We are going home without a plan
I don't even know what punctuation to use with that sentence because there are so many emotions that go with it.
We are going home, which is so exciting and much needed!
But realistically we have no plan, which is terrifying.
Our doctors here at the U of M Masonic have been wonderful. But Easton is still a troubling case. Our plan is to go home as we are now, which is keeping him stable. Easton is 100% reliant on his TPN and cannot be off it for safety reasons. He is also on 5mL of his J tube feedings. Which is about 4oz a day. They would like him to be up around the 15mL mark soon to protect his liver and GI tract from the TPN. However, we don't have a plan to get there. This being said, we will follow up very frequently with our GI doctor on the phone. We just have to change course as we go. We don't know what will work or what won't. We may have to add back in some of the medications we took away. We may have to try new ones. It is all trial and error since Easton does not, and may not ever, have a diagnoses. And that unknown is a tough pill to swallow.
There are a lot of unknowns. It is all unknown really. What were those seizure like things? Don't know. Why does he get tachycardia? They don't know. Why does he get hypoglycemic? Good question. There are a lot of HUGE question marks that probably won't get answered, but we do know some things and are planning accordingly.
I was told that we will be back in the hospital at some point. A few days, a few weeks, a few months down the road, we will be hospitalized again. We can no longer stop Easton's feeds at home safely. Meaning if he gets sick at all, and ear infection, strep, anything, we will be in the hospital. But we can be prepared for those things.
I had a resident describe Easton's intolerances as an ebb and flow. Sometimes we catch an flow and things go well. He tolerates feeds and stays stable. Sometimes he has an ebb and things go badly. It is unpredictable. It is unplannable.
So, currently, we are home without a plan.
Before we were discharged, Easton had his 2nd iron infusion. His hemoglobin and iron stores are very low. His hemoglobin is 7.6 (11-14 is normal for his age) and his ferratin is 10 (ideal is 40-60). We will have to wait awhile to see if those infusions have helped. As long as his hemoglobin doesn't drop, we reevaluate in a month.
Thank you for all the videos!! Easton loves them and they have brought us so many giggles!
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