We’re home

Tomorrow we call the GI doc to get some new reflux meds, and probably schedule a thousand tests. (Hello, pH probe.)

We'll also call the people in the Cincinnati and get that ball rolling. Ike will have to have yet another bronch up there. And then probably another trip out there for reconstruction. (Hello, a month in the PICU in Ohio.) However, we don't know if the reconstruction can be done while he's still so little, or if we are now looking at years more with the trach.

Not an excellent day, but at least we have a bit of a plan now. A scary plan. But a plan.

More later. Going to take a nap.

12 thoughts on “We’re home

  1. Ugh. Was hoping for better answers for you guys. Sorry you are still having to trudge through all this. But it does feel like a plan is forming? Or a plan for a plan anyway.
    You mentioned awhile back the the experts were in Cincy- is that associated with Dell? I only ask because we have one very GERD-a-licious baby boy and Children’s Hospital here in San Diego was fantastic in helping us resolve it (he’s 7.5 mos now and basically outgrowing it at this point though) Anyway, Children’s SD wins lots of national awards ‘n stuff.
    Not sure you if have a choice, or maybe Cincy is even better…sounds like maybe the best. Just thought I would mention it.(San Diego is a great place to spend some summer months…and I’d be happy to help out any way I can).
    (again, sorry for the long comments- I just can’t seem to keep them concise!)


  2. Well, at least you have some answers. Not the ones you wanted, but…. I’m glad Ike came through everything so well. He is an amazing little man! On the bright side, just think of the emotional blackmail points you’re accruing for when he breaks curfew/comes home drunk/acts like a teenage boy.


  3. I’m glad you’re home tonight. And at least you have a bit of a plan, which is better than no plan. That’s a start. *hugs*


  4. Yay for being home. I wish it was better news, but I hope the answers are more quick in coming now that there’s a scary plan.


  5. It’s good to be home.
    I know you don’t know us, but our family is thinking of your family and sending good vibes your way.


  6. I am so happy got through this and that you two are home and napping. my MIL knows those docs in Cincinnati and wants to help-she has been on this road with another trach baby (who is now 20 and extremely awesome and healthy) LOVE!


  7. Has any of the doctors considered a cows milk protein allergy? Seriously, what kind of formula is he on? I realize it sounds simplistic. I know there re are issues. However a milk allergy might explain his ongoing congestion and reflux. (I guess I should mention that my daughter’s specialists and doctors had us go through a heart defect test and almost had her tested for cystic fibrosis before they decided to hear my questions about a milk allergy… They have us tackle the endless mountains instead of looking the most obvious hills.)


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