Sleep Study

We were able to bust out of CHOW Saturday morning around 10:15. So it's been a bit chaotic around here, so sorry for not updating.Friday was a very low key day as we sat around and waited for the sleep lab to call Danny down to start his study. We went down around 8pm and he got prep'd for the study. I'm not sure about you but there is no way I would be able to sleep with all this jazz on me. Danny slept right through all the commotion. And commotion there was....seeing we were not on the floor for the study his nurse had to come down with his feed, meds, and she wanted to flush n cap off the Med port. Meds were given, feeds were started and the Port was .................PLUGGED! UGH!! I guess when the IV fluids were stopped in the am it was never flushed with heparin. So his nurse had to go back up stairs to figure out what was going to be done. The CVL team stated the port NEEDED to be functioning even if we weren't using it because they needed to find out if the clog was in the line or the port. Luckily the TPA worked in the line OR he was going to get reaccessed. If that didn't work....they said they would have had to put in a whole new med port. OMG that would have been awful. THANKFULLY it all worked out. By the time we were done farting around with him in the room the study really should have gotten some go results from about 10:30 till 2am, as this is when he decided he needed to get up. GO FIGURE! They poked his finger for a blood gas at 5:30am and back upstairs we went to wait till rounds and the ok to leave. We were on the road around 10:15am and in the door around noon. Ahhhhhh! We were both exhausted but I still had alot to do. Unpacking, waiting for the DME to get here with supplies, and everything else...heehee. Of course the supplies that my DME supplier wasn't compatible with everything SO.............we have done some tweaking. The first nite wasn't the easiest as vent alarms were going off through the nite. Puff and I have a love hate relationship....it's making it really easy to love to hate it. But by Sunday nite it wasn't too bad. See you can teach an old dog new tricks :)
This afternoon a certain Lil Man scared the H%!! out of me, Gail, and Dr Kasper. I guess the new BP med had finally hit his system and ..............NOT SO GOOD! He was very pale, wouldn't arouse, low BP, and heart rate was 26!! HOLY $H!T!! NOT COOL!! I called Dr K up and we agreed to hold the med for right now and keep a close eye out on Danny. I think we all had to change our shorts after that lil stunt!! 5 hours later Danny is up in his chair awake and smiling ~ ROTTEN I tell ya, just plain out SASSY. I swear he just shaved a few years off my lifespan today. Thankfully he seems to be doing well right now. BUT man, just reminds me how fast things can go down hill.

I am still awaiting to hear how the study went and if there needs to be any changes. My gut says we will need to change his trache to a cuffed one as there is a HUGE leak out of his nose, mouth and under his trache. The study will tell!
Thanks again for checking in on us :)

End Tidal

END TIDAL............this has become a word that I don't think I'm going to like :(. All night long, last night, the RT's were chasing a good end tidal -which means CO2 levels. Last nite we had many peeps partying in Danny's room......unfortunately Danny wasn't awake till 1am joining us. Danny didn't fight "Puff" (my name his vent, lol), which I really had thought Thayer was going to be an issue. Oh no on the contrary Danny "rode" puff more comfortably, at times, the I would have liked. Puff is set to breathe for Danny 8 times per minute in addition to him being to breathe "over" Puff (breathe on his own), but Danny liked to let Puff do all the work some times. So finding a happy medium between them, TRICKY. This morning Dannys CO2 levels were on the high side....go figure as the RT's got sick of figuring out so they removed the sensor/monitor sometime through the nite. The blood gas that was done showed he still wasn't venting well. Once the day RT's came in and checked what settings he was on they figured out why his end tidal was off.....the settings were decreased instead increased during the nite which then was not giving Danny the full breath he needed, ugh. Seeing Danny didn't sleep the best he took a nap right away in the am so they were able to play with the settings (by someone who knew what the heck they were doing this time), and it looks as if we might have a better nite tonite then last. My big concern this morning in addition to his end tidal was the fact he was having mucus plug after mucus plug which continued throughout the day. I believe it is the humidity or lack there of but the Pulmnology Dr believes Puff is pulling the crap that has settled in his lungs out. Not sure on that theory as Danny does so much pulmonary toiletry - heeehee - twice a day that you'd think some of this would have been seen or at least heard before??
I found out a better time frame Danny was going to go into the OR today for ear tubes and of course it was during my appt to get my MS infusion in a different hospital, sigh. I have NEVER not been here for Danny during any procedure ... And I wasn't going to let that happen today (without trying). I called the other hospital to see of they had an opening and lucky me, they did. I ran right over as Danny was still napping and he had 2 nurses, our great RT, and my good friend looking after him. Wonderful!!! I was done and back before anything took place....well surgery related. I guess Danny really liked Puff's new settings, on his nap, and when he was taken off, when he awoke, breathing was a priority. The belief is because Danny has been breathing like this for so log his brain is used to it and when Puff was breathing "normally" with a "normal" end tidal it took his drive to breathe away......about 5 minutes later he kicked started and was breathing on his own. YIKES!! Needless to say the settings were changed again to maintain a Lil higher end tidal so he breathes on his own when he's not on Puff.
ENT was able to put Danny's right ear tube back in and readjust the left. Get this the O.R. Came up to Danny's room and did the procedure there. Only Danny....as I always say about him AND his father....that's right I'm Dan Osero! What a great crew they were, and they we so nice - loved them!! I wish I could post pics on here but on the CHOW wifi I'm restricted, but those of you that follow us on Facebook you can see pictures on there.
Here's to a better evening. Good nite n sweet dreams from Danny n I. Thanks for stopping by to check on us

