Friday, October 26, 2012

Danny and I were discharged from CHOW on the 15th about a week n a half ago. He's been doing pretty good since we've been home. I'm not sure what might be going on with him NOW as he's slept the last 2 days n nights straight. I have to wonder if he's starting to brew something up again. I sure hope not! His right ear is giving him some grief once again, maybe it's something as simple as that.....or maybe not. How frustrating when he can't tell me what's wrong....I just have to figure it out.


Hitting the road!!
He's in there........Where's Danny?!  That's how we roll :)

The Neurologist's in CHOW seemed to be impressed with Danny's EEG. Even going off most of the seizure meds he was admitted with, the EEG only regstered Three 15 second seizures the whole 4 days he had it on. That's not too say what was going on was not deep brain seizures as an EEG can not register those. BUT, I do find it strange that when he was on all 8 seizure meds he continued to have these "episodes", but now only on 2 seizure meds I really haven't seen a thing. Danny did start a dysautonomia med while in the hospital and it makes me wonder if what was going on was really dysautonomia not seizures.
We were able to capture a nice picture of Danny for his 3rd grade school picture.  What do you think? Not too shabby :)

Once we got home we had a visitor come over.  Isn't she a doll!!  Danny just loves her.  I think he would make a great babysitter, heehee

On the 24th my baby girl turned 10...can you believe it, 10! Where has the time gone? I can't believe how fast she's growing up.  Dan and I made her the bed she's been wanting.  I think she likes it as she's always on it!  This comes from the tree the Dan cut down Up North, to the lumber we cut and plained, to this beautiful bed.  Now that's homemade!  We also got her a phone, that was a big step for me.  We are currently the "coolest" parents ever.....for the moment.  LOL !  Tonight we have 6 of her girls friends sleeping over.  First I'm going to feed them and pump them with cake n ice cream then ship them off to the skating rink to burn off all the sugar.  In hopes they will be exhaused and crash when they get back.

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 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 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.

Monday, October 8, 2012

Riding the Storm

Danny remains comfy during this hospitalization. Now if only he'd share his bed with his momma I might be able to say I've been comfy too, lol. I was able to start my new pain meds last night and it's too early to tell yet if they are going to work, but I'm hoping by the next day or two i'll get some relief. I have to say I'm not too impressed with the loopy feeling side effects that I've been feeling, so well see. I'll give them the benefit of the doubt but if I can't "adjust" soon then I'm not sure I will be staying on them. Danny is recovering from his illness pretty well. His numbers continue to trend back to "normal" levels. There is still no good reasons to why've had ALL of the issues he had when we came in were going on, Go Figure! I havent seen his baby blues much of the day :(. I'm hoping his trying to rest and let his system heal. The last 2 days he has been having more intense seizures or what we believe are seizures. He required many recovery meds, even more the he normally would get. So I'm wondering if the tiredness is from the meds snowing him. A Neurologist from here (well actually hes the head of Froedert Neuro) came in this morning to talk about Danny and see the video of Danny "seizing" (see my FB page to see). I have to say I was very impressed with his knowledge and interest in Danny. Might even think about switching Dr's to him...we'll see He had many ideas as to how to help dx what's going on with Lil Man. Right now Danny is hooked up to a long term video EEG and of course no episodes have occurred since they were put on. I believe we are going to take him off All his seizure meds and see what happens. If things get worse then he will put back on the ones he feels with help instead of having 7 different ones that could potentially not working, as some could counter act one another. If they are not seizures then we can peruse the route of dyautonomia, possible mitocondrial disease, or it's the progression of his brain damage. Good, bad or indifferent I want to know what or If I can get my son back. I'm punting here! He had a thought that because I have 2 mito diseases (MS & fibro) that possible Danny has an underlining mito also. I need to know what's going on. This was not an easy decision to make, but I feel it needs to be done. The way things are and have been this summer is no quality of life for Danny and it breaks my heart. We'll see how things turn out. I have no idea when we will bust out of here. But I will be running home Thursday for Avrianna's conferences and then off to "The Blue Man Group" in the evening. I can't wait to see Avrianna as I haven't seen here since I left her crying In the ER room last Wednesday. As always our life has gotten a bit crazy, and I'm forever grateful for all your love and support getting us through another health crisis. You guys are amazing!!

Friday, October 5, 2012

Why would this be different??

