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.

**SIGH**

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.

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.

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!!

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!

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 right.....it'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 :(

Overdue Recap of the Week

Boy I wasn't fibbing when I said there was ALOT of work to do once we were home.  It's taken the whole week, but I think I'm finally all caught up.  I really don't want to say that too loud or something else will pop up that I forget to do, reschedule, have done, etc.  It's one thing to be gone when extended hospital stays are "planned", but in emergency situations it really hurts the schedule and  the home front.  I swear if I don't push for home the medical staff forgets I DO have a life away from the hospital, lol and it's in need of attention so When I start to see this face return its time to bust out of there :)

 We were discharged on Friday the 24th.  Not only a great day just to be discharged from this visit but it's also the 3yr discharge anniversary from our extended stay with the crash of '09.  Danny and I were able go home after a 79days of being in the hospital, It would the first time our family was together and living in the dream home we built.  Aug 24th also is an important date as we started private duty nursing in the home, it's a date to remember :)

Look at this amazing sunset I was able to capture as we pulled off the highway down the road from our home :)  Beautiful!!

Once home I went into clean mode right away.  Throwing away anything that he used or touched before we left.  They still don't know why or what triggered this event and I was doing everything I could to prevent it happening again.  I had no nursing the night we got home, so I can tell you when my head finally hit the bed I WAS OUT!

I call this picture Danny Ala Cart!

Danny and Puff are the best of BFF's.  I'm alil bummed about it mostly because I don't have a great flow as of yet with Danny being hooked up to all these tubes ALL THE TIME.  Not only is he on Puff, but he is now on a Continuous feed with constant GTube venting 24/7 also.  Let me tell you we have gotten pretty creative with all the tubes so it all works like it's suppose to.  There has been some hiccups along the way, with feeding the bed, having the syringe tip over with all the residual in it, tipping over the water chamber and sucking water up all of Puff's hoses and giving him a shower well.......that might take awhile.  It's circus around here, but everyday I believe we are getting better at.  I'm sure Danny is watching us just rolling his eyes as we try to find a productive flow.....I do think he enjoys all the "extra" attention hes getting now though.  Once we "know" what we are doing I hope the awkwardness will subside.  Danny himself has improved greatly.  We went to visit Dr Kasper on Wednesday afternoon and ALL his labs came back NORMAL~ platelets, CO2, hemoglobin, everything......We fixed him :)  Well kindda ~ Danny still remains on Puff 24/7 and with how he reacts trying to take him off Puff, I don't really see an end in sight.  I LOVE LOVE LOVE how Puff helps Danny now.  Danny is more awake, more alert, breathing SO MUCH better.  Even more then he did, before this health scare, when he was on Puff.  The settings were changed to take deeper breathes and Danny really likes that.  As long as I see Puff n Danny playing nice together I can deal my issues with Puff and Puff can stay. 

Here's my Science experiment ~

This is what happens when I don't show anyone how to clean the pool.  I should have just called the pool company to come out and maintain the pool while I was gone, but quite honestly I didn't even think about it, till I saw this.  UGH!!  I've been diligent with cleaning, shocking, and back washing it pretty much everyday.  As of day it's looking ALOT better.  I'm just glad the pool is only going to be open a few more weeks and then we'll drain the whole thing so next year when we start it up for the season we'll have it power washed, sand in the filter replaced and brand new water.  Start a Fresh!!  I've had issues with the pool ALL season long and it needs a redo.

Avrianna has had many "news" this week.  She's learned how to do laundry from start to finish and I taught her how to mow the lawn with the BIG John Deer.  She is LOVING it......for now.  I'm sure it will be like every other chore where I'm dragging her to do it, but for now she asking me everyday if the lawn needs to be mowed.  WOW ~ my baby is "driving" and she's really good at it :)

After trying to grow her hair out for a long while.....Avrianna comes to me on Sunday and asks for a hair cut. And she wanted it short.  

Before~

After ~ Isn't it cute!!

Then the next day she decides that she wants the front even shorter.....