Whirlwind kinda day

Our day started off going to see Danny's neurologist. I had some anxiety going there, Not only because we were going to talk about Danny's "episodes" but also the appt was at the hospital where Danny was born. Eeeeek! I have issues just driving by there and now I had to go INSIDE. Thankfully Danny's nurse was with so she could help ease my nerves -I think I did pretty good :). It is believed that due to Danny's brain damage and where the damage is located his autonomic functions are not functioning properly and he's having dysautonomia "storms". He just can't control the adrenaline overload that happens when these storms come on. Hence why he has this fight for life actions, holds his breath, heart rate increases, sweats, extreme nystigmas with his eyes. I sent his neurologist a video of his storm (episode) and he described it as "impressive" ..... Um I guess that's not good in the medical language :(. The concern is that his heart will go into an arithmia or he'll forget to breathe, or .......... Let's not go there! Dysautonomia has no treatment and it's a progressive disorder, so wer are going to try and suppress the storms the best we can without compromising what "normal" functions he has. We are going to "try" him on a beta blocker med and see how Danny reacts to it. The only concern there is it will drop his already low B/P even lower AND it will counter act the albuterol if he should need to use it. Thankfully we don't use albuterol often and he is not on it now so we are going to give this new med a whirl and Danny will be the deciding factor if it works or not. Thankfully we are In the hospital to try it out JUST in case Danny throws us a curve ball - which leads us to the rest of the day.
The time has come..............to bring the vent on board. A step I knew was always in Dannys future ....I was just hoping to put it off for a longer time, but as always it's in the best interest of Danny. Which also ties into the dyautonomia .... His Automatic funtions are not doing what its suppose to do He just doesn't regulate well when sleeping and will tend to "pause" his breathes while sleeping. With having 3 respiratory illness just this summer and his labs going haywire now we are putting Danny on the vent. Right now it will be on only at nite and when we sleeps. I hope n pray it stays that way for a VERY VERY LONG time!
It was so weird coming into CHOW "healthy" .... We usually come to the floor via ambulance or O.R. that I didn't even know where the admitting office was - LOL. We unfortunately did not get on the floor we would have like to, but we have framiliar faces here too. It's that this floor AND this room doesn't hold the best memories for us. It's where he was back in the summer of '09 for 75 days straight. YIKES!!
In true Danny form he is being SASSY since we've been in the room and hooked up to monitors because he's been setting the alarms off left n right. Danny you are NOT sick, KNOCK it off!!! So awake, but drousy, he is on oxygen, grrrrr. I AM going home Saturday MIster and you'd better shape up. I cant wait till they put the vent on him later..... can you say alarming party in Danny's room tonight - anyone want to join us??
Tomorrow the ENT is going to put ear tubes back in Dannys ears .... Seeing we are here and he has fluid behind the right drum and with being on a vent that potentially could be very discomforting. BUT my dilemma is I am going to be gone for my MS infusion tomorrow for aprrox 3hrs ..... I've never NOT been there for him during a procedure so I hope and pray it works out that I will be here when he goes down to the O.R. Its so wonderful that the ENT can make room for him, but........... Thankfully my good friend will checking in on him while I'm gone so I can relax alil about it.
I think I'm going to HAVE to run next door to Froedert and get me some Ice Cream tonight :). Please pray for an easy transition for my Lil Man and the vent. I am geared for the worst and hoping for the best.
Stayed tuned............

Back to the "Schedule"

Well school is back in session and we are adjusting to our busy schedules of therapies, swim, school, and programs. I am very excited to see what great things this year is going to bring to the Osero Household. Both kids have great teachers/therapist....and of course Mom, heehee.

