October 20th: Falling through the cracks

I've raved and raved to everyone and praised God for the excellent care Ryan has gotten at Dana Farber. 

And then he was admitted to Brigham & Women's Hospital.

It's terrifying to fall through the racks at a world-renowned "Center of Excellence".

I can't tell you how confident we felt going into this, and knowing that this transplant program is one of the best in the world.  Reading the booklet I felt the program was so well organized, and I felt safe and secure with Ryan in their hands.  Everything at DFCI was supportive and reassuring. 

The problems began the minute we came to BWH.  Ryan's ER care on the 11th was excellent.  Except the fact that the Transplant team - who should have been the most interested in his care and in communicating with us - left us in the ER for hours NPO (i.e. prohibited from eating or drinking before a procedure) waiting to have lines placed and be admitted, after having decided to cancel the procedure and postpone the transplant  - and didn't bother to tell us.  I found out from Meghan at 4:30 on a Friday after the donor nurse called to tell her.  I told myself that they were busy taking care of sicker patients.

OK - water under the bridge, busy Friday, these things happen, let's move on. 

We go home for a week, come back with a really positive attitude, ready for "the best of the best" to do their stuff.

On Friday evening we were admitted quite late - Ryan ate in the morning when he wasn't supposed to eat. For safety reasons I fully support, they made him the last case of the day for his line placement under IV sedation.  So although Ryan was frustrated I kept reassuring him and telling him to quit complaining. 

I asked the nurse what time he would get his chemo on Saturday and she looked surprised and said she didn't have any chemo orders, and was I sure he was to get chemo?  I described the plan given us by Dr. Cutler which included high dose cytoxan on Sat and Sun followed by TBI Mon - Thursday.  She replied that sometimes there are changes and we should just wait until the morning.

Ryan asked for something for pain at the procedure site and was offered only tylenol, the nurse saying it was probably just the tape that was bothering him.  Really?  With 4 incisions in his neck and chest and a line tunneling under the skin on each side?  Plus: Ryan was told by Dr. Cutler last week not to take any tylenol because of liver concerns.

Saturday morning I arrived about 8:30 - certain that I had overslept and missed rounds.  Ryan had been given some dilaudid for pain at 6 am which triggered a severe headache.  Honestly, I'm not terribly concerned about this because it's just pain.  Sounds crazy, but if the nurse is busy with something more pressing with a sicker patient delays sometimes occur.  Surely when he needs the "real" care we came here for, the response will be better.  He asks for some morphine (now the headache hurts worse than the incisions), and is told he'll get some right away.  Two hours pass, and several calls later another nurse gives him 2 mg since his nurse is too busy.  No relief.  An hour later his nurse tells him he should wait a few hours to see if it "kicks in".  Are you kidding me?  IV morphine is usually gone by an hour or so.  At noon, he again asks for pain relief, and the nurse says she'll be back in when the doctors make rounds in a little bit and maybe they will order something then.  Ryan is in agony (maybe partly anxiety - but even so, shouldn't that still be addressed?) and retching into a basin. 

12:30: the attending comes in with the team and nurse and cheerfully says, "So how are we today?"  (didn't the nurse bother to mention that he was requesting pain relief and retching?)

Ryan responds, "pissed off" - not great way to open communications with a doctor you don't know.  The visit lasted about 2 minutes with the attending telling him they'd get him something.  No discussion whatsoever of his cancer, plan of management, what will be happening today.  Why did she even bother to make rounds on him?

But now he's been 4 hours without relief, and with a nurse who has been giving me the impression she can't get a response or orders from a physician.  I grabbed the resident with the chart as she headed for the door and begged her to write an order with a range of dosage so the nurse wouldn't have to bother her if the dose needed adjustments.  She looked hesitant, so I played the doctor card and told her as a physician I knew that such orders could be written and worked well for patients and house staff alike.  She wrote the order.

The afternoon passed hour by hour and I began asking the nurse when Ryan would be getting his chemo.  She said there were no orders for chemo, but that she was sure he'd get his radiation next week since radiation oncology doesn't work on weekends.  I stressed that Ryan was supposed to get chemo today asked her to call the resident and she assured me that she had.  I became more and more uneasy.

Around 5 pm I told her I really needed to speak in person to a physician who could tell us what was happening and explain if there was a change of plans.  No response.

At 6:30, I told the nurse if there wasn't a physician in my room by 7 pm, all hell was going to break loose.  (Do I really need to do that to get care?)  Then I overheard her talking to someone at the nurses station saying chemo orders needed to be in to the pharmacy by 9 pm and asking for orders.  I went out and asked if the conversation was about Ryan (believing that most patients had probably received their chemo much earlier in the day).  She reassured me that chemo orders "were being written" and he'd still get his chemo today. 

By now I am completely exasperated.  After he had no pain relief and little sleep last night, and was in pain and unable to rest most of the day, we're going to wait until 10 pm to start chemo that has to be given with large volumes of IV fluid and will have him urinating hourly for the next two days?  Really? 

Oh - And by the way, no doctor would be available to come in.

