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 sits...it'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 afternoon...you 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 !

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

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 too.....as 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!

New Proposals

"Mom can you do me a favor?"

What?

"Can you make sure I get my homework done right away after school and then can I go to bed?"

What ~ Why?

"Things go faster when I'm sleeping and we'll be leaving for Florida sooner if I'm sleeping"

Got to LOVE the way they think!

We'll we're going to attempt to go to Florida for a family vacation once again. I can't wait to get away from the snow! We should have great weather down there and tons of sun. Give me that Vitamin D!! I'm hoping for a wonderful relaxing time, with alot of nothing to do. We've been pretty busy around here so it will be a nice break for us. PLUS it'll be a nice break before Danny's next surgery at the end of the month.

I had my second treatment of Tysarbi on Thursday. It was pretty rocky as to if I would even be able to get the infusion because I was taking steroids due to the severe headache/relapse earlier in the week. It was finally approved that yes I could have the treatment. PHEW! Leave it to me to have a reaction after the medicine was finished....my face, neck and chest became very flushed. Now they would like me to take benadryl before I go, just to be on the safe side. I am still on a mission to find a newer, better way to keep my MS at bay...as I still have alot of symptoms/relapses. I have been very weak and fatigued with lots of aches that have made it pretty difficult for me to walk. I got "the talk" once again about how I should be using a cane or walker. But I have a secret, I push Danny's chair or push a cart around and no one is the wiser that I need something to help me walk. Having a handicap license for Danny and for me is a bonus! And you got to LOVE the newest symptom I'm having which is what I call the Parkinson shake ~ it's awful! I had a bunch of labs done today after my Neurology appt so once they are in we are going to decided if I should start a different med or increase the meds I'm already on, UGH! I'm definitely not going to start a new med right before I go on Vacation so it will have to wait till we come back if that is the case.

We bought a new mini van to replace our full size Ford van. This too will be converted so that Danny can get in, but with more ease. This one will have a ramp that will fold out from the rear hatch instead of a lift that lowers out of the side doors. I can't wait! Best of all....wait for it....for those of you that know Dan.....wait for it......it's NOT a Ford, it's a Toyota.....I know, right? I bet he gets hives not being in a Ford, but for me there's no issue. Of course in true Osero style the van was "lost" for about 4 days. REALLY, how can they lose a van? But at the same time it doesn't surprise me. The vehicle was being delivered from Michigan to Milwaukee on a transit but it didn't make it's destination on Thursday like it was suppose to and no one could find it. Well it finally made it to Milwaukee, today, but unfortunately it's not in enough time for us to pick it up and have everything ready before we leave so I we'll pick it up when we come back from Florida.

I send a heart felt very educated email to Danny's orthopedic surgeon about his up coming rod lengthening surgery on April 1st. It's become apparent to us that Danny is having significant pain in his right hip again which is making normal daily cares very difficult and tear filled, for all. So I proposed that instead of doing the steroid injection in that hip (I feel a band -aid) I believe the inevitable surgery (a Girdlestone procedure ~ cutting the head of the femur) is the better route to go. The only thing I can TRULY give Danny to make a "difference" in his life.... is comfort. I'm willing to invest the extra time and steps to make the quality of his life more comfortable for longer. I'm still waiting to here the Dr opinions and see if there is time available that can be added to his rod lengthening surgery. Once again the waiting game, sigh.

Please keep Danny's girlfriend Kylee and her family in your thoughts n prayers. As they are preparing to let their Lil Angel go. They are going through something that no family should have to ever endure. My heart breaks for them. What a wonderful family and I'm so glad our paths have crossed to make a great friendship. We LOVE you KYLEE!

