Tuesday, February 9, 2016

Please hear me -

I write, not only to try and free my brain of the constant loop of thoughts, but in hopes to use this as a tool. After voicing my struggles I've found sadly many others having the same problems. With the help of my friends story I sat down and wrote "our story". This is in alil title more detail, but the jist of it I spoke out to the medical staff during rounds this morning. It was time for it to be said, before I blew my top. My hope is that they heard me. This is a teaching hospital and I plan to teach them to be humble. Maybe my calling is to be an ambassador to teach the newbies to find compassion and to have a vested interested in a world of chronically ill children.  I hope you like it -

To the Medical Staff

Two days before Christmas 2003 I was induced into labor excited to bring my baby boy into the world. Three and a half weeks later, he left the NICU on hospice due to severe brain damage that he sustained during delivery due to a physicians neglect.  So trust is not a given by me, it's earned. I brought home my son to die, cherishing every moment I could get as I was told it would take a miracle for him to make it to his first birthday.  As a result of the trauma he sustained at birth it has left him severely disabled physically and mentally Because of his brain damage, my son cannot walk, talk, or breathe on his own - dependent of a ventilator 24/7.
Despite his diagnosis' my son IS a human being with a beautiful personality and he can feel. He is aware of his surroundings which depending on the circumstances, can make him scared or feel enjoyment. His eyes speak volumes of how he feels. He has a smile that WILL light up the room. He speaks his own language you just have to see, hear, and read him. Please look up from your computers and books as he is a unique wealth of knowledge, just listen, not only to him, but to me as his mother and CEO of the Team.  I employ you to be apart of his team so please respect us.
As the parent of a child with chronic and complex medical needs, it's important that I be involved in all and any decision making with is care. If my son requires a hospital stay, please don't treat me as though I don't know how to care for him. Remember that I am part of the team and my vote counts in any and all decisions to be made. I can help by knowing his cues, inform you of his normals, and educate you on what's been done in the past, I live this life style everyday. Your 2 minute assessment of him in the morning doesn't give you the complete picture of how he is doing or what he may need.
Through the years I have learn how to care for him and I'm doing to best that I know how.  I am capable of changing out a tracheotomy tube, accessing a med port, and changing out a g tube feeding button. I know how and when to suction my son, give medications, use oxygen, and work with the ventilator. I can bag my son during respiratory distress or failure and I can preform CPR to continue his life. I have worked with home IV medications and nutritional needs. I was told he was going to die before his first birthday and he's going to be a teenager this year....I think I've done a pretty good job thus far.
Don't take it personal if I talk with his another physician on his team and we choose a different course than the one you recommended. I understand illnesses need to be addressed and treated but you may not see the importance of the big picture with ALL of his current medical conditions so treatment may need to be altered. Sometimes all I need for you to do is listen as I vent my frustrations and fears. I don't need you to have all the answers, I just need you to care and help me figure out the issues and treatments at hand. Make yourself available and know I will not bother you unless I really need your help. I'm very good at managing illnesses and treatments that most find overwhelming. I've learned more medical terms, diagnosis', and treatments then I cared to know, but I embrace every new challenge if that means having a quality of life for my son with our family.
Over the last twelve years, I've had the opportunity to spend a great deal of time in the presence of physicians. I've encountered the good, the bad, and the indifferent. You are human, not GOD. I have an exceptional team of physicians who provide the best care to my son, but One reservation I will always have is the good will intentions from new physicians as from my perspective a "doctors decisions" put us in this position in the first place. I know his team now is full of very special physicians who have done what they can to ensure that my son and family have the best quality of life under his circumstances.  They have not only cared for my son, but they have also cared for me and my family as a whole. They have supported me, educated me, and guided me throughout this journey my son and family are on. And for that, I will be forever grateful.
Be that kind of physician, be a physician who cares.