SO~

I think it's even cuter then the first cut :)

Yesterday Avrianna and I went to her school for an Open House, to meet n greet her new teacher and drop off all her supplies.  Avrianna is very excited to be a BIG 5th grader, her last year in elementary, and she feels more comfortable now that she's met her teacher.  I hope for a great year for her!!  Today I stopped in to Danny's school and registered him for this year, WOW a 3rd grader!  I got to talk with Danny's principle while there and I've already got the bug in her ear that I am going to be requesting an early IEP and change things around this year :)

I had to go in for surgery yesterday to have more of the area cut out where the Derm Doc removed a mole that came back A typical.  Holy cow do I have a LARGE incision for just a mole.  The location is one that could have been located better.  In my arm pit and the incision darn near goes right across the whole thing.  Man it hurts! It's bruised n swollen,  And every time I move my arm, it lets me know its there.  I have 2 weeks with stitches aka supposed weight restrictions and needless to say, I haven't been really good at following it.  I need to work on my listening skills more, lol.

On the MS front I'm pretty excited......I have found a APNP locally at NeuroScience that is willing to be part of my "Team".  I can't believe it!!  Everything isn't totally finalized as of yet, but the APNP will follow me locally through the year and I will still be able to see the Neurologist in Milwaukee.  I am getting the best of both worlds here!!  I don't want to jump for joy yet, but if this pans out I will be able to do my monthly infusions here locally and if I have a relapse where I need steroid infusions I can do those locally too.  How great is that to be taken care of locally under the direction/care of the head of the MS clinic from Milwaukee, who by the way to FANTASTIC.  I'm hopeful that things will work out.  The APNP I've been in contact via email has gone out of her way to help me out and she isn't even following me yet.  Woot Woot!!  Man I hope this comes together as it would be one less hurdle I would have to jump over with this MS crap.  When I'm doing good it's no problem to go to Milwaukee for follow up, but when I'm down in out.....honestly it's hard enough to just get out of bed some days.

Please take moment to remember Danny's dear BFF in heaven, Mattman.  He will forever be in our hearts and always in our minds.  Today he's 6 yrs old and I'm sure he's partying it up in Heaven today.  And on 9-6 will mark his 1st anniversary of going to Heaven.  Love you Mr RottenPants!!

With his awesome Momma Heather!

BFF's ~ watch out they were double TROUBLE!

I was happy I was home from the hospital and able to make my Grandfather's surprise 80th birthday party.  It was a great time ~ and for the first time.......I think ever the man was speechless, lol.  Happy Birthday Grandpa Kohl

Grandpa and his grandbabies :)

I was able to snatch a once in a blue moon picture of my sister n her family too :)

Overachiever

There was more adjusting to Puffs settings last might and it worked to bring down Danny's CO2 levels. It works so well that he is now too low, lol.  So there was two more adjustments made this morning and now we to see how Danny reacts to them. They were in at 2 to draw another blood gas on Danny. If it's in more of a normal range then we get to bust out of here :). There will be a lot to do at home, but its so worth it to be there instead of 100 miles in the hospital away from my family. It definitely helps that we have a capnography monitor (shows the amount of co2 he's blowing out of the trache or, entitle as they call it) at home. It was pretty comical watching most of the medical staff drop their jaws when I said we had one on the home as they are normally only in the hospital setting. Danny is NOT breathing on his own right now. I think all of the CO2 fluctuation and his extereme lethargy has suppressed his drive to breath :(. I hope in time he'll be able to be off the vent while awake, but for now Puff and Danny will be BFF's. in talking with the Pulm Dr i was made aware he might just be on Puff from now on. It's not the Danny's lungs are bad it's his drive to breath. So instead of damaging the lung ability/function they are thinking of just giving his body what it needs and that might be being on Puff indefinitely. Another hard pill to swallow, but as I always say.... As long as Danny is still there and fighting I will continue to fight for what he needs. And if he need to be on Puff to stay healthy and comfortable ..... So be it! Danny also is not peeing on his own. He's producing but not letting it out. So he needs to be Cathed every 8 hrs or we'll need to put a foley back in. A foley is a cath thats in all the time and it drains into a bag. We ended up taking the foley out yesterday as his Lil petergetter started bleeding :(. So I'm not quite sure what we are going to do if this is going to be a long tm thing. Most of Danny's blood levels have returned on their own, YAY! And the mystery saga continues......the generic labs that were done for an auto Immune disorder are all coming back negative. There are just a couple left out there but it's looking like he doesn't have Lupus. I'm so happy, but i'm not going to jump for joy till all of them come back. The test for the Lupus anticoagulant which he has tested positive for before has also come back negative so they no longer can use that excuse for his high PTT (clotting factor). Which makes things alil more frustrating as there is now no reason for those tone off other then the - BECAUSE IT'S DANNY - excuse. Sigh! I'm glad all these things are going getting rules out, but come on! Only my son can do all of this craziness with NO REASON. This morning I was able to have a nice chat with Danny's ortho surgeon and the decision has been made to fuse his back along with replacing the baclofen Pump in January. This will be his longest surgery EVER. The ortho said about 10 hrs, YIKES! There will also be a lot of blood loss that will require blood products. My anxiety is already UP :(. I'm hoping that this will improve his quality of life in the long run with illiminating lots of multiple surgeries down the road. After this BIG one he won't have a scheduled surgery for another 7yrs when the pump needs to be replaced again. The CO2 levels just came back great! I will be pushing for those discharged papers ASAP!