Much Needed Updates

On Tuesday the 14th we took a trip down to CHOW for some follow up appts on Danny.
The first one was with Dental. He had only 3 teeth that had minimal tartar to be removed and then he got his teeth cleaned. What a trooper Danny was :) and cudos to the nurses for maintaining great dental hygiene....gold starts for having a great set of teeth for Lil Man. He wasn't too impressed with getting his teeth scraped but he recovered well. It was a great appt, just another cleaning in 6 months. He does he 2 more teeth that are loose but not loose enough to be pulled at this time.
The second was Danny's pre-op for the rod lengthening in Jan. This one was pretty easy, just vitals and look at the MRI images that were taken about a month ago. We talked about the procedure and if it was even needed at this time as his curve didn't move since the revision VEPTR surgery in August. I remembered one of the questions, when I was considering the VEPTR, was how did they know he needs to be grown? The answer I got was when the curve increased on the images. Well his curve is stable so why grow him out? I know "protocol" is to grow out every 6 months BUT if it's not needed then why do it? Danny's dysautomonia (a disorder of his body not reacting the way it is "suppose" to automatically) goes so out of control when he is put under anesthesia. So I left that appt very confused on what I should do and what were that right options for Danny.
Then it was break time.................Lunch at The Cheesecake Factory,.YUM ~ Life is good! I had all the comfort foods and then....of course CHEESECAKE. I mean how can one go to The Cheesecake Factory without eating a piece of cheesecake. I did share the Kaluha Coco cheesecake with the nurse because I was so full from the main course, so it wasn't too bad (with the weight watchers points, LOL).
Back to the hospital for our last appt with Palliative Care and Rehab. I couldn't wait to see them. These two Doctors get the WHOLE picture with Danny, not just a specialty. PLUS we haven't seen Dr Klingbiel in a long time as Danny was being seen by another Doctor in rehab that was also taking care of his baclofen pump. She is now gone, Danny's neuro is back taking care of the pump and we get to see Dr Klingbiel again, Wooooowhooooo! I LOVE these two Doctors, they make our stays in the hospital and the cares between all the specialist alot more bearable. I know they got my back and understand the whole quality vs quantity. I don't know what we would do without them in our corner. I informed them of the findings at the pre-op appt and BOTH of them are on the same page I am. PHEW! So I canceled Danny's surgery in Jan and I will have xrays of his spine in Feb when we are down there for other follow up appts to see if he'll need to be grown out this spring. I'm all for not putting him through surgeries IF they are not needed. The only disadvantage is that we were going to have an injection done in his hip to see if that helps with the pain Danny is having. They did increase Danny's baclofen pump ever so slightly in hopes to decrease his spacticity and spams and that will make his pain levels lower. Changing the pump is so easy, so why not try it, right. If it doesn't help then we know and can switch the pump back to it original settings. We'll see!
Unfortunately the seizure monster is back. Danny has been having alot of neuro issues lately and at times his oxygen levels even decreased.....NOT COOL! So you can bet that Danny just bought himself an EEG in the near future. We'll see when we can fit that in this Holiday season.
I got my Lab work and MRI results back last week. NOT so good :( BUT my eye exam went well, the MS has NOT attacked my eyes other then having the side effects of my headaches through my eyes, PHEW! All my labs were "off" but most of them are being blamed on having the IV treatment being the culprit of that. So I am going back in on Monday, for more labs to make sure I am back in "normal" limits as well as a more tests. The MRI I had done did show 3 new "hot spots" or lesions (1 in my right frontal lobe and 2 in my left frontal lobe making it a total of 7 now) so what I'm going through is indeed a full blown MS relapse, sigh. Then with being on the IV treatment to help with the relapse symptoms it did make my system feel even worse because it dropped my thyroid function more (which is already working shady), it increased my sugars (which I'm already at risk of being diabetic), and my blood pressures have been way HIGH. The headaches are coming from the lesions/soars forming in my brain. With me not improving after the "treatment" and the lesions not settling down (they glow when they are active on an MRI, hence the "hot spots" meaning they are active at that time. When they are not so bright they are not active.) after the treatment I've been up graded from relapse-remitting or remitting~progressive ~ which means that disease is taken hold and I'm not going back to "normal" after a relapse, I continue to deteriorate. SO........the decision was to switch my meds in hopes we can put this MS in REMISSION instead of the path it looks like I'm taking. With the change comes the risk, there is NO EASY answers with having a disease without a cure. You either let the disease kill you OR you could die trying. I have to give it every effort to make myself better! I am going to be going in to have a med port surgically implanted in my chest so I can start a medicine that will be given by infusion. BONUS is no more daily shots that bruise and sting like crazy. I will be going in once a month to the hospital to have the med done via my port, it should only take about 1 hour to give and then I have to stay another hour to make sure I don't have any immediate reaction. So that will be nice only 2 hours a month. This med has done wonders with shutting the symptoms down and not getting anymore lesions. I'm crossing my fingers it works. BUT it comes with added risk...one being infection from the port and the BIG one is the possibility of getting a brain infection that could be fatal or cause severe disability. No stress there, AH! The only good thing is that they are aware of it happening and they monitor you VERY closely. So I feel somewhat better about the situation, but I'm still alil edgy about it. I'm not sure yet of when the port will be done, but I have to wait to start the new med until I've been off the old one for a month. I stopped taking my meds as of yesterday, which is scarey in it's self with being in a relapse an now NOT being on any meds, I hope I don't any worse.
I am officially done with Christmas shopping AND wrapping. CHEERS! Bring on the Hohoho and the hot toddies. I'm ready! I'm still bummed about not being in Florida for the Holidays but I am looking forward to hanging out with Dan and the kids in our jammies playing with out new stuff :)
This week is full of events for me. I am going to work at Avrianna's school holiday store for a few hours tomorrow morning, then Tuesday we have Avrianna's Brownie Christmas party that was cancelled last weekend due to Blizzard Aiden, and then I have to help out and cook a dish for Avrianna's breakfast Christmas party in her class on Wednesday. Thursday starts Winter break so Avrianna will be home till Jan 3rd :) Not too mention all the medical crap between Danny and I. I have labs and possible port placement...Danny has his yearly physical with Dr Kasper. Then ahhhhhhhhh the holiday's, it's so weird knowing we don't have to go anywhere or do anything (as we used to run all over the place) and we can relax. I can't wait!
Thanks for following us and your support. Words can NOT express how much you and your support means to us.
Please have a Safe and Happy Holidays! From The Osero's

