Monday, April 25, 2011

Well HOP to it!

Happy Easter from The Osero's
All of the baskets n eggs were found in about 30 mintues....guess the Bunny needs to do a better job of hiding them next year :)
My AWESOME kids!Avrianna snapping pictures of us ~What a wonderful holiday! We had Papa n Claudia down to celebrate Easter with us. We went over to my Aunt's house for lunch, this was the first holiday in a few years that we actually went to someone else's house. As always the house was a buzz with stories and jokes, great times....great times!
I know I've been slacking on the recovery updates. No news is good news though. We've been without a nurse,those part timers think they should have a holiday off once in awhile ~ LOL, so I can use that excuse as I've been spending some awesome one on one time with my Lil Man. I've missed being his only one, BUT boy is he high maintenance, LOL. I'm exhausted ~ I can't lay all the blame for that one on Danny .... I also forgot how much fun it is with having NO time restraints so we've been out n about shopping :) With the weather being so great
and Danny doing WONDERFUL, we just kept going. Retail therapy ~ AHHHHHHHhhh!
Danny giving the PICU nurses some grief....miss you guys!
We were out of the hospital less then 48 hours after surgery and not to mention tolerating his feeds already....Oh My that is a record, I think :) It is so nice to see Danny so comfortable, it just goes to show you how much pain/discomfort he was in on a daily basis. We did have alil scare
the first morning we were home with bleeding from his port site, but Dr Kasper came over to the house and checked it all out. For whatever reason Danny started to bleed alil Thursday evening when we got home by the time the morning came around it looked as if it was still bleeding. The fear was the port had a possible malfunction, but thankfully it was only a VERY large clot. Once that was removed and we had a pressure dressing on it for the day, the site stopped bleeding. Dr K was able to draw labs on Danny, when he was here, to see if he was going to require a blood transfusion. I had requested Danny's labs that were taken in the hospital be faxed over so we had a comparison to go by. Seeing the labs there was a concern as his levels were continuing to drop since surgery, I was surprised they let Danny go home with the #'s so low. Danny must have lost alot of blood during surgery.....and afterwards. Once the labs that, Dr K drew, came back we all could take a breath, because, things were stable, they weren't dropping anymore which was a relief to hear. Danny will be on extra iron to supplement for the next 2 months while his body is now working double time to make new blood cells. Other then the bleeding scare Danny has been a ROCK STAR! He hasn't had any pain meds, not even Ibuprofen or Tylenol since he left the hospital. AMAZING how his leg can be cut down the side, all the bruising, with his bone cut off and he is in NO PAIN. I can pick him up and no issues. He can sit in his chair for hours and NO issues. I can change his diaper and NO ISSUES. I can't believe it!
See for yourself it looks like it hurts ~ (taken Easter morning 5 days post op)
Yellow bruising on top and into the groin area
Still swelling n purple bruising on the bottom .....The abductor wedge he has to wear.....NOT impressed with this one too much......see where the horizontal tape is in the middle, around the top to middle of that piece of tape is how far down they removed the bone. Not only did the surgeon cut the head off he cuts down about 1/3 of the femur bone to make sure there will be no rubbing into the hip socket anymore
Here is Danny's Med port siteit looks like a life saver in his chest :)I'm a ROCK STAR! My mom says so......And his poor eyes still look as if he'd been in a fight.... this is what happens with wrong tape, grrrGunner was very excited because as if this morning the cone of shame had been removed and put away. All four of his paws are healed and he isn't licking them anymore. Another long haul with the dew claw removal, but definitely not as drawn out as Bailey was last spring. Bailey's ear is healing nicely too. That was a relief as I was not looking forward to having to go back to the vet to have a drain sewn in. I have met my vet quota for the month, LOL. So I'm hoping they take it easy on me next month.
Thanks for following us through yet again another journey. Your support means the world to us. Take care! and let us know you stopped by :)

Wednesday, April 20, 2011

Do I know my Lil Man?

