Child life brought in a sensory cart for Aimee to use today. It is so soothing that it has put her to sleep for the most part, but I think she also enjoyed the light show.
Today we made one last ditch attempt at getting rid of the dreaded replogl tube that is being used to suction her stomach. There was an idea that if we hooked the suction up to her g-tube that it might clear her that way and then we could take out the nasal tube. Sadly, it didn’t work. She became bloated within a couple of hours and there was very minimal output. We are disappointed. Really would like her to get rid of that tube, but at least the team found a way that she can go home with it.
There was more discussion today about the PICC line versus central line on her chest. We learned that Children’s home care would be okay with us going home with a PICC, but would not allow us to do the weekly dressing changes. They would require us to come to the hospital here in Seattle weekly. If we have a line placed on her chest, we would be allowed to do the dressing changes. This may be the nail in the coffin of our idea of keeping the PICC. It is functioning well, so it seems like we might as well continue to use it until it fails and hold off on more anesthesia for now. The care coordinator is contacting Providence to see if they were to supply our TPN would they allow us to do the dressing changes at home. If they say no, we will proceed with the procedure. It is not an option to us to bring her in weekly on top of clinic appointments. That is in contradiction of our goals of comfort and home for Aimee.
Tomorrow Ed and I will both be home to celebrate the newly minted double digit age of Caleb Edison. He and the other younger kids have been having a memorable week with their cousins at home. We are so grateful that there can be such sweet relationship with other family members during this season of separation. The connections between joy and sorrow, closeness and loss, gratefulness and grief are near together right now.
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We love to read your comments and encouragements! Messages to Aimee are always welcome too. I will definitely read them to her. :)
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