This morning I was delighted to receive the letter of apology from Galvez Hospital, where they admit that they had not checked baby Aiy�la as per their own protocol. At the time of reading the letter, I actually thought that life might be taking on some kind of normality.
Clearly I was wrong.
Earlier this week, I went to the local health centre to register the baby so she could be seen by a pediatrician. Unfortunately we failed, as we noticed that the children's hospital in Malaga, sent Kyla and the baby home with the wrong patients details. Our medical form with all the medical history was for a child called 'Mohammed'. With all the paperwork ( and anyone having any kind of experience with any authorities in this country, will understand when I say ' with the huge amount of paperwork' Kyla and Dan received, they did not notice that they were given the wrong paperwork.
This meant that the local health centre would not / 'could not' register Aiy�la and therefore no pediatrician would see her. Kyla had an appointment to see the doctor in the Malaga hospital tomorrow for a heart and leg scan as well as blood test. That was the plan.
But, this morning Kyla noticed that the leg with the Thrombosis was swollen and red. Kyla has been giving Aiy�la daily injections in her leg. ( I take my hat off to her, I am not sure I could do it, but as there are no health visitors or any other nursing support here, parents have to do it) We really thought the injections were helping, but then why is the leg swelling up suddenly. They took the baby back into Malaga hospital and are waiting to see a pediatrician who will also hopefully carry out a leg scan.
I just want this lovely beautiful baby girl to be alright. We all do. I can't remember being more stressed then I am right now. Watching the suffering and not being able to do anything about it, is so awful.
I am due to have Herceptin again tomorrow ( if my veins are ok), but actually just want to be with Kyla, Dan and the baby.
Someone please give us a break! Enough is enough!
Tuesday, 28 February 2017
Friday, 24 February 2017
So sad.........
I want to dedicate this page to Dolly, who I wrote about last summer. A courageous, brave, fun loving young girl has lost her life to cancer a few days ago.
Dolly was first diagnosed with junior Sarcoma in her right elbow at the age of 6 years old. She went through chemo three times between the ages of 6-17 years. She suffered through 14 operations to try and save her arm, but eventually had it amputated a couple of years ago, when chemo did not help. By the time she was 19 years old, after a routine scan she was told that she had Metastasis in her lungs. The doctors advised her to have a fourth chemo session. They told her that the chemo should kill her before the cancer would, but it was the only thing they could offer and that there was no cure. They informed her that if she did not have chemo she would only live another couple of months. Dolly started her fourth chemo round, but she got so sick, lost weight, all her hair and decided not to continue. After nearly 14 years of on and off of Chemo, which had not helped and being told that nobody could help her cure the cancer or prolong her life, she turned her back on conventional medicine.
This is when Dolly decided to try Cannabis oil instead. For the last 18 months, she lived a happy life and even though she only had one arm, she made the most of her borrowed time. During the time she took Cannabis oil, she was pain free and as care free as she had ever been.
Even though she lived nearly a year and half longer than the doctors predicted, she started the Cannabis oil too late, it prolonged her life, but did not save her life.
A tragic end, the last 4 weeks, she suffered terribly, she struggled to breathe and was in terrible pain. The last 2 weeks, she said that every time she fell asleep, a man was trying to take her away and she did not want to go. A brave little fighter until the end.
But, her name will live on. The Calvia Lions in Mallorca, where she lived, are going to start 'The Dolly Sanchez Cancer Fund', which will be a permanent fund to help finance 'poor' people with cancer to buy things like decent wigs, semi-permanent eyebrows etc. Dolly would have been so happy to know that in her name, help will hopefully be offered to other youngsters suffering from cancer.
Saturday, 18 February 2017
Home..........sweet home..............
Yesterday afternoon we all went home! After a heart scan and a scan in the leg , where they confirmed that Aiy�la has Thrombosis as a result of the operation, it was agreed that Aiy�la could be released, as long as they could check her again on Monday morning.
Hearing this, felt like heaven!
