This afternoon Danny went down to get his 1cm (10mm) kidney stone removed on the left side and to see about removing the cyst/pocket on the right side. They actually called up early for him to come down for surgery....he went under at 12, wow that's surprising going into OR early. LOL! Then Dr Beste (Danny's ENT) was in OR today too so he stopped in the OR room to clean out Danny's right ear as it had bloody discharge coming out of it this morning.....he had his ear tubes replaced in his ears when the trache was put in. After about 2 hours in OR Dr Durkee called to let me know he wasn't able to go through the ureter to get at the kidney due to Danny's significant scoliosis bending the area making the ureter too narrow. UGH!!!!! He did put a stent in, in hopes to stretch the ureter out hopefully making the next attempt successful. Dr Durkee is now on vacation all next week so if one of his partners can't do the procedure it looks as if the stone stays for another 2-3 weeks. The surgery nurse brought him up and said Danny did well and he should not be in pain. Well Danny has been up crying out three times this afternoon while just peeing, which is red by the way. I would think sticking a probe in and out of your Willy Wonka (thanks Connie, my new word) for two hours would warrant pain, maybe she should have it done. So I'm a very disappointed mom today ~ I'm feeling so helpless for my lil man. I wish I could just take this all away! Watching his face cry out is breaking my heart.....now that he is trached he doesn't make much noise so all only see his sad...very sad face. Wishing Danny would be able to enjoy his new airway outside the hospital room. Overwhelmed today, very overwhelmed!
Dan and Avrianna will be coming down tomorrow. I'm excited about that! Dan and I will continue our training so in the event we can get out of here that will NOT be the reason holding us here. In my eyes I think we are looking at least 2 more weeks, UGH. After being in the hospital over a month and really not having an end in sight, I'm very frustrated!! I can only hope that Danny's Gut will start working, tolerating, and processing properly soon. And that the kidney stone/pocket can be removed before any other issues show up. As we all know being the hospital it's a pool of bugs n bacteria and he/we can't afford to get anything more new. I hope Danny can get some comfort VERY SOON...he's been in serious discomfort now since Friday, so almost a week. SIGH!
She's volunteering for her brother's program. Squee!
12 hours ago