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.

Researching again.........

I came across this article on Facebook, ( never believe anything you read on Facebook, which is why I looked into it a little further .........)

http://www.naturalnews.com/036526_cannabinoids_breast_milk_THC.html


(NaturalNews) Woven into the fabric of the human body is an intricate system of proteins known as cannabinoid receptors that are specifically designed to process cannabinoids such as tetrahydrocannabinol (THC), one of the primary active components of marijuana. And it turns out, based on the findings of several major scientific studies, that human breast milk naturally contains many of the same cannabinoids found in marijuana, which are actually extremely vital for proper human development.

Cell membranes in the body are naturally equipped with these cannabinoid receptors which, when activated by cannabinoids and various other nutritive substances, protect cells against viruses, harmful bacteria, cancer, and other malignancies. And human breast milk is an abundant source of endocannabinoids, a specific type of neuromodulatory lipid that basically teaches a newborn child how to eat by stimulating the suckling process.

If it were not for these cannabinoids in breast milk, newborn children would not know how to eat, nor would they necessarily have the desire to eat, which could result in severe malnourishment and even death. Believe it or not, the process is similar to how adult individuals who smoke pot get the "munchies," as newborn children who are breastfed naturally receive doses of cannabinoids that trigger hunger and promote growth and development.

"[E]ndocannabinoids have been detected in maternal milk and activation of CB1 (cannabinoid receptor type 1) receptors appears to be critical for milk sucking ... apparently activating oral-motor musculature," says the abstract of a 2004 study on the endocannabinoid receptor system that was published in the European Journal of Pharmacology.

"The medical implications of these novel developments are far reaching and suggest a promising future for cannabinoids in pediatric medicine for conditions including 'non-organic failure-to-thrive' and cystic fibrosis."

Studies on cannabinoids in breast milk help further demystify the truth about marijuana

There are two types of cannabinoid receptors in the body -- the CB1 variety which exists in the brain, and the CB2 variety which exists in the immune system and throughout the rest of the body. Each one of these receptors responds to cannabinoids, whether it be from human breast milk in children, or from juiced marijuana, for instance, in adults.

This essentially means that the human body was built for cannabinoids, as these nutritive substances play a critical role in protecting cells against disease, boosting immune function, protecting the brain and nervous system, and relieving pain and disease-causing inflammation, among other things. And because science is finally catching up in discovering how this amazing cannabinoid system works, the stigma associated with marijuana use is, thankfully, in the process of being eliminated.

In another study on the endocannabinoids published in the journal Pharmacological Reviews back in 2006, researchers from the Laboratory of Physiologic Studies at the National Institute on Alcohol Abuse and Alcoholism uncovered even more about the benefits of cannabinoids. These include their ability to promote proper energy metabolism and appetite regulation, treat metabolic disorders, treat multiple sclerosis, and prevent neurodegeneration, among many other conditions.

With literally thousands of published studies now showing their safety and usefulness, cannabinoids, and particularly marijuana from which it is largely derived, truly are a health-promoting "super" nutrient with virtually unlimited potential in health promotion and disease prevention.

Be sure to check out how juicing raw marijuana leaves, which contain a diverse array of health-promoting cannabinoids, is an excellent non-psychoactive way to prevent and treat a host of diseases, including cancer: http://www.naturalnews.com/035759_cannabis_juicing_health.html

Sources for this article include:

http://www.sciencedirect.com/science/article/pii/S0014299904007423


Learn more: http://www.naturalnews.com/036526_cannabinoids_breast_milk_THC.html#ixzz4YZDCsfaz


Well that is heartening to read! Little Aiy�la and I have a lot in common!!!

Little milestones.......

Baby Aiy�la is still in the intensive care unit, BUT............ Kyla has been able to feed her a little.
This is great news and we are hoping that they will remove the 'feeding pipe' this coming week.

We are also told that Aiy�la might be moved to a 'lesser intensive care unit' tomorrow.  I don't understand how many levels of intensive care units the hospital has, but if she is moved then this is a small step in the right direction.

Kyla has spent all day in hospital, ( nobody else is allowed in during the day), which meant Dan went to work and caught up with Kyla and Aiy�la this evening.

Dare we hope that maybe by next weekend, we can all go home???

Rhea sadly, after a week here, had to fly back home to the UK. Her employers have been amazing in that they let her stay here all week. So sad though, Rhea still has not held the baby!

I can see us buying shares in EasyJet, maybe she can come back when Aiy�la is allowed home.
Jack's arrival next week, might just be perfect timing to meet his little niece.

I am also looking forward to meeting the head of Galvez hospital this coming week. It will be interesting to hear about their 'protocol' and processes when a baby is born. As Kyla saw nobody for 14 hours after the birth of Aiy�la, I wonder if there is a 'protocol'. We will see...............

Light.......at....end...........of ........the .........tunnel........

Dare we say and think it?

Great news, the ventilator was removed this afternoon and little baby Aiy�la is breathing by herself. We are so relieved and over the moon. She is still connected to many cables and oxygen, looking so lost in this room of bleeping instruments which keep flashing ( randomly to us) at different intervals, and we hope that over the coming days more tubes and cables will be removed.