Hearing this, felt like heaven!
The last two weeks, we feel we have all held our breath, life simply stopped and everything we did, every thought we had, was just focused on this tiny little baby in hospital, as well as her mum and dad.
She is home and hopefully life will take on some kind of normality again.
She is home and hopefully life will take on some kind of normality again.
I would like to thank the many many friends and family who have supported us in their different ways over the last few weeks. I know from friends, that people we have never met, were praying for us (and whilst I myself am not a �believer, I can�t help but feel, some �magic� / �miracle� has happened), researching and sending us information, constantly supporting and contacting us. I am so grateful for the support during what seems like our darkest hours. My cancer journey seems nothing compared to what this little girl and Kyla and Dan have been through.
The last two weeks, I have to admit, I had no time or interest to think about myself or my progress. I simply functioned, and living in Malaga for this time, we did eat out a lot. This meant I ate �normally� again, as I have prior to me being diagnosed with cancer. I struggled with this. The food around us, so often is not pure and healthy and the long term effects can�t be positive on our bodies.
I had scrambled egg ( not as lovely as the eggs my chickens produce J), but nevertheless I figured I could not go wrong with that. I did go wrong, the cook had added sugar to it. Maybe in the past I would not have noticed, but not having had sugar in 9 months, I can now identify it quite easily. Why? Why would anyone add sugar or was it sweeteners?
This got me researching again. I spent nearly 30 years using �Canderel� sweeteners in my tea and coffees. Probably 4 little pills per day. I always had a �sweet tooth�. One of the components in Canderel is Aspartame. Until I started looking into this, I have never heard of it.
This got me researching again. I spent nearly 30 years using �Canderel� sweeteners in my tea and coffees. Probably 4 little pills per day. I always had a �sweet tooth�. One of the components in Canderel is Aspartame. Until I started looking into this, I have never heard of it.
Aspartame causes cancer!
This Is Your Brain on Aspartame
If the prospect of cancer is not enough to deter you from drinking diet soda or consuming processed foods sweetened with artificial sweeteners, consider the effect that aspartame has on your neurons and your cognitive function. In a study published in Redox Biology, researchers found aspartame may essentially program your brain cells to die.40
These biochemical and mitochondrial changes alter the functional activity in your brain, resulting in altered neuron function and neurodegeneration. The researchers theorized the results were from the effects of methanol molecule or the metabolite, formaldehyde or formate. This study also demonstrated that long-term use of FDA approved levels of aspartame distort your brain function.41
Another compound found in aspartame, phenylalanine, is delivered in excessive amounts and depletes your brain of serotonin, possibly one of the factors responsible for the increased number of people suffering from depression who regularly eat foods sweetened with aspartame.
A study planned by Case Western researchers was designed to evaluate the effects of aspartame on the mental health of their participants.42
However, this study was halted early by the Institutional Review Board citing safety reasons and severity of reaction to individuals who suffered from depression when exposed to aspartame. Reports of neurological and behavioral disturbances after ingestion of aspartame include an increase in headaches, migraine headaches,43,44,45,46 insomnia and seizures.47
Another study demonstrated that a high-aspartame diet resulted in more headaches, irritable mood, depression and poor performance on spatial orientation tests.48 A large concern is that the �high-aspartame diet� consisted of half the amount of aspartame the FDA considers safe for daily ingestion.
By Dr. Mercola
Artificial sweeteners such as aspartame are typically used to sweeten so-called "diet" foods and beverages in lieu of sugar or high-fructose corn syrup (HFCS). The idea is that reducing your calorie consumption will result in weight loss.
However, research has completely demolished this notion, showing that artificial sweeteners actually have the converse effect; they actually lower appetite suppressant chemicals and encourage sugar cravings and sugar dependence, thereby raising your odds of unwanted weight gain.1,2
Research has repeatedly shown that artificial sweeteners promote insulin resistance and related health problems just like regular sugar does, including3,4,5 cardiovascular disease, stroke6,7 and Alzheimer's disease.