"You treat a disease, you win, you lose.  You treat a person, I guarantee you, you'll win, no matter what the outcome" - Patch Adams

You can follow our journey on our blog - oserofamily.blogspot.com

To see more stories go to Touchstones of Compassionate Care page. www.touchstonesofcc.blogspot

Sunday, February 7, 2016

Just keep swimming

Nothing too new to update, what can I say it's the weekend. Yesterday Danny had a good day and in the evening I climbed in bed with him and we watched Finding Nemo :). By midnight though his episodes presented themselves once again :(. Right away this morning he had another one but unfortunately the normal protocol they were using to treat these storms didn't turn his system down so they had to add yet another med.  Due to the new onset of episodes which have spiked his fevers to 102 twice (resulting in packing him on ice, yikes) in the last 12 hours they did more labs and cultures to make sure we are not missing anything.
I am happy to report the urine culture is clear, and we check that off the list of possiblities. His first blood culture finally grew out one of  the bugs in his blood stream, but not the species of it (multiple kinds). It took forever to get the culprit as it is a very rare infection. I'm not sure how he got it, but hoping we'll get a better idea once we know the species. The thought on the other bug (remember he had 2 showing up in The preliminary) is that it's being masked by this rare bug or it's already gone as they can not get it to grow out completely.  We'll have to see if it grows in any of the other 4 cultures that have been done in the last few days. I'm going to assume it's going to take just as long to get any answers from those cultures too. Other then sepsis which they believe we're going in the right track of  beating the infection, Danny continues to keep them guessing with his labs bouncing all over the place. Today's issues are his liver and pancreas numbers have elevated again, but his CPR has gone down - remember it's then weekend and unless you are coding you won't get much of a report/reply from the doctors. We'll have to see if I can track one down in the hallway and get their thoughts, if they have any.  I have contacted Dr K back at home and he's going to pull the latest labs n reports and see if he can figure out what's going on. Pretty sad when he has to look things up 90 miles away on his day off and get back to me when I'm sitting in a hospital full of doctors. Just goes to show how amazing our pediatrician is and how important he is in Danny's life. He really is NOT replaceable, I don't know where we would be today without him in our corner.
Tomorrow we'll have his dysautonomia dr paged to have him give us a better protocol to help treat these episodes now during his current illness and also for when we go home. Most of the meds they are giving him is via his line so we'll have to see if they can be transferred to an oral med or if we'll need to keep his port accessed.
Thanks for the continued out pouring support. This is becoming a slow process but steady and slow WILL win the race.

Thursday, February 4, 2016

Sidetracked

Monday afternoon Danny was admitted to CHOW for a video EEG to monitor an increase of episodes that he's been experiencing to see if they were seizures.   These episodes are becoming harder to treat at home with our rescue med regimen so they were starting to exceed our comfort level. We came to CHOW for the monitoring because of his regular neurologist in Green Bay wasn't available so we were lucky enough to have been able to have a neurologist willing to be willing to have us monitored here....with the incouragment of our palliative care dr.
Well in true Danny form while the EEG was on he DID NOT do what we were seeing at home. Those EEG must be theraputic. He did have bit n pieces of the episodes here n there but not all of what we were were seeing. DANNY!  I haven't heard much from the "eyes" in the sky (the monitors are called that as the room has a video camera and microphone so Danny is seen n heard while on the EEG....means I should behave myself) so I can assume that what we were seeing progress at home were not seizures but autonomic storms or dyautonomia episodes. Now to figure out what the trigger or why he is having them. Just before they came to remove EEG Danny went into a tail spin of an episode that we just could not stop. I personally have never seen an episode like that from him and I'd like to say I'd never see it again, but sadly he has had more and they are increasing.
SO........
Things have now sidetracked to figuring out what is going on and why his system has gone into overdrive. It was difficult at first to get the doctors here to understand my concerns as to why we're were here, as to trying to find a trigger for all of this as he didn't look sick. Well Danny showed them how sick he can get and how fast he can get sick. In an episode Danny will lock his tone, become red as a fire truck, spike fevers normal is 95-96 to 101 in a matter of minutes, breathing rate normally is 8bpm that increases to 50-60's, heart rate is normally 50's that will race into 170's in a instant, he will shake and now whenever awake his eyes are tearing. His system will NOT settle on its own so we have to intervene with meds before his system climb too high which could be ..... Well let's not go there.  To say this pulls on his moms heart strings is an understatement. Due to him being in bed and not moving around they put these cool leg massagers on to help, with circulation and prevent clots....well we noticed today that they have left both of his legs severely bruised from his knees down to his ankles, sigh
Labs, cultures, and X-rays have all been done and this is what I know right now.
- RSVP panel is all negative - yay
- X-rays haven't shown any improvement in his right lung pneumonia and might even look worse so there will be a follow up X-ray tomorrow morning - and they have increased his breathing treatment regimen
- His CRP (inflammitary marker) is high
- His White blood count is trending higher which is showing signs of infection not viral
- They are going to be checking his clotting factors as to why the bruising seeing his platelet numbers are improving. We had thought maybe they dropped more and that would contribute to the bruising but this is not the case.
- The first blood culture has grown out gram negative bacilli AND gram positive coxi - there is an infection in his blood stream. We still are waiting for the final results to get the exact organism, but it's looking as if his has sepsis. They are already started round of IV antibiotics in hopes to start attacking it all. They ran a second blood culture to make sure there wasn't any contamination in the first. They ran a third culture but that one was from a blood drawn and not off his port to make sure that this issue isn't just port related and not throw his whole system.
- A urine culture was drawn this evening and we won't have this results back till at best tomorrow.
- From being ill his body is starting to third space (retain fluid)
I'm thankful we were here when this all took a turn and that we can get on top of what's going. But we wait, we wait to see what we are actually dealing with and treat his storms when they hit him as him being ill is only hightening them. My hope is that once we get him better the storms will improve.
I will keep you all posted. Prayers are greatly appreciated.


