It has been a few days and it is time for another quick update...
Isabel is still on oxygen, however it has been lowered from ten litres down to one!!! The wounds around her mouth and chin are healing well though Isabel still won't smile (I think she fears tearing her tender lips again).
Her pneumonia is slightly better, though her cough still bothers her. We will attempt some physiotherapy tomorrow to loosen some of the phlegm.
Much to my relief, she has regained her weight. Feedings have not yet resumed and therefore she is kept hydrated with sugar/sodium I.V.
They are wanting to administer two types of medicines: One is Ranitidine or Zantac to help lower the level of acidity in her stomach in order to protect the lining in the oesophagus and to prohibit reflux (throwing up). Side effects include constipation, nausea, headache, abdominal pain and sometimes fever, sore throat, yellowing of eyes or skin!!!! Oh yeah, where do I sign up? Just what my baby needs...more nausea. The other is Metoclopramide (also known as Reglan or Maxeran). This relieves nausea, vomiting and reflux. Okay, good enough. Side effects include: drowsiness, restlessness, constipation or diarrhea, and sometimes spasms of the neck, face or jaw or sudden uncontrolled movements of the arms, legs or eyes. YEAH, RIGHT!! I'm suppose to feel good about her not throwing up anymore, but take on muscular or possibly neurological disfunctions? For crying out loud people! Let's not create more problems!!!!
We are stumped and exhausted. Do we give her these things? Do we just give in to the medical system even though they will not answer me when I ask them "WHY IS HER DIGESTIVE SYSTEM SHUTTING DOWN????" Instead of an answer, I am given a list of drugs to give her. GRRRRRRRR!!!
Oh, here's another fun thing. I am seriously worried about the possibility of Candida being the major factor in all of this, I mean after all, her tongue is suddenly white with thrush, her digestive system is totally affected, her formula's first ingredient is sugar followed by syrups and other forms of sugar, anytime she's had a diaper rash, it has been fungal...etc... So I told the nurse today, "I want a blood test done to detect any Candida antibodies in Isabel." Well, the huff puff was incredible! "Why would you want to do that? She doesn't have Candida! Oh, they don't do that kind of test on children. Her blood cultures will detect if there's any foreign fungi or bacteria in her blood stream." Duh lady, candida IS always in our bodies, it's when there's an overwhelming amount that is dangerous!
Where do we go from here? We will consult with a Nutritionalist NOT A DIETITION and see if we can establish a diabetic formula or an anti-candida one. Perhaps we can heal Isabel through nutrition rather than some stupid formula. Maybe we can focus on caloric intake based on oils rather than sugar, maybe even vary the formula so it's more like eating normally. I don't know. Those meds just scream no to me.
At what point do we say, it is time to give the medicine? Where do we find the people to establish this team that I believe we need to figure out the best possible care for Isabel? When will it all make sense? And for crying out loud, why do I need to get a PhD. to feel like I will finally be heard and respected within those hospital walls?
We need a team. I will find each member one by one. A nutritionalist, a chiropractor, a pediatritian, a researcher, a healing touch specialist, homeopath, nurse and social worker. Maybe I will come across others. But I will build this team and we will work together within the medical network. We will know our resources and establish a plan of action. One that will bring healing and strength to a little girl who fights to live and be here with us. One that will understand her needs and provide to them. One that will be victorious!
I will not give up this fight because my heart screams to me that there is an answer. I will question until it is found. And whether it is what I want to discover or not, my heart will be peaceful knowing that I never stopped seeking and believing.
You are team members as well. You are the support, the love, the prayers that we need to sustain us. You are my friends, my family, my beloveds! (I think I just made up a word) Well, I guess this no longer qualifies as a "quick update." Love and light to all of you and bless you for your messages. They bring such strength to me.