breathe deep!

Sometimes that’s what you have to do. Deep breathes. We had a few horrible days in there last week, thankfully they have ended! Thursday brought good things – our friends at Loudoun Hospital were able to not only place a PICC line in Isaac for IV antibiotics, but they also forced that just slightly too big GJ feeding tube into his belly – no more nose tube! As he woke up from anesthesia I asked him what was missing, he stretched his face and groped around – and sleepily said “no more tube”. “No more tube” became his mantra for the rest of the day – he was a pretty happy boy.
We fly to Minnesota on Tuesday, and Dr. Hess will take a look at Isaac’s esophagus on Wednesday – we’re not sure what the plan is, or if there is a plan. We’re not even sure any treatment will take place on Wednesday, what we know is we’ll be where we need to be. We are in the process of packing for an undetermined amount of time, and setting up care here for our sweet Eli while mama and Isaac are on our trip. Frantic is the name of the game right now.
In the middle of all of this we got the MRI results from Isaac’s last trip to Minnesota, they show the possibility of a tethered spinal cord – add one more thing to the “to do list”! If he does in fact have a tethered cord, and we don’t address it, Isaac could suffer some issues walking and controlling his bowels – so we have to get him taken care of sooner than later. When properly addressed Isaac should suffer no ill effects.
So, the increasing stress becomes – when do we fix this? Where does it fall on the list of priorities – between the leaky esophagus, fused ribs and possibly tethered spinal cord, where do we start??
After a few deep breathes we realize we can only do one thing at a time. We still have a pretty happy, crazy little boy. He is enjoying every day to the fullest – and in time we will take care of everything that needs taking care of. For some of it he will be angry, or hurt – but in the end he will be happy.

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