Saturday, January 19, 2013

Recovering & Recap

Danny and I came home Monday the 14th around 3pm......6 days post op!! I couldn't have even imagined that we would have been home that soon or that he would be doing this well. Danny is doing amazing!! While at home he has needed some Ibuprofen more regularly as we are moving him and repositioning more but other then that there's been alot of smiles and alertness coming from him. It's so wonderful to see him like this....not just in general, but definitely right after major surgery. Everyone that sees him says how GOOD he looks and how much more alert n aware he is. I'm so glad it shows to others, and I'm not being just an overzealous Momma. I have my BOY back and better then ever!! I was so unsure that he would EVER be the boy that I knew he can be. He has been showing off his likes and dislikes more and I love it.  I just need to figure out what it is he is barking about and when we do he will smile as if to say ~ "Thank you." Danny was in a rough patch this last year as it seemed as if he was fading away. There wasn't much behind those baby blue eyes. I honestly didn't know what kind of quality of life was in his future and that scared me to know end. But to see him now after all that he has been through in the last 2 weeks I can honestly say he has the best quality of life ahead of him. And as I stated in my last post with significantly less time in the OR. YAY!! Danny is already tolerating all of his nutrition via G-tube, the only TPN needed for him was the few days between surgeries...and I'm not sure he really needed it, but I didn't want to push his gut as I'm used to it going into the deep sleep after anesthesia. NOT THIS TIME!! He is peeing like a champ ALL ON HIS OWN and will even have a BM all on his own too. Now that is something that is just unheard of for Danny unless he is on antibiotics. Can you tell him excited!! All good things have come from this chapter in his life. I guess I just need to prepare myself for the absolute worst and whala Danny goes and proves me wrong. I'LL TAKE IT!! I'll be the first to admit when I'm wrong and I'm so glad I was. Way to go Danny!!
Here are some of the photos taken during the last few weeks. Some of them are pretty graphic so brace yourself.
After VEPTR '12
After Back Fusion '13
**Xrays **
Before VEPTR '10
After VEPTR '12
After Fusion '13
Before surgery I had all of us wear our PROUD t-shirts and pose with Danny ;) ~  We are all VERY PROUD!!

 Ms Gail
 Ms Keren
Ms Aleana
Ms Lisa

The Morning of the Back Fusion..... ALL smiles.  I was so glad he was so healthy and strong, but man did it bother me that we were going to do this when he was in such a good place
 Heading down into the OR, sporting his fireman hospital gown and hat

 Ms Gail and my mom came down to sit with me while Danny was in the 10 hr surgery.  We went out to lunch to The Cheesecake Factory.  It was so nice to break up the day....PLUS we were able to have alil celebration for Ms Gail.  An early Birthday treat, YUMMY!
 Can you tell how impressed with me she was...that she was sung to, LOL
 The first time we saw his back.....a few minutes after coming up from the OR
 His poor face, lips, n tongue were extremely swollen from laying on his belly for 10 hrs during the surgery and with all the fluids they gave him everything pooled down to gravity.
 Ms Gail giving Danny a pep talk n a smoochie before they had to leave to go back home
 I had to wear my new tshirt.....It was definitely a hit!!  I got so many comments they day I wore it
 Day 2 post op and the swelling is going down and his eyes are open :)
 Post Op  day 3 and the swelling is gone and he's all smiles again ~ I'm so PROUD of him
 Look who's sitting in his chair already and loving it
 Ms Gail thought Danny had to have this monkey..........those EYES!!
 Nanny said he needed a superhero balloon as he is her Hero!
 On Friday afternoon he went back in the OR and about an hour later he was back in the room sporting a new and bigger baclofen pump
 First dressing change and first time I got to really see the surgery work op day 3 just after he came up from the OR for the pump.  We thought it would be nicer on Danny if we did it while he was still loopy from the OR.  We thought right!!
 Post Op day 1 from the pump and they took the dressing off already.  Looking good!!  Other then he got a blister right above his belly button.  I can only assume, as I wasn't there when they took the dressing off, is that they used the wrong adhesive remover and his blistered.  He will blister right infront of your eye immediately if you don't use the right one
 Post op day 5 and looking GREAT!
 Monday afternoon Post Op day 6 around 1:30 he was buckled up and ready to GO HOME!!
So comfy chillaxing in his OWN big boy bed :)
 Post Op day 11 and still a CHAMP!!  Most of his sterie strips are already off, his incisions are closed and most of them healed over already.  Really, Danny??  AMAZING!!
We are right back into reality, with last week finishing tons of paperwork and making appts.  I LOVE IT!!  Everyday Danny continues to get stronger, heal, and amaze us even more.  GO DANNY!!

