Onto the blog update!
Apparently, attempt at isolation didn't work. I totally failed at keeping my littlest lion safe from the "stomping elephant" flu. Thus, "The Great Flu Fiasco of 2009" began the minute Niki came down with flu-like symptoms early Monday morning. She still had a low grade fever when I took her to Dr. Awesome's office in Oakland at 9:30am. Dr. Awesome's usual Medical Assistant must have been out sick because it was a float MA was taking care of us.
Please let the record show that...I DID NOT LIKE HER AT ALL!
I could tell that she hated her job the minute she called my daughter's name. She didn't smile, her voice was monotoned, and she just wasn't personable. I'm an MA too so I know when someone despises his/her job. I can smell it. I didn't want any fake ass kissing either so I didn't tell her that I worked for Kaiser. However, I *did* tell her about my daughter.
And, that stupid MA did not listen to the words coming out of my mouth.
You see, Dr. Awesome's MA usually has trouble getting Niki's blood pressure. Niki squirms once the cuff tightens around her leg so the movement makes it impossible to get a reading. I told the float MA about this and she completely ignored me. Steeerike 1! Of course, Niki started to squirm once the BP cuff tightened around her leg. Dr. Awesome's MA usually stops once the cuff inflates a second time since this indicates that the machine isn't going to get a reading. I told the float MA this and she ignored me again. Steeerike 2! The cuff tightened a THIRD time and I reiterated that the machine was NOT going to read her blood pressure because Niki was moving! The float MA ignored me again and mumbled about the machine "should work soon". Steeerike 3 and she was out! The BP cuff inflated a FOURTH time and I snapped at her.
"Look honey, my daughter has a bleeding disorder and that is why she is here. I do not want you to ATTEMPT to get her blood pressure any more because she could get a muscle bleed if you keep pumping up her leg. I already told you that it wasn't going to work after the second time it inflated! "
She took the cuff of after that. And THAT was the first time I EVER had to act as my daughter's advocate, but I wouldn't be my last....
Aside from my icky encounter with Ms. Float MA, the appointment went well. Dr. Awesome and Nurse Richard were wonderful as always. I even left the appointment with a game plan *in case* Niki's fever spiked. By 1:50 Niki's axillary temperature was 102!! I checked her temperature with THREE different thermometers just to be sure. I even took off a layer of her clothing and waited 10 minutes, but her temperature was still well above 101.5. She was 101.9 to be exact, but axillary temp is always lower than the actual core is.
So, I placed "the call" to Nurse Richard.
I think we all dreaded "the call", but we knew it was coming. Thank goodness Dr. Awesome and Nurse Richard are totally on top of her care. They consulted with each other and ultimately decided that I needed to take Niki to the ER stat. Nurse Richard placed some calls to let the San Francisco ER know we were coming. They have a Pediatric wing there just in case she needed to be admitted.
Keep in mind that I was still sick with the flu myself. John was at work, but his little sister was home and she offered to come help. I packed up some clothing, factor, and Niki and made it there by 2:50pm.
As soon as we got there, I was NOT feeling the vibe. I'm totally not a "trouble parent", but the triage nurse acted as if he didn't know we were coming. No one seemed aware that Nurse Richard even called. And moreover, the nurses we all treating me like I was a *unnecessarily* worried mother. NOT GOOD!
I swear, this is why I hate nurses sometimes.
I told the Triage Nurse exactly what the plan was for Niki. I even showed him the Brovaic card that states Niki should start antibiotics within an hour from arrival. (After they perform blood cultures of course!) We went there to rule out an infection in her Broviac line. All of this information seemed to go in one ear and out the other. He didn't even look at the card. I told the nurse that I could get Dr. Awesome's office on the line to confirm, but he declined. He told me to talk to the ER doctor first. So, the Triage Nurse took her vital signs (and rectal temperature). It was 3:20 by the time we got into a room.
Then I met Niki's "smart alec" nurse.
I informed her that Niki needed to get a blood culture and antibiotics right away per Dr. Awesome's office. I also told her that Nurse Richard (from Pediatric Hematology!) called the ER about our arrival because of Niki's Factor VII Deficiency. She didn't know anything about the phone call. People, she was our f*cking nurse and she was completely clueless! (She must have not looked at the chart or something.) It was soooo frustrating, but I remained calm, patient, and docile. You don't bite the hand that feeds you, right?
Then the nurse had the audacity to CORRECT me after I told her why we came there in the first place. (high temperature)
She interrupted me and said, "We don't usually start antibiotics because if she has the flu it's viral and antibiotics don't usually help."
Ugh, I'm getting annoyed just *thinking* about it. Naturally, I just thought to myself "No shit, Sherlock." and kept quiet. I let her say what she wanted to say and figured I'd set her straight as soon as the doctor came in.
It was four o'clock when Nurse Richard called my cell phone to check in. (See how great they are?) By that time we still had no ER doctor and no antibiotics. I told him that I really needed him to light a fire under the ER staff's asses. Nurse Richard was very surprised with the treatment we were getting. Niki was sleeping comfortably on my shoulder, but still.... the we being treated was unacceptable.
I AM THE MOTHER AND YOU DO NOT DISREGARD THE MOTHER!
The last time someone did that to me was with Ethan. And look how totally right we were when we said something was wrong! I told Nurse Richard that our assigned nurse didn't seem to believe me when I told her about the phone call he placed. I also told him what she said when I told her that Niki needed a blood cultures and antibiotics. When I informed Nurse Richard about the new temperature reading we got when the Triage Nurse performed the rectal temp and he said, "Oh no, they did a rectal temp?! I told them no rectal temps."