As usual Danny remains a mystery in the medical world. I swear I need to write my own book, lol. Most of all the labs have come back and not much has jumped out saying here I am. We are still waiting for the cultures to come back and maybe they will show something more concrete. As for now they are still going to continue the 2 broad spectrum antibiotics, until they get more results to see if things need to be changed. I do believe the IV antibiotics are working, because he was actually awake for awhile today AND he gave me a smile :). Danny Is doing well with the Lasix on board so we'll be keeping that on board on a regular basis to flush all the extra fluid off. Now to wait and see if his "fluffiness" goes away. The xrays this morning had shown fluid still in both lungs, so i think this is going to be a slow process. He hasn't lost any weight Since the Lasix but one can only hope. Today the started TPN and lipids to give him some nutrition IV in hopes to help him get stronger and healthier. This will be his main source of nutrition until we can work up on his feeds once his GI track starts working again and hes not so wretchy with things being in nis tummy. We have been able to give him his meds and start a slow rate of formula in his gut, it's a start. Now let's see how well he tolerates it. The GI shut down has many theories as to why...could be from the heavy sedation, having an infection, seizures and or all of the above. GI always seems to one of Danny's Lil tattle tails when he's not feeling good, but he's never gone to this extreme. He normal will shut down when under anesthesia so being this heavily sedated could Ring true as to why GI has caused him problems. Danny's thyroid tests have come back relatively normal and so did his ammonia levels. Sorry not too much to update, but I'll hopefully have more answers tomorrow. Going to get some shut eye. I'm exhausted!

Thursday, October 4, 2012

What's going on here!!!!!!!!

The wheels have fallen off this roller coaster ride I call life. Now to figure out how to put things back together. I blog from my ever so comfy couch bed in rm # 404 at CHOW. We came via chariot last night with a very sick little boy. As you all know from my blogs that Danny hasn't really had to best time this summer, it seems as the last rod lengthening was the point of no return for Danny. He just hasn't been the same :(. Well the last few weeks have been no exception to the rule, with new issues that all came tumbling down yesterday morning. First, and most important with all this craziness Danny has remained comfortable which is so important. The issue is he's TOO comfy and that presents tons of problems. Now to figure out why/what's going on with him. This is what I do know as of right now..... his poor body is shutting down!!! He has stopped peeing on his own the last few weeks and noW has stopped producing urine as of yesterday. His lack of BM's despite many attempts to get him to go is concerning but the KUB has shown NO perf or obstruction so that's encourging. He has severe pitting edema and is swollen everywhere, poor boy looks like a stay puff marshmallow. He's gained so much weight in a very short amount of time. The chest X-rays this am is showing fluid in the lungs now too, and I'm waiting on a game plan as to what they are going to try to get rid of this excess fluid. Danny won't wake up!! He is out no matter what we do to arouse it doesn't work. There are tons of theories right no as to what's going on, but nothing concrete so let the testing begin. His CRP ( inflammation marker) is high and his labs have shown a bacterial infection in the blood stream, BUT we caught it in time and it looks like Danny is NOT sepsis, phew! He is not tolerating his feedings, but if we run slowly he manages to most of his meds down. I believe tomorrow they are going to start TPN. There is bleeding coming from his rt Inner ear, trache, and this morning the Gtube. This afternoon they are going to be doing a bronche at the bedside. I believe they are ordering brain imaging, possible long term EEG, cardiac tests, thyroid tests, and many more that Im sure I am missing. Today n tomorrow will be more of dx day and I hope if we seek then we shall find. I will keep you posted as I know more. And now onto me. Tuesday I had a follow up with my Neuro she confirmed that for the most part my brain imaging has remained stable. I still have my lesions but no new ones :). YAY!! It was nice that she was able to go through the parts of the brain that are injured and what it does as it reassured me that most of my issues are indeed MS related as to wherethe sores are located in the my brain. Most of them are located in both frontal lobes. The reason my right side is mostly effected is do to the location the lesion in my spinal cord is. I was also dx with fibromyalgia too, well isn't that special. NOT! Whatcha going to do - it is what it is, but come on ... Who the hell did I piss off? At least I have a reason as to why I hurt so much all the time. I'm looking into diffent therapies and meds to aid me in my independence for longer. Time will tell if things are working, but not gained if nothing tried....right?? I can wonder how well this medical stress with Danny is aggravating my symptoms. Just this morning my hands were weak and I dropped my pumpkin latte, grrrrr. Now that just not's Pumpkin!! Dan and Avrianna have been bonding more lately and I have to say its SO nice to see. Those two are two peas in pod. They had a Daddy daughter weekend last week up north and had a blast. Dan has taught her how to ride the 4 wheeler and I guess she's become some what of a sharp shooter. He's teaching her how to shoot n hunter safety and she is a natural, go figure. I'm so happy she is excited about going up north now more often and spending more time with her dad. And I can bet Dan is loving it too :) They are planning on another trip this weekend. Which will be nice to get her mind off us being here at the hospital. Avrianna had a really rough time in the ER when we left. It was really the first time she saw transport come pick us up and it scared her. I felt just awful having to walk away from her as she was hugging me tight and crying. Nothing like tearing my heart out and stomping all over it. I can only imagine what goes through her mind and how it plays with her emotions. Poor bug :(