Teeter Totter

Great news Danny's CBC is improving all on its own :). This morning his platelets and hemoglobin took a wonderful jump in the right direction all on its own :). So they have labeled this event as Viral....aka they don't have a clue, lol. We'll see what the auto immune tests come back next week. Palliative care will keep me up to date with that follow up. Unfortunately Danny's CO2 levels are still high despite the increase of Puff's settings. It Is still at 48 and they'd like to see him more in the mid 30's  Pulmonary would like to see he CO2 levels better before discharge so they changed the settings even more and cross your fingers he responds well so we can go home soon.  I'm not getting my hopes up as to when because that it is such an emotional coaster when we can't leave, but I'm just happy the thought of discharge is in our near future. When Danny is ready, then we'll go. He runs the show :)
Wish Dan luck as he will be registering Avrianna for school tomorrow AND getting her ready for school pics.  Yikes!!  This could be interesting, lol. In the scheme of things it's pretty minimal as I have all the paperwork done, so he just has to drop them off and pay for registration n hot lunch. Which by the way is going to be totally different for us, as last year if she had 12 hot lunches the whole year that would be pushing it....but this year they changed services and she is interested in taking most of the days hot lunch, yay me!!  Avrianna is pretty independent with what she wants to wear and getting herself ready, she's way too old now for me to do her hair - At least that is what she keeps telling me :(. I'm just sad I'm going to miss it as I'm always with her for these kinds of things. I can't wait to find out who she has as a teacher this year, and I'm sure she will look fantastic for her last year of elementary picture. Can you believe she is a 5th grader and Danny is a 3rd grader this year. Wow - I'm getting old, lol.
I can't believe summer is over with ... What a way to end it, sitting around here
I'll keep you posted!

Unknown

Well we have been here for 5 days and still no answers as what's going on.  Good news they have been deligent in the tests so there are things that are getting ruled out one by one.  Good news is Danny has stabled out and his numbers have remained the same the last 2 days. They are still not where they need to be but they are not going in the wrong direction anymore. So with that being said, if his labs are still stable in the morning and nothing else pops up.....we might bust out of here tomorrow.  He's still pretty sick, but we can do the monitoring and cares at home seeing things are not "critical" anymore. The Drs ordered a panel of auto immune tests and we should have the results back sometime next week.  Which will tell us if he does have Lupus or some other auto immune disorder.  Seeing I have MS which is an auto immune disorder, he is (and Avrianna) are at a higher risk to having one also, well isn't that just great :(.  If all those tests come back normal they are shooting at stars as to why all of this craziness happened. Of course I get the .... It could be viral, or dysautonomia progression, grrrrr, don't you love those diagnosis' ... Just say you don't know, lol. All The numbers don't show infection except for the obvious tracheitis he's got going on.
Time will tell OR maybe it won't.
It will be so nice to be in the comforts of our home.  Being there I'm sure Danny will recover better and I PROMISE you my bed is more comfy then here, lol. Even though it's alil more chaotic when home it's easier on the family when we're all together.  A lot less stressful :). And I'm sure his "girls" are going crazy knowing others are taking care of him. Don't worry I'm making sure they are doing it right :). He misses them dearly I can tell.  I'm excited to see his reactions when he's back at home with his "girls", Dad, Avrianna, and dogs.  I'm bored!!!  There's only so much tv I can stand and i've hit my limit for the year I think, lol. I did bring a book and my scrap booking but my vision concentration levels are just not working well.  My left arm n hand are really driving me NUTS as they are still in a constant tingling, heavy, spastic hot mess.
I'll keep you posted on what's going on

