Wednesday, November 23, 2011

UPs n Down's

So we had a challenging afternoon yesterday that is STILL going. Let me explain...
Seeing we were out of our "normal" when it comes to surgeries it was quite a whirlwind to get the staff to understand that Danny is NOT going to fall in ANY of their post surgical standards. After I talked with the surgeon about the procedure I figured it wouldn't be long until I got to see Danny's cheeks again, but this was all going to be new to me as we usually go straight up to the ICU room after surgery and we were going to be discharged the same day. This in itself is AMAZING as he's NEVER had day surgery be SAME DAY :) It was unusually long for them to call me back to see Danny in the OR recovery, as I found out they were waiting to wake up from the anesthetic to get me and then head up to the recovery holding area. That could be VERY LONG time ~ As I explained that the day before I gave him 1 does of Roxicet and didn't see the white of his eyes for almost 6 hours ~ and they just knocked him out for surgery so it wasn't likely they would see him awake. There was also a concern with Danny's low temperature, which was 92.9, so when I did see him there was a MOUND of blankets on him. "Um....whatcha doing? You warm him up to "normal" temps and your going to open a new can a worms. Please take those blankets off." Danny is normally around 94 degrees and he always comes back from the OR cooler. I know it's CRAZY, but this is were he's Danny's normal! As I was trying to ease the nurses fears of the unusual standards that Danny follows when thankfully the surgeon walked by and helped to reassure her that yes Mom is NOT off her rocker, lol. As the nurse reported off to the nurse that was going to watch him in recovery I over heard that there was 2 meds used in the OR room on Danny...ones that I have repetitively said shouldn't be used. **SIGH** Not to shoot the messenger or anything but the nurse knew I wasn't IMPRESSED. Really people Danny has had over 30 procedures done you'd think they would read up on the previous notes to know what they are dealing with. BUT NO!! Up in the recovery we hung out for a couple hours, chatted with the Palliative doctor and got our discharge papers around noon. Again AMAZING!! He finally did wake up while we were leaving the hospital and he did wonderful on the car ride home. He really did great through the wouldn't have even known he had surgery in the morning ~ WOW! BUT by the evening rolled around it became a different story. Why do the things start to go hay wire in the evening?? He started retching his slow rate of Pedialyte he was getting and the med volume set him over the edge :( By this morning I was hopping to try to keep up with all that he needed. The ventilator over the night was a pain in the @$$, I believe it's due to the heater settings in addition to the tubing size. It was spitting and sputtering water about every hour, which meant I was UP "playing" with the alarms. So I took care of that, luckily I still had the "old" vent here, I hooked it back up and put that back on him. No MORE alarms in the rest of the night....with the vent. He's continued to wretch with his attempts on feeds and meds. He has a fever now which has kicked him seizures in. It's obvious he has another post surgical ileus that we'll have to work him through, I'm hoping we can slowly work his feeds of Pedialyte up that will help his GI tract out, if not that means starting IV fluids. Thankfully he is a GREAT healer, as his incision look phenomenal .... now if we can only get his system to NOT over react when having surgery.
So even though we are home it hasn't been an easy ride, but we are HOME and for that I am thankful. Thankful that I can spend Thanksgiving this year in the comforts of my own home with BOTH my kids. Dan has the turkey soaking to go in the smoker tomorrow and I can't wait. It's going to be a very low key and quiet holiday here at the Osero's as it's just going to be us four, we don't have anyone coming over and we're not traveling. It's going to be GREAT hanging out in our comfies snacking on leftover turkey. Then Bring on the decorations and Christmas music....NO BLACK FRIDAY shopping for us. It's going to be a day full of - holiday cheer and maybe a few Holiday Hot toddies :)
Happy Thanksgiving !

Tuesday, November 22, 2011

Rod lengthening

What a day so far for us. I woke up at 3:20am, 10 mins before my alarm clock was to go off....what's up with that?? Thankfully I did as I heard the water sloshing around in Danny's vent tubing and then I noticed the "new" heater setting was too high. Which ment Danny's trachea was dry :(. His ts were low and heart rate high, really? Today? Really!?! I went into high gear, well as high gear as one can at 3 in the morning, and started back to back breathing treatments for the next 45 mins. That seemed to help. So we hit the road at 4:30 headed for CHOW. The roads were like ghost towns until about 5:30 and it was like a switch turn on and the roads were alive with vehicles, amazing how many are on the go that early. We got to CHOW and waited awhile as the day surgery was packed! Danny was pretty "upset" with a high BP, red, shaking, and his resp was fast so he was either in pain (I couldn't give him any pain meds) or he was aware of where he was this early in the AM and pissed off. Thankfully the versed helped calm him down :). The nurses were able to access his med port on the first try, which help ease some of my anxiety, phew! They rolled Danny into the OR at 8am and they thought I would be able to see his handsome face again in about 1-1.5 hours. I went down to Cafe West to induldge myself In a Large Minty Mocha, found myself and reasonably comfy couch, and now I sit and wait for the phone to ring at the receptionist's desk and for her to call out "parent for Daniel Osero". Dr Tassone said as long as everything goes well in the OR AND Danny behaves himself the "plan" is we get to go home yet today. How cool would that be we can sleep in. Our own beds tonight.