We did have a mishap this last week.....with Avrianna.  At Dive practice on Thursday nite she hit the water pretty hard on her last dive.  She said she was pretty dizzy and her head hurt.  I guess it was a pretty impressive smack, I wasn't there to see it, but Dan was.  The next morning she continued to have a headache so I called our buddy Dr Kasper.  He felt she probably has a minor concussion, so she needed to take it easy the next 2 weeks as another minor head injury could result in major brain injury.  This normally wouldn't be an issue, BUT this Sunday is the ONE and ONLY dive meet that she was to attend and now she can't go.  She's pretty disappointed about it, but I keep telling here that there will be other meets.  I don't want to take any chances with her noggin,  So she's going hang out and chillax the next few days.

Thanks for stopping by!

Saturday, January 12, 2013

Baclofen pump replacement

Danny is now done with going back into the OR. This is something I can't even wrap my brain around. Here's a boy that has had aprrox 30 surgeries already in his lifetime and now there is NONE in sight. The only thing I can think of is replacing the baclofen pump again in six more years. Oh, what will we do with ourselves. I just can't fathom Danny not needing any more surgeries. How awesome is that?!? I do believe I will find better things to due with our time, then hanging out in the hospital. I'm just so excited!! Now NO ONE can tell Danny this, as I'm sure he'll find something to throw at us. Mums the word .... You hear me?! Yesterday's baclofen pump replacement was text book. In and out within about an hour. They went in through the old scar and popped the old pump out of the pocket it sat in. Seeing the catheter wasn't damaged or displaced during the spinal fusion they didn't need to monkey around with that. Which was great as if they were going to do anything with the catheter they would have had to reopen part of the fusion incision. EEEECK!!! The new pump is alil bigger then the old one. His last pump was held 20 and this one is the 40. It's just alil bigger in size but holds double the medicine. So they needed to cut the pocket open to allow more room for the bigger puck. They closed him up and he's now good to go for another 6 yrs. For alil boy that has 2 ver painful surgeries, you wouldn't know it. Today all he's had for pain control is 1 dose of Tylenol. Yes you heard me, AMAZING! He's been pretty wretchy today, which you think would be very painful as half of his tummy is opened up and his back is ...... Well there isn't much of it that doesn't have an incision across it. If you were to just see the body he's in pretty rough shape, but look at the boy you'll see something pretty astonishing. He continues to show off for the medical staff and to his mommy n daddy. I had really thought this was going to be a VERY VERY long haul not only in the hospital, but also the recovery time at home. Hell I wasn't sure I'd ever have the same Lil boy I know and love, after His body was abused like this. But he is showing off, don't tell him what he can and can't do. Really the only "problem" we have run into is his bowels, hence the bloated tummy and him being wretchy. The poor dude has gotten 3 enemas in the last few days along with me massaging his tummy and ......NOTHING. The Dr tried to "help" the process this am, but really no results came of that. So instead of another enema or a molasses enema (gross, but very effective- you'll never look at a cookie the same way again) they put in a rectal tube. We did get some results from that so looks like we'll hold off on the molasses for now. Danny's issues are due to a very tight rectum so they are checking into possibly doing Botox, down yonder, to help him. It just floors me how in the world he can't push out liquid. Cuz his stool is always very loose but he just won't let it out. Pretty talented if you ask me......I can't do it, lol. As it is now, we are still looking at being discharged on Monday already, again I'm flabbergasted. I had planned and prepared to be here at least 2 maybe 3 weeks and here we are going home after 6 days......6 DAYS!! He tolerates, and enjoys being in his chair, he's incisions are doing fabulous, he's a ROCK STAR! Today Dan and Avrianna came down to visit us. It's so great to see them. I miss them So much. But I'm so happy they get along so well together that I don't have to worry when I'm not there. Those 2 are two peas in a pod. I couldn't have asked for a better father daughter relationship, then they have now. Now if they can keep it, that will be the true test....yes the apple doesn't fall far from the tree and they BOTH can be very hard headed and opinionated. I will have my work cut out for me :). Yesterday Danny and I had a surprise visit from Ruthie and Pastor Mode from the church we looking at joining, Our Savior's. It was so nice to see them. It warmed my heart they took time out of their busy schedules to come down and meet US. I have NEVER so much as received a visit, phone call, or letter from the church I grew up in and my children are members since we were all born for any of the hospitalizations that my family have gone through. And here's a church that went out of their way to meet my main Lil Man. Only good thing can from this church, I feel. They are very welcoming, friendly, and have tons going on for the children. So far I like what I see. Tonight Avrianna is performing in church with the chimes. Yes, miss busy body has taken on chimes in church and the youth choir on top of Sunday school and she's loving it :). I really wish I could have been there for her first time, but there will be other times and I guess Dan is entitled to a few firsts too :! Thanks for following us. Your support and prayers have been greatly appreciated. You guys have helped me through some pretty rough and scary times. I don't know what I would do without you. I hope to be updating my next post from the comforts of my home. I will update with the photos of our hospital stay once we are home. As the hospital network doesn't allow me to download pictures on the blog, but I have posted many of the pics o. FB, if you want to check them out sooner. Off to get some dinner and ice cream (YES! Froedert got ice cream back in the cafe). Then I'm going to chill out in Danny's bed to watch the Packer game and some episodes of Dallas. Yes, I went out and got the whole collect of the 14 seasons of "Dallas". It kinda neat to watch these now that I'm older. Avrianna is even getting into watching them.

