Tuesday, 24 March 2015
Thursday, 19 March 2015
Wednesday, 18 March 2015
Saturday, 14 March 2015
Wednesday, 4 March 2015
Sunday, 22 February 2015
Tuesday, 6 January 2015
Healing and Protecting Skin from Gastric Acid Burns
Healing and Protecting Skin from Gastric Acid Burns
When we were in hospital in 2013 we were fortunate enough to meet a paediatric surgeon from Egypt. She was on 6 week placement in New Zealand and we had the good fortune of Mrs Said standing in for our head surgeon whom had gone on a well deserved leave. I doubt he was on holiday though. I daresay he was giving lectures and working as he often does worldwide.
Since we had our first gastrostomy peg placement 5 years previously, we always suffered from a leaking peg and Brennagh would often have burns on her stomach.
These acidic burns were likened to chemical burns but we were only able to treat with zinc cream and bandages. This problem had always been linked to low toned children which Bren was classified as due to her trisomy 18. So I was told.
I could never really get my head around the 'low tone' as Brennagh is a very active child. Walking, running, crawling etc.
After years of putting up with it we arrived at Wellington Children's Hospital after Brennagh suffered the catastrophic loss of 3/4s of her bowel.
New opinions regarding her condition and the brainstorming sessions with the surgical team to problem solve were welcomed. For a long period of time and suffering on Brennagh's part we were unsuccessful at finding a resolution for the leaking and burning.
That was until Mrs Said came along. She had an innovative idea that she had tried with success once before. She used surgical laceration glue call dermabond. At $30 a tiny vile, it wasn't something we had at our disposal on the ward.
It was only available in the Accident and Emergency department and in the operating theatres.
We usually applied two viles, once a day. In a very short time time the skin was able to repair itself under the protective coating of glue.
Once it was realised the leaking couldn't be contained the gastrostomy was reversed leaving us with a naso gastric line for feeding.
In very poor countries where they don't have access to medical supplies egg white/albumen has been used in the home environment to cover and protect burns. Whilst not recommended by our medical profession when your resources are limited, you are forced to use what you have on hand.
We are very fortunate in New Zealand that our surgeons are not afraid to try new things, listen to others and admit when they don't have answers. In our case I have been lucky that our team members don't give up easy.
In that respect I could never thank them enough for saving my daughter when the odds were always against us. She has proven time and again that miracles do happen.
Kathleen McKay ~ Author.
When we were in hospital in 2013 we were fortunate enough to meet a paediatric surgeon from Egypt. She was on 6 week placement in New Zealand and we had the good fortune of Mrs Said standing in for our head surgeon whom had gone on a well deserved leave. I doubt he was on holiday though. I daresay he was giving lectures and working as he often does worldwide.
Since we had our first gastrostomy peg placement 5 years previously, we always suffered from a leaking peg and Brennagh would often have burns on her stomach.
These acidic burns were likened to chemical burns but we were only able to treat with zinc cream and bandages. This problem had always been linked to low toned children which Bren was classified as due to her trisomy 18. So I was told.
I could never really get my head around the 'low tone' as Brennagh is a very active child. Walking, running, crawling etc.
After years of putting up with it we arrived at Wellington Children's Hospital after Brennagh suffered the catastrophic loss of 3/4s of her bowel.
New opinions regarding her condition and the brainstorming sessions with the surgical team to problem solve were welcomed. For a long period of time and suffering on Brennagh's part we were unsuccessful at finding a resolution for the leaking and burning.
That was until Mrs Said came along. She had an innovative idea that she had tried with success once before. She used surgical laceration glue call dermabond. At $30 a tiny vile, it wasn't something we had at our disposal on the ward.
It was only available in the Accident and Emergency department and in the operating theatres.
We usually applied two viles, once a day. In a very short time time the skin was able to repair itself under the protective coating of glue.
Once it was realised the leaking couldn't be contained the gastrostomy was reversed leaving us with a naso gastric line for feeding.