What We've Been Up Too

Sorry for the lack of updates but this last week has been a busy one for the Osero household.
Avrianna has been very busy hanging out in the basement in her blanket forts IF she's not swimming in the pool. I swear that girl is going to grow gills, LOL. She's decided to do swim again this winter n fall with The Wave Swim Team. It's alot of work and running around but I'm glad she's found something that she enjoys to do. Her piano lessons have really paid off.....Dan and Avrianna will sit at the computer and play together .... I LOVE IT! She's becoming a great musician :) School is just around the corner, WOW I have a 3rd grader. Boy do I feel old, LOL. We are done shopping and labeling the school supplies. She's all ready and thankfully she's still eager to go back to school :) This weekend is super Birthday party busy for her. Avrianna has a sleep over birthday party to be at tonight and then I pick her up to take her to another birthday party on Saturday afternoon. WOW, can you say OVER tired when she gets home....YIKES!
Our newest visitors to our home ...... twin fawns and their Momma :) I heard it's rare to see twins so we're very excited they like to play around in our yard for us to admire them. They are so fun to watch as they prance around :)Unfortunately Danny has still been in alot of discomfort this week. Another reason why I haven't had alot of computer time this week. This is after his nurse gave him his first shower......... he was NOT thrilled. Way to go Gail!! LOL BUT we all are happy he got a shower and smells ohhhhh sooooo MUCH BETTER :) Sorry Lil Man it HAD to be done!It's always comforting to know that he's in the best care ...... with his "girls" ~ WE LOVE YOU!! I don't know what we'd do without you in our family :)
Nurse AleanaNurse GailHe's been tolerating his chair more n more as the week goes on, YIPEE!! BUT as you can see he's VERY cushioned when he's in it. All the steary strips are off!! His incisions are already scared over. It's amazing how fast his body healed with this surgery.3 wks Post Op Xrays ~ Danny went from a 83 degree lower lumbar bend........now to a 36 degree bend. Wow that's OVER half of the correction, which we had hoped for. BUT now it's noticed that tweaking the lower has given him another curve in the middle of 25 degrees. So if you were to subtract the to two curves he's really only curved 11 degrees. WOW WOW! The doctors were pleasantly surprised that his hardware is all in place because of his levels of discomfort the last week it was on there mind that something might have happened.The lateral view ~ 3 wks post op Xrays.....I still can't get over how straight he is. WOW!! Look how nice and flat the puck for the ITB sits in his abdomen now :)Danny's hip showing it is more subluxed BUT not totally dislocated yet ~ not sure if that is good remark or not

