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Wednesday, October 28, 2015

"Life or death"

I watched a plane in the air fly by and I immediately was reminded on how amazing we are as people. We are intelligent. Look how far we have come. How we evolved throughout these years. From traveling great distances on horses to flying. From the first typewriter now to this. It's truly astronomical. While watching the plane pass while knowing it was holding hundreds of people above me it reminded me about the trust we have in each other. In our chosen professions. We trust one hundred percent when we seek medical help, when we're passengers, when we outwardly seek help and believe in confidentiality. We believe in each other. Back within that first week in June when we were turned away not once but four times from emergency when my husband was clearly so ill, so sepsis was that moment I lost trust in our medical system. Even now (today) as my husband is undergoing a full MRI (October 28th) and while five months later still on daily IV with escalating white cell counts, weekly blood tests, chronic spinal pain, heart issues and TIA's (mini strokes that he takes simple aspirin for) has halted his quality of life. He looks much better, he has gained weight and strength but we still don't know what his future looks like. We're heading into our sixth month and he can't work, he wouldn't be able to catch that plane and enjoy a vacation. He can barely sit for long periods of time. He suffers every minute of his day while trying to maintain that father and husband figure while pushing through that chronic pain, those periods of extreme exhaustion and bouts of temporary paralysis from poor circulation. He lacks sleep and while struggling to maintain some normalcy, some happiness, my husband is mentally stressed and worried about our future. We continue to believe that he will be a MRSA survivor.... but we constantly question at what cost. Spinal pain is the worst pain someone can chronically have. It effects absolutely everything. When I was doing MRSA research I found out that time is an essence, it's a deadly quickly spreading infection. So....that first week while being turned away repeatedly from emergency, while begging for a simple urine or blood test it resulted in "what exactly" is the question? No apologies. I wanted to go to the news, the news is fully aware of our story however we are currently waiting to see if we have a law suit. The problem is, there is so many unknowns. Honestly, the future I know will be complicated and compromising. I personally believe the medical negligence we received warrants some sort of reprimanding. There was fault. The medical system can hide, blame or continue to say that it was easy to misdiagnose however there wasn't a physical examination in the first place except for the obvious, an opinion. A judgment. That landed my husband in ICU. So as we wait, wonder and hope for better news from his full MRI today – I'm still sick to my stomach that the intelligent professionals that we trusted broke that. It wasn't a simple mistake. No. You don't turn away someone that can't barely walk, talk and is pushed out of emergency by his wife while in septic shock with no tests or treatment. You don't tell that wife we're not admitting your husband today while she is in tears and is at a loss of what to do with him. No. I worked in first aid for years. One of the first things I learned was not to judge. You do your A B C's. You fully examine, and do a RBS. (Rapid Body Survey) You address every complaint. You take the appropriate tests. AND jeeze, blood work and urine samples are easy and usually instant. We are heading into our sixth month. I feel saddened by everything I've seen this man go through and still goes through. As we don't know his future, or if he can endure working as a mechanic anymore. Will he ever car race again? I have to think about what can I do. For me, it's not that easy. I need time. So I've proceeded to make a two year goal. I have applied to go back to school in hopes that I can obtain a Social Work career part time come 2018. Financially right now is this the right decision? Is it the right decision while my husband is sick? Having many children under my wing is this the right decision? I don't know except I have too. I want too for my family. For myself. What I do know is our current ongoing situation has changed us. On the positive side, we continue to live, love, and experience life as much as we can together. We understand how short life is, and on how quickly within seconds it can change. So there isn't time to waste. I'm grateful we are all intelligent, and that technology has expanded from just typewriters. That way I can share our experiences, I can explain to you to trust your extincts when it comes to your precious health. We are all intelligent but mistakes are made. And when those mistakes happen, we should be accountable for them. Simple. As that plane disappeared miles away in the distance I was in awe on how we trust our lives in others hands, and so we should. However always keep in mind to follow your heart, those gut feelings and to understand that your life is one hundred percent in your hands, not always in the hands of others. Well... unless you're unconscious or in an airplane! Then continue to keep your eyes closed and hang on tight! But if you're heading into an emergency department and you know something isn't right, you know it's just not gas – sit down and don't leave until you're properly evaluated or thrown out. I regret I didn't do this for my husband but what I can do now is to share our experience and advocate for others. Make sure you're not treated like we were. It can equal life or death.   

Tuesday, October 20, 2015

"The glue"

Before my husband became ill we never really spent one on one time together. Our focus was all about our children and our home. Building that perfect atmosphere for our family. It worked. We were both focused completely on our children. Our outings were mostly family orientated. We have switched this up. My husband and I are trying to get out more together. Recognizing us as "the glue" we need to spend more time. I surprised my husband with a Chemainus Theater experience and an evening away. It was nice and we soon realized even twenty four hours was too short! (Ha ha) 

It's true what's said. It usually takes a life changing event, or an illness to recognize what's truly important. What's right there in front of you. 

