Thursday, December 22, 2011


8 years ago I wasn't prepared for .............. for what was about to happen to our family, the next day. I could have never been prepared for how devastated we would be and how fast our lives would spin in a tailspin. How can one be?? I was so clueless! Our family would NEVER be the same. I was prepared to bring my sweet baby boy into this world happy, healthy, SAFE!! IF only........ I had a crystal ball.
I stare at this picture more then I care to admit ~ This is the last picture I have with my baby boy healthy n safe and I can't even see him. But I know he's in there with everything working like it's suppose to... all his fingers n toes are wiggling, he's sucking his thumb, his brain is functioning, he's moving and kicking around in that small area (he's moving more in there then he ever will out in the BIG world). I was so excited and happy I couldn't wait to see my bundle of joy.
This is MY day that I set aside for myself! The day before Danny's birthday is My day to get it all out! To grieve for all the lost dreams that I had for my son and family. Everything that was taken away... in an instant it was ALL GONE. And once the damage was done there was NOTHING I could do to get it back or make it better! Today is the day where I can be ANGRY!! Angry that this happened, angry how it playing out, angry there is a world out there that my son will NEVER participate in, angry that he has to go through life in fear and pain, angry I will NEVER hear him say "I love you Mom"!! Angry that Avrianna will not have a "normal" relationship with her brother, angry that she has to worry about her brother more then she should!! Angry that I have to keep in the back of today the day? The day where I will see his baby blue eyes looking back at me for the last time. Angry that I have to keep this fear bottled up inside me EVERYDAY!! Today I pop the cork and let myself be sad. I GET to be SAD!!
Don't get me wrong I LOVE my son more then words can express and I would give anything for him. But I just wish he has what every parent dreams for their child .......... DREAMS! The dreams that he doesn't know exists :( I need to let it all out to be able to start a new, wipe the slate clean, a "new year's resolution in a way.
I did EVERYTHING right! So WHY!?! Where's the logic? Where's innocence? Where's the life I dreamed for my SON!!
This picture is the first I have of Danny, out in the Big Hard Cruel world! Fighting the ultimate fight~ one that no infant should ~ there was NOTHING I could do but hope n pray. This is Total helplessness! This Lil boy you see here will never be the same as he is forever broken. He was brought into this world and taken away injured and never fully repaired..... As you see the brain can NOT be fixed.
This picture has such raw emotions for me.............You can't even imagine! I am reaching out touching my precious Lil boy with only my finger tips wondering if that will be the last time he will ever feel my touch. Does he feel me? Does he know I'm there? Does he know I'm sorry? Sorry just doesn't seem to fit but that's all I could say, is sorry ~ Sorry my precious boy you may not make it through the night .........sorry you will never have what I wanted for you, sorry I will never know who you truly were. Amazing how all that can run through your mind in a matter of moments. How does one ever recover after something like this? Do they??
I wasn't able to hold him, talk to him, Kiss him, let him know Mommy loves him. All I was able to due was Just touch him with my finger tips....Will he continue to fight? Why would he, I'm sure he was scared, cold, and all he knows is pain. He isn't even breathing on his own, will he ever breathe? Then you sit and wait and wait it's so quiet, it's so alone, it's so helpless. I remember after getting the grim prognosis just crying out "OH my sweet boy".
After the dust settles you just want to scream WHAT THE HELL HAPPENED?!?! As it's goes by like a flash but will leave a lasting impression you just can't shake. I am forever scar'd. How terrible is that, on the day of your sons birth and even though he's here.....there is nothing nice to say? Traumatizing !!! Guilt!!! I too am broken :(
I look back at his 8 years of life and the Lil Man he's become. It's all at a very hard and painful cost, over n over n over again he's overcame diversity and medical prognosis'. We've fought the fight and we'll keep on fighting! I was trying to figure out how many times he has had surgeries (I should have kept better track of them) but I think this last one was 37. AMAZING!! What a road it's been and I'm grateful and thankful I am able to walk the road with him. I've learned so much from him and I've met some pretty amazing people along the way.


