Good news – Sean’s homecoming and digestion diagnosis
GOOD NEWS-ONE of TWO
So the labs came back today from the biopsies several days ago and Sean’s digestive issues can be solved with surgery. The diagnosis is Hirschsprung’s (HIRSH-sproongz) disease, which doesn’t sound great and of course its better to have no issues–but this one though rare is common enough that it can be resolved and resolved with minimally invasive surgery and about one week of being in the hospital for surgery and recovery. Right now Sean is at about 2.3 kg and he must be at about 4 kg before the surgery can happen. Docs estimate four to eight weeks of growth before this goal is hit.
GOOD NEWS-TWO of TWO
We’d been advised that Sean could have two more weeks here in NICU in downtown Denver at St. Lukes Presbyterian. Such a bummer for him, us, and everyone. We learned today from Dr. Horst that Sean may be able to come home as soon as Monday if he is up to it (which means he must meet several standards of breathing, eating, pooping, and maintaining his body heat.
This seems likely as he’s gone up from feeding nine ML of food each three hours to literally taking in 37 ml just now. He needs to be 40 to 50 ml per three hours consistently, while at the same time putting out the requisite amount of poop relative to his intake. And he needs to be able to keep his respiratory rate/levels in the green, as well as maintain the correct range of body temperature on his own
THE BACKSTORY
The day after Sean was born his stomach was significantly distended and so the measured the diameter and monitored him. He didn’t poop so things became very important and during the next days Sean was moved to NICU Neo-natal Intensive Care Unit. His stomach continued to increase in size such that he was x-rayed and our superb pediatrician Dr. Milobski was called in. He told us about possibilities, some of which were not good. He also told us that Sean needed to me transported to the NICU at either Aurora or SLP St. Lukes Presbyterian where he could be examined and treated.
We followed his guidance and agreed to go to SLP where Dr. Kay would work with Sean. Dr. Milobski highly recommended Dr. Kay.