Wednesday, January 9, 2013


Yesterday was the BIG day! We were admitted on Monday afternoon into Rm#407. It was so nice to be able to come in the night before and get settled in. It's so difficult to be here at 6am. Seeing we were admitted earlier, We were able to get Danny's baclofen Pump increased to help with spasticity and spams for the back fusion, Danny got all of his breathing treatments done early before they took him down into the OR, and we both got a good nites sleep. Man yesterday could have been even more draining if I would have has to get up at 2ish to do all his cares and get on the road early enough to be here on time. The waiting game was very difficult. My mom and Danny's nurse, Gail, came down to sit with me during the surgery. We went out for lunch to The Cheesecake Factory which was a nice break from the hospital life and staring at the clock. They wheeled Danny down to the OR at 8:30am, about every 2 hrs they called me with a progress report, and 10 hrs later I got to see those handsome cheeks again. It was a shocker to see him at first as his face was SO swollen. When you lay flat on your tummy for that long, and they give you fluids all the fluid pools. So those round cheeks were even more round with the biggest lips/tongue I've ever seen. Thankfully, most of all the swelling has already gone away in the last 24 hrs. Danny did amazing in the OR room. He behaved himself and listened to his mommy. As I told him to NOT give the Drs grief. He required only 1 blood transfusion which that alone is a shocker. They had thought at least 2 or 3 units would have been needed. The only real hiccup...if you call it that, is his bones are very soft. Softer then they had thought. So more screws were needed to get the stationary rods to seed in. If I remember correctly the surgeon said Danny is now the proud owner of 24 screws and 4 hooks along with the 2 rods, one on each side of his spine. I am really interested in seeing what his back looks like. His whole back is bandaged up so I can only imagine what it looks like under there. I didn't realize that to remove the VEPTR rods the surgeon had to reopen the old incisions...the two large ones up on his shoulder blades and the two large ones on his hips. So he has those 4 incisions and one very large one that runs from his neck all the way down to his bumm. He has 2 drains coming out of his back right now, but they should come out on Friday along with a dressing change so I will be able to see what his back looks like. The true visual will be the first full X-ray. I know I'm weird but I like to see everything we are dealing with. Tomorrow PT will be coming in to sit him up and then we will transfer into his chair for about an hour. Is that not amazing! His back has been filleted open, screwed with (literally), and they are going to sit him up and put him in his chair within day 2. Wow!! What's more Surprising to me is, I bet he could have done it already today. He is already off all iv pain meds, he has tolerated all position changes without so much as a moan, he has even coughed and nothing but smiles. He's been awake and smiley ALL day. I really don't think he understands the magnitude of his surgery yesterday. He is a ROCK STAR!! I am speechless with how well he is doing. Heck everyone is pleasantly surprised with my super man. Makes me wonder if the VEPTR rods were that uncomfortable to him that now he feels better. I'm not sure why he is doing so great, but I'll take it!! I'm kinda scared for Friday. As he is going back in the OR in the afternoon to have his baclofen pump replaced. This is to be the easier surgery of the 2 and I'm just afraid we are going to awake the sleeping giant and things will get nuts. I hope that he continues to prove me wrong and comes out of this next surgery doing amazing too. We will be home in no time if this recovery process stays on course. I shouldn't even taunt myself with the big discharge word as I know all too well how bad things could turn around here, but with what I've seen from Danny today one can't help themselves to get excited. Woot woot. Go Danny!! Dan came down to see his rock star son today. I am so glad Danny is doing so well and got to strut his stuff off to his daddy. I know Dan was pretty worried, as we all were. Dan and Avrianna are coming down on Saturday to visit. I hope he can show off for his sister too. She would be totally excited if I could tell her we will be home sooner then later. She really loves and worries about her Lil brother. She's so good to him :) Thanks for stopping by and checking on Danny. All of your thoughts and prayers have worked. I am forever grateful for your support. Stay tuned for round 2 in a few days