Tomorrow I will celebrate your birth, your life, your accomplishments, our New Dreams!
Danny ~ You ARE AMAZING Lil Man and my hero....I LOVE You and will ALWAYS be there for you Danny ~ Mommy
I know you know different.....I just wish you didn't have too You are my Inspiration!!

So now onto some updating ~
Danny's new wheels :0) We got it yesterday, just in time for his Birthday! He's only sat in it for a few minutes and I've had it in the house for less then a day, BUT this chair (so far) seems to be IT! All the little bells in whistles that Danny needs, but in a fun and functioning version. It's got everything plus it folds (somewhat) and is light weight! Not to mention the awesome color, heehe.
It's a Convaid Rodeo Tilt n recline :)
Thanks to Peter from Walking and Wheeling (Danny's Private PT) for setting us up with this sweet new ride :) I hope to put many miles on it
Yesterday Danny also got his staples taken out. The incision looks good. The area around it is alil angry as I believe he is reacting to the ointment we were putting on it. So we've changed to a cream in hopes that will help. He heals so well....I just wish his system would bounce back as fast. He continues to dance a fine line but we are able to control him at home. We still are making strides to recovery but it's 2 steps ahead and 1 back....but it's still forward :)
We did some labs on Danny at the clinic and all of them have chilled out and are reasonably back to "normal". We were able to discontinue the TPN and Danny has been tolerating his formula at full strength now we just have to work back up to his usual routines. That might take awhile but we will be working towards it each in every day.
I've been every busy working at the school with all the holiday festivities going on. Tomorrow is Avrianna's last day before winter break. I know she's excited about that as they are having alil pizza party and then no school for a week. Too bad we have no snow yet for the kids to play in over break :( It's going to be a brown Christmas over here. I am officially done with buying gifts and even the wrapping so let the Holidays BEGIN!! I do have to say I was sweating it a bit as I'm usually done long before this so I'm relieved to know I was able to finish WITH some time to spare.
Dan is busy building another laundry in Oshkosh on top of finishing his certification for Firefighting. He is hoping to have the laundry up and running near the beginning of February, but we'll have to see. My garages are FULL of laundry equipment, but don't worry I still have a parking stall inside :) And you guys say I'm the crazy one......I beg to differ, LOL. So he's not to disappointed that there is no snow from him to remove throughout the day.
I'm sad that our lifestyle just won't be fair for us to adopt. A few month back Dan and I had looked into the process again, but with the recent events around here that helped refresh me with previous events's just not fair to our family to add to our craziness. Nor even fair to a child that we would add to our family with all the hospitalizations that I'm pulled away for. It wouldn't be so difficult if we weren't inpatient so much but we are so unfortunately we are not going to pursue adoption now. See it as selfishness or selflessness as with this one I'm not so sure which way of the spectrum it lies. Our lifestyle isn't easy....but it's US!
Thanks for stopping by to check on us! You are my saving grace, my outlet. If it wasn't for you guys and the support I get I would be even more crazier then I already am, heehee
Merry Christmas & Happy Holiday

Thursday, December 15, 2011

We are HOME ~ Pics ~Update

Seeing I wasn't able to post pics on here from the Hospital's network, and now that we're home I thought I would update you guys that don't follow me on Facebook with some pics.