 "It is so amazing when someone comes into your life and you expect nothing out of it but suddenly they're right in front of you and it's everything you needed" - unknown.

We are hoping to have more opportunities because after all, we are "The glue" that molds our family together. We can't loose sight of that.

Thursday, October 8, 2015

MRSA Education

I was struggling if I should write about this or not. Constantly throwing it around in my head. I decided that I have too because we keep being questioned with concerned individuals about my husband's medical condition. We are feeling a sense of isolation, and/or distancing. I know MRSA (Methicillin-Resistant Staphylococcus Aureus) is a bacterial infection that many aren't educated about. In fact before my husband became severely infected throughout his body, we had no idea what it was either. I also understand with the lack of education that people would be afraid. I also understand (even with the education) why people would be afraid. It's a devastating bacteria that is hard to kill and once infected your life can change forever. Ours has. My husband is still on home IV. We are into our fifth month. Do we know what the future holds? Absolutely not. Are we afraid that one of our children can contract MRSA? No not really because it's that rare. It's like flesh eating disease. It's something that is stated contagious but how often do you hear of someone having it? Not often. Our life has changed. In many more ways then one. So I decided to write about MRSA. Below you will read MRSA information from the Vancouver Island Health Authority.

What is MRSA?

Staphylococcus aureus are bacteria that may commonly live in the nose, on skin and in moist areas of the body. This is called colonization, which occurs with other bacteria all over our bodies.  It does not normally cause a problem.  Staphylococcus aureus can cause infections such as boils and abscesses.  In the hospital it can cause serious infections in the blood, lungs or other areas for a person who is already ill or has had surgery. 
Staphylococcus aureus can develop resistance to certain antibiotics.  When this happens, it is called Methicillin-Resistant Staphylococcus Aureus, or MRSA.  Infections caused by MRSA are not more serious, but can be harder to treat as different antibiotics must be used. 

How is MRSA spread.

MRSA is spread from one person to another by contact.  MRSA can be present on hands, either from touching the skin or contaminated material, such as towels, sheets and wound dressings.  When hands are washed thoroughly or rubbed with an alcohol-based hand sanitizer MRSA is removed or killed.    
MRSA can live on surfaces, so hands can very quickly become soiled again. Frequent hand cleaning is necessary to prevent spreading MRSA. 

How would I get MRSA?

MRSA has been found in the community and in hospital settings, on people and their surroundings.  Healthy people are at low risk of acquiring MRSA. Some may be at higher risk if they have frequent hospitalizations, frequent use of antibiotics, compromised or broken skin, or lowered immune-system function. 

What precautions are used in the hospital?

It is important that additional precautions are taken to reduce the risk of MRSA spreading to other patients in the hospital.  These precautions include:*A sign on the patient’s door to inform staff and visitors that precautions are required *Use of gowns and gloves by all staff who enter the room to provide close care *The room, and equipment used in the room, is cleaned and disinfected regularly, with some equipment dedicated only to the patient*A commode for toileting purposes may be designated for the patient’s use only  
Patients with MRSA are asked not to visit the cafeteria and other public areas of the hospital. *They may be asked to remain primarily in their rooms, other than for tests or procedures *In some cases of respiratory illness, patients are required to wear a mask outside the room  

Some patients will be offered a body wash and a cream for the nose to treat the MRSA. * The body wash covers the entire body and is then rinsed off daily for 7 days*The nose cream is put up the nose twice a day for 7 days*A week after this treatment is done, the patient is swabbed again, to see if the MRSA has been successfully treated (if the MRSA is still present, the nurse and patient will discuss further treatment options)

What about family and visitors?

Family and friends are encouraged to visit and have close patient contact such as hugging, kissing and handholding, as normal. All visitors must clean their hands before entering and leaving the room. *Visitors are not required to wear a gown or gloves, unless they are helping the nurse with the patient’s care*Visitors must not assist or visit other patients in the room they are visiting*Visitors must use public washrooms only, not patient washrooms 

How can I help?

Perform hand hygiene:*Before: eating, drinking and entering/leaving a patient room*After: using the bathroom or blowing your nose*Before & After: touching a dressing or wound or applying personal care products  
Hand hygiene is:*Washing with soap and water OR rubbing with an alcohol-based hand sanitizer *Washing hands when they are visibly soiled*Turning taps off and opening bathroom doors with a paper towel 

What about future readmissions?

