Monday, April 25, 2005

Childhood - Something To Survive

Or How NHS Nearly Killed My Son

On Saturday, Winston came close to dying from renal failure. Not because we failed to intervene, but because the British NHS failed to act.

We've been back from being admitted to Homerton Hospital for one day. We were there for 24 hours.  I can't believe they discharged Winston.  But, it seems - that in the U.K. - childhood is something to survive and endure. If you are lucky, you will grow up.

This weekend, the majority of the agents of the NHS made it perfectly clear that guiding infants through childhood is not a sacred vigil to be diligently and rigorously undertaken. We have no obligation to sustain, honor and keep alive the innate trust born within each miraculous child. Childhood is not something to protect. And it certainly not something to nurture.

Sorry in advance for the rant - but - here is the story.

April 20th
Winston’s 2nd birthday looked like it was getting off to a brilliant start. Norman took the day off from work to celebrate with us. We went down the the Museum Of Childhood. We played there for a better part of the morning and decided to do something more interesting.

On the way to the playground, Winston fell asleep. So, Norman and I had lunch. When Winston woke, we meandered over to the playground and played. Then out of nowhere, Winston puked. No biggie, kids get little viruses all of the time. We went home, plugged into the computer and made sure he drank a lot of liquids.

Well, he kept puking and retching and vomiting all night. He couldn’t sleep because after he nursed - up it all came. Again and again. All night.

April 21st
The next morning brought the runs. Every fifteen minutes we needed a new diaper. He couldn’t sleep. He had become irrational. (Okay that is the normal state of being for a 2 year old. But, Winston is more rational than the average toddler.) He had a high fever. He was on a mission for juice and water. It was all he could think about. So, we let him stand at the sink with running water and drink and drink until.......... he retched or filled his diaper or both. We did this all day.

He was so tired. He couldn’t sleep. If he slept, he woke from diarrhea or vomiting. Then, the mission to quench his thirst began anew. He wouldn’t settle down. Eventually he began to refuse breast milk. He was so thirsty - he would guzzle the milk until his tired too full tummy and the virus would reject it.

At 4:00 I called NHS Direct. We went through a checklist. He didn’t seem severe they said, but he needed to be seen. They gave us the number of our nearest local doctor. So, I called Dalston Practice. I explained our situation and that NHS told us to call and be seen. I was informed that since he wasn’t a patient - they couldn’t see him. They told me to take him to the clinic. The clinic was a 20 minute bus ride away. Norman and I decided to see if we could make it through the evening.

The evening was an intensified version of the day. Winston became more and more irrational. He’d ask for juice and then change his mind. He’d ask for water and then change his mind. He’d ask for juice again. Then water. He’d take a little and lose it immediately. I called NHS Direct again.

I went through their polite checklist again. He had the shakes. His lips were blue. He had a fever. He was retching. He had a full diaper every ten minutes. Oh, they didn’t think it sounded so bad. But, if I wanted to - I could take him to the ER.

We took him to the ER at Homerton Hospital. They checked us in. They had us strip him down and sit him on a blue pad on my lap so I could catch a urine sample. I was to sit in front of a waiting room full of people with my naked son and try to catch urine between upchucks. Okay - so modesty levels for children are different here.

The doctor examined him. The normal questions. Normal birth? Weight at birth? How long breast-fed? When I told him my son was still breast-feeding, he was more concerned about telling me that “studies had proven that there are no benefits to breast-feeding past one year.” I politely informed him that my doctor in the U.S. disagreed vehemently. At which point he scoffed and said, “She should know better. They’ve done the studies over there. “ At this point I shared that fact that the World Health Organization felt differently and that I was here to help my son.

The doctor looked at him. He said Winston looked like he had a simple G.I. Tract Infection. His reasoning for Winston’s good health was based exclusively on the fact that Winston very quietly and nicely through the examination.

(I would like to ask how many toddlers have you ever seen who have been trained to sit quietly and patiently through a doctor’s visit. And if so...regular beatings must be a part of the curriculum.)

