My aunt had just mentioned yesterday while she was visiting how I don't get angry very often, but when I do I get my point across. That happened last night. Mike, and I have been through this issue with Jude's lungs before. Jude initially contracts something viral that quickly evolves into pneumonia. This particular instance has been the most serious one we have battled, but we have still been in a similar situation before. The last time we came in via ER they gave an initial dose of antibiotic with fluids, and then sent us upstairs. Granted I believe our country misuses antibiotics on a daily basis, and thus sets us up for resistive strains of infections. I believe in letting your body battle the illness if possible, but Jude's situation is different. In this circumstance I KNEW Jude's issues were turning bacterial, and I knew what he needed.
So last night prior to going to bed I asked the nurse if the blood work I mentioned in the prior blog happened to be in yet. It was. Let me state our nurses have been amazing. As usual we really like Dallas Medical City even if we were frustrated last night.
"Well his white blood cell count is still elevated, and the c protein as well which means he is still fighting an infection"
"It wasn't elevated before which means he has pneumonia" I said
We told her the entire story with the doctor yesterday, and I requested the antibiotic asap! She went, and called the doctor, but reached the nurse practitioner. She came back to tell us the nurse practitioner wanted another X ray. Subjecting him to 3 X rays?? Um no! That was it. My conversation.....or lack there of because it was one sided went something like this. "Before I say anything let me point out I am not angry with you. That being said let me now point out that I understand to this hospital Jude is special needs, but to us he is just special. I understand they are predicting a limited life span, but By GOD I am not going to speed the process up. Jude's initial film showed a "possible" issue in his left lung, today's film show infiltration into BOTH lungs, then this afternoon his oxygen level dipped twice causing you guys to increase the oxygen level, his fever is high, his heart rate is high, and now his white blood cell count is elevating. As he has shown you Jude goes from seemingly sick to deathly ill from 0-100 in about two seconds. So if it walks like a duck, and quacks likes a duck IT'S A DUCK. So please nicely explain to the doctor I disagree, and they can either administer the drug I know my son needs or they can transport us to a hospital that will"
The nurse understood, and went out to talk to the doctor. She came back in with the charge nurse, and as usual there is a reason I love nurses. They both told us they have been a little lost as to why they have not started the antibiotic before because they know Jude's case well. They had talked the doctor into a preventative dose per day of Rocefrine (sp?). They explained to us that the nurses position is always that the parents know more about their child than they do. They then said the doctor has to go by a clinical diagnosis until proved otherwise, and even though Jude's WBC is raising it isn't at a high level yet. The nurse said she told the doctor that when Jude's WBC was where they wanted it to be, there may be no turning back. So the doctor listened, and they put up the IV last night. Within an hour Jude looked better, and he slept.........all night long! We will have to repeat blood today to see if the WBC is continuing to raise. If it is they have given us fair warning Jude will be inundated with medications.
Jude is only eating about 3 ounces a day, and they cannot give the g button right now. I am hoping he eats more today, or they are talking about an NG tube. His cough sounds better today too, and he is currently laying in bed smiling at his giraffe. Thank you to everyone for your prayers.
The Emily's Smile Boxes were a huge hit up here yesterday. Mike said he passed by several rooms with children playing with their boxes on their bed! The nurse practitioner even said she wanted to nominate Em for sister of the year, so nice!