Mr Hot box in the local ER ~ We left there with a Dx with Tracheitis, from being there for 6 hrs
Mr Kissy face the next day down in CHOW after being admitted for Pancreatitis The next days ultrasound showing ~ 3 Gall Bladder stones along with thickening wall and sludging. I'm not sure how they see all of that but I do see the 3 stones. I was told that this is an issue that needs to be taken care of, BUT it may not be the reason why his pancreatitis flared.My beautiful baby girl all dolled up to sing in the Christmas Concert for school
What a great Concert it was....I'm so glad I went :) I missed her so much. I'm so proud that she is very good when I am gone.
Our suite for the 11 days.
This is the first time he's ever been stapled. I thought they used the same incision as the Nissen but they ended up lengthening it. His very bloated tummy, sporting his new Gtube pad.
A couple day post op looking very good ~ especially with his blue new Trache n Gtube pad :)
The very large Hematoma in his groin from the CVL they put in just in case he needed blood or other things for extra access. Which is as painful as it looks for Danny's reactions :(
I can't even begin to tell you how exhausted I was last night slipping in my OWN bed. I don't even remember my head hitting the pillow. We were discharged Wednesday morning and we were unpacking the very full van (how does one acquire so much stuff in the hospital?) by 12:30 :) I was on a mission to get it all done before the Home Health company came by with all of Danny's TPN and IV supplies. Even though we are home he still isn't running on all 10 cylinders yet, but we are comfortable with doing TPN and blood draws at home. We sure are an ICU room now....all the pumps, vents, incision care, monitoring and Port access. It's all worth it just to be home :)
We did run into a snag with the Home Health company that brings his supplies. I had called once I noticed the supplies I ordered, before we were admitted, weren't here at the house. I was told they are no longer going to support us with Danny's supplies or equipment because we went with a different Home Health company for his Vent. Mind you they changed manufactures on their vents and CHOW doesn't support theirs I had no choice to go to a different company to get what we needed. This my friends was their "out" and wash their hands of us. They don't make enough money off us ~ so drop us this first chance they could. Gotta LOVE the system~ NOT! Of course the cowards didn't tell me this when I placed the order and I had to find out when I'm OUT of supplies. One being his formula, sigh! A formula that I just can't go buy at the store because of his allergies and sensitivities. Luckily I found out the pharmacy will order it up for him :) What a pain in the ass, I have worked with them for the last 7 years you'd "think" they would respect us enough to not jeopardize my son's health an weal being. WHATEVER!! This coming from a company that I used to get EVERYTHING from, his supplies, food, the ceiling lift, the wheelchairs, the standers, everything. Their loss as I will NEVER go back to them, EVER!! Not how they treated us in the end and it's over something that was out of my control....they couldn't get us what he needed.
Well I'm not sure how LONG we'll be home as my Mr Social Butterfly. I believe, is planning a Round Robin to head back to CHOW. This morning something triggered him to go into a screaming mess. He was crying, spastic, sweating, tremoring it was very scary to watch and VERY heartbreaking. His RR was 84, HR 184, and sats slowly decreased so we called up Dr Kasper for his wise words of wisdom cuz Gail n I were ready to call 911 (I wasn't going to call Dan and see how long it was going to take him to realize his pager was dispatching to his own home....Yeah I know mean, but kinda funny??) Thankfully Dr K picked up the phone and ran right over to our house. We gave MANY drugs to help him with no such relief so we doubled some of them and then it kicked in. He was snowed finally which meant he needed to go back on the vent cuz his sats dropped down to 76, seriously my nerves are shot!! Unfortunately the med relief hasn't lasted too long as I see he's trying to open his eyes, I just hope he stays comfortable. He should have been out for hours, but no! I'm not sure what today is going to bring, but we'll have a better idea once the labs we drew, while Dr K was here, are in. Needless to say my mind is thinking I should start to pack up the bags again as this party might continue back down in CHOW. I DON'T want to go back! Even though I've been just talking up the wonderful care we received this admission, I don't want to go back this soon!! One day home just isn't enough for us. What a roller coaster ride this has been the last 2 weeks. I'm not sure how much more I can remain "stress free" ~ HA! before my MS starts to act up. I know I'm not running on all my cylinders either, but I do know I can get alot worse too :( The roller coaster is set in motion so hold on....hell put your seat belt on too.
Please keep my family in your thought n prayers. All I want for Christmas is .......... HOME together with ALL my family!