A Typical

Things around here are still up in the air. We have ruled out a few little things here n there, but finding out why all this going on with Danny still remains a mystery.  Go figure!!!  His platelets continue to drop and is now at 53000, plus his hemoglobin has dropped to 10.   His Last PTT was way too high at 68.  His CRP which is an inflammation marker is elevating also. The EEG that was done hadn't shown any remarkable changes and the Neuro team is working on getting ahold of Danny Neuro in GB to pick his brain and see if there is anything he would recommend doing. I am so happy that they are working together with his Dr that knows Danny better.  The trache aspirate has shown multiple issues that are not only colonized but in a full blown party in there. The tests keep coming, and most are abnormal, but nothing has jumped out saying LOOK ITS ME.  Yesterday I didn't see his eyes much at all, so I'll be interested to see what his Hemo and CO2 levels are at now.  Labs were not ordered this morning so we'll see if they feel it's needed today.  I'm sure they will as he has now spiked a fever :(.  It so frustrating to see all thats going on and to not have a dx as to why. I commend the families that are undiagnosed as it would drive me insane. One theory is that Danny has an autoimmune disorder called Lupus. It would make sense to issues to he has not only now but things he  "normally" deals with ongoing too. Not that I want him to have an autoimmune disorder of top of everything else but it would be nice to have all the pieces of the puzzle put together.  Well see if/ when other things get ruled out if they do the test for it instead of speculating. You all know me, I'm all about Proving it.  
Avrianna has been her usual self busy busy busy. She went up north my dad and nephew to his cabin and she had a BLAST.  How awesome is that!!  I'm so happy she had a good time AND that she was able to hang out with my dad for some bonding time. Amazing how you see a change in your parent when they are with your kids. It's wonderful she enjoys spending time with him and it seems like he enjoyed spending time with her - yay !!  Yesterday she hung out with my sister n family and they went to Bay Beach for the day. They keep this up and Avrianna will want us to be gone more often, lol. Today she goes home, - back to reality and responsibility. I think Dan misses her as he's been holding down the fort all alone :(. He's also has kept himself busy, like that is a surprise, lol. As he can NEVER sit still. I'm alil jealous as he told me he's managed to cook up a pot of soup and bake a cake, both of Avrianna's favorites. That's ok i'll eat this wonderful hospital food - lol.
I am holding up around here. Stressful none the less, so "Wagener" has shown its face. My gate feels off, but that could be due to my vision not being the best.  My left arm/hand is taking the brunt of this as they are tingling/asleep MOST of the time. Frustrating!!!  The couch bed has giving me some extra kinks so I can't necessarily blame MS for that......yet.  In all this craziness with Danny I forgot to mention I will be going in for minor surgery next week as one on the moles that was biopsies last month A typical. Not that it is cancer just that the cells are more likely to turn into cancer if it's not all taken out. I just laugh and am not surprised as this is how things roll with me, but really come on, does it look as if I need another issue right now. It's not that they are doing surgery that bothers me...it's the lifting restrictions after words. Grrrrr!!
I'll keep you all posted

And this is why................