9:08. - he's DONE and things went great. The rods were grown out another 1.5". OMG, you are going to be so tall!!! He's already waking up and the plain is as long as I think his good ..... WE ARE OUT of here!!! Amazing:). I will keep you posted

Monday, November 21, 2011

What we've been up too

Sorry I've been slacking on the blog entries......
Danny's cultures finally grew back moderate staph and 2 strains of Psuedomonas. But the results didn't come soon enough to wait it out before putting him on antibiotics as he was getting more uncomfortable and unstable. We went into see Dr Kasper, as Danny was continuing to get ickier, to do more tests and xrays. Once we (Gail) were able to access the med port to run labs we were off to Xrays to check out his lungs seeing he was hanging on the vent longer in the mornings. The xrays looked good to me, but Dr K kept studying them....hmmmm? After a second round of xrays, he told me what he was looking at. Danny's rods seem to be sitting NOT properly on his pelvis. ARE YOU KIDDING ME?? Once again, it seems as if, my son is growing like a weed and there is now a very large gap from the rod to his pelvis. Which is amazing to us on how the rods are still attached, sigh. I'm hoping that the issue is only because he's grown and there is nothing more concerning going on. His xrays were sent down to Dr Tassone and Danny is now scheduled for surgery tomorrow am for a rod lengthening. I will know more tomorrow after surgery as to why this has happened. Good thing is Danny is due for a rod lengthening anyways, right? It's a good thing is is going in, as this last weekend was a tough one for Danny on pain. Not only did we find out the rods were/are an issue Dr Kasper found out another issue Danny was having. I think Dr K should have a degree in investigation he also (by mistake) found that Danny has been lacking zinc in his diet. Which potentially could be the cause of Danny's nail & GI issues. We are still waiting for some of the stool labs to come back to see if he has Crohn's or Colitis as his Protein loosing numbers were high, but I'm hoping it's just because he has not had zinc in his diet along with his latest bought of illness. We'll see ~
Here's my Lil Man chillaxing on the couch with Gail. Gail where is your lap? ~ LOL
This last weekend Avrianna had a great swim meet in Oshkosh.
She improved her times 7 out of 8 of her events. Here is the start of her "Best Time" tattoos :) her arm was FULL of them by the end of the Event.
I am SO PROUD of her :)
At the event she was able to meet up with 2 Olympic Swimmers ~ How Cool is that. I told "A" this could be her some day. Sitting in a swim meet encouraging younger swimmers and people wanting her autograph.
Very Exciting he got their autographs on her Swim Backpack :)
I will keep you posted on how tomorrow goes.
Thanks for stopping by to check on us!

Wednesday, November 9, 2011


What came first The Chicken or The Egg ???
This is what we are figuring out with Danny. His system is all out of whack at the moment....Totally OUT OF WHACK! He's acquired an ear infection, tracheitis/infection, major diarrhea, and his dysautonomia storms are in full swing. Is each one their own issue or are they related? Is one driving the other? It's a heart wrenching process to figure out what is wrong with Danny...Where does it hurt? What can I do? Just breaks my heart knowing that something is ailing him and he can't tell me where it is. So it's up to me to I SPY it as easily and quickly as I can so we can treat him. My favorite is that Danny doesn't follow the "true rule" to things so it makes this Hide n Seek game a little stressful. Then to figure out WHAT issue is THE issue? Are these other ailments because of this main problem or do they need individual attention.
The ENT cultured his trachea yesterday, when we had to drive down to CHOW spare of the moment, because the stoma is swollen, red and draining some blood. No one here wanted to pull out his trache for his trache change as we were afraid we wouldn't be able to get it back in. So while we were down in CHOW the ENT changed it out for us, SO NICE! I'm hoping the culture comes back soon as we're NOT treating the infection until we see what bug grows out. He's already a Pooping machine so to add antibiotics in the mix it better be the right one. We have cultured his watery stools today so we'll get an idea of what going on with his GI system too. Until we figure that out we're holding on his formula because he is just dumping whatever we put in him. Poor Bug :( I hate seeing him uncomfortable. So we'll wait.....impatiently!