Sunday, December 11, 2011

Moving in the right directions

Danny is doing amazing recovering. Since surgery all his pancreatitis numbers have calmed down and he is back to "normal". This is wonderful which means the trigger for this attack seems to have been the gall bladder. Which going into the surgery we all weren't too sure if the gall bladder problems were in fact THE reason, we knew it was a problem that needed to be addressed but was it the problem driving his pancreas to get angry. With Danny having multiple medical complexities it is not a cut n dry thing with what could be wrong, so my best option was to remove the one potential trigger that I KNEW was going on. Now because the gall bladder is out it doesn't mean he won't have another episode but I can only hope. The surgery went well, the gall bladder wasn't "impressive" (as they say for bad things in the medical world), and his labs are continuing to regulate. His pain meds are needed further apart which is a great thing, but his his BIGGEST hurdle today is pain driven from coughing and wretching. It's very difficult to watch him cry, it's just breaks my heart. I used to think that since the trache it was hard to watch the "quiet" cry but now the cries where he can actually push air up n out to make squeaks and whines are MUCH more heart breaking. The "plan" today is to start up zofran to help with the wretching and change his meds back to oral from IV. Thankfully he is still on TPN for nutrition so most of the meds he he normally gets at home are in the TPN as they are vitamins that he lacks. This is a HUGE step to going home is if tolerates his meds via gtube. We can do the rest of recovery and getting back to normal at home once he is ok with meds in the gut. He'll need to
****med in gut did NOT work this am, poor bug. Another time :(******
Well this is alil set back, but we're still doing ok. Slow n steady is the game Danny plays. He IS being on his own already so we know one system is back up n running :). The wretching has gotten pretty bad even with the zofran, how painful after an abdominal surgery, so I hope it subsides soon.
We've learned that Danny grew a new strain of pseudo in his trache aspirate so he's been put on an antibiotic for that....funny they now had him a dx for tracheitis when we really came in with it, but the pancreatitis and gal bladder trumped it :(. Infectious Disease also found him positive once again for VRE, which I'm totally bummed about. He got this wonderful bug from a friend his nurse was paired with in the crash of '09. Danny needed to have 3 negatives with a certain time frame not on any antibiotics so it s taken this long to get all the tests in. The one would have been the last negative he needed to be out of VRE isolation, but unfortunately it came up positive :(. I don't think we'll try the process again and just bow down to being in isolation forever. It's not a bad thing, meaning the opportunity to pass him more bugs is less likely, but I'm said that he can't have "fun visitors" like the therapy dogs or baseball players come in when they are here. Isolation on top of being inpatient is just another stressed as you just feel like out casts with all the gowns in gloves they need to where to just come in. I feel bad for my Lil Man ...... That no one will touch him in house without those blue gloves n yellow gowns that are so "inviting". You know what I mean?
Dan and Avrianna came down yesterday evening and it was nice to see them. But its a bitter sweet to see them and then watch them drive away, usually with tears in both Avrianna's and my eyes. I miss them so much :). It's never an easy time to be away from your family, but luckily I so blessed that Avrianna does really well when I'm gone .... Wish I could say that about Ms Bailey this time. Yesterday would have been Danny's 8th birthday celebration party and it makes me very sad that we had to cancel it. Just means we will need to plan a bigger n better party later :)