I'm going to BLOW!!!! I'm trying to hold it together as I know Danny needs to be inpatient to figure out what is causing him all these issues, but can this system get their shit together. This is a reoccurring issue when we are here with miscommunication and screw ups ...... then they wonder why I am the way I am. I've come with ALL the info written out in black and white for them as to everything needed for Danny and his routines, but things still get messed up. How much easier can I make if for Them.? This is why I try everything in my power to STAY home. Sometimes i truly wonder if they listen to me and are really trying to make him better? As some of this mistakes could potentially make him Very Very sick. We've been here less then 24 hours and here's the run down of everything that has gone wrong so far - Some of these are very minimual but things that have been repeatedly stated here 1. Lost paperwork 2 hrs into ER stay 2. X-ray came in to do X-rays in the ER and it was for a different patient. 3. They still have heaters set up to the vent set up for him 4. At admission RT was in here but didn't suction him out when it was evident he needed it. 5. His rectal probe was taped down on his leg with - yeap you guessed it the tape he is allergic too 6. I find it funny at 10pm the nurse found out I never signed a consent form to be here, lol 7. I specifically stated when they asked for allergies that he's allergic to Tobramycin and needs Tobi for his nebs and guess what was brought up? I'm so glad we found that out before it was given 8. After waiting 30 mins for his prn meds, during a seizure (as it got over looked and didn't get added to the med sheet right away) we opted to give the diastat as it was taking too long. Just before we gave the diastat the prn med came up so we were able to give the Clonezepam. About 10 mins later the Dr comes in to apologize as pharmacy just called her stating the syringe labeled Clonezepam was mislabeled and we gave him Clonidine. Which is another med he has severe sensitivity too. Guess that's why his seizure didn't react to the med and we had to give him Diastat. :( So the added Clonidine and diastat isn't going to help with his already severe sedation,but what is done is done and we'll just have to Watch him closely. I hope this doesn't set him back anymore. There is an incident report being written up over the mislabeled Clonezepam. Ok my vent is Done time to move on....... On the Danny front Over night he remained stable - not any worse but not any better either. In true Danny form everyone here is clueless to as why his body is responding like this. Is it an virus, infection, seizures, meds??? ......right now all options are on the table These are the issue at hand for Danny - severe sedation - hypoventilation - thick/ yellow secretions - right lower atelectesis - HIGH CO2 levels (68) - LOW platelets (65,000) - LOW BP (61/42) - low temps (91 F) - petechia n brusing - urine retention - seizures - severe drooling We've increased Puff's rate to 12 from 6 in hopes to help him blow off some of the co2. Over the nite he did drop down to 59 so I think that's working. They've increased his breathing treatments even more, but I haven't seen any improvement as of yet. They are really stumped with the low platelets whether it's an infection issue or if his body isn't producing or is destroying. Its Still a mystery :(. The low BP was tried to be "fixed" with a bolus of fluids, but it backfired and it dropped further 89/36 his temps started dropping again and his body is looking "fluffy" so I'm sure he's started to 3rd space :(. Right now they are doing an EEG to see if his seizures have gone status or if theres any change in the activity which could be a reason as to some of this issues. We are really no further ahead yet, but things ARE getting ruled out. Go figure no easy fix for Danny :(. Thanks for checking on and praying for my Lil Man!!

Inpatient

It's tomorrow already, way past my bedtime.....yet I'm wide awake. Today or should i say yesterday, has been a whirlwind of a day, one would think I'd be past out with exhaustion. Except my anxiety is HIGH and I can't put my brain in park. So here I am, writing to all of you.   I write to you from our old stomping grounds at CHOW in rm #513.  Today I had to raise the white flag, except defeat and leave our home ICU for here. I sit here listening the the ongoing beeping of the monitors of my Lil Mans heart rate with the changing tones ... Wondering if  this admission is going to be an easy fix or an "extended" stay. At this moment it's hard stay.  Danny is in a tail spin, hes a down right mess.  Danny just hasn't been able to regroup and catch a break since his rod surgery. If feel so bad for him.  Hes having a hard time once again respiratory wise.  I brought him in to see Dr Kasper on Wed as his secretions turned to a yellow/ green color and it was very thick, his right ear was bleeding and draining some pretty gross goo, and i knew something wasn't quite right as Danny had been sleeping more n more over the last few days. The X-ray had shown at that time an atelectesis in the right lower lobe. Thats very disheartening as the nurses and myself have been working so VERY hard at Danny's air way clearance. It's so disappointing to work at doing all the right things and they still don't work. Dr K did a panel of labs while we were there and Danny's platelets were low and PTT was high, but everything else came back good. This morning I ran another set of labs to the clinic so they could recheck Danny's platelets and they continued to drop. So with all the strange things going on with Danny, Dr K and Palliatie care thought it be a good idea to come to the BIG house and have Danny tuned up. Since here,in the ER , they redid his labs and Danny's platelets are still dropping, his BP is still low,his temp went down to 91 and we still have no real answer as to why.   They also drew a bicarbonate level and that was very high (at 68) so its obviouse Puff needs some serious adjusting.   Things right now are still up on the air, but I'm hopeful tomorrow will be a better day, and we'll start putting the pieces of the Danny puzzle together. I will post later, as for now I should really try and get some sleep. Thanks for stopping in to check on us

Surprise!

