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Tuesday, September 21, 2010

Niki's Update (And a mini London update!)

**In case you haven't heard, I found out about Diamond Tiara's FVII-def status this morning. She's a carrier which means she is just like John and I. We. Are. Thrilled!!!!!!! Post coming soon.***

You may or may not have noticed that Niki was not included in my "Long Sip" post. Unfortunately Niki's September updates have been far too many. Niki has had so much going on this month that she needed her own dang blog entry! All was quiet since her port surgery, but we were suddenly hit with a huge surge of  medical stuff in the last few weeks.

But, before I go into all of that, onto the regular toddler stuff...

Niki had her first haircut on 9/4/10.  I somehow allowed John to convince me that Niki need a trim. Maybe it was my silly ol' pregnancy brain, but I also let him convince me that the lady that cuts his hair was the "man" for the job! Well my friends, I was wrong.We should have just left Niki's precious locks alone.

I had a bad feeling when we got to the salon, but John said the lady was good (or in his words, "She's the shit.")  and I foolishly trusted his judgment. I know better now. He's a GUY! What the hell does he know about little girls and their hair?! Anyway, I  told the lady that I only wanted to just give Niki's bangs a trim (Niki already has a natural side-swept look), but the lady convinced me that china-doll bangs were "better for a little girl." I reluctantly agreed as John proudly held Niki in his lap.

I wanted to drop the camera and strangle that lady after she made the first snip! She cut Niki's bangs soooooo short! Alas, it was too late, she already started and John is her regular customer. I couldn't get mad at her. I continued to snap pictures, but boy, was I unhappy! John was still proudly grinning and Niki was contently sucking on her lollipop. This meant that I had to resist every temptation to snatch Niki out of that chair and spoil everyone's fun.

The haircut was over in less than 15 minutes, and I was so utterly disappointed with the finished product. As soon John finished paying and we stepped outside, I vowed to NEVER let anyone else touch Niki's hair again. Especially that woman! Niki's bangs needed a trim (they were getting stuck to her nose) but I should have done it myself!  I hate, hate, hate her bangs.

A baby's first haircut is a huge deal. Niki is our first daughter which means she's kind of like our "guniea pig child." (Just like Kevie was.) I feel like we seriously messed up with deciding to cut her hair so soon. If there is a silver lining to this whole story, I guess it's the fact that I'll know better when it's time for Diamond to have her first haircut. Poor Niki though, she looks EXACTLY like I did when I was her age. Blessing or curse? You decide.

Now that I look back on's just hair. But at the time it, was the only thing I had to fret over. All was well in "bleeding disorder land" so why NOT obsess of regular stuff for a change? I'm still new to this whole mother-daughter thing, aren't I? But alas, our worry-free days were short lived. Things started go awry when Niki developed what looked like a bug bite on her left butt cheek.

She had similar bites (about 2 or 3) a few weeks before and the bites disappeared after I put some cortisone on it. When a single bite resurfaced Memorial Day weekend (9/4/10), I wasn't super concerned. It was normal looking on Saturday, but by Sunday morning it was slightly swollen. The bite wasn't tender to touch or pus-filled (actually it had a scab on top), but I was still very concerned about it getting infected. Niki wasn't bothered by it at all, but it was still unnerving for me. The bite area was about the size of a dime. Any nasty bacteria brewing at the bite site could go straight to Niki's port if she were ever to develop an infection there.

I figured it would be best to bring her in to Pediatric Urgent Care clinic for an evaluation first thing in the morning.

On Sunday, 9/5/10, Niki and I set off for her 10:45am appointment in San Francisco. On the way there she puked in the car (I think she's inherited motion sickness from me), and whined incessantly until I pulled over and changed her. (The girl does NOT like to be dirty.) We made it on time to the appointment by some miracle, but we still ended up waiting close to one hour to be seen. The Pediatrician was cool so I didn't mind the wait. Niki was having a blast playing with all of the toys anyway.

Once we got into the exam room, the doctor examined Niki's bite and decided to contact the on-call Hematologist for advice. Luckily, they on-call Hematologist turned out to be Dr. Awesome. As always, Dr. Awesome came up with an excellent good game plan.

The Pediatrician swabbed Niki's bug bite and sent the sample to the lab. They wanted to run a culture to see if and what bacteria would grow. Dr. Awesome and the Pediatrician decided to start Niki on a broad range antibiotic (Cephalexin) mainly to protect her port and ensure that the bite didn't get worse. Niki's been on the pink stuff before so it was no biggie. The doctor thought Niki simply had the beginning of what could have been a mildly infected bug bite or perhaps a localized cellulitis. We were sent home with  over-the-counter double antibiotic ointment and a bottle of the pink stuff.

All was well with the world again so off to Hercules we went!