Thursday, November 3, 2011


The weather and the trees have definitely changed since we left for Florida. Most of the trees are bare of their leaves and it's gotten chilly enough that there has been flurries seen here n there. NOT COOL! That really made it hard to return to Wisconsin weather when the weather in Florida was just perfect!
We got home early Sunday morning and LET the UNPACKING begin. AGAIN!! Making our decision to put the condo for sale .... less packing, unpacking, and cleaning. Let's see ~ we packed up the RV and cleaned the house to leave, then unpacked & cleaned up the RV, to put everything in the Condo after I cleaned it up from sitting empty so long, then we packed everything back up and put it in the RV and cleaned up the condo from living in it. Once home we packed up and cleaned the RV to unpack it all back in the house. I'm done with cleaning and packing! Once we are in the RV more we can pack it up, once we get to where we are going we can bump out the sides and that's IT! I really can't wait!!
Monday it was back to "normal" around here. I took Avrianna Trick R Treating in the evening and boy did she score the Candy, wow. She was Harry Potter this year (I wouldn't be surprised if she wants to be a "Blue Man" next year). We dressed up Danny in camouflage and his chair too :0)"HA HA ~ I SEE YOU BUT YOU CAN'T SEE ME"
Tuesday was a Milwaukee Day for Danny and for myself. First was Trache/Vent clinic for Danny. Lots of chit chatting about Danny and Puff. Danny hasn't been sleeping well at nights so we are trying to figure out if it's Danny being on Puff, his meds are not working well anymore, his dysautonomia (which going NUTS again), or Danny just being Danny. It's never an easy find with him. No Black n White he's ALL GREY! Danny also has a new trache that we are trying, as they Shiley cuffed trache was getting to be a problem. As you remember we needed to go to CHOW the day we left for Florida so the ENT could put in his cuffed trache because we couldn't at home. Then on Sunday during the next trache change I couldn't get the old trache out, YIKES! After 4 tries and alot of prayers it came out, but the stoma did start bleeding alil. He now has a Bivona TTS in which seems to be easier on him but the true test will be when we have to change the trache on Monday. Cross your fingers!! Then we talked about what needs to happen for us to change over to a new Home Medical Equipment supplier. Our old company just wasn't able to support everything Danny needed any longer so despite the relationships we have.....we are moving to a different company.
Once Danny was done we were off to the other side of Milwaukee to do my MS infusion. That went well other then it was LONG due to having to wait an addl 50 minutes to get the medicine made and up to the floor. I am trying to see if I can do my treatment back in the Fox Valley. I will still see the Neurologist in Waukesha every 6 months, but I would like to do my monthly treatments alil closer if I can. I am doing pretty well with my MS, I still have my good days and my bad. But they come n go instead of the bad ones sticking around. This colder weather seems to have chased my energy levels away just like the leaves but I'm hoping I can nip it in the bud and get more......ANYTHING! It's disappointing to look into the future AKA holidays and know there is so much stuff to do when I have no ambition.....NONE. I can't believe I am thinking of Danny's birthday celebrations and Holiday stuff. Bring it ON!!
This weekend is a busy weekend for Avrianna she has a Swim Meet in Howard Suamico both Saturday and Sunday. She needs to be in the water by 7am so it will be early days and early Nights around here. Thankfully it is daylight savings on this weekend and we get to fall behind....we gain an hour, YAY!!
Thanks for stopping by to check in on us! Now that we are up to date :) Hope you all are doing well.

Let the FUN begin!

The Loaded RV picked Danny and I up in Milwaukee, we ate some dinner before we left, and then on the road Florida bound we went. The ride down there was uneventful but's 27 hrs of driving time. So when we made it Universal Studios in the early afternoon on Saturday. I was ready to get out of the RV. The weather was amazing and the crowds in the park were even better. It was definitely NOT in season for the theme park as the parking lots were empty and the lines to the rides were short..if any. In areas it was like a ghost park :)
We went straight to The Wizarding World of Harry Potter once we got there. It looks AMAZING...just like in the movies. We toured the castle, rode the castle ride (graphic), bought some souvenirs, and drank some Butterbeer (YUMMY!). You can tell that The Wizarding World of Harry Potter is the drive right now to Universal Island. We saw more people in there then what we saw in the rest of the theme park :) But still the longest line for the castle ride was only about 40 minutes....and I don't think it really even took that long. We had a wonderful time!!