We managed to get a break from the hot n humid weather for a couple days, but it's now back.  It might as well be 40 below as we are cooped up inside anyways.  At least we don't have to bundle up to go outside, lol.  In a way I'm glad with weather has been unbearable lately because then I don't feel "AS" bad that Danny hasn't been able to go outside.  Even if he was well enough he wouldn't be able to go out with the weather that it has been.  Danny is still slow n steady on the recovery front.  He's still having respiratory issues, but his surgery site is and always has been fantastic.  His incisions are all healed up and he didn't have any problems with the actual surgery ~ YAY!  It's what the anesthesia does to his system that just kicks his BUTT.  We went to CHOW 2 weeks ago just for a post op and they were concerned that he was on the vent and still having breathing issues so we went ahead and had xrays done.  SURPRISE!  Pneumonia in the right lung, really??  Despite our diligent schedule of respiratory therapies he still got pneumonia.  AHHHH!  Mind you he was only under for 30-45 minutes :(  so doing bigger, longer surgeries just scare the hell out of me.  The next one on his scheduled is for January, not only is it for a lengthening but also Danny's baclofen pump will be replaced as the battery life is running out.  This will be HUGE on his body.  I don't want to think about it as it's months down the road, but it's hard not to wonder what it will be in store for him/us after that surgery seeing he is 4 weeks out post op for JUST a rod lengthening and he is still depending on Puff.  SIGH!!  I have had many heart to heart conversations the last few weeks with Danny's nurses and Dr's to gain a better quality of life for Danny.  The last year has been very difficult on him with all the illnesses he has had and then throwing at least 2 surgeries a year for the rod lengthening.....it's just too much.  I've voiced my opinion to Palliative Care, Dr. Kasper, and Ortho so now we all need to sit down and get a better game plan with whats in the best interest of Danny.  Man I hate these conversations, as there is always things said that's hard for a mother to hear, but it needs to be done to maintain a better quality of life and so we are ALL on the same page. I suppose I've grown callous in the years to many of the statements/comments towards Danny and his "abilities" to fight and indure, but as I always have said.....My PROMISE to him is and always has been ~ As long as he continues to fight I will continue to fight for him!!  As long as HE is still there, I will do EVERYTHING in my power to help him.  There is always the FINE line that us families dance between with being selfish and being selfless with our kiddos.  I hope n pray I always have the right path in my mind, but it can be so easy to follow the wrong one.

 I found myself using the excuse to not go places lately as Puff has been around, but I need to stop being so BLAH as Puff is portable and just except the fact that this is going to be a "New" normal for us.  Good thing we have the wheelie bars on, lol.  I've tried to "Dress" puff up alil and put some key chain stuffed animals on it to make it alil more "fun".  It's bad enough people just see the equipment and the chair.........

And not this Sassy handsome face :)  Their loss as he's one amazing boy that everyone/anyone he meets should be privileged.  This lil boy has been through so much and endured so much then any "normal" person and he still fights.  He's a HERO in my book!!

 I had a friend on FB post the other day that gave me that "ah ha" moment and reminded me of feelings/thoughts lost.  I don't remember it word for word...damn MS (at least I have an excuse, lol)  but here's my version.  I can only hope it helps someone else too.......Looking at boys Danny's age and feeling bad or guilty that he can NOT do what they can is something I (and I think most of the SN world) deals with from time to time.  But Danny is doing what Danny does and knows best (and he's damn good at it) and he is happy and content, so I should be happy and content that my lil Hero is being ALL HE CAN BE!  I LOVE YOU LIL MAN!

Avrianna is having a great time this summer in diving.  She managed to FINALLY get the 1.5 down on the board.  I knew she could do it!!  Way to GO "A"!!

 A few weeks ago Dan and I surprised her with an airplane ride.  It was SO COOL!!  She's been on a BIG plane before when she was wee lil and of course doesn't remember it, so she's been asking to go on a plane. I told her we were going to "Church" and she found herself in an airport, lol.  We took a ride to Shawano (about a 30-45 min ride) had breakfast and came back.

 Very excited and nervous :)  ~ Dan or Avrianna ??  BOTH!!

