What a rough few days it's been around here. We came home on Thursday as Wednesday Danny had Another failed attempt at restarting feeds and me having to Fight for proper treatment with doctors that don't understand severe brain damage and their patients normals. I had to Blew my top and we were sent home to finish treatment in the comforts of our own home, under the watchful eye of our Amazing Pediatrician and Palliative care. It's safer for him to not be at the hospital and safer for them if I'm not here (lol). I'm done fighting for the care my son deserves. We have an amazing Medical team at home so it wasn't a difficult decision to head back to the Osero ICU. The hospital got baseline labs n X-rays before we left along with having to arrange to have more equipment to be delivered to the house. Danny's room is in deed an ICU room now the rest of the equipment we need to care for him at home was delivered. We are So grateful to have 2 physicians that believe in my son's quality of life and capabilities of me taking care of him. He is still pretty sick so it will be awhile before we can get back to any kind of normalcy but just to be home is a good start !! It was wonderful to have my family all back under on roof again and to sleep in our own beds and take a hot shower in our own shower - was amazing. Recovery seems to be slow for Danny with restarting his gut. He still isn't tolerating much more in his stomach then his meds (thankfully his OK with those) he will retch if he's over whelmed and he his bowels are dumping which is really irritating his bum with all the bm's. I'm glad we are able to keep his nutrition maintained by IV TPN, but my hope is to get him off it as soon as possible. The longer he's on it the harder to get off and the more damage to other functions and organs if kept on it at length. So it's a scary bittersweet.
I have had to restart 5 days of 1000mg steroid IV infusion at the local hospital due to losing vision in my right eye. Stress is an awful thing!!! No matter how much I say I'm fine and put a smile on my face, internally stress just eats you up. As I sit in the hospital for 2 hrs a day away from my family I am more frustrated that I can't be the mom, women, nurse I need to be. With the heavy doses of meds I'm getting its trying to fix one thing but breaking others as my bp and hear rate are high, I now have a migraine like no other, my taste buds are leaving and I'm gaining weight. I no longer have my med port for access so becoming a human pin cushion everyday is getting old n painful. The more I'm on this med the more it destroys my already crappy veins. Maybe the port should have stayed in. Time will tell if I'll regain my vision totally, so I sit and wait impatiently.
Av went to a Valentine's Day dance on Friday nite, I'm so glad I was home to see her.. They were cute. Sorry I haven't posted photos as the hospital connection limits what I can post. I can't believe the end of the third quarter is approaching us, but once again she had a fabulous quarter. Diving is going well and we are gearing up for a great spring n summer of meets. Then in the fall it's into her first season diving for the high school - oh my!!
Dan and Av did amazing with holding down the household while Danny and I were gone in addition to helping out with my daily infusions this week. I don't know what I would do without them in my corner, picking up the slack and being my support system. They are my ROCKS!!! It can't be easy for them to have such a crazy unstable lifestyle at times, but I'm so proud that they rise to the occasion and take care of what needs to be done.
I'm am SO LOOKING forward to getting away somewhere warm and having fun for spring break. Things have been too crazy to not have some enjoyable didn't time. This "vacation" is going to be somewhat different for us. Once I get more things in place I can't wait to fill you in.
Thanks for stopping by and checking in on us. Your support and orators are greatly appreciated.