On our terms.

day 165.

The past week or so has been a roller coaster. Jackson was moved back to the PCU about two and a half weeks ago, and has been doing great. His medication wean had been steady, his feeds weren’t increasing but were manageable, and we were on our course toward home.

Or so we thought.

In the middle of last week, we, along with Jackson’s team, decided that it was not safe for him to head home with his ileostomy like we had planned. He was having some significant ‘dumping’ – basically, his body wasn’t absorbing the food we were giving it and we were stuck at feeds of 16ml an hour. For reference, our ‘goal’ feed is about 28-30ml in the same time frame, so we were off. Way off.

For a long time, we were under the impression that we would be able to head home on the limited feeds and work up on them at home while we waited for the ileostomy to be reconnected. Sure, it would be a lot of work – we’d go home with a PICC line for TPN and would need to manage both the ileostomy and feed advancements – but we were up for the challenge as long as it meant sleeping in our own beds.

This plan came to somewhat of a halt, though, last week. Truthfully, not somewhat of a halt – it came to a screeching halt. A quick stop that threw us for a loop. Because of the dumping, because of the risk of infection in the PICC, and because Jackson has been complicated from the start, the recommendation was made by the team to stop our advancement toward home and come up with a new plan. One that included reconnection first. One that, hopefully, eliminated the dumping and need for the PICC.

One that meant more time in the hospital.

I was heart broken. We went from seeing the light at the end of the tunnel to being told to expect another 4 to 6 weeks in the PCU, and that was after we had a surgery date scheduled and recovered in PICU. We went from going home by the first week of March – this week – to a potential discharge date at the end of April. We added weeks onto our already long stay and it was terrible.

Granted, we want what is best for Jackson and what is safest, but that doesn’t make it sting any less. We had had the chance to reconnect when his g-tube was placed, and held off as the operation was considered ‘elective’. Looking back, at the time it was – we were in a different place with feed advancement and were under the impression that the surgery to reconnect would be too much for his heart at that point. But we started questioning our decision to wait. Did we add this time? Should we have pushed more? Was this my fault?

We didn’t. We couldn’t. And, it wasn’t. But it still wasn’t easy.

Hang on, though. The light at the end of the tunnel came back.

This weekend, we were surprised by a member of the pediatric surgery team who came to tell us that surgery was scheduled for THIS WEDNESDAY. Consents were signed, questions were asked, and happy dances were had. While we’re worried as we always are before surgery, this one feels like a true step in the right direction and, basically, a miracle of scheduling.

So that is where we sit now; waiting, hoping, ready to go. We’re anxious, nervous, excited, all the emotions wrapped in to one. We’re scheduled for Wednesday afternoon and, while we know things can change, here’s to hoping the date sticks and we can keep moving through this tunnel in the right direction.

Surgery does mean one thing – we’ll be moving out of the PCU and back to the PICU to recover. Last time this happened, I wasn’t the biggest fan. Change is tough, especially when it happens for an emergent reason. But this time we’ll head back to PICU on our terms, for a reason that is moving us forward instead of back, with a true end in sight.

Wish us luck as we head into the week!

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