On any future admissions to hospital, additional precautions may be taken - and the patient may be checked again for the presence for MRSA.  
Patients should notify other health facilities or providers that they were on precautions for MRSA, in the event similar precautions need to be taken. 

What precautions should be used at home? 

If a person has MRSA at the time of discharge from hospital, the chance of spreading the bug to others is very small.  MRSA is no more infectious than other bacteria that people carry on their skin and are exposed to every day; however, people with MRSA should tell any health-care providers that they were on precautions for MRSA.  
People with MRSA can carry on with usual activities, ensuring they wash their hands after going to the bathroom or touching their nose or wound.  This practice should be a matter of routine and not just for MRSA. It is good to remind everyone to wash their hands often.   
Recommended practices at home
:*Everyone who helps with personal hygiene or toileting should wash their hands afterwards
-Clean hands before the preparation of any food and before eating 
-Cean hands well after using the toilet, and encourage family members to do the same
-Do not share personal items that touch the skin such as razors, towels or bar soap 
Cothing may be laundered in the same manner as the rest of the household laundry 
-No special cleaning of furniture or dishes in the home is required.

To conclude, it's your choice. I understand either way. For us, the recovery is nothing but hard. A daily frustration on many different levels and including this one. We just keep living day by day. Thank you for reading. Carrie.

Wednesday, October 7, 2015

We not only love, we live.

From sky to sea some of us enjoyed a day adventure. Funny, I decided to take a different route through the logging roads towards Port Renfrew. We ended up momentarily lost. High in the mountains where active logging was happening. Luckily we were given directions back on our right path.
 We ventured towards Sombrio Beach looking for the Sacred Water Fall. This trail (seen below) was absolutely stunning. The pine needles that fell off the trees resembled the red dirt that's in California. The sun was the guiding light. 
 We didn't hike for long before approaching this bridge. A wonderful opportunity for a beautiful picture while relaxing. 
 Sombrio Beach is one of many trail heads near Port Renfrew. A section of the Juan de Fuca Marine Trail. Four of our children enjoyed this day hike carrying packs. We had a discussion about over night and longer hikes in the future. 
 Along the beach were several caves. Little nature nooks to relax and play in. 
 One of my sons found this rock that resembled an owl, or a ghost. We packed this rock, and many others back home. 
 Can you believe that this was October 5th? My boys had a great time jumping the ocean waves, and yes - swimming!
 Inukshuks were everywhere. We even left our navigation points. 
 Washing up in the river after swimming in the ocean. 
 This sign below is located near the Sacred Water fall. The Pacheedaht First Nation has four reserve lands. Definitely a beautiful land to respect and honor.
 Here we are standing beside the Sacred Water fall!

 And all four of my boys were brave enough to shower!
 I wasn't that brave....
 This says, "Love is the answer"
To conclude this epic journey, love is not the only answer - living is. I truly believe experiencing the outdoors, taking adventures when you can is the best therapy. We are a complex family and we survive because we not only love, we live. 

Sunday, October 4, 2015

Clearing that cloud!

Lately I feel like we need to start over on a new day everyday. There is always something. Do you ever feel like it doesn't matter what you do, what you say or what you believe, the season or the year is just fighting against you!? I felt like that this weekend. Well actually.....for the past year. Battling MRSA is serious. We are into our fifth month now. Then to add, this weekend was a complete vomit fest. This flu along with a nasty head cold came out of no where. Slamming our family one after another and including my husband who is battling his own medical condition. Of course with his immune system he was the one suffering the most loosing another eight pounds. Now leaving him urinating blood. This week he will go for more tests to make sure his kidneys aren't infected and his white cell count hasn't escalated. This weekend was a constant mess. Up and down the hallways was vomit while running out of buckets and toilets. It's bad enough to have a few children sick but when you have multiple special needs children sick is another scenario! Once again I was feeling on that low side.....thinking to myself that there must be this black cloud that likes testing us. It definitely tests me. Inside I feel anger building. I know my patience has been limited but honestly.... really!? A super bug!? Vomit and diarrhea literally everywhere! We even specifically explained to one child that you can use the toilet or this bucket. Nope, it was splashed everywhere but. I think this would test any ones patience, not just mine. Believe me it was a powerful quickly spreading germ with no mercy, with no sleep. I look around and our home is clean, organized and very well maintained daily. Sometimes I just don't get it. I proceeded to open the windows and flush out that bad air repeatedly thinking about that black cloud. We can wake up every day with a new day however I'm becoming skeptical. I can clean, I can freshen the air and now I just need to take a extremely high blowing air compressor to move that cloud! Some of us did manage to get out today to the Qualicum Cheese Works. It was a breath of fresh cow manure but better then the alternative. AND I will have a beautiful post next because that's my next mission. It is to clear that cloud!