In very poor countries where they don't have access to medical supplies egg white/albumen has been used in the home environment to cover and protect burns. Whilst not recommended by our medical profession when your resources are limited, you are forced to use what you have on hand.
We are very fortunate in New Zealand that our surgeons are not afraid to try new things, listen to others and admit when they don't have answers. In our case I have been lucky that our team members don't give up easy.
In that respect I could never thank them enough for saving my daughter when the odds were always against us. She has proven time and again that miracles do happen.
Kathleen McKay ~ Author.
Brennagh's Flight for Life
9.30pm Thursday 25th July 2013
The Flight Team arrived from Auckland bringing with them an expert team from PICU (Paediatric Intensive Care Unit ) at Starship Children's Hospital. It took another two hours to prepare Brennagh to transport. It was incredible to see what goes into switching over from hospital equipment to mobile equipment. All the lines of living-saving drugs and machines.
With the flight crew, ambulance crew, myself and Brennagh that made nine of us. I knew one of the ambulance crew so that was quite nice to have a familiar face. Although a lot of our medical team I would consider to be family.
Brennagh was settled in the aircraft at Palmerston North Airport and our life flight began. We flew over our house on the hill and all the boys at home were flicking the house lights on and off sending us lots of love with each flash. The flight was uneventful. I managed to even nod off a couple of times as I was shattered. As a person that doesn't fly unless it's an emergency, I was woken by turbulence and freaked out but judging by the reactions or lack of from the rest of the crew I gathered this was normal, so I settled again.
We arrived in Auckland and from there transported by ambulance, the fastest trip I've ever had! Lights, sirens and 140k plus! WOW! The moment was surreal, like a scene from a movie. I couldn't even grasp the gravity of our situation. It really was life and death.
It has taken another year to really process these events and understand how critical the situation was. I was clearly in a state of shock for the first 48 hours after this catastrophic event. Brennagh had life saving surgery where she had lost 3/4s of her bowel, leaving barely enough viable bowel to live/survive.
As we move into 2015 I am so grateful to report that with the most experienced medical team I have ever encountered we have been able to get on with our lives for the sole purpose of enjoying every precious moment. Things could have been so different if the events of July 2013 didn't work in our favour. Instead I would have been mourning the loss of my only beautiful daughter and my sons would have been mourning the loss of their only sister.
Brennagh would have been sadly missed by all her family and friends and it's her story that gives me the courage to share her rare conditions and her fight for life.
Kathleen McKay ~ Author
Understanding Your NRO/ DNR
Understanding Your NRO/ DNR
The last thing a loved one wants to deal with in a medical crisis is the Non Resuscitation or Do Not Resuscitate Order.
In that highly emotional situation it's difficult to make an informed decision based on the medical facts you are presented with by the medical team you are selected to work with . However if you are previously informed, it can make your decision a lot easier to make in that environment.
Many of us feel out of our league or lacking qualifications and experience when dealing with such professionals. But the least you can do for yourself and your loved ones is to know your rights and understand the interpretation and implications of your decisions.
ALWAYS be aware of what you are signing. Often time is a factor and we as loved ones are forced to make decisions under much pressure. Leading to an outcome you would possibly change in hindsight upon reflection. Also be mindful of the professional that will sign on your behalf without your knowledge. This has happened in cases. One being my own daughter Brennagh McKay. http://www.stuff.co.nz/manawatu-standard/news/4302210/Hospital-scandal-widens
If you are uncertain be sure to question the attending professional until you are satisfied. It is not always certain the professional is always right. Also be mindful you will possibly need to make this decision long before you plan an end of life. It's not always something you can plan for and most of us don't.
What is a NRO/DNR
The last thing a loved one wants to deal with in a medical crisis is the Non Resuscitation or Do Not Resuscitate Order.
In that highly emotional situation it's difficult to make an informed decision based on the medical facts you are presented with by the medical team you are selected to work with . However if you are previously informed, it can make your decision a lot easier to make in that environment.
