Today's Highlights...

I got off from work at 2:30 today to take Niki to her routine check up with Dr. Awesome. We try and alternate visits between clinics in Oakland and SF, and today's appointment just so happened to be in SF. I was hoping to make it there a little early -- and I was making good time too -- but I got caught in some pretty gnarly traffic. In case you don't already know or you live under a rock, Game 1 of the WORLD SERIES is today!

Lovely, isn't it?

The last time the Giants made it to the World Series was when I was pregnant with Kevie in 2002. The Giants had a damn fine team that year!!!! That was the year I fell in love with J.T. Snow (even more after the Darren Baker incident at home plate), Barry Bonds was is the Homerun King, and Dusty Baker was the best goddamn manager there every was! When they lost, I remember dwelling on the fact I couldn't tell Kevin (when he got older) that the Giants won the World Series when I was pregnant with him. How cool would that story have been?!

Where for art thou, J.T. Snow?

Now here we are -- 8 years later -- and Kevie & Boo have Giants fever! The whole dang Bay Area has caught Giants fever!  Most of the staff at Dr. Awesome's clinic in SF wore Giants gear and they had posters all throughout the clinic showing support for the Gigantes.  And tomorrow, in lieu of uniforms, Kev & Boo's school is allowing all of the kids to wear Giants gear to celebrate.

I lost touch with baseball when I became a Mommy, but you guys probably remember me writing about my love affair with baseball on my old blog. Hell, I had no idea what "Fear the Beard" meant until two weeks ago! Now, I'm struggling to write while my boys (John, Kev, & Boo) excitedly clap and yell things like "Gooo Posey, gooo!" or "Uuuuurribe!" or "5-2 baby, 5-2!" or my personal favorite "Yeah, Diirrrrrty Sanchez!" to the television. Ah, father-son bonding at its finest. ;-) 

I still love J.T. Snow, but Buster Posey is a very close 2nd in my guys-I-think-are-cute-book. 

 And yes, I'm know I'm somewhat of a cougar for feeling this way.

I'm not a bandwagon fan -- frankly I'm opting to write rather than truly watch the game -- but I'm still hoping the Giants kick some Texas Ranger ass tonight. Maybe I can tell Noie the Giants won the World Series when I was pregnant with her.

But I digress...

All went well at Niki's appointment with Dr. Awesome. As usual, Dr. Awesome was THE BEST. Niki lost some weight with the MRSA incident (and now I miss my old blog because I would've linked the original MRSA post), but she's otherwise doing okay. Niki's been bruising easier and she has a nasty hematoma on her tongue, so Dr. Awesome increased her NovoSeven dose from 200mcg to 220mcg. To give you non-medical folk and idea of how much factor that is, it's about the same volume as a single tear drop! And to think -- her factor costs thousands of dollars for one dose! She has a 1ml vial it goes bad about three hours after it's reconstituted. All the "tear drops" left in the vial go to waste.

Nurse Rich got Niki a 2-month supply of hard-to-get Griper needles, and a note allowing her to fly to New Orleans with her factor and infusion supplies. Dr. Awesome brought it with her to the clinic in San Francisco. I called Niki's social worker one month ago about the letter, but she must have forgot to write it for me before she went on vacation. I know I've said this before, but Nurse Richard is the BOMB!  I honestly don't know where we would be if Dr. Awesome and Nurse Rich weren't so wonderful with Niki.

With that being said, John and I finally spilled the beans.

We let Dr. Awesome know that we were naming the baby after her. I was scared that she would be weirded out by it, but you know what she did? She started to tear. And I started to tear! And we hugged. :) And THAT is why John and I love her so much. Even though we don't go to a HTC, we know that our "medical family" genuinely cares about Niki. We're going to Oakland for our next visit so Niki can see Nurse Rich. 

I also mentioned to Dr. Awesome that Niki's case is probably going to be included in a "letter to the editor" for a medical journal. I don't want to go into details until it actually happens, but Niki is the first case that this factor VII deficiency expert knows of where NovoSeven was used as primary prophylactic treatment. Dr. Awesome is doing some awesome things with our little guinea pig!

So, Dr. Awesome is totally worth naming one of our children after. :)

Totally random note: I LOVE the way Tony Bennett sang "God Bless America." So SF!