Monday, January 18, 2016

2016 here we GO!

Dec 31st Dan left the house at 4am heading south to Indiana to pick up Av from her 5 day dive camp at Ripfest.  This was her 2nd time attending their winter camp and she just loved it!!  
They had a great facility to dive at
Can you find my Waldo?
What a great turn out of kids at the camp!  She is sitting down in the first row right in the middle in the shadow.
As you can see she worked hard, but still had fun. and made some new life long friends.  They were up everyday at 5:45 am then the day was filled with classes n speakers, dry land, workouts, and pool time (they had to drive 50 mins one way to get to the pool), until lights out at 10:30 pm.

 









As I was browsing the photos posted on their FB page I come across this one.  My first thought was OUCH......then I recognized the suit and thought SHIT that's my kid's leg.
 
Then next photo was of her showing off her smack wound.  She's pretty proud of it!!
Couldn't be prouder of Av and her sportsmanship and dedication....... She was Awarded the Athlete of the Week!!
 After the "meet" (they put on to showcase some of the things they learned), Dan and Av loaded up the car and headed back home.  It was a good time for her to nap :)  
 Dan left that morning at 4 am to Indianapolis and they walked in the door home at 6:30 pm.  So glad to have my family all back under one roof again :)  Happy New Years!!
 We started a new tradition last New Years Day...... I made a tin and through the year we put in messages of things we want to remember.  Then on Jan 1st Av opened the tin and read all the notes.  It was really fun and I'm so glad we did it.  I foresee more notes in the tin this year now that the others figured out how and what to do, lol
 Dan's long lost love..... We found the old version of Mario Bros in the Wii store so he's now become a gamer.  Apologies to the neighbors if you here some yelling and screaming.....it's just Dan playing video games, LOL
 Danny had to get into the Wii fun, so he played a bunch of Wii games too.
 He did NOT want to let go of the controller !!
 Well winter had definitely found us ...... I never get use to this weather!!
And the cold snap continues........
Never good when the frost is on the inside of your door ~ Brrrrr!
 Jan 4th I kick started the Nutritional program up to rid me of the holiday food slump.  I don't have a lot of weight to lose, but to get my energy back and start feeling better was a must.  It's wonderful!!  I am happy to report that Dan jumped in with me this month and we're doing it together, that's pretty cool!! My first week in and I had released 4 lbs and 6" so I'll call that a win.  I can't wait to see what great things have happened after 30 days!
Breakfast with the family as even Av will have a shake in the morning before school :)
 
