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Not so very long ago, I took care of a rather young patient in her 30′s.  She had a respiratory illness that quite frankly baffled us.  We couldn’t figure out exactly why someone so young and healthy was being completely knocked on her butt by a pneumonia.

The illness progressed to the point where she required bipap to help her breathe.  This is a conforming mask that goes over the mouth and nose and gently (?) pushes oxygen into the patient’s lungs.  It’s considered non-invasive and is something we typically try before intubating patients.  Although most patients tolerate it fairly well, I know it’s uncomfortable.  It can be difficult to put the mask on the patient and achieve a good seal so that no air escapes around the mask.  For this reason, we don’t take it off very often – just to do mouth care, give meds, sometimes give a meal if the patient is up to eating.  Some patients can’t even tolerate coming off the mask to eat more than a few bites of dinner.

So my rather young patient was experiencing what it was like to have a bipap mask on to help her breathe.  I know in some ways it was giving her a break since she didn’t have to work so hard to breathe, but in other ways it was pretty bothersome.  When I was getting report, the nurse told me that the last time they’d tried to take the mask off to give her a break she only lasted a few minutes before becoming short of breath again and dropping her oxygen sats.

So it was with an inward sigh that I explained how breakfast would go.  I told her we could take the bipap mask off for her to eat, but that I wanted her to hold an oxygen mask over her nose and mouth between bites.  She readily agreed; I think she would have done almost anything to get the bipap off.

Breakfast came and I got her all set up.  The respiratory therapist (RT) got the bipap machine off, and we gave her a regular oxygen mask.  I didn’t have high hopes that she would last very long off the bipap and watched her very carefully from my desk across from her room.

She was very good about using the plain oxygen mask between bites.  She lasted 5 minutes, then 10, then 15…. a half hour later she was still doing great just using the oxygen mask.  I was thrilled!   I went in and told her that she could just keep using the plain mask but to let me know immediately if she became short of breath.  I told her I’d be watching her oxygen sats and if they started falling, she would go back on the bipap immediately.

To my complete and utter surprise, she lasted through lunch!  After lunch I could tell she was pooping out some, even though her sats were holding just above where I wanted them.  I told her I thought she should go back on bipap and rest over the afternoon.  She somewhat reluctantly agreed.  I was personally delighted with how long she lasted and told her and her parents that it was very encouraging that she did so well for so long.

About 20 minutes later, I was sitting out at the desk when I saw the patient’s mother come out looking a bit dejected.  I wondered if my patient was okay so as she walked by I asked if she needed anything.  She replied that she was just a little sad and I was genuinely curious as to why.  So I asked, of course.

She replied that she had been so encouraged throughout the day while her daughter was off bipap, and now that she was back on it, it seemed like a step backwards.  It was her 30 year old baby sitting in that bed and she was very understandably worried about her.

So while I was inwardly (and a bit outwardly!) cheering that my patient lasted a good part of the day without bipap, my patient’s mother was very dismayed about the same event.  I tried to tell her that her daughter was doing great, better than I could have even hoped, and that seemed to mollify her a little.  It just never would have crossed my mind to be sad about the whole thing.  I’m glad she came to talk about it.  It definitely provided a different perspective.

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The Kidnapped Napper

My patient’s daughter had been up all night in the ED with her mother and by now it was just after noon.  She was very tired.  Nonetheless, I needed to find her to ask an important question.

I got to the waiting room and found approximately 10 family members, but not the daughter.  I asked where she was.

“We aren’t really sure.”

I thought this was a strange response.  Not only was she a nurse, but the person I wanted to speak with knew the patient best out of everyone there.  She just wasn’t the kind of person who took off without telling anyone where she was going.

“Ok… ?”  Then I just stared at them all, because sometimes that will elicit more of a response.  People don’t like being stared at blankly.

“The doctor told us that he took her somewhere to rest, but he said that we had to leave her alone, and he wouldn’t tell us where he took her.”

Hearing “we think she ran off to join the circus” would have been only slightly more surprising.

I went back to the nurse’s station and related my story to some other nurses working with me that day.  We were all quite puzzled and just a tiny bit amused. As it happened, the doctor in question showed up at the desk and I told him that I had something important to discuss with the patient’s daughter and would he mind, please, letting me know where he stashed her?

He said he would not do that.  He said she was tired and stressed by her mother’s condition and needed rest.

Well, yeah, but I really needed to know if the patient had had the flu shot this season, lest I be reprimanded over not providing a complete admission record.  (Not really, but I did need to know something rather important.)

He said she’d be there in a little while.  About half an hour later she appeared in her mother’s room.

Her family thanked me profusely for “finding her.”

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The Case of the Mysterious Alarm…

I received this email from a dear friend of mine recently:

Hey everyone!

So,  for the last 2 1/2 weeks my husband and I have been seranaded with alarm tones every day.  We thought it was the new alarm system we had installed (it does a lot of automatic things we have since disabled), then we thought it was the smoke detectors…a new ringtone on our iPhone?… the battery charger on his new bike…his computer when his e-mail was hijacked?…the battery on my bike mileage computer?…my new alarm clock?…the refrigerator ice maker?…the clothes dryer? …everyday we checked everything, and everyday we thought we had found and fixed the culprit, until the next morning when we would hear it again!

