this sucks :(

That’s really the easiest way to say what we’re up against again – it sucks. Over the weekend Isaac had a pretty bad throwing up episode, and for the remainder of Saturday his trach secretions were dark green (the color of his food) and frequent. We were hoping he had aspirated some food into his lungs when he threw up (sad, but true!). By Sunday morning a temperature and nonstop, watery secretions had us in the ER.
Isaac broke my heart when we pulled up and he realized where we were and said “no hospital mama, go home”…. we were lucky that everyone knows him and they really do coordinate well and quickly. They took some cultures from his trach, and started IV antibiotics – his lungs looked clear so we were suspecting a trach infection.
By Monday morning he was a bit better, but mama had a nagging feeling that formula was coming out of his trach. I just couldn’t prove it. I spent most of Monday convincing myself I was crazy. On Tuesday we got word that an oral antibiotic would work on his infection and we could go home, but there was still the nagging feeling that something was wrong with his esophagus. I took matters into my own hands and dyed his food purple – within minutes of feeding him his trach secretions turned purple 🙁
We pretty much knew then that his esophagus was leaking again, but needed real proof. Today Isaac had an esophagram (dye injected into his esophagus that shows up on xray). Holding him down on that table while he fought with all of his might was awful – then seeing the leak show up on the xray screen made my stomach turn. It was obvious that he has another leak, and again it is connected to his airway.
We put in a call to our favorite Minnesota surgeon – who repeatedly said “oh no”. He decided he needs to try something new, and he wants us out there next week.
Our next problem became how to feed Isaac – his G tube won’t cut it when he refluxes and sends food into his airway. The other option is a tube that also goes into his belly, but extends towards his intestines, unfortunately there were none in the right size in the state of Virginia today! Our last resort was an ND tube – it goes through his nose and into his duodenum, bypassing the stomach. Once again, we had to hold Isaac down and get that in place – I’m not sure when he’ll forgive me.
While all of this was going on word came from our local hospital that Isaac would benefit from a round of IV antibiotics – and they placed him on the schedule to get a PICC line tomorrow morning. We are hoping that the radiologist will try to place a feeding tube we have here that is a size bigger than the one he has so we can lose the nose tube!
Tomorrow we will find out when we need to fly to Minnesota and how long we will be there. We are again disappointed and said for Isaac has to go through and will go through. However, we are reminded that we are loved and surrounded by an amazing group of people who will stop at nothing to help our baby.

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One thought on “this sucks :(

  1. This news does suck. I’m sorry. Really sorry. I know you’ll get his esophagus all spanky perfect soon, though. I love you.

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