My Aunt Bonnie had this wonderful placque done up for Ms Bailey.  She is definitely missed!  I swear I still hear her barking at the door some days to be let in :(
 Don King has left the building!!  What some Crazy hair ~ Boy did this Lil Man NEED a hair cut!  He's all handsome once again.
 Check THIS OUT!!  I have not seen Danny sit independently in YEARS ~ He's a ROCK STAR!!
 Av had a half day for end of the 2nd quarter and seeing Ms Emily has never been to a Tom's we took a road trip out for lunch :)
 2 ROAD TRIPS in one day!!!  Danny came to watch the boys diving invite Friday evening.  He is such a charmer!!
 Danny had his follow up appt with the Cardiologist here in the Valley on Thursday.  I have to say I was taken back by what we were told at this appt.  I was nonchalantly told that she thinks she forgot to tell me at the last appt (6 months) ago that his EKG then had shown that he had a heart attack at some time in his life.....................................................
I had to pick my heart up off the floor and was just in shock!  I got some information about it but after the appt is when all my questions started to pop in my head.  Unfortunately at the moment we can not tell when it occurred, but after my many questioned email to Dr K (who also knew nothing of this finding), they are pulling old EKG's to see if they can get a better idea of when it would have happened.  With all the things that Danny has endured, you'd think I would be handle things pretty well.  This news hit me hard, my Lil Man has had a heart attack!?!?!  How could I have not known!?!  Don't worry I will try my best to get to the bottom of this.  But his forever lengthy list of diagnosis' seems to continue to grow :(  In this EKG we have found that his heart now has more abnormalities, all things that are not too serious, but things I am definitely going to get more info about and see if I should more concerned then I'm being lead to believe.  Once again with his extensive list of issues we are going to have to figure out if the heart is actually the issue or if his severe brain damage is the driving force to this.   Lots of times this is the case and we have to figure out what came first .... the chicken or the egg
This weekend we had some nice down time ...... with the fireplace roaring pretty much non stop due to the extreme sub zero temps I took some time to start figuring out some plans for Spring Break!  Fun in the Sun HERE WE COME!!
 Looking ahead........I have a follow up appt with my Neuro in Milwaukee tomorrow and I'm anxious to see what her take is on the last MRI I had.
Then the next day it's back down to Milwaukee with Danny for a dental appt.  Not that I really want to go back to back days down to Milwaukee but he really needs to be seen by the dentist as we have found that behind his 2 front teeth (all his teeth are permanent now) he has 2 teeth coming down so that really needs to be checked out.  I will taking Danny back in for follow up x-rays the end of the week to check the progress of the Pneumonia he had over winter break....as I'm not sure he has completely recovered from that yet.
Av is starting ski club tomorrow, much to her dive coaches concerns (she has dive meet on Sunday). She is very excited to be able to get on the ski hills again as we haven't had the time to get there yet this year.  I just hope the weather warms up and most importantly pray she doesn't get hurt or we'll both be in hot water with her coach!!  Av met up with a great family here in the subdivision and she will be starting to babysit for their Lil girl.  I have to say Av is very excited to babysit not only to make some extra cash, but to hang out with the Lil girl.....she's a doll!!
This Saturday we are having a great opportunity here at the house, as a CPR/AED and BLS instructor is coming to due a class.  What a great time for some of my local nurses and friends get their certification.  Av and I will also be renewing ours too, just in time for her to start her babysitting career.
Thanks for stopping by to check in on us.  I hope you all are staying warm!!

Wednesday, December 30, 2015

Well.........

I have to tell you ..... a Holiday for The Osero's is always interesting!  To say the least.
Love these 2 elves of mine!!
 This year for Christmas eve Av and I went to my grandparents house for gifts and dinner.  A tradition that has been going on since I was a kid.  Unfortunately due to lack of space and the amount of people Danny and Dan stayed home.  I wasn't going to put Danny in a corner in a different room just so he could be "there".  It really SUCKED having to have my family split up, but I put that smile on my face and made the best of it for Av and my grandparents sake.  Ho Ho Ho
 Awe isn't she so cute!!
 Santa's helpers handing out the stocking that are hung with care.
Once we got home from my Grandparents place Dan and Av took off and went to the 10pm church service were Av had to acolyte.  I stayed at home with Danny and got his cares finished and ready for bed, as we didn't have any afternoon or evening nursing.
 It was a zero percent chance of snow for Christmas.  Well I guess we had a Christmas miracle because we got snow.  There wasn't a lot but just enough to dust everything white.