It was not until yesterday morning when we figured it out… can you guess?

It was coming from my husband’s chest!  The battery on his pacemaker/AICD was alarming to let us know that he was just about out of juice!  Four years ago they told us we would hear that when the battery got low, but that was a very long time ago…and it just didn’t sound like it was coming from him!  We sent a modem transmission, and the doctor called back to say, “come on in!”

After talking with my friend later, I found out that her husband had his pacemaker replaced and all is well.  It took about 2 weeks to figure out where the alarm was coming from, since it only sounded once a day and only for about 20 seconds at that.  My friend expressed disbelief that it was so hard to determine that it was coming from her husband but surmised that going through body tissues helped the sound disperse enough to make it a mystery!

This left me wondering if any of Dr. Wes’ patients have had similar trouble with figuring out that their chests were alarming!

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The Double Edged Sword

My son accidentally ingested peanut butter yesterday.  He’s allergic.

He’s done this once before, which is when we found out about the allergy.  He had some really awful hives 3 hours after he ate that small bite of peanut butter sandwich but that was all.  His allergist told me that it would most likely never get worse than that.

He managed to eat some more yesterday.  I braced myself for the hives to come, and we dosed him with Benadryl.  An hour later he vomited.  The pediatrician’s advice nurse advised me to take him to the ER.  At the time I thought it was overkill.  He wasn’t having any breathing difficulties beyond the cough he already had (he has a cold).  He definitely wasn’t acting quite right, though, so off we went.

I barely made it down the street before he started having very long coughing fits.  He was breathing okay in between, but he just kept coughing so much.  He couldn’t go more than 10 seconds without coughing.  About a mile from the hospital (this is probably 1 1/2 hours after ingestion) he started putting his fingers in his mouth but wouldn’t tell me why.  Itchy tongue?

It was the longest ride of my life.  Traffic, red lights.  Imagine being the 13th car at a red light when you have an emergency!  Of course there was no parking when I got to our nearest ER.  I hastily parked in a “reserved” space (sorry, director of geriatric services) and ran in.  Although the waiting room appeared to be full, there was no line at registration.  When I put him on the counter, I noticed that his lips were bluish.  I told the lady at registration and he was in triage within about 30 seconds.

I was a little hesitant to come to this hospital.  About a year ago I had a panic attack, which I had never had before.   I had been hyperventilating for a couple of hours (due to a reason not related to the panic attack) and then it occurred to my CCU trained brain that hyperventilating for a few hours might be Very Bad for my serum pH level.  This made everything exponentially worse and I was immediately convinced that I was going to die.  Convinced. It didn’t occur to me that debating whether my pH was above or below 7.1 might be indicative of the fact that I was most likely just fine.  I think if one’s pH is really 7.1 they aren’t debating much at all!

So we went to the nearest ER late at night.  I was doubtful that I’d make it there alive, visions of ABG’s being drawn and intubations happening… I was really scared and really quite irrational.  But my CCU brain was still there, feeding into it all, convincing me of all the bad things that could happen.

When I got to triage, they could not have been less impressed with me.  A ho and a hum and a normal pulse ox later, I was thrown to the waiting room.  I’ll admit that the normal oxygen level calmed me a bit but I was still hyperventilating for some reason and could not stop.  Already long story short:  Panic attack caused by hyperventilating caused by a probable reaction between two commonly prescribed drugs that I’d taken earlier for The Worst Headache Ever.  Whatever it was wore off, I calmed down, we went home.

So I wasn’t sure, running into that same ER with my son, how responsive they’d be.  I had nothing to worry about.  The triage nurse exuded a level of calm that blanketed over everything.  It wasn’t an unconcerned or disinterested calm.  It was a “I’ve seen this before and know exactly what to do” calm. She handled my son (and me!) perfectly.  She wanted to put the pulse ox probe on his finger and told him that Elmo had been there the day before and had had the same sticker put on.  My son doesn’t know very many cartoon characters, but he knows Elmo very well.  If she’d said Dora or Mickey Mouse or Barney, he wouldn’t have had a clue what she was talking about.  But because Elmo had had it the day before, he finally reluctantly let me put his finger out.

His pulse ox was 90, which is not very good.  Normal is about 95-100 on room air for a reasonably healthy person.  I told them it was an allergic reaction to peanuts and they got us back to a room so fast our heads spun.  When his oxygen level dropped to 85, once again my CCU trained brain had visions of Horrible Things happening, but it never came to that.  After some oxygen, Benadryl and IV steroids, he was back to almost normal.  The hives did show up 3 hours after ingestion on the dot, and they were uncomfortable but not as severe due to the meds he’d received.

So being a highly trained RN is a bit of a double-edged sword when healthcare becomes personal.  On one hand I never needed to ask for clarification about what anyone was saying, and I had no trouble understanding the conversation between the doctor and nurse.  I knew the reason for and possible side effects of every medication they talked about giving him.  I knew what all the equipment was for and what the normal numbers were supposed to be.

