Even the longest weeks come to an end. Fittingly, the hardest part of this week came to an end on the first day of spring. After six nights in the hospital, we were discharged Sunday afternoon into a world of slightly greener grass, where the bulbs were just starting to push up their first tentative green points. A paradise on earth where we have access to fresh food that has flavor, hot water that is actually hot, furniture that is coated with breathable fabrics rather than sweaty wipe-down plastics, doors that we can close and know that hordes of strangers won't barge in at all hours of the day and night, rooms whose temperature we can actually control, and so much glorious space for us to roam. Also, Lime did not quite figure out how to crawl while we were in the hospital. Phew.
Last night I managed to successfully run my first home tube feed. I can't say that I love it, although maybe once we start to see some real weight gain from it I will warm to it more. At 7pm, I open cans of Pediasure, crush enzyme beads to release the enzymes, mix the two together, let it sit on the kitchen counter til around quarter to 8, pour it into the special tube feeding bag, slip on my hiking headlamp, creep into Lemon's room, hook up an extension to the "button" on his belly, tape it down, hang the bag on an IV pole, run it through the pump, prime the tubing, connect it to the extension on his belly, start it running, and then slip out of the room only to return at 3:30 a.m. to take down the bag and flush his extension with water before returning to bed. Our eventual goal is to get him up to 3 cans a night, but right now we're starting with 2. We tried 3 in the hospital and let's just say it was too much, resulting in undesired emissions of various forms. I think it was just too much, too soon, and if we build up more slowly, we can get there--hopefully in the next couple of months.
Today I wasted about 2 hours on the phone with various people, trying to figure out where we were going to get the formula that we're using for the tube feedings and who's going to pay for it. You'd think that if the insurance company agreed to cover the surgery, the hospitalization, the G-tubes, the feeding bags, and the feeding pump, the formula would be sort of a no-brainer. That would be in your alternate universe where these things make sense. Through the persistence of a saintly woman at the home pharmacy company, the insurance company begrudgingly agreed to cover it for a month while they review Lemon's file. Of course, since it took until today (yes, 27 full hours after Lemon's discharge) for me to get this in place, the formula won't arrive until later this week so we'll have to make do with the lower calorie "over the counter" version of Pediasure until then.
Thanks again to everyone who reached out over the last week. I know I haven't gotten back to all of you yet, but we heard you loud and clear, and we were so grateful to have you with us during the longest and hardest week our family has weathered so far.
Even the longest weeks come to an end. Fittingly, the hardest part of this week came to an end on the first day of spring. After six nights in the hospital, we were discharged Sunday afternoon into a world of slightly greener grass, where the bulbs were just starting to push up their first tentative green points. A paradise on earth where we have access to fresh food that has flavor, hot water that is actually hot, furniture that is coated with breathable fabrics rather than sweaty wipe-down plastics, doors that we can close and know that hordes of strangers won't barge in at all hours of the day and night, rooms whose temperature we can actually control, and so much glorious space for us to roam. Also, Lime did not quite figure out how to crawl while we were in the hospital. Phew.
Last night I managed to successfully run my first home tube feed. I can't say that I love it, although maybe once we start to see some real weight gain from it I will warm to it more. At 7pm, I open cans of Pediasure, crush enzyme beads to release the enzymes, mix the two together, let it sit on the kitchen counter til around quarter to 8, pour it into the special tube feeding bag, slip on my hiking headlamp, creep into Lemon's room, hook up an extension to the "button" on his belly, tape it down, hang the bag on an IV pole, run it through the pump, prime the tubing, connect it to the extension on his belly, start it running, and then slip out of the room only to return at 3:30 a.m. to take down the bag and flush his extension with water before returning to bed. Our eventual goal is to get him up to 3 cans a night, but right now we're starting with 2. We tried 3 in the hospital and let's just say it was too much, resulting in undesired emissions of various forms. I think it was just too much, too soon, and if we build up more slowly, we can get there--hopefully in the next couple of months. 
Today I wasted about 2 hours on the phone with various people, trying to figure out where we were going to get the formula that we're using for the tube feedings and who's going to pay for it. You'd think that if the insurance company agreed to cover the surgery, the hospitalization, the G-tubes, the feeding bags, and the feeding pump, the formula would be sort of a no-brainer. That would be in your alternate universe where these things make sense. Through the persistence of a saintly woman at the home pharmacy company, the insurance company begrudgingly agreed to cover it for a month while they review Lemon's file. Of course, since it took until today (yes, 27 full hours after Lemon's discharge) for me to get this in place, the formula won't arrive until later this week so we'll have to make do with the lower calorie "over the counter" version of Pediasure until then.