 Checking out the scenery ~ it was beautiful and amazing

 We flew over Aunt Brenda house in Medina

 Our Pilot ~ he was wonderful.  We'll definitely be looking him up again

 We flew over Nanny n Chuck's house in Fremont on the River

 And of course we had to check out our place :)

Avrianna hung out last weekend with Aunt Brenda n family on the water and had a blast.  Here she is with my step brother Mike riding on the jet ski.  Want to guess what she wants now.....LOL....  Go visit Nanny n Aunt Brenda more :)

 With the heat and staying inside more I've gotten my sewing out again.  Here's the new bag I made "A".  I think I might have to make myself one now.  It turned out pretty good, if I do say so myself 

 Thankfully these teeth were loose, she pulled them both out one right after the other.  Geez "A" if you're that bored......find a different hobby, LOL

 Now the guinea pigs have an outside playground.....with their own watch dogs, lol

Tuesday Dan and I went and picked my new car.  Dan bought me a 2004 Ford Mustang Cobra convertible  in Competition orange.  This car is 1 of only 72 made in this color and body style.....he says it's rare and collectible like ME, aweeeeee.  And look it's MS orange :)

I've always wanted a convertible mustang, but when I went out to get one......I found out I was pregnant with   "A" and got a Mini van instead.  So Dan thought it was be nice to Surprise me with it.  SO COOL!!  It's a 6 speed manual and it's AWESOME!!  I'm glad I can still drive it.  The weakness in my legs makes it alil harder to drive a stick, but I'll keep driving it till I CAN'T no more.  

 Driving it has made me alot more aware of my speed limit as I really can't "blend" very well in an orange cobra, LOL.  It's definitely a head turner :)

Look what I caught yesterday in the yard.  SO BEAUTIFUL!  We watched it for alil while before we let it go.

 The garden is just LOVING this weather.  We should have a wonderful harvest this year.  Dan went alil nuts with Zucchini (I think there is 7 plants in there) so ideas would be appreciated on what to do with it.

Well thanks for stopping by the checking on us!!  We hope you are having a safe and wonderful summer.

Baby it's HOT outside !!

Last week was Brutal around here with the heat n humidity.  I'm SO VERY THANKFUL for a/c!!  The pool isn't even cool as the water temp as reached 94 degrees.  The kids say it's refreshing, but I beg to differ.  Indoors for me :)

I wanted to see how hot it gets in the sun ~ I actually got up to 114.8 one day :(

With the heat there have been some pretty intense storms that just pop out of no where ~ On Monday I was suppose to play volleyball (as a sub) in this uncomfortable heat, but much to my delight as we pulled into the parking lot it just down poured and hailed...YAY ~ no volleyball for me :)

The Rainbows have been AMAZING.  This is taken on our way home and just beyond the trees where the rainbow goes down....that's where our house is.  How cool is that!

Looking out my backyard at the wall cloud coming our way ~

Finally the humidity and heat broke last night for awhile!  It should be more comfortable outside now.  I hope it lasts.  That heat just isn't healthy,

What else is there to due in this heat but ..... recover from surgery, right?  Well that's what Danny has been doing.  It's been a ROCKY week post op, but I think he's finally on the road to improving.
 Every 6 months the surgeon goes into the same spot and lengthens the rods in his back (grows Danny taller, ahhhhh stop).
This is day 2 post op ~ looking good (the redness around the incisions is glue, don't be alarmed....they really need to find a better color, geez)

Day 5 post op ~ the swelling and redness is going down alot

Danny started to 3rd space (retain all fluids) and he gained 3 lbs in a matter of 1.5 days and become VERY puffy.  Even his poor eye lids were swollen :(  Thankfully today he started dumping his fluids, on his own.  I'm sure the pressure and discomfort from all the extra fluid has been one of the sources to some of his troubles this week.

Once again Dr Kasper has been our "attending" while at home for recovery.  He is our ROCK!!  I don't know what we would do without his support, knowledge, and concern for our Lil Man.  He continues to go above and beyond the call of duty ~ and we are FOREVER indebted to him.  He has such a special place in my family's hearts.

The 4th of July was definitely a different one for us.  We normally are Up North for the 4th, but with Danny's recovery and the heat.....it played out much different.
We still managed to be in the spirit of the Holiday :)

Danny did what he's been doing best.....he slept the day away :)

Avrianna and I braved the heat for about 2 hrs and I took her to the Community fest at Riverside Park.  OMG was it hot!!

We tried to cool off by putting our feet in the water while watching the water ski show :)

We were able to see some of the fireworks that were being set off around our home.  So it all worked out.  As long as we were all together I really didn't care where we were.  Avrianna enjoyed watching the Lil Firework show I put on in the driveway and then we were off to bed, back in the comforts of our a/c..
I hope you all had a SAFE and Happy 4th of July!