May 19, 2013

Nothing says "Happy One Month Birthday" than a trip to the hospital.
A quick recount of the trip to the hospitals.
Poor Bethy had a rough week.
Being a bit congested through the night Tuesday, I realized some time in the afternoon  Wednesday that Bethany had a fever.  Her eyes were not looking to well too, and she was still congested. After dinner and getting the kids ready for bed she still felt warm so I decided to take her temperature.  I have three thermometers, but the only one I really trusted for infant use I couldn't get to work.  Between the other two more unreliable thermometers it looked like she was running a fever of 102.  I debated what to do for a while as she didn't seem too ill, and then together Jake and I decided I would run her down to the hospital insta care before it closed and we didn't have the option.  So to the insta care Bethy and I went.  After about an hour or more wait we were seen.  They weighed her.... just shy of 10lbs which surprised me as to how much she had grown.  Then took her temp, oxygen, heart rate.  The nurse left, and doctor returned.  She started "you are not going to like what I am going to say....."  She was right. She had come up at 102 fever.  The insta car policy was that if an infant under 60 days with a fever of over 100.3 came in, they had to send them to Primary Children for several medical testing and observations.  She ended... or you can go to the ER next door and see what they say.
I tell the doctor that that is what I will do, just go to the ER in Heber.  She says okay, but let me send a nurse with you.  Darn it I was just considering going home.  But okay I think, we will see what the ER has to say.  We wait over an hour to be seen.  A nurse comes in takes her temp, heart rate, weight, oxygen level and sends in the doc.  He says the same thing.  Except that it is the ER"s policy that if an infant under 29 days comes in with a fever of over 100.3 they have to send them to Primary Children's.  Grrr... Bethy is 28 days old.  Really.
They have ordered an ambulance for us.
Really?
By now I have called Jake and he is with me, and my Mom is at home with our children..  I get too emotional to handle things like this and want him to help me make decisions.
We refuse the ambulance.  They make me sign a waiver saying I am liable or something because I have refused the ambulance.  They tell us to go straight to the Children's Hospital and not to stop for dinner. We don't listen.  We just don't feel our child is that sick.  We don't stop for dinner, but we do go back to our house and pack a small bag, mostly stuff for Bethany.  Surely we will be home in the morning and don't need much more.
Jake gives Bethany a blessing.
About 30 minutes have passed and we head to the Children's Hospital.
We arrive, they receive us and have been expecting us.
They do the same.  weight, heart rate, temp, blood pressure.
Then put us in a room.
A student doc comes in, and then another.  They tell us the same policy.  Our daughter is under 29 days old.  She has a fever of over 100.3.  So they need to do a blood culture, cathater urine test, and a lumbar puncture to rule out a blood infection and meningitis. Jake and I agree to the blood test and urine test, but we would like to hold of on the lumbar puncture until we see what the other tests come back with.  The student docs leave and get the real doc.  She tells us we can't wait.  They are going to put an IV in bethany and start antibiotics right away and they can't do that until they do the lumbar puncture.  Reluctantly we agree.  Mostly because at this point Jake and I feel like we don't have a choice.  That is what they are telling us- that we don't have a choice or a say.  This seems odd since we are the parents.  And of course it is the middle of the night. Jake and I talk later about how we feel like the hospital is going to call the police on us for medical neglect if we don't agree to whatever treatment they tell us to do.  After over and hour and attempting to get an IV in every one of Bethany's limbs with lots of physical trauma to her limbs attempting such, they are not able to get an IV in. They do the Urine test.  They also struggle to get this and make several attempts.  They call in an IV specialist.  I recognize him.  He did Kate's IV too when we were here with her a few years ago.  He get s it in seconds.  Then they attempt the lumbar puncture.  The staff suggests we leave the room.  I do. jake stays.  When I come back I discover that through several attempts and punctures to her spine they did not get any fluid.

At this point Jake and I both want to scream.

DOES ANYBODY KNOW WHAT THEY ARE DOING!
CAN WE SEE A REAL DOCTOR NOT A STUDENT!

Our daughter went thru a lot of extra trauma when her body was already stressed because staff didn't know what they were doing.  It seemed our newborn daughter was a test subject. Until the students failed and sent in people who knew what they were doing.
Poor Bethy is exhausted by now.  She has been poked and stuck for hours now when she usually is only awake for an hour or so at a time.  It is the middle of the night.  She wants to sleep and it is so sad.
They were not able to get a successful spinal fluid sample.
They told us they couldn't start antibiotics (which they insisted she needed right away) with out testing spinal fluid first.
But guess what.  When they failed.  They went ahead and gave her antibiotics anyways.

And admitted us.  We were told we would have to wait 24 hours for our blood culture to come back, and if it was clean we could go home.
Fine.
We will wait this out.
I rocked and held bethy and attempted to nurse her in a small chair while she was attached to several monitors and an iv.  It was a long night.  I think I slept for about 20 minutes. Sometime in the night a doctor came in and told us all about the Coronas virus.  They didn't say she had tested for it, just started telling us about it.  Then I asked.  "Yes they reply, didn't anyone tell you that is what she tested positive for"  No.  Nope. But thanks for keeping us informed.  sarcasm.

The next day Bethany's fever was mostly gone.  Her eyes were super gross.  Teaspoons of puss and infection we were wiping away from her eyes.    But otherwise she just seemed to have a cold.  We finally saw a real doctor,  Who told us the same thing.  We could likely go home if our blood culture came back clear.