Danny is great with all his procedures yesterday :). Surprisingly he came up to the room awake, I hadn't planned on seeing those baby blues till some time today. He came up to the room about 6:30pm, on a vent, with out his PCA (pain Pump). So things were a lil crazy trying to get him settled and comfy. Thankfully he has nurses that are already "seasoned" by Danny -LOL. They were/are wonderful with him. Once again it helps ease the admission when you have friendly/familiar faces that know most of Danny's Lil curve balls. Unfortunately we weren't as lucky with the RT and NP at admission/during the nite - so the nite wasn't as smooth sailing as I had hoped but all is WONDERFUL this morning. Once I saw Danny's #1 RT walk in the door I knew things were going to go better for Danny's recovery path. Jackie is AWESOME!! We LOVE her as she knows what needs to get done, she follows through, she is patient, and kind and on and on. With Danny she is His ROCK - RT is so important in Danny's world :).
The med port was placed in Danny's chest for the second procedure. The surgeon said that it was a lil trying to thread the catheter under Danny's clavicle but he was successful in getting it in the optimum spot. Go figure Danny presenting a challenge to the "new" doc. As this is the first time Danny had to be seen by a general surgeon. I know I can't believe it myself, but all the other surgeries or procedures have been done by a specialist. They haven't accessed the med port yet as they left the PICC line still's an access he already had so why pull it until we know for sure the port is going to be a good thing for Danny (ie infection or allergy reaction).... just in case we have access as they tried to get an IV in during surgery and they were not able to.
Then the ENT took a look at his ears once again. They still did not look the best especially the right side. There is still granulmona and scar tissue in the right ear. So Danny got his ears deep cleaned and new hypo allergic tubes in both ears. Once the tube was put in the right side a lot of blood started draining out of it, YUCK!
The day nurse and. Ite nurse was herd in the room when he came up from OR so Danny was tag teamed. It was a good thing as he was a Lil high maintenance once on the floor. From bleeding out of the trache, out of the ears, the wound dressing was filling up with blood, getting the PCA on the floor to get him more comfortable they had their hands full. Danny just loves getting all the attention.
The ear drainage has slowed down a lot and he is no longer bleeding out of his trache :). His incision site is still touchy and along with his blood work being a lil off this morning he might need some blood product to boost him up.
The best news is, he is OFF the VENT. Last nite was awful with Danny being on the vent as he fought it all nite causing more grief then good for him. Danny breathes so slow and shallow when sleeping the machines don't recognize it so it will steal Danny's breath away when he really is breathing...then causing the machines to alarm and on and on. We went through weeks n months of this when they wanted Danny to be on the C/Bi-pap. Once Jackie came in and saw he was on a vent she did her thing got him off the vent, in a matter of minutes and he is resting and breathing comfortably :). It's looking better for sleep tonite-wooohooo. I've been up since 2am so it's a Jammie/nap day today...visitors beware -LOL.
I feel a headache coming on.....can't imagine why? So looks like my nap time is near!

Tuesday, April 19, 2011

Hip surgery is done!

Danny is doing GREAT! Dr Tassone came up to the room around 5pm (Danny will be in 410) to let me know his part is finished. Everything went well. They took the screws and plate out from the first hip surgery in Dec 08 and then removed the head and part of the femur bone. Once that was removed he flapped up the muscle in the empty space to use as a cushion. Once the doctor was able to see inside he said that the dislocation actually started to wear down the bone which can be painful. Boy it hate it when I'm right - sigh. Now hopefully Danny will be in a lot less pain. Danny has about another hour to go in the OR and then they will bring him right back to the room from the OR. I can't wait to see him
I'll post later

Danny's in surgery

At 3:20pm Danny went into the OR. The procedures are to run about 3 hrs. First Dr Tassone will be doing the hip, once he is finished a general surgeon will be coming in to place the med port, then the ENT will be going in to look at Danny's ears and possibly put
In new tubes. I will keep you posted
I got a phone call from "A's" school about 11:30 today. She slipped and fell in the lunch room smacking her head on the floor. UGH! She was a trooper and held out in school till about 1:30 and then I got another call she was in the office with a bad headache so Dad to the rescue he went to pick her up and take her home. Sigh - I wish I was there for her but I'm glad Dan was home so he could be there.
Never a dull moment!