The singing frogs :) What a beautiful performance ~ lovely voices
As we were getting on the simulated ride they had the candles floating up in the ceiling :)
Dumbledore and other characters would show up through the castle. It looked like they were really there talking to us. ~ Tid Bit of information....the box in Dumbledore's office with the wand was the actual wand from the Movie ~
The pictures were actually "alive" and once you walked in they would talk to you. So COOL!
We headed to The Blue Man Group show after the park. Which we ALMOST didn't make it as I had the wrong time....and thankfully we saw the board right before it was to start so we busted butt and made it. OOPS! All I have to say about the show is ~ WOW!! We've already looked up when they are going to be performing in our area and YES we are going again :)
Avrianna was SO excited to see he left a blue hand print on her sweatshirt. This is now her favorite sweatshirt :)
My mini Blue "Men" ~ With a piece of the paper....oh the paper ~ LOL
Avrianna said Blue Man was the best part of our vacation.....even over Harry Potter (now that is something!)
After the show we were STARVING! Our plan for this day was to go to Emeril's, but with my mishap with timing we weren't able to go (homecoming was this evening and they were packed, busy) So went to an even better place, that fit us better Bubba Gump Shrimp! Woot Woot! My favorite movie is Forest Gump and to be able to go here was a treat for me. LOVED IT!! Food was great, drinks were better and of course I had passed the Forest Gump trivia that the waitress questioned us on. I've watched it 1000's of times. I definitely NEEDED to get some Bubba Gump souvenirs. Both kids got a T-shirt (Danny wore his to CHOW the other day and it got alot of attention .... Stupid Is AS Stupid Does) and then I got this license plate which I just HAD to HAVE!!
The next day we went to the Original Universal Studios Theme Park ~ Another great day for weather and lines....
Here are some fun pics through our park experience:
The Jaws Boat Ride
She really liked the Men in Black ride ~
"Mom who's Betty Boop?"
"Mom who's Lucy" ~ ok, seriously Am I that old? History lesson at Universal ~ LOL
Chillin out watch The Blue's Brothers perform.
Shrek in 4D ~ so cool!
Beetlejuice's Rock Concert ~ Dan didn't think he was going to have a good time, but to his amazement the music and show was good
Hold ON!!
Dorthy II from Twister :) ~ at the Twister simulated ride
It amazes me to think that in season this place is zig zagged with people. I don't do well with that, lol.Of course now that we've seen all this at Universal we have to watch the movies now. Avrianna never saw Twister so now she's seen that one. And she only saw one MIB movie so that's sitting on the end table to be watched soon. I am on a mission to find Beetlejuice so she can watch that one too :)
We tried to get on the ET ride on 2 different occasions for it to break down, thankfully not while we were on it. I chalked that up to someone telling me NOT to ride ET.....maybe next time.
From Universal we packed up in the RV and headed towards Kissimmee to Medieval Times for dinner and a show. How fun!
Our picture with the King
We ate our meal with NO utensils.....Everyone got the same thing Soup, garlic bread, potato, 1/2 chicken, ribs, and an apple turnover.....Oh the food was delicious.
We were cheering for the red knight :)
Avrianna was excited that she got the First Carnation thrown out into the crowd
Monday October 24th was Avrianan's 9th Birthday. She spent it poolside enjoying the wonderful weather.
She is very proud of her picture blanket I had made for herAnd we enjoyed GREAT Food ~ Our HAVE to STOP at restuarant when we are in FL now. Plus Aleana HAD to come to Pinchers before her flight the next day back to WI :)
The the seafood.......AMAZING!! What else is there to eat at a crab shack but CRAB!!
Sorry Gail, but it was FANTASTIC!! Maybe next time?
Avrianna isn't a seafood fan so we took he the next day to her FAVORITE.....for a Mac N Cheese pizza :)

This trip we made it to the Beach. We met up with one of our "special" families that actually live here in WI, but was on vacation down there at the same time. Here are some of our beach pics.
My beach Babes
We were busy this trip that is for sure. Not only with our activities but with all the packing, unpacking, cleaning.......repeat.....repeat......and repeat. Dan and I decided it was just too much work to keep the condo. So while we where down there we managed to clean out the condo and put it up for sale. It is an end of an era for us :( We will definitely miss the place and the space, BUT it will be nice to be able to use the RV more. We'll be coming back to the same area because we just LOVE it there, but now we'll just be in the RV.
Hope you enjoyed seeing our vacation. It's always nice to get out and go some where warm, but it's even better coming home.