Friday, October 12, 2012
Calm, Cool, and Collected
I was able to get out of the hospital for 24hrs yesterday. WOW!! I have to tell you it was very difficult to walk out the door knowing I was going to be gone for an extended amount of time. I have only been away from Danny over nite only 2 other times since he had left the NICU, many years ago. I had a heavy heart, but I knew he would be taken care of in the PICU plus he had a "bonus" the "Eyes in the sky", a name they use for the video EEG guys, who were also watching & listening in on him. Once I got home we went to Avrianna's conferences and I have to say I'm pretty impressed with her. She is in the faster math class this quarter and she's gotten amazing grades so far this year. The teacher also says she's been a big helper in class .... I'm so proud of her. Avrianna is on the right track for her last year of elemtary and I hope that she continues to do well and enjoy school. After hitting the book fair I took Avrianna out for a lil mom n me time. We both got our hair cut and then off to have our nails done. YAY ~ how fun and relaxing was that!! Both of us had a Halloween theme painted on our nails...great minds think alike :) We were all ready for our exciting night of dinner and a show. We picked up Dan and one of Avrianna's friends, Lauren, and headed out for dinner at Victoria's. HOLY MOLY ~ I think I could have fed all 4 of us on one of the meals. Needless to say they have ALOT of left overs to eat up. We walked across the street, literally, to the PAC in downtown appleton for The Blue Man Group performance. It was amazing!! We got to sit in the "box" seats which I've never done before and the view was spectacular. We got to sit in "real" chairs with no one infront of us or behind....we definitly felt special. Being up 4 floors and looking over the balcony, I don't think you could get a better view. I had bought those tickets with the mind set we'd have more room for Danny's wheelchair.... I'm sad he wasn't able to come with but there will be other shows we'll get him too. Being able to sleep in my own bed was........Heaven! Even though Danny wasn't in the house it's weird how I found myself counting the "breathes" that the vent would normally breathe at and I could still hear that beeping from the heart rate monitors that is constantly on when you're in the PICU. Amazing how things like that are burnt into your brain. Once I fell asleep that was it...I was OUT cold. I even slept in which I can't remember that the last time I slept in that long before. Ahhhh, rested and ready to take on the day. Once I got ready, I grabbed my coffee, and was back on the road to head back down to Danny. Even though it was difficult for me to leave, it was great to get out and refresh my batteries. Dan has been a busy guy since I've been gone. But thankfully our schedule was not too busy, so if we were to be inpatient, really this was a good time. Last night he pulled an all niter at the laundry so he could get the Oshkosh store ready for another 80# washing machine to be installed. Almost everything is ready and I beleive he was going to try and install the new washer tonight. Avrianna was staying at her friends house this weekend seeing Dan will be busy at night and I really don't feel comfortable leaving her home alone at night yet, plus Dan has a full day Saturday with training and some firemans get together. Once I got back to CHOW I was pleasantly surprised to see Danny's eyes open and him watching tv. He's much more alert!! It's great to see!! The last few weeks he's slept for more of the days n nites then he's been awake. I hope I can contribute this alertness to the decrease in all his seizure meds. I LOVE it! Today is going to be more of a sit and watch day as the Neurologist doesn't want to take off anymore meds. The doctor said that Danny's brain is liking not having so many meds on board, BUT some of the spikes are getting pretty intense so they want to sit and watch what happens. He had one "small" episode this afternoon so I'm happy they got to see some activity. Now to see if anything else shows up. I found the BEST seizure control I found is..........an EEG. I've been praying for days that these "seizures" stop and NOW I'm praying that he has them as since the EEG I have not seen a thing. Who does that? Prays for seizures? Well a momma that wants answers and help for her son. Thankfully the eys in the sky have said that even though I haven't seen much clinically going on, his brain is showing things. I can't wait to sit down with them and see what they are talking about. When we came into hospital Danny was on 6 different seizure meds along with 2 other rescue meds. He is now only on 3 scheduled ones right now and the word is they would like to see another one off, for sure. I'm not totally sure what the plan is for, if it was to get the quantity of meds down or get him completely off them. They did start him on a dysautonomia med so I hope that helps keep things in check alil better for him with that. Danny is free and clear of the infection that got us here in the first place, phew! One less thing to worry about. I'm glad we elected to stay and have them manage his seizure issues n meds as we've also found out that Danny still is not peeing on his own and really hasn't produced the amounts he needs to. Now to figure out why...it is the brain, or issues with his Kidneys. We might need to get Nephrology and Urology involved, but hey the more the merrier right. Ahhhhh! I have decided to transfer all of Danny's Neuro and balcofen cares down here to CHOW. I do love our old Neuro, but its just a big issue for us ~ seeing the rest of the 13 specialists on his team are all down here. I've met 2 amazing Neuros here during this stay ~ one being the chair of Neuro from Froedert and the other the head of the Childrens' Hospital Neuro dept. They both agreed to follow Danny outpatient, so I am going to take them up on their offer. Once again more changes, but I believe it will be better care in the long run if they are familiar with Danny Neuro wise here. Considering Neuro is Danny's BIGGEST issues. I just wish you could fix the brain, what a complex organ.....wouldn't that be an amazing idea. Thanks for stopping by to check in on us. Please leave a post or comment that you stopped by. I ready them to Danny and we/he loves to hear from you too. I also started a FaceBook page for Danny. It's called Touched By Danny's Life. Stop by and like his page for more daily updates along with more pictures.