One Step Forward, Two Steps Back

As was so often the case while Timmy was in the hospital, every time we celebrated some small victory in his progress, something slipped or some new challenge emerged. Although the hope is that the healing momentum will continue, and for every two steps forward there is no more than one step back, sometimes it seems to be the other way around.

The reflux medication, after promising beginnings, isn't working, and Timmy is spitting up most of what he is taking in. When he spits up, the feeding tube often gets coughed up along with the milk and we have to reinsert it multiple times a day, further triggering his gag reflex and irritating his throat, leading to more reflux. We're currently trying an additional medication, but with little luck so far. The occupational therapist who is working with us to try to transition Timmy off of his feeding tube wants to halt our efforts at oral feeding until the reflux improves, but prolonged dependance on the feeding tube seems to be one of the causes of the reflux in the first place. One step forward, two steps back. Although his doctors are trying to maintain his growth at an ounce a day, it's been over a week since Timmy has gained any weight at all. Dave and I jump every time Timmy coughs, looming over him with cloth diapers positioned to catch his spit-up, at the ready to replace an ejected feeding tube and comfort a distraught little boy. As a result, we're both edgy and strung out, trying to remember to be nice to each other and that this, too, shall pass.

Additionally, Timmy's last cardiology appointment revealed that the band that was surgically placed around his pulmonary artery to reduce back flow through the pulmonary valve, is very tight, and is actually restricting forward blood flow, which creates back flow through the tricusped valve. Again, the same damn thing designed to fix a problem has created another unfixable problem. One step forward, two steps back. When pressed to tell us what this means for Timmy, the cardiologist came up short. It may mean that the next surgery is going to come up more quickly than we had hoped, or it may mean nothing other than the issue will need to be addressed during the next surgery, which we knew all along. It definitely means that we're worrying more and sleeping less.