The other issues that I was made aware of during our post op visit is that the pelvis hardware could be irritating Danny sciatic nerve....oh great! So this could be the source of discomfort too. PT has started back on so I'm hoping they can work him over and stretch him out, LOL. Danny is continuing to increase his formula regimen....and decrease the TPN nutrition. The "plan" is that he will be off TPN by Monday. WOW ~ I'll take is as the last surgery/illness had him on TPN for almost 5 months. The drive down to CHOW wasn't as bad has I had anticipated it to go, thanks goodness. Mind you he was heavily medicated, but still I had planned for the worst and was pleasantly impressed when he did so WELL. What a ROCK STAR!!

Despite an awful migraine I woke up too on Thursday .... I still was productive :) I had told Danny's nurse that I would make a cake for her daughters birthday. She's a Harry Potter fan and wanted a cake of The Monster Book. I'm not educated with the Harry Potter stuff so I'm hoping this protrays everything correctly. Happy Birthday Alexa!!

The Verdict

It sounds like Monday we'll be able to go home! If he wasn't on TPN we could have gone home yesterday (Saturday), but the home health agency will need to make up the TPN n deliver it to us so with it being a weekend they weren't sure if they would be able to have it completed. That's ok, there is an end in sight, and Lil Man continues to do GREAT! I was so worried about this surgery and here he proves me wrong once again .... I'll take being wrong when he's too the better :) Last night Dan and Avrianna came down to visit and took me out to The Cheesecake Factory. UGH, I still think I'm full ~ LOL. We had the Oreo Cheesecake for dessert ~ I had alil bit of heaven :).
Well not too much to report, but I guess that's a good thing....right? I ended up finding out some of his meds were not correct on his med sheet so I'm hoping now that we've corrected things he's urine output improves :) Danny also had 2 "code browns" yesterday after each enemia....glad to see they are starting to give results :) BUT still no significant bowel sounds..WAKE UP already!
Avrianna had talked my ear off with all that she did at Girl Scout Camp. I'm so glad she enjoyed her camp time which I know helped keep her mind off of her brothers surgery :)
Thanks for stopping by to check in us! We LOVE to hear from you guys too so post a comment or sign our guestbook to let us know you stopped by ~ Until next time

Results

AMAZING!
Danny hasn't had ANY pain meds since last night at 7pm. I can't believe it! What a ROCK STAR! And that's even with a bed bath, sitting up and transfering him into his chair. He is very comfortable sitting in his chair watching TV this morning. In rounds today I asked the golden question .... What NEEDS to happen for us to go home? The assumption from the hospitalist was Danny needed to be on his home feed regimen.....until I let him know that we've done TPN at home already. Then it was decided that his urine output needs to be better (we can cath at home but if he's not producing it, cathing won't do antyhing) and he needs to get cleaned out better (luckily this mornings enemia finally gave us some results). Danny's had 6 in the last 32 hours without good results, so it's a good thing that he's finally getting some of it out. Not that is was too impressive (as the KUB had shown him to be VERY packed), but it's a start. We can do enemia's at home so that's not as BIG of a deal as the urine production. They are wathcing his urine output this morning and if he continues to slow his production down he might have another round of albumin n lasix later today. They are going to consult with Dr John today to see what he feels is a "good" plan of attack for going home on.
I will keep you posted! Dan and Avrianna are coming down the visit today :) I can't wait to see them!

sleeping in

More like sleeping in his chair!! Today was the first day in his chair and he had the best heart rate in the last three days while in his chair :)