While poor diet is a major driver of Alzheimer's in general (the primary culprits being sugar/fructose and grains, especially gluten), the key mechanism of harm here appears to be methanol toxicity � a much-ignored problem associated with aspartame in particular.
In a previous interview, toxicology expert Woodrow Monte, Ph.D., (author of the book "While Science Sleeps: A Sweetener Kills"8) explains the links between aspartame and methanol toxicity and the formation of toxic formaldehyde.
Wednesday, 15 February 2017
A small result......
I met with the head of the department in Galvez Hopsital today. A lovely lady called Angela Leon.
After asking her to explain their protocol when a baby is born, we soon established that the hospital did not follow their own protocol. According to Angela, the pediatrician should have checked the baby the morning she was born, which did not happen.
I remember and also told Angela this, that the pediatrician in the dreaded night ( when we weighted for 4 hours for the ambulance arrived) had told Kyla that she had emergencies to deal with that day.
I personally fail to see how this could be an acceptable answer, when Kyla's and Dan's baby needed an urgent heart operation the day she is born, how this is not classified an emergency.
I also addressed the behaviour and actions of the rude nurse, who told Kyla that she was 'starving the baby'.
To cut a long story ( meeting ) short, Angela Leon, apologised officially and admitted that they made a mistake and that they acted inappropriately. I have asked for a written apology to be sent to Kyla. She is the one who suffered most as a result of the pediatrician who could not be bothered to check the baby and the rude nurse, and the wasted hours of worrying in hospital about the fact that the baby would not wake up and did not feed, not to mention the traumatic 4 hours when we had to wait for the ambulance to arrive, whilst we are not allowed to see the baby.
I have to admit that after my meeting with Angela Leon, I did reflect on the difference between Spain and the UK. The approach today was almost naive and sweet. At no point did Angela consider that by putting the hospitals apology and admission of their oversight in writing, that some people might use this document. I have no intention of doing anything with the apology, other than to give it to Kyla and to move on, but could not help thinking that if this had happened in the UK, I doubt that anyone would have been prepared to admit their mistakes in writing for fear of it being used against them.
I was happy with the result of my meeting, because it is important to me that Kyla does not blame herself for a second. It is so easy to blame yourself, even I have blamed myself. Why did I not spot it? I gave birth to three children myself, surely I should have noticed that something was wrong?
After asking her to explain their protocol when a baby is born, we soon established that the hospital did not follow their own protocol. According to Angela, the pediatrician should have checked the baby the morning she was born, which did not happen.
I remember and also told Angela this, that the pediatrician in the dreaded night ( when we weighted for 4 hours for the ambulance arrived) had told Kyla that she had emergencies to deal with that day.
I personally fail to see how this could be an acceptable answer, when Kyla's and Dan's baby needed an urgent heart operation the day she is born, how this is not classified an emergency.
I also addressed the behaviour and actions of the rude nurse, who told Kyla that she was 'starving the baby'.
To cut a long story ( meeting ) short, Angela Leon, apologised officially and admitted that they made a mistake and that they acted inappropriately. I have asked for a written apology to be sent to Kyla. She is the one who suffered most as a result of the pediatrician who could not be bothered to check the baby and the rude nurse, and the wasted hours of worrying in hospital about the fact that the baby would not wake up and did not feed, not to mention the traumatic 4 hours when we had to wait for the ambulance to arrive, whilst we are not allowed to see the baby.
I have to admit that after my meeting with Angela Leon, I did reflect on the difference between Spain and the UK. The approach today was almost naive and sweet. At no point did Angela consider that by putting the hospitals apology and admission of their oversight in writing, that some people might use this document. I have no intention of doing anything with the apology, other than to give it to Kyla and to move on, but could not help thinking that if this had happened in the UK, I doubt that anyone would have been prepared to admit their mistakes in writing for fear of it being used against them.