Many of us feel out of our league or lacking qualifications and experience when dealing with such professionals. But the least you can do for yourself and your loved ones is to know your rights and understand the interpretation and implications of your decisions.
ALWAYS be aware of what you are signing. Often time is a factor and we as loved ones are forced to make decisions under much pressure. Leading to an outcome you would possibly change in hindsight upon reflection. Also be mindful of the professional that will sign on your behalf without your knowledge. This has happened in cases. One being my own daughter Brennagh McKay. http://www.stuff.co.nz/manawatu-standard/news/4302210/Hospital-scandal-widens
If you are uncertain be sure to question the attending professional until you are satisfied. It is not always certain the professional is always right. Also be mindful you will possibly need to make this decision long before you plan an end of life. It's not always something you can plan for and most of us don't.
What is a NRO/DNR
No code; End-of-life; Do not resuscitate; Do not resuscitate order; DNR; DNR order
What it is
A do-not-resuscitate order, or DNR order, is a medical order written by a doctor. It instructs health care providers not to do cardiopulmonary resuscitation (CPR) if a patient's breathing stops or if the patient's heart stops beating.
A DNR order allows you to choose whether or not you want CPR before an emergency occurs. It is specific about CPR. It does not provide instructions for other treatments, such as pain medicine, other medicines, or nutrition.
The doctor writes the order only after talking about it with the patient (if possible), the proxy, or the patient's family.
What is resuscitation?
CPR is the treatment you receive when your blood flow or breathing stops. It may involve:
- Simple efforts such as mouth-to-mouth breathing and pressing on the chest
- Electric shock to restart the heart
- Breathing tubes to open the airway
- Medicines
Making the decision
If you are near the end of your life or you have an illness that will not improve, you can choose whether you want CPR to be done.
- If you do want to receive CPR, you don't have to do anything.
- If you do not want CPR, talk with your doctor about a DNR order.
These can be hard choices for you and those who are close to you. There is no hard and fast rule about what you may choose.
Think about the issue while you are still able to decide for yourself.
- Learn more about your medical condition and what to expect in the future.
- Talk to your doctor about the pros and cons of CPR.
A DNR order may be a part of a hospice care plan. The focus of this care is not to prolong life, but to treat symptoms of pain or shortness of breath, and to maintain comfort.
If you have a DNR order, you always have the right to change your mind and request CPR.
How to create a DNR order?
If you decide you want a DNR order, tell your doctor what you want. Your doctor must follow your wishes, or:
- Your doctor must transfer your care to a doctor who will carry out your wishes.
- If you are a patient in a hospital or nursing home, your doctor must agree to settle any disputes within 72 hours so that your wishes are followed.
The doctor can fill out the form for the DNR order.
- The doctor writes the DNR order on your medical chart if you are in the hospital.
- Your doctor can tell you how to get a wallet card, bracelet, or other DNR documents to have at home or in non-hospital settings.
- Standard forms may be available from your state's Department of Health.
Make sure to:
- Include your wishes in a living will or health care power of attorney.
- Inform your health care proxy and family of your decision.
If you do change your mind, talk with your doctor right away. Also tell your family and caregivers about your decision. Destroy any documents you have that include the DNR order.
When you are unable to make the decision
Due to illness or injury, you may not be able to state your wishes about CPR. In this case:
- If your doctor has already written a DNR order at your request, your family cannot override it.
- You may have named someone to speak for you, such as a health care agent. If so, this person or a legal guardian can agree to a DNR order for you.
If you have not named someone to speak for you, a family member or friend can agree to a DNR order for you, but only when:
- You are terminally ill
- You are permanently unable to decide
- CPR will not work
- CPR could cause more medical problems for you
References
Iverson KV, Heine CE. Bioethics. In: Marx JA, Hockberger RS, Walls RM, et al., eds. Rosen's Emergency Medicine: Concepts and Clinical Practice. 8th ed. Philadelphia, PA: Elsevier Mosby; 2013:bonus online content.