He was so comfy he slept in his chair, well that's really not totally true......as I've only seen his eye balls for maybe 2 hrs today. He's just wiped out! Not sure if he needs the day to recoup from all that's been going on or if he is reaping the benefits of the baclofen catheter being up so high and now he's more sedated. I've requested that rehab consult in this matter but seeing it's almost 7pm on a Friday something tells me we are NOT going to hear from them any time soon. We'll see what tomorrow brings for his alertness. Danny did sit in his chair for almost 2 hours before we took him out. Once again a ROCK STAR! It didn't bother him at all, it's so nice to see him back UP in his chair. Another step closer to home :) We have his chair almost sitting straight up....he's NEVER sat straight up in his chair it's ALWAYS needed to be reclined. Boy will this be nice as he's not so long anymore we won't be taking out as much wood work n walls, LOL
He even slept through his dressing change. And he HATES tape....he gets upset when you take of a band aid, BUT he'll sleep through a shot. I know weird! Well here's the wounds. Not bad at all!! As you can see he still reacts to the "special" wound dressing that he's NOT allergic to.

Here's the orthopedic surgeon that has worked his magic with Lil Man's back.....Thanks Dr Tassone :)

And this is Danny's Palliative Care Doc ~ Dr John he helps Danny tremendously in managing/coaching "the team" to make sure they all play nice and he makes sure that Danny is as comfortable as possible :)

Thanks Docs for helping to give Danny the best quality of life, you are greatly appreciated!

I talked with Avrianna and she had a BLAST at camp. This was her first camp that she's attended and from the sounds of it ..... it definitely won't be the last. I'm hoping Dan & Avrianna will be coming to visit this weekend sometime so I can get all the details of her fun filled week. I'm so glad she had a wonderful time!

Straight UP! Before n Afters

X ray showing Lower Lumbar curve and cath tip in the middle of his back BEFORE VEPTR

Xray showing the curve in lower lumbar.....it's almost gone! View of lower rods of VEPTR

View of upper part of the VEPTR rods......he's so tall they can't get it all in one xray any longer

BEFORE surgery the right side of him was 43" and the left side was 45" tall. Now that his pelvis is more level he is ..................... 47.5" TALL. He is actually 47" on the right side but WOW that's a 4" gain on the one side and his sides only differ half an inch instead of two. HOLY MOLY!
Sitting up BEFORE the VEPTR ~ impressive curve

Sitting up 48 hrs AFTER the VEPTR ~ AMAZING!

Danny only gave PT this face for a few seconds and then sat up in bed for over 5 minutes. What a ROCK STAR!

Back views ~ they are going to change the dressings tomorrow so I'll have a better idea of what's going on under those bandages.

You can see a LARGE abcess looking bubble in the center of his back......this I'm being told is "ok" muscle swelling from the rods being threaded under the skin.

In true Danny form he has thrown a few curve balls our way. Unfortunately his belly n GI tract hasn't woken up from surgery so they are starting TPN tomorrow. This is something I was totally prepared for, but was hoping it wouldn't happen. His CRP levels (inflammation marker) is extremely elevated so along with the high heart rate, fever, and lack of urine he has the doctors on their toes to figure out what is going on internally. Welcome To MY World, LOL! This afternoon he went into a hour spell of retching, boy that is so hard to watch. He couldn't catch his breath, poor thing! He is resting peacefully right now:) So far all n all I'm very happy with the VEPTR results. We'll see what this evening and tomorrow brings our way. He's had a Great team of nurses taking care of him....I've even gotten out of the room this time here n there to grab something to eat. Boy does that make the stay here SO MUCH easier when we have good nursing care and not to mention consistent nursing care. We've had the same nurses every day n night. They are starting to get the "Danny" way :0)

I talked with Avrianna and she is having a GREAT time at Girl Scout Camp. Yesterday they did tie dye, to was pool day, and tonight she is sleeping over at the camp. Sounds like a FUN time! I can't wait to see her and give her BIG Hugs n Kisses.

I've been keeping myself busy here between chattn it up on FB (what a great outlet of support) and have about 1/3 of Danny's birth to 1 scrap book done. Everyone that stops in wants to see it :) I LOVE talking about my Lil Man!