The Left Ankle...

On Thursday, August 5th, I went on a much needed dinner date with my very best friend K. After enjoying an evening of good conversation and delicious Thai food, I came home to a very cranky baby.

Normally when I get home, Niki walks up and greets me at the doorway. Well, this time she didn't -- she just stood there and stared at me. I thought it was odd, but John said Niki had been cranky for the past 1/2 hour. Her eyelashes were still moist with telltale tears so I paid little mind to the fact that she didn't walk up to me when I came home.

Niki occasionally goes through bouts of grouchiness and it was close to her bedtime. I thought she just needed a bottle. I picked Niki up and held her while John warmed a bottle for her. She got her bottle, but didn't seem very interested in it. And, she was still grouchy and sulky. So, I figured she was hot. Niki was wearing footie pajamas and when I started to pull them off, she began to cry in protest. That's when I knew something was up.

Once she was fully undressed, I began visually scanning her for bruises or swelling. John and I checked her entire body, carefully bending and examining each joint until John finally discovered thumbprint-sized bruise (hematoma) on her inner left ankle. The area where the knot was located was warmer than the rest of her foot. Upon closer inspection, we realized that Niki's entire left foot was a bit more swollen than the other, but she also has adorably chubby feet so it was hard to tell at first glance.

Here are a few pictures of the bruise/knot. It looks insignificant, but it (the hematoma) was the size of a gumball.

Swelling... (pictures taken while waiting for the EMLA to kick in)

Niki was crying during entire "exam" so it was hard to tell if the lump was the actual source of pain. She bruises easily and she always has some sort of odd knot or lump somewhere. Besides, joint bleeding is typically accompanied by larger bruises, redness, warmth over the entire joint, and "guarding" of the joint. John and I were leery about making a snap-diagnosis. We were leaning toward an ankle bleed, but we weren't 100% sure since she didn't fit all the criteria. AND, she's never had a joint bleed before so we honestly didn't know what the hell we were doing.

No amount of "reading up" on something can help you when that something actually happens.

Niki is a headstrong little girl so she was trying really hard to end the exam.  The minute she had the chance, she broke free from us and attempted to get down from the couch. The instant her left foot touched the floor and bore all of her weight, she yelped in pain.  Niki quickly lifted her foot and used the couch for balance  instead. She then gingerly held her foot ever-so-slightly off the ground and stared at us she whimpered.  It was at that very moment that all everything fell into place. She was barely walking earlier because her ankle was starting to hurt!

It can take a while before a joint bleed actually becomes painful. Pressure builds up as blood fills up the joint capsule. Pressure = pain. I've read that the initial sensation of a joint bleed feels like "bubbling" in the joint. Niki isn't exactly vocal so she can't tell me when she thinks has a bleed. It's hard to identify "cranky baby" vs "I'm-in-pain-baby" at this stage in her life.

The way I've written the sequence of events seems drawn out, but in actuality, this all occurred within the course of 5 or 10 minutes.

Once we discovered the problem, John immediately got on the phone and contacted the on-call Hematologist. I grabbed an icepack and placed it on Niki's ankle while she used her other foot to try and kick my hand (and the icepack) away. What can I say? The girl is a fighter.

Niki was not a happy camper. The good news was the Hematologist said we didn't have to take her to the ER for the bleed. As long as the swelling and warmth didn't spread once she got a dose factor (this would indicate that the factor didn't work and she was still bleeding into the joint), then we could wait until morning to have her evaluated. The bad news was we had to wait for the EMLA (numbing cream) to kick in before we could give her factor.

Although I agree it would have been barbaric and traumatizing to poke Niki without numbing cream, I still wasn't fond of waiting ONE HOUR for the EMLA to kick in before I could administer factor. Sometimes it feels like it was soooo much easier when she had her Broviac. I'll post videos someday, but basically, all we had to do (when she had her Broviac) was screw on/off syringes. Now, we have to put on EMLA one hour before, poke her, screw on/off syringes, and remove the needle while she screams and cries.

I'm wondering what would happen if she had an acute bleed/injury? Will we have to poke her sans EMLA then? I dread the idea of having her hurt in two places at once. I tried a bit of EMLA on my hand once and it didn't do a damn thing to numb me up. So, I'm really starting to believe that EMLA has more of a placebo affect than anything else.