The next morning (Monday 9/6/10), Niki's diaper had a quarter-sized spot of blood in it. It looked like she scratched the scab off over night. I took some pictures to monitor the bite and amount of blood so we could have a way to compare any worsening or improvement of the bite. John and I do this for all bleeds because a picture speaks a thousand words. We're documentation aficionados, I guess. ;-)

Despite the bloody morning diaper, Niki STILL wasn't bothered by the bite. It wasn't tender to touch, there was still no pus, and she didn't have a fever. I actually believed that the bite was getting better.

Labor day weekend came and went. We continued to give Niki Cephalexin and put OTC ointment on the bite. By Tuesday, there was still no word on the results of the culture. Keep in mind that culture results don't usually take that long. I figured that if there was something wrong, SURELY they would have called right away. The swab was done on 9/5 and it was 9/8! When I came home from work that day, Niki had a slight nose bleed, but the bite was looking much better.

We take pictures of everything around here.

Light pressure and cool compresses helped with the nose bleed, and everything was copacetic until 11:30pm anyway.

I checked my e-mail after Niki fell asleep and saw that a message was sent to me at 9am that morning.  The hospital's online system automatically sends notification to members when test results come in. Now, keep in mind that standard protocol is to call a patient IMMEDIATELY if a test comes back positive.  Especially for someone like Niki with her port and all. So, when I saw the e-mail, I still didn't think anything was wrong. Cause someone would have called me right? A full clinic day had passed and no one called me. My jaw hit the ground when I opened up the growth report....

Niki's culture grew MRSA!!!!

MRSA, ya'll! What ever happened to catching normal things like the flu? First she caught Serratia and now MRSA. What's next? The bubonic plague?! All of these "designer bugs" are really starting to annoy me.:-/

Now, before you beat your brains out about whether or not you touched Niki that weekend, please, do NOT be alarmed. (Or be ignorant for that matter.) MRSA is everywhere. If you work in the hospital or gym for example, you're exposed to MRSA on a daily basis. Niki's bite was covered by her diaper. So, unless you licked her nostrils or your fingers after changing her diaper, you did not contaminate yourself. She is NOT a germ-spreader and I'd appreciate it if she wasn't referred to as such.

Someone already indirectly did that and I was NOT amused.

MRSA isn't a big deal if you're healthy, but it IS a big deal if you're a child/infant. And it's an even bigger deal if you have a weakened immune system like Niki does. Her port makes her prone to getting sicker, quicker off of "designer bugs" like MRSA. I don't know how she got MRSA, but it was there and she was NOT taking the correct antibiotic. MRSA is not sensitive to Cephalexin. I couldn't believe that no one called me with the test results. I had no idea they were even ready that early in the day!

Niki didn't have fever but still...MRSA is some serious shit if you have a port. I was worried that something was brewing in Niki's port -- especially with her being on the wrong type of antibiotic since 9/5. Unfortunately, it was already close to midnight and the advice nurses couldn't do much to help me. I sent messages to Dr. Sweetheart and Dr. Awesome's office first thing in the morning.

I waited all day to hear back from someone. Dr. Awesome and Nurse Richard were out if the office and Nurse Richard's replacement didn't call me back untiI I called her a second time. It was almost 4:30 when I spoke with her! I was surprised that Hematology wasn't on top of it.

Thank goodness Dr. Sweetheart got in touch with me already!

Apparently, Niki's culture results were sent to the doctor in San Francisco so none of the doctors (Dr. Sweetheart or Dr. Awesome) knew about the results of the test. And, whoever it is that reviews the lab results in San Francisco snoozed on spreading the word. Fail. Niki's diagnosis was delayed by one day, but the good news was Dr. Sweetheart was on top of it. She prescribed Niki an antibiotic called Septra (which does work on MRSA) and gave me instructions on how to de-colonize Niki and the rest of the family. Dr. Sweetheart didn't believe that Niki was colonized, but she decided to move forward with the treatment anyway to be on the safe side. So, the plan was:

1. Septra twice a day for the next 10 days (starting 9/9/10)
2. Muprocin ointment nasal swabs twice a day for Niki and the entire family for the next 5-7 days
3. Hibclens soap-downs for Niki and the boys for twice a week for the next month.

MRSA is a very stubborn bacteria. The best defense we have against it is to make sure that it's completely gone. The Septra would take care of it, but the Muprocin and Hibiclens would completely kill any residual MRSA that could be hanging around. Needless to say, we had our hands full with that treatment plan along with Niki's every-other-day infusion schedule and daily iron sulfate supplement for her anemia. There was a hell of a lot of medication tracking going on, my friends.

Bless my iPhone for keeping me sane, organized, and reminded of everything!

Just when we thought things couldn't get any worse, yet another curve ball was thrown our way. On Monday, 9/13, John and I came home to discover that Niki started limping at about 4pm that day. Keep in mind that Niki was still dealing with MRSA medications so the limping was the icing on the cake. It wasn't a factor day, and she refused to bear weight on her left leg (you know, the same leg where she had her possible ankle bleed in August) so John and I went ahead and gave her a dose of factor. We also tried to ice her ankle in case she had developed a target joint.