We must have been good because ~ Santa came!!!!!  Despite a long day and evening on Christmas Eve Av was up at 7:30 running through the house with Christmas music a blaring.
 Tradition around here is no opening of the gifts till she finds the Pickle ornament and Spider ornament.
 Pups enjoyed their treats while she looked
 She's very adamant that SHE will be helping Danny open his gifts and HE will be the first to open every year :)
 Meet DJ Dannys Healing Helper Bear.  He is amazing .... I wrote to the company and told them what animal I wanted and then all the surgeries that Danny has had and they went to work to give Danny a bear that had the same surgeries as he did.  So he had buttons in his ears for the perforated ear drums, med port button, g-tube button, he has a cuffed trache, heart patch, CP patch, name band with "Touched By Danny's Life", a zipper that opens in the front with a gall bladder and stomach that comes out, a zipper that opens in the right abdomen and a baclofen pump comes out, then a zipper on his right leg for his hip/leg surgeries
 Flip him over and his back also have zippers/scars for the back surgeries just like Danny!  This bear is AWESOME!!  Unfortunately they couldn't make the right leg shorter as they were afraid with the zippers in the area that shortened leg wouldn't hold up well.  They were amazed as this was the most surgeries done to one of their bears to date.
 Christmas morning is so tiring!!
 She's ready to open her gifts
 Hover board....that we will be watching very closely as I see some are overheating and a fire hazard
 Go Pro
According to her... "Best Christmas EVER"
Oh Boy, I have the EMS on speed dial just in case ~ LOL
Pups are ready for the cold temps to come now



 Tradition here is after gifts are open we put on a spread of snackies for the day and veg away in our jammies playing with our stuff.
 And just like that.....the fun and relaxation for me was.....OVER.  At noon on Christmas morning it was like a switch turned on and multiple things started effecting sweet Danny.  He started Wretching, having neuros, breathing was difficult so he was put on Oxygen, he stopped producing urine, spiked a fever and things just started heading south fast  ~ AHHHHH!!!!!
 I stayed in close contact with his Pediatrician and managed to change up some of his treatments so we could stay home.  I did take him into see Dr K and to get xrays and labs done on Monday (which is Dr K's day off....how awesome that he comes in for us).  The right lung doesn't look good with effusion and infiltrates so we upped his treatments more and started an antibiotic (so much for the c diff procedure, which was also tested and came back negative for once.....we'll see how long that lasts now that he is back on antibiotics, sigh)
I would pop out of his room once in a while when I could...... Here they are with "some assembly required"
 It was a whirlwind holiday that was for sure.  But we managed to make the best of it.  Sitting back relaxing reflecting on how lucky I am to have my Lil family!!
 Dec 26th Dan and Av loaded up in the car and headed out for a 5-6hr drive towards Indianapolis.  Av is at a Dive Camp till the 31st.  She was alil reserved this time as she went there "alone" without knowing for sure if she would know anyone there.  Once she got there is was GAME ON and she was on the boards and as she says "I'm On FIRE" when she sent me a video of her doing a dive that she learned already on the first day.  AWESOME!!  I can't wait to see and hear about all the great things that she did at dive camp.  It's great the camp posts photos of the days activities on their FB page so I can see her and all the fun they are having!

Winter has finally found us.  Starting on Monday afternoon around 1 and then going into Tuesday afternoon there was around 12" of snow that dropped on us.  We got the snow that everyone was looking for as we had no snow on the ground and then went to a foot of snow in 24hrs.  Personally myself I don't like the stuff and would rather be back to being a Snow bunny in a warmer state during the snowy cold months here.
Winter Snow Storm Ashley
 The Pups are not a fan of the white stuff either.
Instead of frolicking in the snow as I see some of my friends dogs do mine requires a path to be snow blown in the yard so they don't have to walk through it.  SISSY's!!!!  
 I think now is a good time to ask him if we can move south for a few months, lol

I hope you had a Very Merry Christmas and a Happy Holiday!  Here's to a new year and may it be bigger and better then 2015.  HAPPY NEW YEARS !!