Update Date: 5/7/2014
Updated by: Todd Gersten, MD, Hematology/Oncology, Florida Cancer Specialists & Research Institute, Wellington, FL. Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Isla Ogilvie, PhD, and the A.D.A.M. Editorial team.
Written and sourced by Kathleen McKay ~ Author
Slow Code, Know What to Look For.
Slow Code, Know What to Look For.
What is the definition of the "slow code?"
Well firstly let me share with you, the slow code is shrouded in secrecy. Unless it happens to you, which is very difficult to assess considering the crisis you would be in when it happens, you may never become aware that it has happened to you.
Slow Code ~ Definition
"SLOW" codes are a cardiopulmonary resuscitative efforts "that involve a deliberative decision not to attempt aggressively to bring a patient back to life. Either because the full armamentarim of pharmacologic and mechanical interventions is not used, or because the length of the effort is shortened, a full attempt at resuscitation is not made." 1(p.467) "Slow" codes are performed infrequently and, when they are, it is usually because the health care team feels that a full aggressive code would be futile or possibly detrimental to the patient. When the topic of "slow" codes is approached, both nurses and physicians have issues with "slow" codes. Some express the impression that when they are used it is because there is no other recourse. Others feel that "slow" codes should never be an option.
My personal experience with the slow code is that most medical professionals I speak with deny it's existence, however it is my own experiences within the medical profession that lead me to believe otherwise! My last experience was back in September 2009.
My Qualifications
Being the mother of a child with not only a terminal condition (trisomy 18, Incompatible with
Life) we also live with the catastrophic loss of 3/4s of Brennagh's bowel. She was deemed to have barely enough viable bowel to live/survive back in 2013. ( Short Gut/Bowel Syndrome)
For 8 years we have had weekly visits with medical team members ranging from the surgeons/professors, paediatricians, nurses, dietitians, physios, radiologists, gps, the list is endless.
We spent 2 weeks on life support at Auckland Star Ship Hospital after life saving surgery in Palmerston North July 2103 then we were transported to Wellington Children's Hospital where we remained for 6 months, returning home in January 2014. In this time I experienced one of the most qualified Gastro Teams in the world. At times we had the overseas expertise of world reknowned paediatric surgeons. It was an absolute pleasure to learn from them. The information/education has served u very well with our unique case.
I believe 8 years of dealing with the medical profession and being a parent more than qualifies me to speak on these subjects. Nothing can outrank the love/intuition a parent has for a child.
I also have to say after 8 years of doing this journey I believe my daughter Brennagh is the authority and living proof on these subjects, it's my job to pass on our experience with what is truly possible beyond the diagnosis's
Author ~ Kathleen McKay
What is the definition of the "slow code?"
Well firstly let me share with you, the slow code is shrouded in secrecy. Unless it happens to you, which is very difficult to assess considering the crisis you would be in when it happens, you may never become aware that it has happened to you.
Slow Code ~ Definition
"SLOW" codes are a cardiopulmonary resuscitative efforts "that involve a deliberative decision not to attempt aggressively to bring a patient back to life. Either because the full armamentarim of pharmacologic and mechanical interventions is not used, or because the length of the effort is shortened, a full attempt at resuscitation is not made." 1(p.467) "Slow" codes are performed infrequently and, when they are, it is usually because the health care team feels that a full aggressive code would be futile or possibly detrimental to the patient. When the topic of "slow" codes is approached, both nurses and physicians have issues with "slow" codes. Some express the impression that when they are used it is because there is no other recourse. Others feel that "slow" codes should never be an option.
My personal experience with the slow code is that most medical professionals I speak with deny it's existence, however it is my own experiences within the medical profession that lead me to believe otherwise! My last experience was back in September 2009.
My Qualifications
Being the mother of a child with not only a terminal condition (trisomy 18, Incompatible with
For 8 years we have had weekly visits with medical team members ranging from the surgeons/professors, paediatricians, nurses, dietitians, physios, radiologists, gps, the list is endless.