Wednesday, April 13, 2011

Sunny Days

The grass is turning green, the warm breeze is here, and the SUN is shining down :) Breathe......... ahhhhh, how refreshing. I just love this time of year when LIFE comes back.
Yesterday Dan and I took a drive down to Waukesha to see a new Neurologist at an MS clinic in the Memorial Hospital. AMAZING and breath taking! I feel like a can breathe and relax alil better now. They get it! Dr. Smith is very understanding and knowledgeable. Not that the one I was seeing here in the Valley wasn't good......BUT this one is GREAT! I feel more a peace now that I'm giving it my best shot and whatever happens happens but at least I did everything I could. I'm ok with it......I'm sure I will have shitty days and just want to throw the towel in but I have someone more in my corner that I KNOW will pick me up and be there every step of the way. How many can say that about a Physician? I've worked so hard at giving Danny and Avrianna the BEST physicians, it was time for ME to do the same and it feels as if a load has been lifted. I guess I just thought it's was ok for me to have a doctor, but to have a PHYSICIAN wow what a difference. Do you know what I mean? I am NOT doing this alone. I know I have Dan, my friends, and family but as I say with Danny, if you are not living it you really don't get it. I learned so much in the hour I was there with her then I have ever in the whole 2 yrs since I've been diagnosed with MS. It was refreshing to have Dr. Smith confirm alot of my suspicions about what been going on with me. It was great for her to tell me how beautiful a women I was, how feminine I looked, how she loved my attitude, and how I composed myself well that she wouldn't have known I had MS. I know it sounds weird but it was uplifting for me. Even though some of things weren't easy on the ears to hear about like the progression of this disease, how bad my symptoms are, and what is probably in my future. BUT I know I am giving it my all and I'm ok with whatever I am up against. The only "bad" thing is that I will be traveling down to the Milwaukee area (about 1.5hrs one way) more as I have to be there once a month now for myself and then we have all of Danny's specialists n procedures at the Children's Hospital. I am a pretty good coordinator, if I don't say myself, so I'm pretty sure I will be getting as many appts on one day as I can. It's always a busy day then but then it's done :) It was so nice to drive down with Dan yesterday, with the sun shining .... Thanks for going with me it was a great day hanging out with you :)
Danny is doing ok....he has been hit with the allergy monster (as ALWAYS during this time) so we are been very diligent on meds and treatments. His secretions have increase and become very thick. We don't need him to aspirate on it and get pneumonia as his next surgery is right around the corner on Tuesday to remove the head on his femur and, have a med port placed. I'm telling you never a dull moment here.
Avrianna continues to be a social butterfly so she's normally on the go. She can't wait for summer and asks me over n over again when we are going to get the pool up. Well it's expected to have snow (yes I said it, grrrr) on Saturday. REALLY ~Why do we torture ourselves with this weather here in Wisconsin? Two days ago it was in the 70's....seriously who pissed off Mother Nature. The weather here and far is so off the charts lately.
We are attempting to plan a summer vacation which is exciting but it depends on when Dan has his fire school training and IF we are all healthy. Wish me LUCK with that!
Thanks for stopping by to check on us. As always we LOVE having you follow our journey in this crazy world we call LIFE.

Wednesday, April 6, 2011

Danny's New Ride

So what do you think? Danny is going to be one stylin kiddo :)Roll the chair up, lock it in place, and he's off ~ So COOL!APRIL FOOLS! It would be cool though :) Aleana thinks this is in Danny's future, hahahha...I'd like to see her chase him down the road, now that would be priceless!

This is his new Ride..... 2011 Toyota Sienna that we got from Mobility Works in Waukesha,WI equipped with a Vision conversion.

It's a green/grey color ~ really would there be any other color I would choose, other then possibly lime green. LOL
The rear hatch opens, the vehicle kneels, and the ramp fold out all with a touch of one button.
The middle of the floor is cut out, and it's equipped with full size Captain chairs that fold up for the second row seating, and a two person fold up bench for the third row.
Here you can see the seats folded up ~ the sunroof ~ the rubber floor where it is cut out ~ and the TV for the kids. Plus a better view of how the seating is when it is folded up.Installing the EZ lock system in the right place for Danny....just roll him in and the bolt under his chair locks into the base and whala he's in. We have a lap belt for him too, it's not needed for this system but I feel much safer with it on :)Danny trying out the placement of the EZ lock system
View of the passenger second row folded upWe are enjoying the new van and all that is does.....We're so spoiled :)

No more BIG Green Bus for us......this was a wonderful change to our suite our family !

Tuesday, April 5, 2011

Here We GO again

The talk of the 4th floor......Lil Man and his blanket. It was a HIT!Danny getting and pep talk from Dad about behaving himself ~ right before Dad had to go back homeHe grew once again! Boy he's growing up WAY TO FAST The reaction I got after I told him ... he gets to go home :) Priceless!Danny's new War poor Lil ManWe hit a record ... shortest stay after surgery. Danny was discharged on Saturday afternoon a whole whopping 24 hrs after surgery. I can't believe it myself! Our hold up of all things was once again getting the TPN on order and delivered to our house. They had to call in the pharmacist to make it for Danny and it was too be delivered to the house around 3:30-4:30 but it didn't arrive till 8:30pm, ugh. I was so tired I decided to wait to hook him up in the morning. We were all so happy to be home and sleeping in our own beds. Until next time couch/ will be missed, NOT! After giving report to Aleana in the morning she did her assessment and much to my surprise she stated "He had bowel sounds". Music to my ears...weird, when did bowel sounds become the highlight of my day? Needless to say we gave formula a try.....Danny ROCKS ~ he tolerated his formula so NO TPN is needed this time around. WoooooWHooooo!
The injection in his hip is working to relieve his pain so the Dr's are confident that it is indeed his hip giving him all the grief. I totally understand the reasoning of the Dr's wanting to confirm the unknown for before such a big surgery, but I was totally confident of where/what the source of Danny's pain was and I just wanted to get it taken care of during the last stay and then he'd be done. Now with that being surgery is scheduled for April 19th at noon. Once again there will be a few things getting done while he is under anesthetic.
The orthopedic surgeon will be doing a Girdlestone procedure....which will be HUGE not only as a procedure but for Danny. The Dr will be removing the head off his femur so Danny will no longer have a dislocated hip, it will then be called a "hanging hip". I was really torn on what to do with Danny's hip and the discomfort he was having daily. But through lots of soul searching, research, and opinions of others I feel this is the best for Danny. After already dealing with hip surgery that failed and multiple attempts to relieve Danny's discomfort this new procedure will definitely take care of his hip pain forever. BUT with a cost...his bone will be cut off and he will never be able to weight bear. I have come to grips that Danny will never walk and he can't or doesn't have the ability to stand so I need to make him comfortable and give him the best quality of life I can.
The ENT will be popping in to recheck Danny's ears and make sure they are healing nicely and deep clean them again if they need to be.
Then a General Surgeon will be coming in to place a med port in Danny's chest. I can't believe I've gone through something before Danny did. With the limit sites available via PICC having a med port in should be an easier route to go. Now we don't have to bring Danny in before each procedure for a PICC line in hopes the find an access and no more multiple picks to get a blood draw.
So stay tuned and I will keep you posted with our hectic lifestyle. Thanks for stopping by to check on us!