Friday, December 9, 2011

Surgery Update

The general surgeon came to talk with me right away. He told me the gall bladder had to be removed BUT we could wait if we wanted to have it removed. He wouldn't push it off more then 6 weeks, but we could wait. Even though the proposition sounded good to NOT have surgery right away the idea of going home and having to come back, possibly emergency, didn't sit well with me. So he was put on the surgery calendar for Today. It was suppose to be at 3 this afternoon but I'm thankful they were able to push it up to this morning. I was afraid that it might not happen as last night was alil rough on Danny. After his Mr Jiggles treatment last night he went NUTS with shaking, breathing fast, fever, high heart rate which required more pain meds. He finally calmed down and slept, but was up at 4am doing the same thing. Pain meds were given again and he did coming back down to a more Danny vitals.
They came to get him around 8am but the procedure didn't start till about 10, as I guess I was right on with telling them his internal anatomy wasn't right cuz 5 attempts with ultrasound/X-ray and 1.5hours later he presented to be challenge for his 2 extra lines. The thought was he needed more access then the med port for all the meds, anesthesia, and blood transfusion for surgery. Thankfully the extra access was the only challenges for his gall bladder removal as everything went well and he didn't even need blood. The incision site is where his scar is from his Nissen/fundoplication so there is no extra "war wounds". Woot Woot! They are keeping him paralyzed until later today or even till tomorrow so he reminds comfortable for alil while longer. He looks GREAT!! And I'm so happy he is back in his room where I can be at his side.
The surgeon needed to do an "open" procedure because of the location of the gall bladder and the ITB pump. It would have been too risky to do it laparoscopically so his surgery and recovery is going take longer. They stapled the incision as this procedure has a higher risk of infection so with it being stapled it will allow any bacteria to ooze out easier rather then being sealed in.
Anxiety was high this more I'm not going to lie. You would think after all the procedures he's gone through it was start getting easier...but NOPE! On the contrary It was very difficult. I am glad I saw his labs from this morning as my anxiety was eased (a little bit) because his labs shown his pancreas & liver markers were starting to increase again. Possibly the reason why he was irritated last night. It needed to be done and now he can start the road to recovery
Thanks for following us and keeping Danny in your thoughts n prayers.

Tuesday, December 6, 2011

Gall bladder

The ultrasound yesterday has shown stones in Danny's Gall bladder, sludging in the gall bladder, and thickening of the gall bladder wall. This explains A LOT with some of this issues that Danny has been having (not just with the acute issues). In talking with Palliative and Dr Kasper we feel the best option for Danny is to have his gall bladder removed. I will now have both kids that will be gall bladder free, avrianna has hers out on Dec '08 steming from her blood disorder. The surgeon has been paged to get consult and then we'll get a game plan. Danny's pancreas #'s number continue to go down with The gut rest so Now that surgery is in his very near future I can bet they are going to start TPN for nutrition.
During respiratory therapy this morning Danny stared to bleed from his trache, ok really?? Theory is a few things (suction trauma, trauma do to cuff being inflated so much because of the vent, or there is something wrong with is trachea) so we wait to see how today plays out, if it gets worse or better with a few tricks of the trade, or is a more invasive approach needed. Danny is really reacting well to the pain long as they stay on top of them, Because he has a high pain tolerance they are apt to wait longer to give it to him. Which I am pushing to make it more scheduled so heh as a more restful stay. This morning he was breathing really funny and I couldn't figure out why till I realize he was clenching down from pain :(. Pain meds were given and he is breathing much better :)
Last night I drove home to go to Avrianna's school christmas concert. I'm so glad I went! It was so cute. I am so proud of her :) Then afterwards it was back to the hospital. This lifestyle SUCKS and I don't wish it on anyone. To be separated from your family is just plain awful :(. I can only hope we are not here for a very extended stay. I am even more thankful that I am done with my christmas shopping so I don't have to power shop when we get home, or even worse have nothing for Christmas. I have some wrapping left to do and then I'm finished.
Unfortunately I have to leave Lil Man for a couple hours today to go get my MS infusion, but thankfully it's right here in the Milwaukee area so it won't be too long for me being away. Today we have a nurse that is framiliar with Danny so it makes it alil easier to leave. This hospitalization is really testing my trust issues as you all know I NEVER leave him alone while in the hospital, so my anxiety levels are HIGH.