On the other hand, I knew exactly what they were talking about, I knew what everything was for and what normal numbers were supposed to be.  When I realized they weren’t normal, I was pretty freaked out.

I intuitively knew why we had to put an IV in, but couldn’t help thinking about possible infection of the site and infiltration.  I wasn’t worried about giving the Benadryl as he’s had that several times in his life for various reasons, but the Solumedrol he needed?  That’s a drug I’ve probably given a thousand times, and never have I seen a reaction from it.  But this was my son, and how was it going to affect him?  Did they know how to calcuate the dosage based on his weight?  Would there be a miscalculation while drawing it up?

Everything turned out fine.  Everyone was professional and competent and knew just how to deal with a sick kid and his anxious mother.  Kiddo is completely back to normal today and is no worse for the wear from the whole experience.

But now my complacency about peanut butter is gone.  The hives were certainly awful but not life threatening, so I hadn’t really been overly concerned.  I’ve been careful, of course, as have those who watch him, but 3 year olds are 3 year olds and they are amazingly fast.  Now that I know it can affect his airway, I’m even more concerned about the times that he won’t be in my direct control, especially when he starts to go to school.  I feel like I’m going to need to tattoo it on his forehead.  I think the public in general (and schools in particular) are more aware of allergies, which is a tiny bit comforting.

He’s also allergic to eggs, which I used to think was the bigger pain in the butt.  There’s a lot more that he can’t eat due to eggs than peanut butter, but his reaction to eggs is very minor comparatively.  I used to even think that if I had a choice, I’d rather he not be allergic to eggs.

I’ve changed my mind.

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When Beth found out that her husband had cancer, a friend suggested that she look into creating a page on CaringBridge.org.  As she puts it, “CaringBridge became a tool to help us communicate with others.”

I spoke with Sona Mehring last week, who is the owner of CaringBridge.  The site started as a simple webpage for a friend of Sona’s who was going through a difficult pregnancy.  Sona and her friends used the site to keep friends and family informed of updates, keeping everyone in the loop without having to make several phone calls each day.

Thus, CaringBridge was born.  Anyone with an illness or those who are taking care of someone with an illness can create their own webpage through the site to keep friends and family informed of the patient’s progress.   It’s free, there are no ads, and Beth states, “I appreciate its ease of use. It is an intuitive interface, so it didn’t take much time at all to set up and use. I’ve never been frustrated using it!”

Sona pointed out that using the site is beneficial to 3 different groups of people.  The patient stays connected to family and friends through updates.  Those who get updates can then sign a guestbook with questions or words of encouragement.

The patient’s main caregiver can also benefit from messages of support.  Being a primary caregiver can become very isolating as they become more and more involved with the patient’s day to day care – traveling to appointments, trying to procure test results or helping out in the hospital.  The caregiver might also find comfort in being able to journal their feelings on the site.

And the site can aid the community’s ability to rally around the patient and caregiver.  Sona mentioned a study showing that contact with family and friends can decrease significantly when someone is diagnosed with a major illness.  One of the biggest reasons was that the patient’s community did not want to “bother” the patient or caregiver.  This concept was not lost on Beth, who said, “I sense that some are eager to keep in the know, but do not want to feel like they are bothering me.”

CaringBridge not only connects patients with community; it also connects patients with other patients.  Sona explained that patients and families often meet others going through the same thing in waiting rooms or treatment rooms and swap CaringBridge websites, thereby forming a support group of sorts amongst themselves.

Sona says that people come to use the site mainly through word of mouth from current and previous users.  Hospital employees also refer patients and families, and CaringBridge is active in trade conferences as well.

Personally, as a nurse, I think this site is a fantastic idea.  I certainly have days at work when I’m getting call after call inquiring about the status of a patient from different family members.   We always encourage families to designate one person to call the unit for an update and then disseminate that information to everyone else.  Rather than making numerous phone calls, that designee can update the website.  People visiting the site can enter an email address to be updated automatically every time an entry is made.

Beth did say that it’s sometimes difficult to know how to say things: “One of the challenges has been knowing what to share and how to share it, as the information is broadcasted.”  She went to on explain that when both caregiver and patient are contributing to the site, the needs of both need to be taken into account.  One person may have the desire to share a lot of information when the other person might want to show a little more restraint.

The last feature about the site I want to mention is the ability to easily turn a journal/pictures/guestbook into a real book.  Sona mentioned that some of these books are even used at memorial services.

If you’ve been reading codeblog for awhile, you know that I don’t regularly endorse websites.  I find CaringBridge.org to be exceedingly useful to patients and families and wanted to help spread the word.

You can also find them on Twitter and Facebook.

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  • profileI am Gina. I have been a nurse for 15 years, first in med/surg, then CVICU, inpatient dialysis, CCU and now hospice. This blog is about my experiences as a nurse, and the experiences of others in the healthcare system - patients, nurses, doctors, paramedics. We all have stories!

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