Another week

This past week has been a long, frustrating week, full of tears, anger, and just about every other emotion as we just want Henry to come home. As we sit today, Henry is happy, getting fed, and on track to leave the hospital as early as Thursday.

Henry spent last weekend not eating again. By our count, we've probably spent at least a third of all of his weekends with Henry upset because we won't feed him. The doctors and radiologists felt he did not have pneumatosis, so we were able to resume feeds on Monday. Before the all clear, we had a gastroenterologist come by to discuss his thoughts on what we could do. We had asked for this consult repeatedly, and even asked back in the winter during the first few bloody stools, but none were ever consulted, to our knowledge. We knew the likely plan would start with Elecare formula only, and on a continuous drip. It was obvious, however, that the doctor had spent all of 15 minutes reading up on Henry and coming up with something he did that worked for two kids with very different congenital (non-heart) problems. He suggested feeding Henry slowly at 3 ml/hr working up to a full continuous feeds in 2-3 months. During that time, he would need to remain on IV fluids for most of his nutrition, likely keeping us here that whole time. Meanwhile, he suggested that if we really want to continue on providing breastmilk, Paige would need to eliminate dairy, soy, egg, nuts, seafood and wheat.

That did not go over well. By then, I had had enough. Luckily I was holding Henry at the time, so I couldn't do anything I would really regret. And, luckily our PACT nurse was there and I could tell her exactly what I was thinking. They left and she returned with the nurse practitioner and we had a long talk. It was an exhausting, emotional talk, but in the end we came up with a realistic plan. We resumed Henry's feeds at a continuous rate of 10 ml/hr and went up by 10 ml each day until Henry got to 40. We all felt we would be comfortable saying Henry is "tolerating his feeds" after a week at 40 ml/hr, continuous feeds of Elecare. As long nothing else happens, Henry would then be cleared to come home. Hopefully, at our first follow-up appointment, we can discuss the plan to slowly transition Henry back to bolus feeds, so that he will not need to have the feeding tube hooked up 24 hours a day. 

We did discuss our concerns with Henry being on Elecare only. As parents, we don't want Henry to develop some intolerance or allergy that he never had, as well as making sure he is getting the proper nutrition he needs. We also expressed concerns about Paige staying healthy while eliminating all of that from her diet. Paige spoke with a dietician, who was only informed of the need to eliminate "only" milk, eggs, and soy. She was going to look into the rest, but we never heard back (such as it has been with many things). It is going to be quite a while (probably at least two months) before we would be cleared to begin reintroducing breastmilk, so Paige is not going to change anything for now.

This has been a good weekend. Henry has been much more content and happy, smiling and cooing and playing with us. He passed his carseat test yesterday, so CMH feels he is safe to sit in a carseat for the drive home. Paige and I are getting checked off on as many aspects of his care as we can while we are still in the PICU. The hospital is planning on moving us back to the floor tomorrow. Hopefully the fifth time is the charm. We haven't talked to anyone about specifics though, because no one can make decisions or answer questions on a weekend. Hopefully we will know more soon.

Right now Paige and I are enjoying a good weekend with Henry. The last two drops on this rollercoaster have been very hard on us, so we are trying to temper our excitement, but we are very hopeful this next leap will be the leap home.