A bit worried & Ears...

So I'm getting a bit worried again...

Noah's IV antibiotics to treat the e. coli ended on Friday.


Since then he has not looked great. His chest is cruddy, his nose is a constant fountain, he's been sucking back the ventolin...likely just a virus he's picked up, but with Noah...it is always worriesome. At least no fevers, and we can keep him well hydrated with his line, but those lungs worry me.


Started doing some packing this weekend of Noah's supplies...yes, we still have a month to go, but just preparing ahead, in case a hospital stay is in the near future. I have learned from our last trip, and I am hoping to be more organized this time. I made up bags for each TPN hookup/unhooking so that we will just be able to grab a bag when we need it and it will have all the supplies in one place. Hopefully this will save me the grief of searching through bags, looking for supplies each day. Of course, I can't pack the actual TPN or meds yet, and I still need to figure out all the other supplies that we will need. But it's a start, and I no longer feel quite so overwhelmed with the thought of packing for Noah.


I managed to get a shift in at work this weekend. It really is a nice break to go back...my own sort of respite I guess. And the extra money will come in handy for Disney as well!


Today was Noah's hearing tests and ENT...the hearing tests were a bit of an adventure since he was being his busy little self, so it was difficult to figure out what he was hearing and what he was not. He was definately hearing some from his left ear, which we already knew, but his right ear was questionable as to whether he hears anything from it. After much discussion with the ENT regarding ear tubes, we decided the best course of action right now was to do nothing. He would benefit from the tubes to drain the fluid and hopefully increase his hearing, but since we are not having ear infection/pain issues and he does hear some, it is just not worth the risk of another general anesthesia. So the new plan is to retest his hearing in 4 months and decide from there. If the tests aren't good, we will look into a hearing aid, rather than tubes, since his hearing loss may be more than what tubes could fix anyways.


With everything that has gone on in the past few weeks, after only being able to think in increments of hours in regards to Noah's life, it is difficult to think long term. When we lose this line, if we have no other answers and are forced to look at palliative care, then what is the point of worrying over hearing, speech etc. And yet, we just don't know what will happen, so we have no choice but to continue forging ahead with the more minor issues. So I am quite happy with the new plan in place and the non surgical options.