And I am unapologetic about it. We've all been in the situation where we feel like we've lost control of the health, wellness and needs of our children. I normally feel somewhat control over the situation but when I lose it, it becomes even a greater priority.
|Stella's memorial bench at a local park|
It's very hard to advocate for your child in a situation where you feel as though you are not in control or the expert. I've experienced many situations where I have felt this way and I only recently have become more comfortable speaking up.
I started to learn these skills when my dad was terminally ill with cancer. At the time he was not diagnosed, mainly because he was in a small town hospital not capable of handling his complex health issues. My brother and I ended up signing our dad out of the hospital and bringing him into the city for care and within hours we saw changes and improvements in his health, after spending 5 weeks with none. We pushed for answers by asking questions and constantly following up on his care. When we weren't satisfied, we evaluated our options and acted by changing hospitals.
|Stella at the hospital after her second febrile seizure|
I wish I didn't experience so many situations where I have learnt these lessons and for the times where I did not advocate as I would have liked; I don't feel guilty for it. I wish I could have done things differently now that I have better insight but at the time I know I did everything I could. And I don't feel bad for that.
It is very difficult to speak up in a situation where loved ones are involved, even more so speaking up and questioning health professionals! As a parent, you have this special feeling that comes over you in these extreme situations, its called your gut. You know your child best and when your gut feeling comes into play, you should definitely act on it.
During a situation where emotions are heightened and your greatest fears are in front of you, its hard to think of the words and eloquently put them together into a cohesive thought. It doesn't matter how you do it, using the proper terms or not. Ask as many question as you need, to understand.
|Some one on one time at the hospital with Walker|
I have found that tests and information is not related or performed unless I ask the questions and put pressure on the professionals, to fully understand what is happening.
Walker hasn't been gaining weight due to his extremely bad case of reflux. The doctors often wait to see how things will go. And soon enough six or more weeks go by and there is no change. They must exacerbate all options before proceeding with a specialist or different care. We put forward the idea of being admitted to the hospital for help and to show the professionals exactly what is happening in our home. This idea was entertained but not put into motion for a few weeks after he again, lost more weight.
|Walker with his new feeding tube|
Walker was admitted to the hospital to have a nasal gastric tube inserted into his stomach to allow for the full feed to be completed and attempt to digest it prior to any possible or anticipated regurgitation.
While there we questioned the timing of administration of his medications and the dosages. The medications were needed to be given at different times and medication dosages were maximized for his weight. It was time.
Stella had febrile seizures after a fever would strike and spike suddenly. She would have no symptoms of illness and would later be diagnosed with pneumonia, twice after having seizures. She passed away suddenly and unexpectedly with no cause or reason. How can this be when we got every little cough, cold and ear infection looked at and continuously monitored so it didn't worsen?
|We often will go to a Children's Hospital to ensure we get the care we trust|
I am that parent.
If I feel the need to have my child seen by a doctor, I will. If I still feel unsure, I have no problem returning and questioning the care. I may be an over reactive parent, but it's what I need to do to be satisfied and to sleep at night.
I tell my rare story. Please, use it if you feel the need.
If you don't think it's right, stand up and ask for more tests. Your gut will lead you in the right direction. There aren't enough resources to have someone hold your hand through the situation and explain every detail. The health professionals I find only offer the information they think you need to know or would ask. I can tell when I explain my child's medical history that they know I mean business and on top of my child's care.
|Walker having his NG tube inserted|
With cold and flu season upon us, we must be vigilant with our loved ones care because things can change so quickly. You will become knowledgeable about the topic and you will build confidence and understanding of the issue and will be able to speak intelligently about it. Write your thoughts down and take notes of your responses, if needed. You must continue to question like a toddler asking numerous "why" to every answer you give. The squeaky wheel gets the oil. Do what you need to do and don't apologize to other parents or professionals for it. You are you child's only advocate.
|Walker resting before getting his NG tube|