Unfortunately as nobody explained to us what the tubes and cables are doing, as it appears that different nurses look after different parts of the machines.

What makes a doctor become a doctor?

What makes a nurse become a nurse? What makes a surgeon become a surgeon?

Is the love for the job, the fact they want to save lives?  Do they only concentrate on the patient in front of them?

They should, right? After all that is the most important part, they are saving lives?!

But, were it the compassion? Is it really just a �job� to them? Of course, I am not talking about everyone we have met. But there are some that sadly damage the reputation of those that I am talking about.

The cardiologist who operated little baby Aiy�la this morning was lovely, warm and filled us with confidence and positivity.

We have been told that this Maternity Hospital here in Malaga, has an excellent reputation, which is so good to hear. After all, the medical care is the most important thing, but������..

Why, did nobody tell Kyla what to do in the room where the milk is expressed and what to do with it, other than stick the small plastic bottle in her handbag?

Why, did nobody show Kyla how the baby needs to be taken out of the plastic cot? (not an easy task, when trying to avoid the many tubes getting stuck or tangled)

Why, did nobody tell Kyla that the uncomfortable upright plastic chair next to the baby, could be reclined, to make it more comfortable when trying to nurse the baby?

Why, did nobody tell Kyla who was doing what with the baby? (people in different coloured uniforms appear without saying a word, changing tubes, settings etc)

Why, did nobody take Kyla to the intensive care unit to show her where the baby was? Explain what the wires meant? (Quite frightening when you see your baby for the first time all �wired up�)

Why, is a message given to the parents, purely factional without any empathy? ( first time parents, with a 4 day old baby , having undergone a 3-4 hour heart operation)

Kyla and Dan were met by a new doctor who took over the evening shift, who did not know Aiy�la�s name or Kyla and Dan�s name, who without any introduction  or eye contact, delivered the following message: 

�Tonight is critical, she is stable at the moment, but, if she needs any emergency heart surgery they will call you. The valve seems to be open and closing, but this could change, she is on the ventilator until we can confirm that everything is functioning�.  

Whilst  the update was great, the harsh way in which the message was delivered could have reduced the more faint hearted to tears..

Kyla asked:  �Is she stable?�, �yes, for now�

�Did she have a scan?�, �yes�

�Is the valve working, i.e. opening and closing?�, �yes but, it could fail�

He did volunteer: �We had to give her help to pee, she has a catheter�. Kyla had to question if that is normal to which he said �Si�. (why mention it then?)

We are all well aware that our little baby has had a massive operation and of course the next 48 hours are crucial, I guess it is the bedside manner, or lack of that makes this so much harder. Just a little bit of compassion would go a long way, but clearly that is too much to ask.

Tomorrow is another big day, another mile stone to reach.   

A little bit of good news......

We were called back to the waiting room just now and were met by the cardiologist, who confirmed that they managed to open the valve by 8mm. Success so far!
Now we are waiting to see if the valve is closing by itself.

One step taken in a long and windy road.

Thank you for all the messages!

Lindsay's word just now : 'I'm now going to sob some more, in happiness'

Still waiting...

Last night Kyla and Dan were told to be in hospital for 08.00, which they were. 

This morning at 08.00 when they arrived, they were told baby Aiy�la had developed a temperature and they were not sure if the operation was going ahead. They proceeded to do some 'tests'  and Kyla and Dan were asked to leave the room. They were then asked why they were here waiting........ why? Because they were told to..... eventually at 09.00 they wheeled her incubator out of the intensive car unit and heavyhandedly ( if this is a word) proceeded to smash it into the door frame. Twice! Christ! You would have thought that even the most junior nurses would have some kind of antenna, aiming to avoid the concrete pillars, swinging doors, exit signs and door frames. Particulary when the parents are watching. 

I realise that in the overall scheme of things this is not important, but still.

So, I had Herceptin and as the nurse said ' el ley de Murphy' ( Murphy's law), two veins they tried , failed. On the third attempt they managed to get it in. Out of all the days.

I still managed to argue with the oncologist, who is insisting that I have a biopsy. I accepted the referral letter, just to get out of there as quick as possible.

So here we are waiting, in a coffee shop. Drinking tea! 

Something that dawned on me the last few days, which is so obvious but took me by surprise is that as grandparents, nobody wants to talk to you. Logical, but it had not dawned on me until it was spelled out by the doctor: 'Parents only'! I wanted to scream out, ' I am the mother'! Kyla's mother and she needs me!!!!  I suddenly feel transported into another generation, the old one, the grandparents, cast aside, no influence.... sounds dramatic, it' s not. I smile at myself to think , I could just do what I always do: organise and problem solve. Geoff and I are helpless 'bystanders' . Actually we all are.

So the waiting continues.

I am overwhelmed by the kind warm support we have all received from friends and family. Whilst we are not a religious family, we have many friends who are. There are from what I believe literally 100s of people are praying for little baby Aiy�la. So if there is a god, then now is the time............