Saturday, February 27, 2016

Back on Track

The last week has been NUTS!  Lots of set backs for Danny..... food intolerance, ER visit, pain and agitation, episodes, diarrhea, skin break down, wonky labs, and lots of doctor visits ~ BUT the last 2 days finally have taken a turn for the better.  It's just devastating to watch your child be in distress and have NO IDEA how to help him.  After changing some meds around, restarting the food introduction, and starting antibiotics I'm seeing "normal" Danny activity.  I'm sure there will be a set back here n there....but I believe he's back on the road to recovery.  It's been a LONG HAUL for him and I'm hoping and praying this is the break Danny needs.
I have also improved since my last relapse....My vision, weakness, and fatigue has improved immensely.  It's so much easier to tackle all of our craziness when I'm back to feeling better myself.  It was hard to just get through my day and then to add all of the other "stuff" .... exhausting doesn't even describe it.
I am SO READY for a vacation!!!  Some down time and relaxation !!! We've decided to go ahead with our Spring Break trip and enjoy the time together whatever comes our way.  I have "plans" for our trip but I am prepared to have things change and just go with the flow as things are still touch n go with Danny and myself  We are so lucky that we have the opportunity to bring one of our nurses along with, not only to "Just" help with Danny but I'm looking forward to having a "date" with Dan while on vacation.  We are definitely "The Griswold's" with our vacations and this trip we are amping up the "Lampoon" style by bringing a nurse and one of Av's friends along.  2 weeks, 6 people, and in a RV...let the F U N begin.  Honestly I can't wait for the Spring Break chaos!!
The end of last week we had conferences for Ms Av.....I'm still in denial that the end of 3rd quarter is approaching.  I want to hold onto the pre high school years for alil longer.  Av is doing awesome in school.  It's humbling to listen to her teachers take about her.  I love that she is a great student and has a wonderful relationship with her teachers.  I'm sure Av is going to miss them dearly next year.  Av can now add work to her list of accomplishments as She has a wonderful babysitting job that she really enjoys doing.  I can't being to describe how proud I am of Avrianna's her hard work that has gotten her to be a straight A student, an exceptional diver, a babysitter, and the best daughter n sister anyone could ask for.  I'm just beaming over here !!!
Spring is right almost here as the snow is melting with the warmer temps.  The end to the cold is near, WOOT WOOT ~ Bring on the flip flops n shorts.... WE ARE READY!!

Monday, February 15, 2016

Our Crazy train Reality

What a rough few days it's been around here. We came home on Thursday as Wednesday Danny had Another failed attempt at restarting feeds and me having to Fight for proper treatment with doctors that don't understand severe brain damage and their patients normals. I had to Blew my top and we were sent home to finish treatment in the comforts of our own home, under the watchful eye of our Amazing Pediatrician and Palliative care. It's safer for him to not be at the hospital and safer for them if I'm not here (lol). I'm done fighting for the care my son deserves. We have an amazing Medical team at home so it wasn't a difficult decision to head back to the Osero ICU. The hospital got baseline labs n X-rays before we left along with having to arrange to have more equipment to be delivered to the house. Danny's room is in deed an ICU room now the rest of the equipment we need to care for him at home was delivered. We are So grateful to have 2 physicians that believe in my son's quality of life and capabilities of me taking care of him. He is still pretty sick so it will be awhile before we can get back to any kind of normalcy but just to be home is a good start !!  It was wonderful to have my family all back under on roof again and to sleep in our own beds and take a hot shower in our own shower - was amazing. Recovery seems to be slow for Danny with restarting his gut. He still isn't tolerating much more in his stomach then his meds (thankfully his OK with those) he will retch if he's over whelmed and he his bowels are dumping which is really irritating his bum with all the bm's. I'm glad we are able to keep his nutrition maintained by IV TPN, but my hope is to get him off it as soon as possible. The longer he's on it the harder to get off and the more damage to other functions and organs if kept on it at length. So it's a scary bittersweet.
I have had to restart 5 days of 1000mg steroid IV infusion at the local hospital due to losing vision in my right eye. Stress is an awful thing!!!  No matter how much I say I'm fine and put a smile on my face, internally stress just eats you up. As I sit in the hospital for 2 hrs a day away from my family I am more frustrated that I can't be the mom, women, nurse I need to be. With the heavy doses of meds I'm getting its trying to fix one thing but breaking others as my bp and hear rate are high, I now have a migraine like no other, my taste buds are leaving and I'm gaining weight. I no longer have my med port for access so becoming a human pin cushion everyday is getting old n painful. The more I'm on this med the more it destroys my already crappy veins. Maybe the port should have stayed in. Time will tell if I'll regain my vision totally, so I sit and wait impatiently.
Av went to a Valentine's Day dance on Friday nite, I'm so glad I was home to see her.. They were cute. Sorry I haven't posted photos as the hospital connection limits what I can post. I can't believe the end of the third quarter is approaching us, but once again she had a fabulous quarter.  Diving is going well and we are gearing up for a great spring n summer of meets.  Then in the fall it's into her first season diving for the high school - oh my!!
Dan and Av did amazing with holding down the household while Danny and I were gone in addition to helping out with my daily infusions this week. I don't know what I would do without them in my corner, picking up the slack and being my support system. They are my ROCKS!!! It can't be easy for them to have such a crazy unstable lifestyle at times, but I'm so proud that they rise to the occasion and take care of what needs to be done.
I'm am SO LOOKING forward to getting away somewhere warm and having fun for spring break. Things have been too crazy to not have some enjoyable didn't time. This "vacation" is going to be somewhat different for us. Once I get more things in place I can't wait to fill you in.
Thanks for stopping by and checking in on us. Your support and orators are greatly appreciated.

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 -

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


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.
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.