Monday, December 5, 2011

Go BIG or Go Home

And boy does Danny do it BIG! We are currently inpatient at CHOW rm# 507 ICU with tracheitis and pancreatitis. I have one sick Lil Man :(. So let's back track a few days a give you the scoop. In my last post you knew Danny was still so so and still wasn't back to himself. Well Saturday afternoon it all came to a head, once I got home from Avrianna's swim meet.
Off to the local ER we went with a fever, breathing like crap, and seizures. We sat there for about 6 hours and the verdict was tracheitis. As he sputium tests grew out moderate WBC, gram + rodes, gram + cocci/strep, gram - cocci, gram - bacilli, gram + cocci/staph. Pretty much anything that he could have .......he does :(. Where in H€\\ did he get that!! They gave him an IV does of cypro in the ER and said that because we had a great support system at home we could go as long as I felt comfortable. Which we did, but not before we had a full blown grand mall for them to see, nice Danny real nice! Thankfully the rescue med worked and they were STILL comfortable with us going home. We just needed to keep him on the vent for support, treat fever n seizures, and go out in the am for oral cypro. Home we went :) ,but we knew if he got worse we'd be coming right back. The next morning he was really not himself and was giving Aleana, RN some grief. I was at the last day of Avrianna's swim meet - which by the way she did fantastic, I'm so proud of her - 2 days 8 events 4 medals n 4 ribbons :). WAY TO GIRL! After the meet Dan was on a mission "impossible" for this ciproflaxin that Danny needed. He went to multiple pharmacies with NO luck. I called Dr K to see what he wanted to do next and then $h!¥ hit the fan, UGH!
Dr K checked over the labs n such that were done in the ER the night before to see if there was anything more definitive if the antibiotic needed to be changed anyways. No he didn't find that, BUT what he did find was his lypase #'s were high (normal 23-300) at 2644, YIKES! So Dr K called the lab to run a different test,stat, and it was high too, which means Danny has pancreatitis. So I got the "pack your bags you have to go south" :( As I was backing I get a knock on the's Dr K, how awesome is that!! He wanted to give Lil Man and pep talk AND me the blessing to drive him down by myself, cuz I didn't want to go via our chariot the ambulance. I got the thumbs up to go and off we went. About half way there Danny started wretching which made it for a long more stressful ride. Once we got to CHOW we unfortunately had to go through the ER, as we usually are a direct admit,but we were able to sit around and watch the Packer Game before the commotion.
While we've been here he reminds stable but still very ill. Thankfully his pancreas numbers have started to drop with just being NPO (gut rest). He is receiving his meds and hydration through IV, we will access tomorrow wether he can start small feeds or go on TPN. It all depends on what the ultrasound his going to have later says and want the labs show. He is having some issues with the amount of fluid thHimyarites him and he's now 3rd spacing and puffy and we are hoping his dropping hemoglobin is do to too much fluid and not something else, so they are going to decrease fluids and watch him closely. Ive signed papers for transfusion IF he should need it. Let's hoping it will recover after the fluids are lowered.
We sit and wait now to see how his system reacts to the meds to figure out what the next step is going to be. I'm not sure how long this stay is going to be :(, but my gut says its not going to be quick fix :(. I will be leaving this afternoon (yes I have to leave him alone in the hospital, yikes) to go see Avrianna's school Christmas concert tonight and then return here later in the night. I'm very anxious about leaving him here alone, as I've really had bad experiences but I need to be home for her concert. The timing really sucks for this inpatient, but then again there really isnt a good time for there? This weekend we were to have Danny's 8th bday celebration, but I needed to cancel :(. I'm very sad, but it is what it is and we just need to get him better. It's snowing here in Milwaukee so I will have to leave even earlier then I had planned, man this is so hard to lead him :(
Thanks for checking up on us. I will keep you posted

Thursday, December 1, 2011

Let the Holiday's BEGIN!