The kids School Pictures this year! WOW ~ did they grow up

Yesterday Danny had a WONDERFUL day with PT Peter. Here is a video of my Lil Man working so hard. Not only is he standing tall in his stander, he's holding and moving his head, tracking things, swallowing right, following what we ask of him to do, and trying to communicate....some may not see the BIG picture and think this to be nothing much, but this was a GREAT day for Danny :)

Here's alil video of Avrianna and her friends....Jammin away to Wii Dance. You can't help but smile watching them. They LOVE the Wii!!

It's that time of year and once again Dan is out hunting trying to find that Big score.....after 8 yrs of waiting for a bear license in WI he has his opportunity to get a Bear. Here is the HUGE beast that has been hanging around his stand. I told him he'd better be a good shot, cuz he's going to be an appetizer to this thing. AMAZING!! and Crazy that he wants to go in the woods when this Teddy Bear is there....NO WAY!

Last nite The Fox Valley Wave Swim started for the season. We are back in the swim of things. She will be swimming 4 days a week for 75 minutes and she will be participating in 6 different swim Meets throughout WI between Nov - Feb (Meets usually consist of Sat & Sun and being in the water by 8am -about 11)

We FINALLY got a watermelon ripe. We JUST picked this 2 days ago ~ this is the 3rd one we've picked but the first one that was ripe enough to eat. Not sure we are going to do Watermelons again. BUT boy is it delicious!!

Our Tomato canning stash from this years harvest.....BUT a mental note IS ~ Do NOT trust Dan's sense of "heat" as ALL OF THESE ARE TOO HOT for us to eat. The recipe has now been rewritten and there will be NO MORE crushed red peppers put in. YIKES!!

It's a good thing that we harvested everything out of our garden....this morning there was frost as the temps were in the low 30's last nite. Um BRrrrrrrrrr ~ I'm not ready for this!!

Next week is going to be a busy one medically ~ per say....
First we have an appt to see Danny Neurologist and talk about what's been going on with Danny. He's FOREVER changing his neuroligical status and with the last EEG showing no active seizure activity during these episodes we have to figure out what's going on during these and see if they are causing more damage and/or if they can be treated. My gut says not so many good things are happening with him as they are coming on more frequently and intense :( Despite his smile and laugh these are NOT FUN! More poor bug ~ even the neurologist stated how heartbreaking it was to watch Danny in this video ;(

Straight from that appt is down to CHOW for a 4 day stay to get him set up on the vent. So Dan will be on Avrianna duty....god help him ~ LOL. I'm anxious about the vent, I'm not going to lie. I'm all for helping Danny's and giving him a better quality of life, but it's just scary step and I'm sure it's going to be very frustrating to get the vent to play nice with Danny. NOTHING goes smoothly so I'm already anticipating a struggle :( But we will get through this too, one day at a time, I'm sure of it!
Thanks for stopping by and checking on us!!

Where were YOU the day the WORLD STOPPED TURNING

Well it was 3 DAYS after our wedding day. I was working at KD Auto Glass in Oshkosh, WI, I ran the office there. In the waiting room which was separated between a piece of glass I always had the TV on so I saw it from the beginning of the footage on the news. I called Dan at work to have him turn on a TV and watch what was unfolding before my and the rest of America's eyes. Within minutes Dan was at the front door of my office and we watched the second plane hit the second tower together....In total disbelief of what we were seeing.....Could this really be happening? Not much was accomplished that day....it's like everything froze in time. Some of the out of town Family members were stuck at our place as their flights were cancelled and they were in a forever limbo NOT knowing what was going to happen
We were to be leaving for our honeymoon in a couple of days, BUT with the flights out they could NOT guarantee we would be in Miami in time to get to our cruise. The cruise lines were still running full tilt and were NOT offering refunds as 9/11 hadn't effected their industry. So I called my grandparents and asked them to help Dan and I drive down to Florida so we could make our cruise on time. They resheduled their lives for 2 weeks and drove us down and back home. They have a condo down there so they stayed there while we were on our honeymoon. I remember my mother being SO scared and not wanting us to go, as she thought that possibly the cruise lines would be another target. Regardless of her fears we went and had a wonderful time..... on the ship you had this feeling of "safe and normal" once again, even if it was for just a little while.
I will NEVER forget!! For the husband who told his wife he loved her before his plane went down. For the wife who stopped in the stairs to call her husband to say she will love him forever. For the mothers and fathers who kissed their kids goodbye that morning for the last time. For the policemen, firemen, and other rescue workers who rushed in to help others and lost their lives. For the soldiers who fought back and made the ultimate sacrifice. Today, tomorrow, ten years from now, we will remember ♥
My favorite song of all time........Thank YOU to the men and women that fight to make our country the way it is today.....Our freedom DOESN'T come free there is an ultimate cost that I will be FOREVER thankful for

Make A Wish Walk

Yesterday Sept 10th was the Make A Wish Walk in our local area. What a BEAUTIFUL day it was not only for a walk, but to walk for a GREAT foundation. My team, My New DreaMS, was able to collect $716 this year. THANKS to ALL that helped with Making A Wish come true to these wonderful kids!!