We spent 2 weeks on life support at Auckland Star Ship Hospital after life saving surgery in Palmerston North July 2103 then we were transported to Wellington Children's Hospital where we remained for 6 months, returning home in January 2014. In this time I experienced one of the most qualified Gastro Teams in the world. At times we had the overseas expertise of world reknowned paediatric surgeons. It was an absolute pleasure to learn from them. The information/education has served u very well with our unique case.
I believe 8 years of dealing with the medical profession and being a parent more than qualifies me to speak on these subjects. Nothing can outrank the love/intuition a parent has for a child.
I also have to say after 8 years of doing this journey I believe my daughter Brennagh is the authority and living proof on these subjects, it's my job to pass on our experience with what is truly possible beyond the diagnosis's
Author ~ Kathleen McKay
My Introduction to Trisomy 18
"I'm sorry Mrs McKay, your daughter is Trisomy 18"
These were the words ringing in my ears from the head of the genetics team.
I sat there with a blank look on my face. They knew I didn’t have a damn clue what they were talking about. They may as well
Brennagh 4 Days Old
have been telling me the mechanics of my car’s engine, and like I cared anyway! My daughter had already survived being born 3 months premature and doing all the horrible things that premature babies do. How bad could it be?
We’d not long been sent home and she’d failed to grow. Brennagh was always vomiting, was losing weight and after close scrutiny it was realized I wasn’t neglecting or starving my girl on purpose. That in itself for any decent parent was humiliating.
After months of dealing with the issues of prematurity, that statement was just another string of words from yet another medical professional.
That was until I was slapped into reality by the cold of hard facts of the genetics tests!
A quick course ensued on the bio-mechanics of chromosomes and DNA and then the onslaught of psychological kicks to my face and stomach. I thought the barrage of the implications of this ‘horrible’ condition was never going to stop. They were still ongoing long after I had switched off. Must be the hardest thing for a parent I tried to tell myself, trying to distance myself from this conversation….
“Your daughter’s 18th chromosome has triple,” being biologically challenged I thought so what….”we did numerous tests which were all conclusive, every one of Brennagh’s cells carry the T-18 chromosome. This means she’s incompatible with life.”
It made no sense to me, she’s been alive and living for the past 5 months, how does that make her incompatible with life?
I sat there nodding while the words tried to sink in…..incompatible with life……. “what do you mean incompatible with life”, “I don’t understand”…..The first question out of my mouth, and sounding like the desperate mum I was, I blurted out ”Can you fix it?”. “Sadly , no” was the reply, “there is no cure”. “Well” with more desperation, I said, “she’ll grow out of it, right?” “Sorry no, it’s imprinted on every cell”. About 1 in every 5,000 babies is born with trisomy 18, and most are female. The condition is even more common than that, but many babies with trisomy 18 don’t survive past the second or third trimester of pregnancy.
Sitting there in absolute shock and feeling like a complete dummy I asked, ” What does that mean for her having children?” I really wasn’t thinking straight and all the questions I could’ve or should’ve asked eluded me. These were experts in their feild, I was a nobody…..just a mum….and that’s all I wanted to be. I wanted this nightmare to be over and I wanted to go home to be ‘just a mum’. “We’re sorry Mrs McKay, Brennagh won’t ever be able to have children”. I was shattered, my world was crumbling around me. Wasn’t our trial with pre-maturity over? Were we even close to going home like normal people and bringing up our children like normal people? I didn’t want to do this, I wanted to scream! “It’s not fair, why us, what the f@*k did I do wrong???”
“You didn’t do anything wrong Mrs McKay, it’s just one of those random things.” None of it registering deeper than the speed of the questions coming to my mind. They continued, “she doesn’t have many of the usual features…..”