When I asked him about the urine sample I was unable to collect. he said, “No need to get a urine sample. He’s mildly dehydrated. It is obviously a common G.I. Tract Infection. It’ll run its course tomorrow. Just keep giving him fluids. Maybe dry toast, a little grilled chicken. 7-Up works wonders if they won’t take the re-hydrating formula. (I had told him that I had bought some and Winston wouldn’t take it.)

At 4:00 in the morning we put Winston (with a temperature of 102 degrees Farenheit) in his stroller and walked the four miles home. It was maybe 45 degrees Farenheit. He slept on the ride home.

He woke with a vomiting, diaper-filled thirst upon arriving home.

April 22nd
By midmorning, Winston’s bones were showing through his skin. His eyes had sunken. I could see his skull through his face. His lips were blue. His eyes were glassy and crazed as he kept begging for juice. Begging for soda. Begging for water. He couldn’t sit down.

We let him stand at the sink again. Filling his cup with water. Drinking it. Filling the cup again. Changing his diaper. Cleaning up the vomit. Finally, he couldn’t even stand at the sink anymore. His little hands were shaking so much he could barely get the beverage in his mouth.

We sat him down. We had 3 cups in action at all times. He’d drink a little. Change his mind. Drink a little. Vomit. Fill a diaper. Drink a little. Vomit. Drink a little. Fill a diaper. Finally he couldn’t even sit up anymore.

As he lay on the floor getting his diaper changed I was reminded of the pictures that came our of Ethiopia in the 80’s. He didn’t look anything like my son anymore. He looked like an advertisement for famine relief.

Then he began losing consciousness.  He went limp. His eyes rolled back up in his head. We couldn’t wake him.

We were terrified. We called an ambulance. We were able to wake him before the ambulance came. Ten hours from being sent home from the hospital, we went back.

At the hospital we told them we had been there 10 hours before. They got his chart. We sat and waited.

They moved us back to a closet-sized triage room. We sat and waited.

The waiting was broken up by trips every 10-15 minutes to the only place we were allowed to change diapers. I gathered up my changing blanket, diaper, wipes, and Destine. I left the triage room, past the treatment room, past the nurse’s station, through the children’s waiting room. Out of the locked door, through adult emergency waiting room, down the hall, to a bathroom with a changing table. Then went back to

sit and wait. They weighed him. In the ten hours since his last visit, he had lost 1 and a 1/2 pounds. (Not a problem, his socks were probably heavier last time.)

We sat and waited. They took his temperature. Almost 103 Farenheit after having been given Ibuprofen not 2 hours ago.

We sat and waited. He finally nursed. They decided to get a urine sample.

We were moved to the waiting room. We lay him down on the chairs. And he lost consciousness again.

Finally - a doctor was ready to see him. His urine looked good. It was full of minerals and fats. Obviously, he wasn’t burning off fat yet. With no sleep, I nodded my head thinking something was not right. Now, in hindsight, I shout, “GEE! I wonder why?  Could it be because the breast milk just swiftly flushed through his system?”

So, according to what the doctor insisted were their “scientific and objective checklist of symptoms,” Winston was moderately dehydrated.

I told the doctor that if we had been back home in the States, Winston would have had an I.V. in him two hours ago. The boy had to be hydrated. I was informed that in the United States, “They over-intervene.”

He tells me this, as my son is laying unconscious on the examining room table. He tells me this with my son’s half-opened eyes showing his pupils going in different directions. He tells me this with my son’s ribs poking up through his skin like some newly plowed field. He tells me this with that sweet skull face and floppy skeleton arms akimbo and unmoving.

I say, “He’s unconscious.” The doctor says, “He’s sleeping.”

Because I am unsatisfied with the care, they transfer us to the “observation unit.” They will see if we can hydrate him using scientific and objective methods for an hour. This involves giving him 10 ml of juice every 5 minutes and charting the input and output.

After all, I’m only imagining the frantic insomniac child pounding whatever liquids he thinks might stay down. And obviously, I’m only imagining that I’ve been through 60 diapers in 48 hours. And I must be neurotic if I’ve had do do 8 loads of laundry in a 48 hour period.

So we sat for five hours with our son in the emergency room as he struggled to stay alive. We sat with our dying son while the doctors pussyfooted about with "low-intervention" techniques to rehydrate a child whose bones were showing through his skin; whose eyes had sunken to look like a famine victim and whose lips were blue; who was passing in and out of consciousness in front of their eyes.  