Our 2011 Christmas Card
Our 2011 Christmas tree :)Thankfully this year I am on my A game and was able to decorate the house inside & out over the weekend after Thanksgiving. I am NOT a Black Friday shopper, I use those 3 days to get the house ready for The Holiday's. Last year was a difficult one for me as I was in a full blown MS flare up and it took me about 2 weeks to get everything done. It took everything I had to get it done, but not this year! I was able to get it done over those 3 days AND I enjoyed doing it. YAY!!
With the Season of Giving our family holds onto tradition and gets SICK! Dan goes up Hunting and comes back not always with a deer, BUT he does come back SICK. Which in turn shares the bug with the family. Isn't that NICE?!?! Avrianna got it next, GREAT! She actually stayed home from school, which was the first time ever she's had to stay home sick from school. With the both of them not having spleens it's always hangs with them longer and hits them harder. STAY AWAY from Danny and I, who BOTH have crappy immune systems. I know what a family we make up ......dysFUNctional all the way baby.
My Lil bug trying to steam out the chills in her body, guess it works better in Momma's tub :)
Thankfully so far it hasn't effected Danny or I much. I think Danny is still battling his dysautonomia which was kicked into HIGH GEAR after this last surgery. But you wouldn't know it with his attitude :) The day after they grew his rods out 1.5" and his sitting up all by himself, smiling, and trying to talk.
Look what I can do ~ "All stressed out and no one to CHOKE". Love his sassy t-shirts :)
Even though he's been all smiles during the day....when the night comes it's another story. Danny has always had a hard time regulating his body temp which is why he likes to hangs around 93-94 degrees...that is his normal. Anything over 95 and his system goes into over drive...his body goes flush n sweaty, his HR and respers increase, and if we don't intervene he continues to increase his temps. Unfortunately with the amount and location of his brain damage he can't do it on his own so he needs someone to be his thermostat. Whenever he goes under anesthesia it just heightens his dysfunction of his autonomic system (dysautonomia) and this time it really has been an issue.
We are trying to figure out if it's to do with "Puff" ~ here's his new one LTV1150
This is really the first surgery he has had with "Puff" and we haven't found that prefect setting for Danny yet. Even before "Puff" Danny's had issues with heated humidification on the mask aerosol so I'm playing with the setting to see if it I can control Danny's body temps better through "Puff". The heater and the heated circuits on "Puff" are just too warm for what Danny's body is acclimated to. That's my theory anyway. Last night I brought out the fan to blow on him and lowered his heater temperature, which seemed to help. So tonight I'm going to try and disconnect the heated wire and just have the heater going along with the fan to cool him off. It's a work in progress and I'm on a mission to find out what's the best route for Danny ... even if it doesn't fall within the "normal" guidelines. I swear when you ask for options the "system" doesn't like to do anything that isn't written in black n white. Well Danny is ALL GREY people so lets think outside the box. Wish me luck as I know my support from the "system" won't have my back on this one.
Avrianna has her home swim meet at the Neenah High School this weekend. How exciting!! I'm hoping she does well seeing she hasn't been feeling herself all week. Her school Christmas concert is this Monday so she's been singing up a storm around the house to be ready for her on stage performance.
Danny's 8th Birthday celebration is right around the corner and we're very excited to be taking on a new Project this year. In Leau of presents for Danny we are asking his party guest to get supplies, toys, and gift cards for a local program that helps out local families who are inpatient. As I know ALL TOO WELL when going into the hospital you are not prepared, so this program puts together baskets and gifts to the parents and child. This project is very near and dear to my heart...Not only because I've been that parent, but because the Mom that created the program is a local friend. The program is The Princess Kylee Project and it was created in honor of ^Kylee^, by her mom, after Kylee's passing this spring. I had the pleasure to know Kylee in person and she will be forever missed. Please take a moment and stop by her website and see the wonderful things that they do. They just posted a new Hospital Holiday Wish list ~ if you'd like to participate in donating through Danny's 8th birthday celebration please let me know and we can work out how to get the items to The McGlin's. Danny's party is going on Dec 10th so lets work together and see how many great things we can get! What an amazing thing to do to not only to help out families, but to keep Kylee's legacy alive.
Thanks for stopping by to check on us! Pleas leave a comment or post to let us know you stopped by. We LOVE to hear from you as well. Happy Holidays!!

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.