Wednesday, January 2, 2013

The Griswald's, I mean Osero's Christmas Vacation

The vacation started not quite how I thought it would....BUT that doesn't surprise me AT ALL!  We were to leave on Friday after Avrianna got home from school.  I was in the RV packing it up when I was getting chilly so I went to turn on the heater........NO HEAT!!  Are you kidding me???  I had really thought that would be it for our vacation.  We can't drive there with no heat.  I know we are going to Dallas, TX but we still need heat for the drive especially for the evenings.  Thankfully I found a wonderful repair shop that would look at it first thing Saturday morning.  So everything was on hold till I got word if it was repairable.  Saturday morning Dan took the RV in and thankfully it was an easy fix.  Those darn Mud Wasps had found a great place to make their the igniter and damper for the furnace.  I am so glad it wasn't anything too serious....the vacation is back on!  
As we were wrapping up our packing and ready to hit the road......My thumb got slammed in a door.  OMG did that hurt!  I thought I had broke it, but it just dislocated.  I relocated it, bandaided it, and we were ready for road once again.
The kids and I were in the RV ready to go, with excitement rising high to head to the big city and warmer weather.  Dallas here we COME!!  Dan opens the door to the RV stating it's going to take a bit longer as when he went to load the van on the dollie the front bumper got alil too close and it was "repositioned" ~ Ahhhhhh! 
With that I will start to share our photos from our "vacation"

$%!^ ~ we threw a few screws in the wheel well to hold the bumper down and it was good enough so we could shove off
 On our trip we got to celebrate Danny's 9th bday on the 23rd.  Happy Birthday Lil man!
 I started a group on FB called Birthday Card Shower..... Danny had 73 cards to go through the day of his birthday.
 Where's Danny??

 Avrianna had a blast opening and reading all the cards that Danny received.  What an amazing turn out!!  Once we got home he had more waiting for him.  He got 100 cards in that's a shower of cards :)

 I think he was excited to get all those cards :)  Doesn't he have a wonderful smile?!?
 On the road trip I ended up falling down and landing on the console with my lower back.  INSTANT bruise OMG did that hurt.  It was an injury prone vacation for me, that's for sure.
On the road you could tell the weather wasn't the best.  Thankfully we left a day later as the weather wasn't so nice the night before.  There were MANY semi's in the ditch jack knifed facing the wrong direction.  It was eerie how many there were. Did you ever get that feeling that maybe we shouldn't be on vacation?? We decided to get off the road for the nite and hang out to watch a movie and enjoy Danny's Birthday more. 
Once in Texas we saw the Race track it is HUGE!!  It is true in Texas they do everything BIG.  Wow!

 The kids did wonderful :)
 Christmas morning was very relaxing.  The RV was overflowing with gifts.  We opened our gifts and just hung out for the day playing around with our gifts.
 My Christmas Reindeer
 My Secret Santa
 So much for the warmer rained, thundered, and lightninged so hard Christmas Eve and then it turned to wet heavy snow.  Yes my friends Dallas,Tx got 2" of snow AND it was so cold out our water hose to the RV froze.  We were without water for 2 days.......I can only laugh at this point of the trip.
 If there is 2" of snow in Dallas, TX you would think a blizzard hit.  To us it's a dusting, but to them WOW.  They were freaking out they had ALL that snow.  The news were talking about staying off the roads to stay safe........REALLY?  Some thought they were snowed in, LOL.
We took off to the Grapevine Mall.  Again HUGE place.
 They had the Legoland Discovery Center ~ of course we HAD to go.
 We checked out the 4D movie
 Even Danny thought is was cool!!