Friday, April 1, 2011


Danny and I went to go to pick up the new van before he was to have his PICC line placed yesterday. Once again I get lost driving in unfamiliar territory, geeez. The new van needed to have the ez lock system put in place and that couldn't get done without Danny and his chair there to make sure it was put in the proper place. They needed some extra time to get everything in order, so I went to get Danny's PICC line in first and then I planned on coming back to pick up the van once Danny was admitted and things settled down. Once again....yeap you guessed it, I got lost trying to get to the hospital, grrrrrrrr. Thankfully went I called my friend Shandra she answered her phone, stayed on the line with me and got me to the hospital .... I love Shandra, Thank You so VERY much. I got to the hospital just in time for Danny's PICC line. He was a trooper! No sedation was required - So a BIG balloon was needed for his bravery :) the PICC was to be placed in his right arm, but unfortunately there were no usable veins for a PICC anymore on the right .... They were able to get one in his left arm, but I was told there were slim pickens on the left too. The woman in IR asked if I was ever asked to have a med port put in on Danny. I just had to chuckle as I was trying to get one done but ...... It didn't happen :(. Once Danny was done down in IR we went right up to the floor and they were ready for us :). Danny is in room 412 in ICU. We got him all settled in and then was off to go get e new van, but this time I was smart and brought Shandra with me.....I didn't get lost :). Bonus after we picked up the van, we got something to eat at Texas Road House, YUM! We had a nurse last night that is familiar with Danny which makes it so much easier and less stressful, now if they can just get those chair/beds more comfortable and we are in business. Needless to say I didn't sleep very well, but don't worry the cold showed (due to no hot water) woke my ass right up. Amazingly I was done getting ready before the doctors started to funnel in:) mind you I am very slow to go - lol. The PICC line was no behaving last night and clogged, nothing a lil TPA could handle - phew. Now I need the PICC to work until the port is poor Lil man has my crummy veins, sorry sweetie. Danny was wheeled down first thing this morning (it's so nice being the first case ... No delays). ENT had there work to do on Danny first - trachea scope and check ears. The scope was wonderful, his trachea looks AWESOME and no changes need to be done at this time. The ears on the other hand......left one was ok, it just needed some deep cleaning. But the right was "pissed off"...leave it to my Lil Man to develop an allergy yo the tube in his ear. UGH! The tube had to come out as there was granualnomia, puss, inflammation, and it was bleeding. Oh my poor Lil guy, that had to hurt like hell. Ear drops and pain meds for that. Then Ortho stepped in to do their part, first the rod lengthening. Danny grew 1" on one side and a 1.5" on the other to compensate for the curve. They flipped him over back onto his back and did the hip injection. All procedures went well without a hitch :). BUT in true Danny form his wake up time from anesthesia was slow to go. He required RT to breathe for him for 20 minutes after he was brought to his room and I finally saw alil peek from the crack of his eye lids a whopping 4.5 hrs after he came up to his room. Do NOT disturb was the only thing going on in Danny's mind. His incisions look great :). His right ear still bleeding but it isn't dripping out of his ear anymore so it must be slowing down, my poor bug that alone has got to hurt. Danny traditionally has GI shut down after anesthetic and this time is mo different ... No bowel sounds :(. At least they know this and TPN is already running. The plan is ..... I'm not sure. They are looking to see the schedules of a general surgeon to place the med port and the schedule of ortho to see when they are available. I already can have walking papers to go home tomorrow, but if they can coordinate ( which is highly unlikely, but you never know ) a time first part of next week they would like us to stay. Like I have nothing better to do with my time, right? So we will see, but I can almost bet we will be going home on TPN in our new van tomorrow :). I will keep you posted!