The long awaited update: On Wed of this past week, Allie went into see her surgeon. She had an xray and confirmed what her private duty nurse (PDN) and I already knew, her ND tube (the one in her nose) was dislodged from its location and was now sitting in her tummy making her belly hurt. The surgeon tried to reposition the tube but only managed to knick it twice in her stomach and once in her nose. Now we cant use the thing at ALL. The whole ordeal was so traumatic I decided to forgo nightly meds and feeds and just let her rest. This was a very hard decision to make because we also learned that Allies weight was going back down, one month ago she was 16.3k now she is 15.7k, a loss of 1.32 lbs. Allie needed the rest. I knew what would be involved in replacing, an admission and sedation, she needed a break even if just for the night. Thur morning we took her in the GI office (another x ray showed where the tube was knicked). After several communication attempts between GI and Surgery, Surgery and me, me and GI and any other combination there of the surgeon told me that they would get it taken care of and call me back. Off to therapy to see Allies favorite therapist, Jesse. This put Allie in a great mood, good thing cause the surgeon called at 1130 and said to be in IR at 100 for a 130 tube placement with sedation. If we were just a minute late we would have to wait for the 430 slot. We arrived at 1240, registered, and waited. We waited and waited. My frustration grew and grew. I knew what was happening, there would be no procedure today. At 4 oclock it was confirmed. There was no sedation scheduled and it couldnt be scheduled. It would be to impossible to get Allie to cooperate for a non sedated nasal tube placement and she would need to be admitted. We wait and wait. At 530 I said forget it, Im going home, call me when you know what time you want me back here to place the tube. It was 9pm when they called to say come on down we have a bed for her to be admitted. I bring her down and it was 1030 before they had her in her bed that was ready. Lots and lots happened on Thursday, calls were placed to advocates and patient reps. I was NOT a happy mommy. On Friday morning John and I arrive at 730 so that we can be there for the procedure. The hospital was going out of its way to make things right. The director and assistant director of radiology were there offering to buy us breakfast and coffee while we waited, we had a private room to wait in, the advocate was there, I was not only allowed to stay with Allie and hold her while they put her under but I was immediately summons when she was done and taken to her before she was taken to recovery. The surgeon was able to get a feeding tube for her stomach and not her nose. Allie is so happy to have no tubes on her face. Now we prepare for the future. On the 15th Allie will be in the OR for a second round of botox. If this round does not work any better than the first then on the 22nd she will be in surgery getting a cecostomy tube placed to flush her colon and keep it clean. Keep her in your prayers.
Posted on: Sun, 11 May 2014 23:02:00 +0000
Trending Topics
Recently Viewed Topics
© 2015