Picking Up Speed

Henry has had a pretty rough Friday, but we hope that the cause has brought us closer to home. Henry had a G-tube put in this morning. The surgery to place it took probably 20 minutes, but it has made for a long day. Henry's feeds stopped at 9pm last night, and they want him to wait 24 hours after the surgery before feeds resume. The hunger, combined with pain from the surgery itself has made him quite cranky - but who wouldn't be!

For us, making the decision to get a G-tube was quite a rollercoaster this past week. It came out of a conversation we had with the team from the recovery floor last weekend. We were surprised and frustrated to learn that the PICU team felt Henry was doing so well (good!) that he was ready to move upstairs (not good!) Based on our experiences back in January, we had a lot of concerns about Henry going up to a unit that was unfamiliar with him, and that we felt couldn't handle making decisions if his condition changed. At the time, Henry was only one day off of oxygen and less than one week off of his milrinone. The PICU might have felt he was stable, but Paige and I were still worried.

Our main frustration that we conveyed to the floor team was that if Henry is stable enough to go upstairs, why not just send us home? And if he wasn't ready to go home, what was keeping him here. We had a long conversation with them on Saturday, during which the question of a G-tube was raised. Paige and I had a deep conversation about this. We had known for a long time that a G-tube was a possibility. Obviously the ideal would be to not need it - for Henry to take his full feeds by mouth, along with all of his meds. Henry was still averaging a little under half of his feeds by bottle, and we had not even started trying to give him his meds orally. The hospital was willing to give him time to learn, but there's no telling how long it might take him. Selfishly, we worried about the stress of going to the floor for a few weeks, only to come back down to the PICU so he could get a G-tube installed. Ultimately, we decided that if feeding was the only thing keeping him here, we would get the G-tube so we could take him home. When the floor team returned on Sunday, they told us the only part of Henry's overall condition keeping him in the hospital was his feeding. The decision was made.

That is when our rollercoaster ride began. The climbs came as we realized we were getting one big step closer to home. Then there were a number of loops caused by issues in communication. First, we were told there would be a study done to make sure there was no constriction through his GI tract, caused by his earlier bouts with NEC. Then the second half of the study was going to be delayed, either because he hadn't passed all of the dye, or because of concerns about his bowels - or because he had gas. As the timing of the study kept changing, so did our surgery date - first, Friday; then, Thursday, and not until after Memorial Day if it was delayed; and finally, Friday. And then came the drop. When Paige called in to check on Henry Thursday morning, the nurse nonchalantly mentioned that he had several bloody diapers overnight. Apparently, she was too busy to call us, and none of the doctors were concerned. This brought Paige back up a day early, and she spent the whole day trying to figure out how many bloody diapers he actually had, if this truly was a concern or not, and whether this would have any impact on his surgery. By the end of the day Thursday, the answers were: unknown, apparently not, and no, the surgery was on for first thing Friday.

So now, Henry has his G-tube in, and we will resume his feeds in the morning. Over the next week - assuming all is well with Henry - we will learn how to feed him, give him his meds through, and care for the G-tube. We will also get any other training the staff feels we still need to care for him, and show that we can take care of him on our own. The hope now - still cautious, but more realistic than merely optimistic at this point - is that we will bring Henry home next weekend. The car is hurtling along now, with the station in sight!