Wednesday, May 2, 2012

Our Scary Time in the PICU

The Need for Electronic Medical Records: Portability and Patient Access

Apologies for those waiting for my next blog on diet - hope to have that soon. Today, I must digress as my friend Regina Holliday posted a link on Facebook about how the American Hospital Association is fighting the requirement in the new health care law that hospitals and doctors shift to electronic records and make them available to the actual patient! (can you imagine!)

Reading their rationale not only made my inner wonk furious - my inner mom began to cry as memories of Jake in the Pediatric Intensive Care Unit (PICU) at Georgetown University hospital came flooding back.

Jake was at the PICU because in June, 1999, he fell from the high dive at the Wilson High School pool onto the concrete deck below -- suffering a severe traumatic brain injury (TBI).  And as soon as the ambulance arrived at the pool in response to the 911 calls, we made sure everyone knew of his allergy.

Jake is allergic to penicillin. When he was 2 years old he had a horrible reaction after getting penicillin for an ear infection. First his ears turned bright red and then welts the size of small fried eggs appeared all over his body - especially his scalp. It took 3 weeks on antihistamines to quell the hives.

His brain injury was severe enough that he couldn't even breath on his own, so after emergency brain surgery that first night, he was put on a ventilator. As is often the case with ventilators, this led to a series of lung infections, each round requiring a powerful antibiotic. Despite our vigilance, and unbeknownst to us, the doctors at Georgetown put him on an antibiotic, Ancef, that is well known to cause severe allergic reaction in  many people who are also allergic to penicillin.

As I sat in the PICU and watched his ears begin to turn that tell-tale color I begged the doctors and nurses to check his chart, to check his medicines - I knew he was having an allergic reaction to something - but they ignored us. We (my husband Stuart, my mom and I) had to sit beside his bed and watch Jake go into anaphylactic shock just days after suffering both a severe TBI and undergoing major brain surgery. Only when the swelling in his throat put enough pressure on the hose for the ventilator making the alarms to go off and his tongue had swollen to the point it was jutting grotesquely out of his mouth, did anyone take action.

Unbelievably we were lucky on that count. Later, they would turn the alarms off on his heart monitor in an attempt (failed) to get us to quit asking questions about his heart rate and why they were doing nothing about it.  All his brain functions were going haywire during this period - body temperature, blood pressure, the pressure in his brain. His heart was beating wildly and sometimes as often as every few minutes and at least several times an hour, his heart would go into severe tachycardia and all the alarms would go off next to his bed. A light outside his room would flash an alert and the electronic signs hanging above, all over the PICU would announce he was in danger. The doctors and nurses, however, did nothing, each time turning the alarms off and insisting that this was not unusual in a brain injury and that his young heart could "take it."

To help us during this time my cousin Jay and his wife Tina had arrived from Indiana. Tina is a talented, well-educated, think-outside-the-box pharmacist who was horrified they had ever given Jake Ancef in the first place. We demanded she be allowed to go through his chart and make sure there weren't any other pharmaceutical time bombs lurking there. Everyone at Georgetown (we really pushed this) flatly refused to let either she or us to access his charts and records.

Finally, late one night a resident we had become friendly with took pity on us, swore us to secrecy and made the chart available to Tina, after midnight, in a small room near Jake's. We - Stuart and I - had to promise not to look - only Tina. Fortunately, everything else she saw with respect to medication seemed OK, but other things she found in his chart were shocking. Derogatory remarks about various members of our family (especially me). Complaints that we wouldn't leave his bedside. Outrage that we would demand this level of care for our son. And mocking of the expectations we had regarding the quality of the health care he should receive.

It took a days and days to get his allergic reaction under control because it took us days and days to get the doctors in the PICU to bring in someone from the allergy staff. It took even longer for his tongue swelling to subside, leaving his tongue torn and bloody from the pressure of his teeth. Our pleas for help in protecting his tongue were met with dismissal by the doctors - a damaged tongue wasn't on the list of any of the things they did. They were surgeons! neurologists! - and, as one nurse helpfully explained - our expectations were too high and the doctors far too busy and far too important to meet together to try to find a solution (seriously - she used those words!). Finally, with help and supplies from a friendly nurse Stuart fashioned protection for Jake's tongue and as the allergy medicine took effect the swelling slowly subsided.

With the memories of Jake's earlier penicillin reaction on my mind I begged nurses, doctors and residents to be vigilant about continuing his benadryl as it had taken weeks of the medicine to stop his reaction when he was two. Back then, a missed or delayed dose would cause his ears to redden and welts to begin to appear again. Some on his team assured me they would add the order on his chart, others told me rather bluntly that I was wrong - no one ever had that kind of reaction, nor needed medication that long. I had no access to his chart, to his record, so I had no idea what it really said there about his benadryl.

A few nights later, the night before he was to be taken off the ventilator and begin to breath on his own again, his doctors - without telling us - took him off the benadryl. Early in the morning, not long before we were to take him off ventilation, his allergic reaction came roaring back, over-powering the ventilator. He was again rushed to emergency surgery, this time to cut a hole through his throat to place a tube into his trachea so he wouldn't die from anaphylaxis. Allergy medicine was begun again and I was given a lecture by several doctors and a nurse on the powerful, negative effects of over-the-counter benadryl (not kidding) and thus justifying why they had taken him off it in the first place.

Weeks later (after other harrowing experiences) I rode with Jake in an ambulance from Georgetown to Kennedy Krieger Institute in Baltimore for 4 months of intensive rehab. Stuart, my mother and her dear friend (my 'second mom') Kelly followed behind. The ambulance medics were surprised by his tachycardia and alerted the on-call doctor who would be checking us in at KKI. He wanted to see Jake's charts, his records of what Georgetown had done - I had nothing. They were supposed to send a "report" to KKI at some point, but did not intend to send his complete records.

They hooked Jake up to a heart monitor in his new room. Immediately all the alarms went off and the doctor asked me what Georgetown had done to deal with this because it was really, really serious and really, really bad for Jake. He's asking me - the MOM - because that's all he's got. His mouth dropped open when I said "nothing". He called a nurse ordered some medicine. "What", I asked, "are you ordering?" His answer - "huge doses of benadryl"- was kind of a last mommy straw for me. I burst into tears and fell into a chair. I cried so hard and so long I couldn't talk - my mom had to explain to the doctor why I was crying - as well as fill him in on Jake's care at Georgetown (thank goodness we come from a family of note-takers!)

So yeah, you bet we need electronic records - records that are available when a patient is transferred to another facility and available to the patient and their next-of-kin who have the moral (and should have the legal) right to see them. And you gotta wonder why the American Hospital Association is fighting it.

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