Apparently, inserting the probe into Niki's rectum could cause a bleed!
I hadn't even thought of this possibility. And instantly I felt a wave of mother's guilt. I checked Niki's bum to make sure she didn't have a bleed. Niki was fine and Nurse Richard reassured me that I basically needed to stop feeling bad. I'm a pro at managing her care, but it is virtually impossible to know ALL of the idiosyncrasies of treating patients with hemophilia.
We finished talking just as the ER doc and Nurse Smart Alec walked in the door.
I updated them on the conversation I had with Dr. Awesome's office. The ER doctor told me that she didn't even know they called. (WTF?! I guess the ER doc didn't look at her chart either.) Then I realized that Nurse Smart Alec must have been talking sh*t because the ER doctor immediately asked me why I "thought" Niki needed antibiotics. So, AGAIN, I explained about the temperature protocol Dr. Awesome's office had for Niki. (Anything above 101.5 could be indicative of a line infection.)
My assumption about the shit talking appeared to be correct because the ER doctor turned to Nurse Smart Alec, gave her the no-duh look, and said, "She needs antibiotics because she has a central line."
Ding, ding, ding! Light bulb! Of course I felt compelled to add, "Yes, that's why I told the nurse my daughter needed antibiotics. I know the flu is viral and doesn't respond to antibiotics, but Hematology is concerned with the possibility of a line infection."
Had the nurse listened to me and assessed her patient properly perhaps they would have realized A LONG TIME AGO that I wasn't just another worry-wort parent. The nurse looked a little embarrassed as the doctor left the room. Then, I suppose she needed some personal redemption because as we started to converse again she asked me with some attitude, "So can you tell me why she needs antibiotic. I don't quite understand why she needs them just because her temperature is high."
Her bad attitude was obvious enough for John and his 12 year old sister to notice.
Nurse Smart Alec knew the answer (it's a standard protocol for any patient with a central line), but she wanted to see if I knew. Stupid bitch. Of course, I set her straight. Seriously, it almost felt like I was subjected to an oral pop quiz. She must have figured I was some young, dumb parent. But please, she must have had me confused with some other idiot.
I don't just pop 'em out, I know how to care for them too!
I told her the answer we both knew and added that I could have done the blood cultures myself a long time ago. I also sweetly and sarcastically reminded her that I've been caring for Niki for nearly 9 months. When Nurse Smart Alec left the room John and his sister chuckled at how snarky I was toward her. It's sooo not like me to catch an attitude with strangers, but I was just really fed up with it all.
Some ER staff members really needs to learn how to take parents seriously.
After all the bullshit power-tripping was out of the way, Nurse Smart Alec got to work. Blood and urine cultures, a CAT scan (to rule out a head bleed from the fall she had on Friday), and antibiotics (Ceftriaxone) were all ordered by the doctor. She drew labs from Niki's Broviac and continued to quiz me on how much Heparin we use to flush her line and if we change to clave before or after lab draws.
Ah, there is no rest for the wicked is there? Haha.
She also tried to get another temperature and I had to remind her that Hematology said "no rectal temps". Nurse Smart Alec also told me that she had to get a urine sample. She tried to use a urine bag first, but it kept coming off. Then, she advised me that she would have to insert a catheter if the bag was unsuccessful. My advocacy mode kicked back in and I reminded her that if a rectal temp wasn't allowed, I doubt a urine catheter would be either. There is just too much risk for bleeding.
Then she said the unthinkable, "Well, we'd be real gentle."
Uh...no. I told her that if they needed a urine sample that bad, we'd have to use the urine bag. I did not want my daughter to get a bleed in her urethra or bladder! Haha, her definition of "real gentle" does not apply to my daughter. So, the ER doctor decided that we could just take a few urine bags home rather than wait for her to go pee. She even had a CT scan (without sedation) and stayed perfectly still. Thankfully, she did not have a head bleed! It was SIX O'CLOCK by the time she got her antibiotics.
So much for antibiotics within one hour, huh?
Once they were done with the infusion they sent us home. We were able to obtain a urine sample from home and John dropped it off at the local lab. On a side note, I'm convinced that Niki has become a pro at this whole "hospital thing". She hardly cried. (Well, except for when they did a nasal swab to see what kind of flu she had.)
The following day the ER doctor called us to inform us that Niki tested positive for H1N1 and they started her on an infant form of Tamiflu. (I felt bad because I pretty sure she got H1N1 from me.) The initial results of the blood cultures also came back negative for a Broviac infection. Yesss! Nevertheless, we had to take Niki back to the San Francisco Pediatric Infusion center. She needed another infusion of Ceftriaxone (antibiotics) just to be sure that any line infection would be knocked out. The nurse we met there (I'll call her Nurse Angel) made up for all the bullshit we went though with Nurse Smart Alec.
I really don't get why Nurse Smart Alec was such an asshole. I really don't.
It's hard enough to have a sick child so it's nice to be treated with respect. Nurse Angel made us feel like Niki was the Queen of the Universe. And it was genuine too! Nurse Angel is the reason why I don't hate *all* nurses. ;-)
I am happy to report that Niki was 100% better just in time to attend the National Hemophilia Foundation "Building Bridges" Conference on 10/29. But...I'll save that story for another blog entry. In the meantime, here's another photo essay 'cause ya know I bring my camera everywhere. :)