Ethan is doing well. He was very content yesterday. So last night they lowered his fentanyl drip again. Twice in 24 hours. Plus, his prn meds have been drastically reduced for 2 days now. . . So withdrawls are kicking in (even though he is still on hefty narcotics). They have increased his withdrawl meds, but he still he is having a hard time "settling". Not to mention he has had a low grade fever for 24 hours now. But all his blood work is negative for an infection. It could be a little viral something, or his body reacting to the withdrawls. None the less, we are staying the course and trying to keep it quiet, and optimize his nutrition.
Like I mentioned yesterday, if Ethan doesn't get off the vent or let go of his swelling then they are going to do procedures: trache him again (because it is easier to manage his lungs and wean him with it over the next couple weeks. Ugh! They say it would be temporary again. . . but there is always the risk once its in, it won't come out. They also will insert a peritaneal catheter (a dialysis cath). His kidneys are working great, but the said he may need a "third kidney" to rid all his excess fluid. Really hoping we don't have to put him through more procedures. It breaks my heart to see him going through so much. Yet I am in awe that he has endured this much so far. But we will do it if it will make him better.
3 comments:
Way too many decisions and challenges. I am sorry this is such a tough road. Ethan is incredible and he has been specially blessed with a caring family. Hang in there. We are still praying.
So sorry that Ethan's having a rough ride of things right now. Every time I see you've updated, I keep hoping that things are settling down... but you're still stuck on that rollercoaster. Hoping and praying that Ethan's withdrawals ease quickly, and that he doesn't develop any infections. Also hoping that he turns the corner soon so you can avoid any more procedures. I know you know that they can help him to get better, but it's still hard for a mum to have to watch it all happen. You're all doing brilliantly - keep hanging in there. With love and hugs from across the pond, Alison X
Sorry I ditched you again. I miss my buddy, but my little sister went into labor this morning. I promise to be back next week. No more skipping work for me.
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