Thanks for stopping to check on us!

GOOD Day!

Danny's newest Hardware.....the VEPTR2 rib to pelvis connection.

His torso is SOOOOOOO long now and not to mention VERY straight!

Monkey'n around...his new balloon

Just as last nite went....this morning continues to go well.Danny has had some bumps in the road but nothing too serious. Last night he really wanted to not breathe deeply so his CO2 levels and other labs jumped significantly, BUT when he heard that they were bringing in a vent to "help" him out some....Danny decided he'd rather start breathing better then be put on the vent. Sassy BOY! This morning his labs were all coming back down into the normal range :) This morning's issue is his lack of bowel sounds and pee. He was given lasix very early this morning which helped BUT he seems to slowly decrease his output once again. I believe if it continues they are going to try albumin to see if that helps out. We also gave him a suppository to see if that helps in the pooping dept.
Ok NOW on to the good news!
Did I say how GREAT he looks!!!!!
It's amazing how straight he looks, I didn't think it would have been so noticeable. Now I can't wait to see what he looks like sitting in his chair, BUT I'm alil on edge as I know it's going to be very uncomfortable for him. One step closer to being home so let's see what he can do...You'll NEVER know what he can do, unless you let him try. PT is coming this afternoon and they are going to attempt to get him in his chair.
He is tolerating the pain VERY well, much better then I had anticipated him too. They just turned off the IV drip pain med and started on the oral meds so we'll see how he does with that this afternoon....again another step closer to home :)
The incisions are ....well, a cake walk to what I had thought it was going to be. The surgeon didn't open him up like I had thought with one BIG incision. Danny has a small incision by his shoulder blades and above his pelvis on both sides and then they threaded the rods under the skin. So other then him probably feeling like he got hit by a Mack truck the incision site should be a BIG issue for the pain source.
The Neurosurgeon was able to thread in Danny's ITB catheter back up to T1, WOW. I'm so excited as they have already started to turn down his pump rate and they are thinking of getting rid of some other tone meds. Now to sit and wait to see if his leg functions come back :) EXCITING!!
All in all this decision has seemed to be the right one for Danny. I'm sure it's not going to be all roses through his road to recovery, but I DO BELIEVE in the end It will improve his quality of life. That's what IT IS ALL ABOUT!
Thanks again for following us and sending your support our direction. I will keep you posted on his progress.
Danny and I are in Room#416 surgical ICU at Children's of Wisconsin in Milwaukee the direct line into the room is (414)337-8106. Thanks for thinking of my Lil Man :)
Avrianna is doing wonderful at Girl Scout Camp. I don't even think she misses us! I'm glad she has something to do to occupy her time and mind. Can't wait to see the fun stuff she did at camp :)
Now I'm off the start Lil man's scrapbook. My project for this admit is to start in finish it. Avrianna's is already complete!

Veptr surgery

Danny has been in surgery since 10:30 this morning. He is doing great! They placed a PICC line before surgery with no complications. The ortho surgeon is about another hour from completing the VEPTR spinal correction. Once he is done he will come out to talk with us as the neurosurgeon starts to replace the ITB pump catheter. I will post later once we get in a room. Sorry so short n sweet but I have to update the blog via my phone and the connecton isn't so great. Thanks for your prayers and for checking in on my Lil Man

BACK on!

Look at this SMILE! Danny is doing so well and he has been in such a good mood.....I'm LOVING IT! (knock on wood)


Lately every time I take Danny outside a bee thinks it won the lottery with Danny's flower on the wheelchair. REALLY, and they are suppose to be smart?