Niki fought with the icepack so icing the joint didn't last for as long as I wanted it to.

John and I tried bending/pressing every possible aspect of her left leg, but nothing seemed to be painful for her. Niki had no bruises and minimal swelling of the leg so we couldn't figure out why she was limping. Nevertheless, we kept her off her feet, and periodically checked for new bruises and/or swelling for the rest of the evening.

We both had work the next day (and she was still limping) so John called Nurse Richard and got advice from him first thing in the morning. They (Nurse Richard & Dr. Awesome) wanted us to continue to keep Niki off her feet and suggested that we get Niki an appointment with Dr. Sweetheart's office. My MIL, God bless her, was able to keep Niki off her feet despite having other children in the daycare to tend to.

Dr. Sweetheart was out of the office, but we were able to get Niki an afternoon appointment with one of the other Pediatricians on the floor. Tuesday, 9/14 was a factor day and the second dose of factor seemed to help. Niki's limp was still there, but it had dramatically improved since I last saw here in the morning.  My BIL and SIL came to my building (Dr. Sweetheart's office is only two floors down from my department) so I could conserve my FMLA. My BIL had to leave for work, but I met my SIL in the waiting room.

This is why we are so lucky to have the family support system that we have.
I jokingly asked my SIL if she felt like "Teen Mom" while she was waiting for me in the waiting room.
Niki's appointment went well. She's an interesting little creature so, of course, a Pediatric resident from UCSF shadowed Dr. Sweetheart's colleague during the exam. After watching her walk, bending, poking, and maneuvering every joint in the that leg, Dr. Sweetheart's colleague "Dr. RC" determined that Niki had a sprain.

The good news was it seemed to be resolving! We were instructed to continue with rest and ice (as much as Niki would tolerate) and of course, to continue with her regular factor schedule. (I swear, NovoSeven is the best!) Niki's bleed/sprain/limp/whatever-the-hell-it-was completely resolved by Wednesday 9/15.

Oh, but we weren't out of the woods yet. Keep in mind that we were still dealing with the MRSA treatment plan (antibiotics twice a day, nasal ointment twice a day, Hibiclens baths), infusion schedule, daily iron supplement, and NOW her ankle. I thought all was starting to get back to normal until I got a text from my MIL the afternoon of 9/15. And, the text looked like this:

Sure, Niki's limp was gone, but an eruption cyst in her mouth must have burst because she was having a pretty nasty mouth bleed. Mouth bleeds aren't serious (they just look serious), but the bleeding was happening off and on throughout the day. My MIL is used to handling Niki's minor bleeds, but this particular mouth bleed was a little more alarming that normal. She always sends me text/emails of Niki in both bad and good states. I guess my MIL understands that I feel better when I see pictures of my baby midday or mid-episode. It makes me feel like I'm with Niki even when I can't be with her.

The picture was taken when she was asleep and the bleed was non-urgent, but eating cold food/drinks didn't help stop the bleeding either.

Unfortunately, I was set to have my eyes dilated just minutes after I got the text (my vision has gotten alarmingly worse for the past two weeks) so there wasn't much I could do. The dilation would render me virtually blind (super blurred) for the next few hours. This meant that I wouldn't be able to administer factor when I got home. It was going to be left up to John. My eye dilation made me completely useless and John had to deal with Niki's mouth bleed on his own. He gave her factor and all was well with the world again.

But this time....I think it's for good.

It's been crazy and I'm glad it's over. Niki finally finished her Muprocin and Septra regimen just a few days ago. The Hibiclens baths will continue for the next few weeks and all will be back to normal again. normal as we're used to, anyway. ;-) The mouth bleed has resolved and she hasn't limped since last week.

The stress from the last 10 days must have caught up to me because I woke up Friday morning (9/17) with a wicked case of vertigo and maybe even a mild migraine. I called in sick for the first time in months (all the while worrying about my recent work drama) and slept in between dizzy-spells all day long. I'm doing much better and I'm REALLY hoping October will be a quieter month.

In the meantime, in the words of Green Day, wake me up when September ends!


  1. Hey Tiff,just catching up on reading your blogs. Haven't read your October blogs yet, but hope it was a better month for you guys. I feel you on Niki's haircut though. I was a huge fan of her natural side-swept bangs...she's still just as beautiful as ever though! I love reading about your handsome boys too! You really have your hands full!
    ~Jessica Casher

  2. Hi Jessica! So honored to have your readership. :) Please feel free to share my blog with any of the other NICU nurses that may be wondering what Niki's been up to these days. We think of you all often. Niki's hair is starting to look back to normal these days. I'd love to bring her by to visit, but I don't know what the NICU policy is for those sorts of things. Keep in touch, and take care!