Monday, July 22, 2013

The Right to Know

Do you know what is fun? Having a total fail of a birth plan, having a c-section, being in a ridiculous amount of pain from being sliced open, being sore from laboring for 40 hours, trying to rush to the bathroom to pee because your body is ridding itself of all the water you've been swollen with for weeks, trying to figure out how to nurse with faulty equipment, having zero sleep, nurses that forget your pain meds which results in more pain and blood pressure so high your vision swims and trying to care for the tiniest human being that you've ever come in contact with.

Man, I can't even describe how fun it was to deal with all of that. It was awesome. And when you add to it a hospital that threatens to call CPS on you? Only makes it better.

Where is my sarcasm font?

I kid you not, internet. After all that went went through in our birth story, as we were going through the things listed above, Bryan and I were threatened by the hospital.

On Wednesday morning at the butt-crack of dawn the doctor on call came to see me, asking if I wanted to go home. Bryan and I talked with her about how concerned we were about that my blood pressure had not gone down. I was still in the high 150s and Bryan was extremely worried about it. I thought that being in the hospital, unable to take my medication on a regular schedule, not being able to sleep between the nurses coming in and trying to nurse Shepherd was what was raising it. I could tell that Bryan was shaken from the past few days so I didn't push it.

The doctor said that they'd wait 24 hours and discharge on Thursday. We agreed and prayed that my blood pressure would go down in that time. We had a great nurse on Wednesday night and she did the skin test on Shepherd for jaundice - he passed. He had no symptoms of jaundice. He was doing everything as he should and had lots of good poos. All was well. We thought we'd be discharged on Thursday. I woke up early and started to pack and clean the hospital room. I moved really slowly so I thought I'd get a head start.

The pediatrician came into the room and looked at Shepherd. He asked for the tenth time if we were breastfeeding only. I answered him for the tenth time that we were breastfeeding and supplementing with formula. (I guess he couldn't be bothered to read the chart!) He left.

Apparently, in the .5 seconds that he saw Shepherd, he felt that he needed to be tested for jaundice again. So labs were run. Shepherd's level had been at 7 and apparently they now had him at a 12. It was a high jump, for sure, especially with him showing no signs of jaundice. We were told we would not be discharged and they wanted referred Shepherd to a neonatologist.

The neonatologist came in and of course, English was her second language. Super. We could barely understand her thick accent, plus, she didn't really open her mouth with words, so it was especially muffled. She said she wanted to put Shepherd in a light box with a blanket and she'd allow them to do it in our room. She then started saying that she would probably keep us over the weekend until Sunday. Bryan and I immediately said we couldn't stay until Sunday, Bryan had to work Friday night so we had to be gone by 1:00pm the following afternoon. She said she probably wouldn't release Shepherd and that he would be transferred to a different floor and I would be permitted to stay with him, but Bryan couldn't stay with us over the weekend.

Things were starting to get a little dicey. We told her that we could not stay - we didn't have anyone in Fresno, and there was no way Bryan was leaving me alone to care for an infant all night when I just had surgery and could barely walk. The doctor pretty much said there was no way around it. She left.

We were pissed. We searched online and while level 12 was in the high mediums (getting to a 20 is very bad) Shepherd had no symptoms of jaundice and was eating and pooping. We couldn't believe what was going on.

We are sitting in our room, talking when the lab tech comes back in. She starts talking and then stops when she notices she's already been to our room. We didn't know why she was there, and she couldn't believe that they had ordered FIVE VIALS of blood to be drawn from my less-than-five-pound kid. Uhhhh, WHAT? We had no idea what labs were ordered, why they were ordered, and why SO MUCH had to be taken. Especially when he had already given two vials earlier that morning.

The lab tech said, "I've never even seen these tests being ordered on a baby before, anyways."

Oh, really? Hmm. We were not happy.

The lab tech was just as unhappy as we were, and refused to draw for the labs - which we wouldn't have let her do anyways. We call our nurse in and ask her to ask the doctor to come back to our room because we were concerned about the labs and everything that was going on.

Internet.  I kid you not. She wouldn't come back to our room. She called on the phone. Bryan talked to her because I was so emotional I probably would have been less that professional. Bryan asked her about the labs, why they were ordered, why she didn't ask us for consent, why all of this was happening, and basically told her that no matter what, we were leaving Friday and we would go straight to a Adventist Health in Hanford if necessary. We had a pediatrician appointment on Monday morning, just in case we didn't have to go to the hospital. We had all of our bases covered and we would leave Friday against medical advice if it came down to it.

The doctor told Bryan that we could not take the baby, that he and I could leave but the baby could not leave. Bryan informed her that we are not prisoners here and we could absolutely take the baby to any medical care facility we wanted too. The doctor then said that if we took the baby the hospital would call CPS on us. Mind you, I'm paraphrasing a lot because its a long story, but she STILL wouldn't come back to the room. I kept asking Bryan, where is our INFORMED CONSENT?