Babies with trisomy 18 are often born very small and frail. They typically have many serious health problems and physical defects, including:
- Cleft palate
- Clenched fists with overlapping fingers that are hard to straighten
- Defects of the lungs, kidneys, and stomach/intestines
- Deformed feet (called “rocker-bottom feet” because they’re shaped like the bottom of a rocking chair)
- Feeding problems
- Heart defects, including a hole between the heart’s upper (atrial septal defect) or lower (ventricular septal defect) chambers
- Low-set ears
- Severe developmental delays
- Chest deformity
- Slowed growth
- Small head (microcephaly)
- Small jaw (micrognathia)
- Weak cry
Up sprang another dumb question, ” will she walk?” I was clutching at straws, clutching at anything that would give me hope…hope for some sort of life…..I should have known they were giving me all the hard cold facts….the worse case scenarios…but I was just a mum, how could I even comprehend anything they were saying….All I heard was doom and gloom, then death. And never knowing when that death was coming to knock at my door.
I didn’t want to do this. I didn’t want to plan a funeral for a beautiful baby girl I had barely time to get to know. I didn’t want to be robbed. They must be wrong….surely? I can’t do this….I WON”T do this!
“We’re sorry Mrs McKay, Brennagh will never walk….” that was the point where it was just too much for me. I stood up crying, I needed some air, I needed to get away, I excused myself and said I’d be back in a minute.
I was in a fog…. I went outside, all I could think was I was in a dream, I’ll wake up soon, I’ll go back in and they’ll tell me it will be ok. Everything will be ok. I went back in still not knowing how real this all was.
I sat, and they continued!! I couldn’t believe it! There’s more? Hadn’t they told me enough already? What are you trying to say? “She shouldn’t be here”, “you’re very lucky she made it this far.” Are you kidding me?? “Brennagh won’t crawl, she won’t walk, she won’t talk, she won’t do anything, she’ll be a vegetable for the rest of her remaining life”. “The best thing you can do Mrs McKay is take her home and make the most of the time you have left. You’ll be lucky if she makes it to one”.
After that I was in complete shock. I remember a quick transfer back to our primary hospital being made. I couldn’t breathe, I couldn’t look at my baby without thinking they’d made a mistake then thinking what if they’re right, should I get too attached? How could I not I already loved her more than life itself. I was messed up something ferocious! I wanted out of there and fast!
I remember hearing a plan had been tentatively put in place for Brennagh’s funeral before we’d even arrived back home! I was wild beyond words regardless that it may be our tribal ways although I didn’t give a flying spaceship! How dare anyone tell me to be prepared to lose my precious baby girl! HOW DARE ANYONE! I wanted to scream and scream and scream!!!!
Flying Home
We were waiting to be transported by ambulance back to our primary hospital however we were fortunate enough to be flown home by our Westpac Rescue Chopper. This meant we could fly in, be met by my family and then whisked away to safety. I didn’t have the time or the inclination to discuss my daughter’s pending death with anyone. I wanted to be left alone. Left alone to come to terms with having only a couple of months if that left with my daughter. I was finished talking or rather listening. I was done.
Back on the Ward
We weren’t able to ditch our hospital as quickly as I’d planned. We were wanted on the ward as we were still patients on transfer, not discharged. So the family and I hit the children’s ward. “Mrs McKay, we’d like you to stay so we can put a feeding plan into place so you’ll need to stay a couple of days.” Brennagh was naso gastric fed, a line through her nostril to her tummy. She’d failed to thrive due to her trisomy and someone thought we’d be happy to sit around until someone figured it out so we could go home. Were they kidding?? I was ready to tear someone’s head off. I couldn’t believe the anger I was feeling and it just continued to build, I had to get out of there.
I decided with or without a feeding plan I was out of there and they best make their plan fast as I was leaving with my daughter, end of story.
And so it was….Brennagh and I were taken to the beach by Brennagh’s father and brothers where we took time out for the weekend to soak up all the information , swinging between fact and denial, trying to make our own plan.
And our plan had nothing to do with being ‘incompatible with life’, it was learning to live a full live with trisomy 18.
Author – Kathleen McKay
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