 Dan and Avrianna got their competitiveness on and each made a race car to see whose would cross the line first.

 Across the hallway there was an aquarium.  How cool is that legoland and an aquarium right in the mall.....AWESOME!!  Did I say how big this Mall was?!

 Well of course they had to have a bungie jumping place right in the entrances of Legoland and Sealife.  Man they have big tourist money pit/trap, and yes we fell into it ALL :)

 The new Cowboys Stadium.....HUGE, HUGE.  Did you know it's located in Arlington?  It was just down the road from our KOA trailer park we stayed at.  There was so many sites ALL in this location....the Cowboy stadium, the Texas Rangers Stadium, AND Six flags Great America.  I can only imagine how busy this area can get.

 The restaurants were AMAZING there.  All of our favorites!!  We were ready to move there with all the good foods.  They even have a Jason's Deli, but we didn't get to that one.  We did get to eat at Sweet Tomatoes, and the Cheese Cake Factory BOTH my FAVORITE!!

 We took a trip into Fort Worth to check out the Science Museum.  Our hopes were to see the Titanic Exhibit but unfortunately it was sold out, but we did see some other amazing things while there

We even caught a lazer lite show in the Planetarium ~ Holidaze
Then is was off to Dallas where we hit the Ripley's Believe it or Not and Wax Museum.   COOL!!  I remember as a kid watching the tv show of Ripley's
 Very life like ~


 Walk the Line!!
 Go Michael Go Michael!
 Two headed infant
 World's tallest man??
 Weird and OUCH!
 The maze of mirrors.  I so got lost.  I got separated from these two and pushing Danny in a maze full of mirrors in the dark was NO picnic.  I ran into some kids and they helped Danny and I find the end :)
 Our last stop was to the Southfork Ranch ~ "DALLAS".  When I was a lil girl I remember every Friday nite going to my mom's friends house and the "women" watched the show and the kids got to play.  Dan and I have started to watch the new episodes and it's a blast from the bast.

 RIP ~ JR Ewing ... You will be missed!!

 Southfork ranch, yes the actual ranch.  BUT the only scenes they shot from the ranch were all Outside on the patio, pool, and in the stables.  They have the inside all decorated to "fit" one of the actors but they never video'd inside.
 Where they ate breakfast pool side :)
 The end of the trip was a bittersweet.  BOY was this trip an emotional and physical strain on me.  It was an eye opener to the good and the bad.  But all n all I am so glad we got to go.  Of course in true Osero style things didn't turn out as planned.  But as a good friend has said to me recently.....if you dwel on what didn't happen you won't enjoy the things that did.  I DID enjoy myself but again it was ALOT of work.  For me it wasn't much of a relaxing "vacation".  To maintain Danny on a daily basis is....well.....WOW!  I am so much more grateful to have the 4 WONDERFUL nurses we have with us to help me with my favorite Lil Man.  I am indebted to them forever for all that they do to help our family life flow and maintain his health.  It's a hard one to swallow, but I really don't think I could do it on my own anymore.  It was an eye opener for me.  Thankfully he waited for the ride home to have a pretty intense seizure that required many rescue meds.  Poor Bug had so much fun it overwhelmed him :)
But look at that face......So peaceful.  I could gaze at him forever!!
Well that was our trip!  I am glad I was able to show you our adventures.  I bet you all are jealous you  didn't get to be with us, HA!  No wonder I feel I need to be in a padded white room at times :)
Now onto our next BIG adventure.  Danny will be admitted into CHOW on Monday nite, the 7th and he's scheduled to have his VEPTR rods removed and then have his back fused and stationary rods will be placed.  This is going to be his biggest and longest surgery, he will require more blood product due to the significant blood loss and the surgery will be approx 8-10 hours, to date.  I ask that you please keep my Lil Man in your thoughts n prayers next week.  He can use all the help we can give him.  Then on Friday the 11th in the afternoon he will go into surgery once again to have his baclofen pump replaced as the battery for the pump has neared the end of its life.  You can say anxiety is running HIGH with his momma right now.  I will be glad when it's February and we can look back and say it's over with and things turned out alright.  PHEW!!  Thanks for following us.  I'm off to finish undecorating the house, unpack from our travels, and pack for our extended stay down in CHOW.  Wish me LUCK!