So, I'm shaking. Bryan is angry. I start to cry because I can't believe how all of this spun out of control so fast. Bryan hugs me and tells me its going to be okay. We start calling our prayer warriors and seek out people that can give us advice. One of my mother-in-laws best friends is a nurse and she gave us the same advice: Stay overnight, pray that we are discharged. If not, leave AMA and go straight to care in Hanford.

We braved up and stuck to our guns. We requested another doctor. If the one we had wasn't going to give us informed consent, we had the right to request someone else. We waited and he finally came. It was a young, well spoken guy who had ties to Hanford. He explained to us what was going on and we explained to him our side of it. As we were talking, a social worker from the hospital came into our room and stood by the door. We completely ignored her and continued to converse with the doctor. I shakily explained that while we weren't trying to cause trouble, we needed our right to informed consent, and since the previous doctor wouldn't explain to us in detail what is going on, we were not able to consent to any tests or staying an entire weekend.

The new doctor apologized for things getting out of control, he said to keep Shepherd under the light box and wrapped in the light blanket as much as possible, even while nursing. After asking what labs were ordered and why, we asked them if there was any way that the tests could be ran on the same blood. Five vials were ordered, but after our conversation, they only took two because turns out - they could perform all the tests on just two vials. Fancy that. He said they would test first thing in the morning, and we would go from there. He said that it was likely that Shepherd's level would go down and we would be discharged. Bryan reiterated that we had our pediatrician willing to assume care and that we had to leave tomorrow afternoon regardless of the level. He understood and he said hopefully it wouldn't come to that. The social worker left when he did without saying one word to us.

We had the same nurse on Thursday night and filled her in. She couldn't believe it. She mentioned that she wondered if they were trying to milk my insurance because my policy covered Thursday night. She said she bet that we'd be released Friday even with a slight decrease. The next morning, Bryan and I prayed for a lower level and prepared for a fight. We spoke with our pediatrician in Hanford and we were all on the same page. The level came back at a 9. They released us and we went home. We went to the pediatrician's on Monday and had new labs drawn, Shepherd was at a 5 and out of the woods.

It was a horrible ordeal. A few weeks after we were home we heard about the Sacramento family that had a situation like ours that had turned out to be much worse.

As parents, as humans, we have a right to consent to medical procedures done to us. We have a right to seek the medical care of any professional, at any time, for any ailment. Medicine is a BUSINESS. We can take our business anywhere we choose to get the very best doctors and care. We can travel the world in order to find specialists and professionals that can heal the sick. That is our right. Medical care should not be a hardship on a family. Whether you have insurance or not, we are PAYING for them to do their jobs. It is not a public service. We are the customer and we have a right to know what we are paying for and to okay it. It's no different from hiring a contractor, a landscaper or plumber. They are specially licensed to do a specific job and have to get approval by you before going and tearing up your house or yard.

In the situation of the Sacramento family, they took their child out of the hospital and went straight to another hospital to get better care. They received it and went home at the approval of their new doctor. The other hospital that lost their business called CPS on them, the police restrained the father and entered their home without a warrant (I won't even get started on that) and CPS took the child back to the original hospital which allowed them to financially gain from the situation, even when the parents did NOT want that hospital caring for their child and sought a better one. It blows my mind.

These events are happening to people, good people, that care about their children's health all over America. Our rights are being violated. Families are being torn apart. The hospitals should not be allowed to bully parents by threat of CPS. Hospitals ARE NOT prisons. If you aren't receiving the care you or your children, husband, parents, siblings, aunts and uncles deserve you should have the right to get to a different care facility.

I will never forget what happened. I will never leave it up to a doctor to dictate what is best for my child on their word alone. I will never quiet down when I feel that something isn't right. I will fight for these doctors to slow their roll and give me the information I need in order to protect and care for my child. My armor will never be down when it comes to the medical industry.

Sometimes I wonder if I'm overreacting but then I ask myself... Why would five vials of blood be initially ordered for tests when later all the tests could be performed with just two? Why would they have taken so much more than they absolutely needed to from a 4.8lb baby? If we hadn't raised our voices, our son would have lost six vials (a pediatric vial is one milliliter, so six milliliters total) of blood that day, when a 0-10 pound human has 20~ milliliters of blood volume. Blood banks consider 7-9% of blood volume can be removed if a person is healthy. I wouldn't consider a baby, born right on the line of preterm, weighing 4.8 pounds that is "jaundiced" healthy. So why they wanted to take 30% of Shepherd's blood volume in less than a 10 hour period of time, I'll never know.

Do your research. Know your rights. Fight for them.


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