I LOVE these two SO VERY MUCH!

We met up with our friends the Balogh's ~ THE WISH KIDS

The Whole Crew(ps..Danny was in the middle of one of his episodes that puts him in a laughing fit afterwards so I took advantage...I know I'm awful, but look at the smile. It makes them worth it to see him smile ~ sigh)

We walked through the grounds of Thrivent Financial once again. What an amazing area

We were excited to have met this special Lil guy Charlie. We've been following him for a while now on his progress and it was a pleasure to be able to meet him in person. Thanks Charlie for being interested in Danny and allowing us to have your picture taken with him.

There were approximately 300 runners/walkers there. How inspiring to see :) There was one family that through the years of donations has donated over $100,000.00, and another over $25,000.00 ~ WOW! Our goal has just been elevated ~ hoping to increase our donations next year and the years to follow ~ until next year!!

Thanks again for participating in Making A Wish Come True ~

Mattman

Our very dear friend passed away yesterday morning @ 3:37am in the loving arms of both his parents.

Matthew Ray Eakins 8-31-06 ~ 9-6-11

I'm just in shock and deeply saddened that he had to leave us so soon. I hope he is flying high, running around, eating as much as he can, talking up a storm (like his awesome Momma) and causing tons of trouble. He didn't get the nickname Rottenpants for nothing ~ LOL

My family and I were very proud and blessed to have met him. He was a wonderful Little Man that touched our hearts unlike no other. Please HUG your little ones alil harder and alil longer......life IS short and you never know what tomorrow will bring.

Live LIFE to the fullest as if it was your last day and have NO regrets!

WE LOVE YOU MATTMAN our hearts are broken and you WILL BE MISSED!! Fly High sweet boy FLY HIGH!!

Enjoy some of the pictures of Mattman ~

Matt brought his family to our place in Dec '10 to be our special guest at Danny's birthday party ~ what a great time. Then they got stuck here due to a nasty blizzard.....yay more days with Matt.

Double trouble!! Mattman met us at the St Louis Science Center this summer on our vacation ~

Mattman and his awesome Momma ~ Heather!

Our thoughts and prayers will be with the Eakin family ~ May they find peace

4th GRADE!!

Today was Avrianna's first day of 4th Grade! Wow where does the time go!

Up early and excited for her first day....she was ready. There was a little anxiety with getting the new teacher but after meeting Mrs Froehlich at the Open House all the uneasy was wiped away.

Mrs Froehlich and Avrianna

Mrs Renning ~ Principle of Lakeview

I hope for exciting new things this year :)
Looking so professional and grown up!

Waiting patiently for the day to begin.....
And she was off.................
I was waiting patiently at the front door for her to return to tell me all the wonderful things that happened on her first day............................for her to walk in the door in tears. OH NO!! Well school went great, BUT it all took a back burner to the school bus ride home. UGH!! The bus driver isn't the nicest from what I'm hearing from other friends.....but she missed Avrianna's stop and went around the block and when Avrianna was telling her where the stop is, the bus driver argued with her and dropped her off down the road not even at a stop. Avrianna told her that wasn't her stop but proceeded to make her walk home. Needless to say Avrianna was very upset about it all....and so IS MOM. I got on the phone right away with the depot to find out what was going on, for them to argue with me, WTH. You've picked the wrong Mom on the wrong DAY to argue with. He told me that it could be because the district changed the drop off, um excuse me you drop children off at a different stop WITHOUT telling the parents....UNACCEPTABLE. He checked and found out the stop is in the regular spot so what was this drivers issue? I am and will continue to be on top of this ... I'm hoping things/attitudes change or Avrianna WILL NOT be on the bus any longer!! I don't need to worry if my kid will be dropped off in the right place because this bus driver has attitude. On the first day NOT a good impression!!!!

Danny will be starting his 2nd grade year soon...once the team is put together they will contact me and we can set up a schedule for them to come out to the house. Danny will be having a new Teacher this year too, and we can't wait to see what new and exciting ideas she has. He will have the some OT, ST, and vision therapist which is great as Danny tends to take awhile to warm up to new people. Unfortunately Neenah hasn't hired a PT yet so we'll have to wait and see. We have alot of fun stuff, to show them, with what Danny has been working on over the summer :)

Here's Danny working hard with his Private PT Peter :)

My new hobby ~ sewing!! I'm making covers for Danny's wheel chair and "hub caps">and a handbag for AvriannaNot too shabby for my first sewing experience....watch out Martha Stewart ~ LOL