I was happy with the result of my meeting, because it is important to me that Kyla does not blame herself for a second. It is so easy to blame yourself, even I have blamed myself. Why did I not spot it? I gave birth to three children myself, surely I should have noticed that something was wrong?
A good day..........
After a more of less sleepless night, spent on the floor for Kyla ( we brought in a mattress from home) and on the chair for Dan, the cardiologist finally arrived today. He confirmed that he was happy with the result of the operation. Baby Aiy�la is nearly 'wire / tube free' tonight. They removed the oxygen, the feeding pipe, the drip ( which was connected to her head) and various others tubes. She is no only left with the heart monitor attached to her foot. This is fantastic news, as Kyla can pick her up easily now, which has made all the difference to feeding her.
Gone are the bottle of expressed milk, baby Aiy�la is feeding from her mum! Thank heavens!
Tomorrow the doctor will show Kyla and Dan how to inject Aiy�la into her leg daily, to avoid possible thrombosis. This is where they entered during the operation in order to get to her heart.
Fingers crossed we are on the 'home run'. Wouldn't it be amazing if we could all go home by the weekend. We know that the baby has to be checked by the doctors once a week, which is fine and we are delighted that they have requested this.
There have been some funny moments today, when Dan and Geoff were left in the hospital room by themselves to look after the baby. I had my meeting with the manager of Galvez Hospital and Kyla had an appointment with the gyny to check her stitches. This left the two men in charge.
Murphy's law, Aiy�la needed a major nappy change ( due to having had a good feed from mum) and then needed feeding with a bottle. I would love to have been a fly on the wall. Listening to the men's report later this afternoon, I think panic set in and it was the blind leading the blind. Thankfully both the men and baby Aiy�la made it through the afternoon.
Gone are the bottle of expressed milk, baby Aiy�la is feeding from her mum! Thank heavens!
Tomorrow the doctor will show Kyla and Dan how to inject Aiy�la into her leg daily, to avoid possible thrombosis. This is where they entered during the operation in order to get to her heart.
Fingers crossed we are on the 'home run'. Wouldn't it be amazing if we could all go home by the weekend. We know that the baby has to be checked by the doctors once a week, which is fine and we are delighted that they have requested this.
There have been some funny moments today, when Dan and Geoff were left in the hospital room by themselves to look after the baby. I had my meeting with the manager of Galvez Hospital and Kyla had an appointment with the gyny to check her stitches. This left the two men in charge.
Murphy's law, Aiy�la needed a major nappy change ( due to having had a good feed from mum) and then needed feeding with a bottle. I would love to have been a fly on the wall. Listening to the men's report later this afternoon, I think panic set in and it was the blind leading the blind. Thankfully both the men and baby Aiy�la made it through the afternoon.
Tuesday, 14 February 2017
..............lost for words............
As Kyla can't pick the baby up due to the many wires, and the nurses won't help her lift the baby out, therefore she tried breast feeding standing up in the middle of the night.
Can my poor daughter sink any lower?
Understandably, standing up whilst trying to breast feed a new born, who is attached via various wires to the wall unit, proved impossible. ( Show me a mum who could have mastered the art of that one!)
This left Kyla with no choice in having to call a nurse asking her to bring her the milk ( labelled with Aiy�la's name), which she had expressed earlier in one of her bottles.
The nurse promptly returned with a bottle of milk, sadly not with Kyla's, but that of another mother. When Kyla pointed that it out to the nurse, she was met with the same shoulder shrug as last night and then disappeared, leaving Kyla with a hungry crying baby.
Word are starting to fail me...................
Can my poor daughter sink any lower?
Understandably, standing up whilst trying to breast feed a new born, who is attached via various wires to the wall unit, proved impossible. ( Show me a mum who could have mastered the art of that one!)
This left Kyla with no choice in having to call a nurse asking her to bring her the milk ( labelled with Aiy�la's name), which she had expressed earlier in one of her bottles.
The nurse promptly returned with a bottle of milk, sadly not with Kyla's, but that of another mother. When Kyla pointed that it out to the nurse, she was met with the same shoulder shrug as last night and then disappeared, leaving Kyla with a hungry crying baby.