After two hours of sipping juice, my son passed out again. (Oh, he’s just sleeping. Sometimes children sleep like that.) I told them that I have watched my son sleep every day for two years and this was not sleep it was a seizure.  

Anyway - I finally became a belligerent American.  Told them I'd had
enough pussyfooting about. I had been doing this "low-intervention
rehydration" at home and I had come to the hospital a SECOND TIME for
a solution.  That meant an I.V. drip.  And that I normally will
educate myself and pursue all mild solutions at home before even
thinking of turning up in ER.   Back home, I NEVER go to the ER unless
I am willing to have my son endure poking and prodding with needles.
In the States, he would have had an IV within one hour of turning up
at the hospital.  (And I would have had to fight them to try low tech
methods first.)

They were going to discharge him.  I scream bloody murder. The doctor says he has to go think about it for a little while and call his superior. The doctor goes away and thinks about how cost-effective it would be for the NHS to save my son’s life tonight. He comes back and says that they will admit him overnight for observation and put in an I.V.

So, SEVEN hours later, they put in an I.V. Winston slips into the first comfortable sleep in over 55 hours. Later, the blood tests reveal that my son was so severely dehydrated that he was on the verge of renal failure. This was the result of their waiting and may have caused permanent damage to his kidneys.  The doctor apologized and agreed that I was in fact correct.  He suggested that my son had an exceptionally strong
constitution which was why he only appeared slightly dehydrated. And that he’s a real fighter.

Yeah, well so am I. So what. And gee, how nice to have passed along good, strong genes. It doesn’t make me feel any better. The end result is thank goodness for breast milk.  I think its what kept my son alive.  

April 23rd
Once we were admitted, we had a fabulous British African female doctor who was delighted that he was nursing. She didn't care if she couldn't measure it, she was just happy he was getting something.

She takes more blood. Reassures us; gets a past medical history; tells us to rest and rest. They collect more urine, but they actually employ some technology to do it this time. Hooray! I must have looked exhausted.

Winston stays asleep, nursing all night long. At moments, I wake. I can almost see is flesh filling back up like a water balloon.

In the morning, much to my surprise, they stop the fluids. It’s back to the juice method of hydration. He is supposed to drink 10 mls every 5 minutes, even though he can’t stay awake for more than 15 minutes at a time. Not to worry, I have breast milk. I co-sleep. We’ve been doing nighttime self-service for over a year.

When I ask why stop they are stopping fluids, they tell me, “Sometimes they forget how to be thirsty if you leave an I.V. in too long.”

I see. That’s why he nursed nonstop all night long. Scientific, objective methods. Riiiight.

Juice and vomiting. Sleep. Juice and diarrhea. Sleep. Juice and vomiting. Sleep. Juice and diarrhea. Restless sleep.

Breast milk retention, I.V. fluids and peaceful sleep.

My scientific, objective hypothesis says he needs an I.V. again.

Afternoon falls upon us. My mouth drops when they release him. (He had vomited about 40 mls - which they chose not to chart - not 5 minutes before the release announcement. He’s stable.

They send us home. I tell a nurse that in the States, Winston would never have been released. She informs me that if a child is so unstable that they require more care, then they have to be transfered to another hospital. It’s a lot of paperwork. He looks so much better.

April 24th
And I’m furious. (Maybe if I’m up to it - I’ll rant about the inhumane method by which blood is drawn from children because children’s rights activists insist that taking 45 minutes to draw one vial of blood is more humane than swift, merciless efficiency.)

Winston is still terribly sick. He still can’t walk. He can’t sit up for more than five minutes. I have to walk really slowly when I carry him anywhere or he loses everything in his belly. He is still not holding onto much regardless of what we do.

But, we’re home. Because - it costs too much to care for children.


Mendi O. said...

wow. take care. you're all in my thoughts over here.

kjames said...

we are thinking of you. keep strong and follow your instincts. we love you all. take care.

Alexis and Lawrence said...

It's a horrible story. And we're speechless. Thank God you're nursing. Thank God you shouted at the imbeciles. We hope you soon recover--from all of it. Much love.