Saturday, 4/14. We'll leave this house with a boy, but we'll bring home a Super Tubie. We're nervous, but we're confident that this is the right decision.
After months of waffling (and not the Belgian kind) we've finally come to the Tube decision point. Despite our most heroic efforts, Aidan just isn't growing well enough on his own. My 15 1/2 month old boy wears 6-9 month clothing. It's time to do something. It's been time for quite some time.
The process begins with a call from the CPED coordinator, Michelle. (CPED = Center for Pediatric Eosinophilic Disorders - CHOP's EGID clinic downtown) Michelle and I discuss our options and I let her know that we're ready to try the tube. She tells me that a case manager will be in touch. We wait. A week later, I call back. No one has been in touch. Please, help us. Please? We wait. Days pass, I'm anxious and impatient, but finally the phone rings.
We have a case manager, and her name is Gina. She and I talk at length about what we're doing and what will happen next. She is going to work with our insurance and let us know how far in the hole we will be going to feed our son. We don't even care anymore. We just want this to happen. We are told to wait for her call. "Tomorrow" she says.
Days pass. No call. Still anxious, still impatient. Once again, finally, the phone rings. It's the Connelly Center downtown. They do tube training, and they want to schedule ours.
So it's scheduled. This Saturday, 4/14. We'll leave this house with a boy, but we'll bring home a Super Tubie. We're nervous, but we're confident that this is the right decision.
This graphic comes to me from the Feeding Tube Awareness Foundation. I think it's beautiful.
I hope your insurance covers it all... it seems unjust for it not to be totally covered, but I guess the system isn't quite designed with maximum just-ness in mind.
ReplyDeleteI think it's very important for him to get all the nutrition he'll need to grow properly, for sure. I was looking on the Feeding Tube Awareness website, and gosh.. I mean, I didn't even know about any of this. All the different types of tubes... but it's good that we have this medical technology, and the Internet to bring people together to help each other and not be alone.
As difficult as things are (and oh, I know I have no idea how difficult they are... (but at least I do know that I don't know)), thank goodness it's not something that affects his brain or limbs. He'll still be able to do the normal things kids do, and grow up to have a great life :) And he has two great parents who love him endlessly, and that is probably the most important thing a kid can have :)
Insurance is always a fight. Always always. But I do think they'll come through.
DeleteThe amount of info out there about feeding tubes is astounding. Stay tuned, because the amount of stuff that shows up at your house is even more astounding.
I'm nervous and anxious but honored to be a part of the journey.
ReplyDeleteWe're honored (and so, so lucky) that you want to be a part of it :)
DeleteGood luck Aidan! I will be thinking of all three of you. I know it has taken a long time to come to this decision..Aidan is so lucky to have such caring and devoted parents!! Anxious to hear how it all goes :)
ReplyDeleteIt was definitely a tough call to make, but we think (hope!) it's the right one. Hugs to Henry :)
DeleteSophe sends kisses and hugs...L & I do too, please please please don't hesitate to drop me a line if you need to vent/talk/do whatever. We're thinking about you!
ReplyDeleteThank you so much, Johanna! We send hugs and kisses right on back to Sophie! Aidan's pictures finally came in from school so he'll work on writing her a letter and sending some pictures this week!
DeleteOh gosh. Q and I are definitely thinking of you all.
ReplyDeleteThanks Lisa! Aidan appreciates that his twin cousin is sending good thoughts :)
DeleteKayla and I are thinking of you guys and send lots of hugs and kisses. I hope Aidan grows like a weed and that your insurance covers the majority of this. I know it hasn't been easy for you, but Aidan is so lucky to have a wonderful mother that's kept fighting to get him all the help he needs!
ReplyDeleteThanks Karen! Insurance has gotten on board, thankfully, so that's a huge relief.
DeleteCaroline! My prayers and thoughts! I hope that Aidan will be happy,healthy and tall.
ReplyDeleteHahaha! You have *met* us, right? Tall isn't in the cards. I'll take happy and healthy :)
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