Word are starting to fail me...................
Monday, 13 February 2017
Testing times...........
I am struggling to accept the medical system here. The doctors in the hospital are excellent, demonstrated by the successful operation.
When I consider however what has happened today and how Kyla was treated, I struggle not to rush into the hospital now and to pull the nurses over and have a chat. ( putting it politely)
I can only assume that they are understaffed and overworked, but is this no excuse for rudeness and most of all non-communication? Surely anyone working in this field has some kind of compassion? ......or am I asking simply too much?
This evening at 19.00pm, Kyla was told that the baby was being moved to another floor and that she needed to stay with the baby 24/7 ( this is after previously being told she could only visit for an hour), as there was only one nurse on the floor. Whilst that might seem a half reasonable request, after all that must mean Aiy�la is getting better, Kyla walked into a room with a chair.
The nurses then proceeded to roll Aiy�la's cot into the room and plugged the various cables and tubes into a wall unit. ( I should add that the tubes are on her right hand and right foot, but the cables were plugged into the left hand side of the wall, making it impossible for one person to lift out) and without an explanation left the room.
Kyla was asked them if they could help lift the baby out if she needed to feed, to which she received a shoulder shrug. Lovely touch. Kyla did try and call the nurse when the baby needed feeding, but they would not come as they were too busy. This resulted in Kyla having to bottle feed her, which for any mothers reading this, upset her hugely, as she really wants to hold and feed the baby, her new little baby girl.
Kyla is worried about the tubes and cables, the lights and bleeping and has no idea what they are for and how to move the baby, but getting hold of the one nurse on the unit is proving to almost be impossible.
If I try to focus on a positive here, then I have to assume Aiy�la is improving, otherwise surely she would not have been moved to another floor? I hope. As for finding a doctor, this seems to be like finding a needle in a haystack.
We are all stressed out and are feeling helpless................ tonight. Tomorrow will be another day and I intend to find a doctor. I am not leaving until we have spoken to one, we have not had a medical update since Friday, which in my book is not good enough.
When I consider however what has happened today and how Kyla was treated, I struggle not to rush into the hospital now and to pull the nurses over and have a chat. ( putting it politely)
I can only assume that they are understaffed and overworked, but is this no excuse for rudeness and most of all non-communication? Surely anyone working in this field has some kind of compassion? ......or am I asking simply too much?
This evening at 19.00pm, Kyla was told that the baby was being moved to another floor and that she needed to stay with the baby 24/7 ( this is after previously being told she could only visit for an hour), as there was only one nurse on the floor. Whilst that might seem a half reasonable request, after all that must mean Aiy�la is getting better, Kyla walked into a room with a chair.
The nurses then proceeded to roll Aiy�la's cot into the room and plugged the various cables and tubes into a wall unit. ( I should add that the tubes are on her right hand and right foot, but the cables were plugged into the left hand side of the wall, making it impossible for one person to lift out) and without an explanation left the room.
Kyla was asked them if they could help lift the baby out if she needed to feed, to which she received a shoulder shrug. Lovely touch. Kyla did try and call the nurse when the baby needed feeding, but they would not come as they were too busy. This resulted in Kyla having to bottle feed her, which for any mothers reading this, upset her hugely, as she really wants to hold and feed the baby, her new little baby girl.
Kyla is worried about the tubes and cables, the lights and bleeping and has no idea what they are for and how to move the baby, but getting hold of the one nurse on the unit is proving to almost be impossible.
If I try to focus on a positive here, then I have to assume Aiy�la is improving, otherwise surely she would not have been moved to another floor? I hope. As for finding a doctor, this seems to be like finding a needle in a haystack.
We are all stressed out and are feeling helpless................ tonight. Tomorrow will be another day and I intend to find a doctor. I am not leaving until we have spoken to one, we have not had a medical update since Friday, which in my book is not good enough.
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