I got confirmation yesterday Danny is having the VEPTR2 back surgery on July 13th around 10:15am. This surgery is "suppose" to be less traumatic on Danny and still have good benefits. This one has significant differences from the first surgery we almost did.....time of surgery is around 2 hours vs 8 and Danny's blood loss is alot less during surgery. We are still working diligently with the powers that be at CHOW to get all the loose ends together, but I think we are headed in the right direction. I'm excited and freaking all at the same time. I am very glad the surgery was able to be done before the beginning of school for next year. So the brunt of the recovery for Danny should be over with once we start his therapies back up. I'm freaking out, as most of you all know it's been one thing after the other once we step in that hospital, sigh......BUT I'm hoping for a better experience this time. Please cross your fingers!! I really want this to go well, not for just the obvious reasons, but we've worked so very hard to find a GREAT team of doctors to follow Danny and I just don't want to have to go through finding new ones, as if I can't feel that it's a "safe" place for my kids when it comes to the quality of care I will have to look else where. I will NOT settle for second best when it comes to the health and well being of my kids. The only disadvantage to all of this, of course the week I'm gone for his surgery, is the same week Avrianna has her summer Girl Scout Camp. I will have to get reports of how things went each day via phones calls, so I'm kinda bummed about that. The good thing is, the only day Dan will be gone (day of surgery) so he won't be able to get Avrianna to n from the bus stop, is my mom's is day off so she's going to help out.
Avrianna is still loving all her summer activities, she is practicing for a play that she is going to be Wendy from Peter Pan which she is very excited about. She also has been playing with her friends. I'm so glad we built here, wonderful families around us the area is so nice to raise your kids :)
Bailey is still sporting the cone of shame even though the wounds are healing VERY well she insists on licking, Grrrrrrrr. I do think it will only be a couple more days and she can be "trusted" to have it off more often.

The garden continues to grow! Honestly I am pleasantly SURPRISED at how well things are doing, now to see what the final out come does at harvest time.

The Peas

The Beans

Our Corn

The pepper plants and Tomato plants

The cucumber/and pickle plants

Zucchini

Waiting

That sums it up around here....alot of waiting. It's not necessarily a bad thing, but none the less still waiting.

Bailey went on Monday to have her staples removed and she was a trooper. I know I wouldn't take it as well as she did. BUT she still needs to have her cone on as the one side is still looking icky and she won't stop licking it. I am taking her in once again today as I found two staples that were hiding, I guess, so off to the vet we go.

We put duct tape around the edge as she LOVES to ram anyone and anything with that cone....I think in hopes that if she annoys enough it will get removed, LOL NOT!

Our garden is growing like crazy due to the heavy rains (unfortunately so is the weeds)....but here are some recent pictures of our 1st garden.




Even the plants that the deer hit/ate are growing back :) I'm going to have veggies coming out of me ears this fall, LOL. Get ready Lisa :)

I am still waiting for confirmation on the date for rescheduling Danny's surgery. It is tentatively scheduled for July13th and we've decided to opt for the VEPTR 2. In talking with other physicians and parents that have kiddos with the VEPTR I think it is going to be the best option for Danny right now. We are still waiting (1 week) for the neurosurgeon to confirm that July 13th will work for him as Danny needs that ITB pump catheter repositioned and I want it done when the VEPTR is getting done, get r done all in one shot. It amazes me that it's been 1 week and the neurosurgeon's "people" still hasn't been able to get in contact with him to confirm.........not getting the warm fuzzy once again.

We are continuing to enjoy the summer season. Avrianna is now in drama, right the prefect thing for her. She is enjoying the doing what she does best.......DRAMA! The weather looks to be wonderful over Father's Day weekend :) Dan's dad and Claudia is coming over for the weekend and we are all siked! Good food, Good drinks, and great company!

We were suppose to have our family pictures retaken this morning but unfortunately something came up with the photographer so we've rescheduled it for next weekend. I'm excited that we are going to have another opportunity to retake them. Even though some of the ones I did get were nice they really weren't what I had hoped for....so we're going to have more pictures of us together taken. I would have been devastate if something would have happened with Danny during his first attempt at the back surgery because there is really on one nice picture of all of us together and I want to have a GREAT one. I know I'm crazy, but I just want to have the best memories possible. I can only hope the weather will be as nice as it was today so we get the opportunity to have outside pics of all of together. Here are the pictures that I liked from the first time she was out.

As you can see they are very nice :) But I can do head shots of the kids....I guess I was looking for more things that I can't do.
Thanks for stopping by and checking in on us!