Then the day came.  Jake went home to be with the kids and left us for a bit.  And we saw a series of  student doctors all who were 23 years old,  brunette women in mini skirts and tank tops, who all looked the same, talked to me like I was an idiot (when surely none of them even had a one child of their own) and told me.....
we would not be going home for a few days.
Bethy had a bunch of broken blood vessles on her ankle and a few on each limb.
\The student doctors studied every inch of her.  Marking each broken blood vessel.  Freaking out about each one.  Freaking me out somewhat intentionally I think about them.  Insisting they were a sign of meningitis.  Telling me they would need to do a different kind of spinal fluid test.  That it would take two days to get it done and get the results.  That we would not be going home.

I insisted that the broken blood vessles on my 10lbs infants limbs were from the trauma she endured when the idiot student doctors we saw the day before couldn't get an IV in my child.

The 23 year old brunette mini skirt wearing doctors patronized me.
"being a mom is so hard, it is the hardest job, nobody should ever say I'm just a Mom"
" Don't you think Bethany is too special to loose.... that is why we do all these tests"
"How do you know that?"  When I knew the blood vessels were a sign on meningitis.  "I can read the internet is my reply
They finally agree we can go home in the blood vessels don't get worse.
Sometime previous we mentioned we wanted to go home as soon as possible because we are paying in cash by the minute for this fun stay at the hospital. From then I feel like our judgement was questioned.  Like we maybe care more about the bill we would be getting than our daughters life.  Yeah right?
It has been a long day of me sitting in the small chair in the room holding my baby, rocking her to sleep, and so sad for her pain, her iv running what I think are pointless but mass amounts of antibiotic through her body.  i feel sad for her because she can't get comfortable.  She can't wear clothes.  She has stickers and bandaids all over, and a huge iv taped to her hand pinching her.  We can't swaddle her like usual.

But then they make us move rooms.
Because apparently nurses can't have more than 3 patients there.  And we can't share a room because of our virus.

We move to a different floor.  And have to see a different doctor.  Who does not agree.  Who insists we do the advanced spinal fluid test and wait up to another 48 hours. She tells us all kinds of new information that nobody bothered to tell us before, like that the advanced spinal fluid test takes two days, like Bethany can't eat until she gets the test. She is another student. I get angry.  Jake arrives mid- me telling this student doctor off.

"Each student doctor seems to tell us what the policy is to follow for infants but somehow it is all different"
"We feel like we have been bully-ed by doctors since we got here into treatment we do not feel is best for our child"
"Doctors like you keep telling us what we have to do to treat our child, but we are the parents and we get a say in our infants care"
"I don't really care what you say, we are waiting for the blood culture to come back and then we are leaving end of story"
"I want to talk to a real doctors, somebody who can actually make a decision with me, and I don't want to talk to you anymore"

She tells me we can talk to the real doctor about our concerns the next day when the blood culture comes back.

I throw a fit

"We are going to talk to her supervising doctor now, not wait until 4am so he can tell us something completely different too, we are going to talk to him now or we are just going to leave and take our infant with us"

She leaves.
Within 30 minutes her supervising doctor comes to talk to us.
I think we have been labelled difficult.  Our nurse is being extra nice and we are offered some specialist to talk to.  And of course the supervising doctor comes right away to talk to us.

Guess what.
He listens to us. He agrees that the broken blood vessels are likely not a cause of meningitis but caused by the doctors who couldn't get an IV in her and tortured her for an hour.
He agrees we don't need the advanced spinal test because broken blood vessels all though they are a sign of meningitis  it is the kind that would show up in our blood culture (which we have already done) not the kind that shows us in spinal fluid.
He listens to us that our daughter has not had a fever in almost 24 hours now, she has 100 blood oxygen, perfect blood pressure and heart rate, aside from some mild congestion she appears healthy.  She is eating and sleeping like normal. Alert and acting like herself.

And suddenly- for like the first time in my life, it turns out that throwing a fit got me exactly what I wanted.
But it was all true.  We felt forced.  We felt like they might call the police on us if we refused treatment.  My favorite... I mean least favorite is when student doctors would ask "don't you think she is just too precious to loose?"
No duh!
She is my daughter.

When our blood culture came back clear at 4am on Friday morning we asked to be released.  And so they disconnected and took out Bethy's IV. and released us and we left at 4am.  Not without making us an appointment for Friday afternoon in Heber with a doctor there.  Which was fine, we were happy to go see a doctor for a check up a few hours after leaving the hopsital

We arrive home early Friday morning.  Jake has maybe slept for 5 hours between two nights.  And hey he got new clothes and a shower the past two days.  I have slept for about 1.5 hours between two nights, and have been wearing the same clothes, some very uncomfortable jeans, for two days.  We get home and crash into bed.
I am exhausted.  But so happy to be snuggling my baby Bethy by my side in bed.  She seems happy too.

What a nightmare.
Primary Children's has been good to us in the past, but the last few days Jake and I both couldn't have believed there to be a hospital with worse care or communication.
It is a strange place to be in when you as parents feel that your child is alright and that certain treatment, testing or procedures are not right, but doctors tell you you are wrong.  It is hard to trust how you feel and do what you believe is best despite 8 different doctors telling you otherwise.
I have learned now to refuse to talk to student doctors and only speak to the supervising doctors.
In reality I was never that concerned about my baby.
The doctors made me concerned, and convinced me my child would die if I didn't do exactly what they said.  It felt abusive almost, how they in a position of influence over me at the hospital treated us they way they did to get us to agree to the treatment they wanted.
My child was mildly ill.  I feel bad she had to go through so much unessential treatment and procedures just to ensure she wasn't more sick.


But of course most importantly Bethany is fine.  Healthy and home.  And getting a little extra love.