Now I'm ballistic - I demanded that some physician come and speak to us.  Immediately.  (foaming at the mouth, transforming into a strange combination of the increidble hulk and wolverine with rabies)

Dr. X, to her credit, did come in from home and talk to us and took responsibility for the situation.  She was under the impression that another attending was covering Dr. Cutler's patients and that that doctor was responsible for the chemo orders.  (What?  She made rounds at 12:30 and there were no orders on the chart and she didn't follow up? - precisely what did she do on her "rounds"?)  As she stood near the door talking to us, I told her to grab a chair and come sit down.  We needed to talk.  I was very frank/blunt (while trying not to get a label as the bitchy/doctor/mother) about my concerns.  She wrote the orders and Ryan finally received his chemo - at 1 am.  Ughhhhh..............

One explanation Dr. X gave for the day's errors was that Ryan was not on the usual transplant floor - 6A - so the nurses on 6D where we were may not be as familiar with transplant protocols.  Again - really????  The housestaff (residents - physicians in training who are in the hospital round the clock and do much of the hands-on patient care in teaching hospitals) was on the same floor (6D is just around the corner) and they couldn't come see him when (if?) the nurse called them?

I tell her that I want Ryan in the next available bed on the Transplant Unit.

All of these things are huge potential sources of medical error.  If I wasn't a physician and willing to raise heck, what would have happened today?  How can I leave the hospital at night or even go home to my family in Albany for a day or two and ever again feel confident that people here have their act together?

I feel violated.  My trust and sense of security is decimated.  How on earth can we feel confident that he will even survive this if this comedy of errors continues?  My feeling all day was that we needed to take the cells and run to another facility as fast as I could!! 

Although I fully understand a patient's first day in the hospital is not his riskiest day medically, it IS risky emotionally.  It sets the stage psychologically for all that follows.  Relationships are established.  Trust is built.  And if it's this messed up when he's not sick, the stakes are stronimically higher in a few days when he is sick!

  

Again unable to sleep, I spend most of the night in the hotel cafe so I don't disturb Meghan's sleep, writing a scathing e-mail to our transplant nurse coordinator and playing solitaire.  I took Meghan to the airport, went to bed and got 3 hours of sleep and went back to the hospital.  When I arrived the less-than-helpful-yesterday-nurse asked if I was feeling better today.  Controlling my urge to re-arrange her dentition, I walked past her into Ryan's room without a reply.

This is really challenging.  I'm really trying to control my anger, no-make that rage, I want to tuck him into my arms and run away.  Trying to be calm and read my book - same page for most of the morning.

Ryan tolerated the first day of Cytoxan pretty well.  Tongue sores are beginning.  He's tired from no sleep, but he is upbeat.  For his sake I'm trying to smile and be positive.  But I can't help feeling my face probably looks more like a grimace.  I'm still so angry (and scared for what lies ahead) that I'm trembling.

At 2 pm he's transferred to 6A - the "real" transplant unit.   Dr X is there with orders.  She stops in and discusses his care.  The nurse on this unit is upbeat and informative.  She orients Ryan to the unit, showing him where the snacks and drinks are.  She tells him what time he is to go for TBI in the morning.  What time he will get his chemo tonight (midnight again, since it needs to be 24 hours after the first dose).  That in precisely 2 weeks his hair will fall out again.  That his GVH (graft-versus-host) meds will start tomorrow on "Day -3".  Transplant day - Thursday Oct 25 - is Day Zero.  The days counting down to it are negative, and the days after it are positive.  Certain things happen predictably on certain days, and certain treatments are given at certain times in the process.

I slump into the chair to read my book.  I feel the tension starting to leave my body.  I think maybe I feel safe again.  Then I feel my rage over yesterday resurface.  Gotta get over this.  This isn't doing anybody any good.  Need some rest.  Need to put some space between me and this place and pull myself together.

Confident (or at least hopeful) that Ryan is finally in good hands, I decide to go home for a couple of days.  Sophia is here with him, and she's much better than I at cheering him and entertaining him.  Back to the hotel to pick up all of our laundry.  Scalp is crawling.  Shoulder & neck are tight.  Stress.  A few Motrin and a large diet Coke from the nearby McDonald's to keep me awake and I hit the road hoping to not fall asleep on the drive. 

Driving home, I feel like I need to vent to somebody or I'll explode, and poor Sean calls from Albania.  So he hears my whole rant.  I can feel the love and support through the phone, and it comforts me.  Through the front door and both girls attack me with hugs.  Fighting back tears.  The house looks great - Tim knew I was coming home to surprise the girls and had them all help clean the house.  Snuggle with the girls, sing silly bedtime songs, relax into my bed hoping for sleep.  But the minute it's quiet and my lids close everything comes pouring back - the plight of the characters in the book I'm reading (maybe I should switch to romance novels for a while), problems with tenants, details of refinancing the mortgage on a rental place I own, what's left to be done before Ryan comes home, is Ryan getting any rest?, need to get the dog shaved to minimize dog hair in the house, need to schedule an orthodontist appt to replace MeiLin's spacer and fix Kaia's retainer where it's cutting into her gums, is Ryan safe? are they giving him his treatments on time?  what if the night nurse on the new unit isn't as responsive as the day nurse?  Got up, took an Ativan (a weaker cousin of valium), watched some mind-numbing TV in the recliner until I fell asleep. 

Tim got the girls off to school today without waking me up.  Guilt.  I wanted to get them breakfast and kiss them before they got on the bus.

The book I'm reading is about a young mother in Germany who struggles to protect, clothe and feed her child during WWII.  So much is completely beyond her control.  She does whatever she has to do, yet it never seems enough.  I relate. 

Yup - time to switch to romance novels........

---Barb