That was the longest hour EVER, but we all made it through. We  thought of different ways to keep her preoccupied while we waited for the EMLA to kick in....

NovoSeven is a Godsend!

Infusion supplies...

We (John, my MIL, SILs, and I) were not allowing Niki to walk AT ALL until further instruction and we iced her ankle like crazy overnight. By morning, the swelling had improved and she seemed to be in much better spirits. Nurse Richard called to let me know that Niki needed to be evaluated and possibly have the ankle splinted so it would stay immobile. Unfortunately, Dr. Awesome didn't have any appointments. I had trouble getting off from work to take Niki to her appointment to see Dr. Sweetheart. Believe it or not, my manager denied my last minute FMLA request! We were very short staffed and even though Dr. Sweetheart is two floors down from me, my manager still couldn't let me go to Niki's appointment.

It made me feel like I should have called in sick instead.

I wanted to be there for Niki and it REALLY SUCKED that I couldn't be. But...I'm the "good insurance" supplier and I have to do everything I can to protect my job. John was just going to have to go to the appointment by himself. It was a factor day so Niki already got her prophy dose of NovoSeven before I left for work. However, I messed up because I should have kept her accessed (with a needle) in case her dose/regimen was going to get bumped up for the bleed. At least I know next time she has a bleed, right?

The good news was Niki didn't need to have her dose bumped up after all. Dr. Sweetheart (her Pediatrician) diagnosed Niki with a really bad hematoma. Niki still had some tenderness in the area, but she was well enough to bear weight on her ankle again. NovoSeven is the bomb I tell you! A friend with FVII-def told me that she didn't have bruising when she had joint bleeds either. So, I'm not 100% convinced that Niki didn't have an ankle bleed. I just so happen to believe that NovoSeven is just awesome like that. ;-)

I guess we'll never know if this was a true joint bleed or not, but I'm just happy that my baby is OK.

Ports and Irritation...

Friday, July 16th - Sunday July 18th:

I was very ticked off at John last weekend. I write about the good, the bad, and the ugly on this here  blog and frankly, I was not pleased that John left the day after Niki was discharged from the hospital. However, before you all think he's a total douche for leaving on a trip, you have to understand that he's the Best Man for his cousin's wedding. This trip (bachelor party) was planned well before Niki's Broviac infection and bumped-up surgery date. So, really, there was no avoiding it. Even though I know John would never leave if Niki was in terrible condition, I was still very perturbed once he finally landed in Las Vegas. Niki was fine, but I was NOT.

So, I did what any scorned woman would do -- I gave him hell the entire weekend.

John checked in with me as best he could, but everything he told me about his trip was absolutely annoying. I can't explain why I was sooo irritated off of everything he said, but if you're a woman then I'm sure you can *totally* understand where I was coming from. Here he was living it up in Las Vegas for four days and three nights, while I was stuck at home lion taming on my own. John was VIP in the club/strip club while I was VIP (very important parent) at home. (Strippers don't bother me because they're just doing their job, but the idea of drunk, random slutty girls *possibly* interacting with John in Vegas DID bother me. A LOT.) John didn't interact with random slutty girls, but nevertheless....I was a big ol' bitch the entire weekend. I'd rather not dwell in the past, but let's just say it took me a few days to get over my anger/annoyance. I'm clearly understating my anger that from weekend because I've REALLY calmed down since then. 

Moving on...

My one-on-one teaching session with Nurse Richard went pretty well on Friday 7/16. I practiced port access on "Chester Chest". (Chester is an old friend -- "he" is basically a dummy chest with a Broviac and a port.) John and I "met" Chester when we had our Broviac teaching in the NICU. So, I felt completely comfortable with Chester and was actually able to access the port on the first try. Yay, me! The resistance I felt from de-accessing (removing the needle) is akin removing a thumbtack out of a wall. I wasn't expecting it to feel so "stuck". Nevertheless, learning how to access the port was a piece of cake. Even though I am but a lowly Medical Assistant (not by choice might I add), my health care background serves me well in these situations. I have no problem with the medical stuff. The only thing that causes me anxiety is anticipating how Niki will react to being held down while a needle is coming at her chest.

No matter how hard I try to shake my anxiety, I'm Niki's Mom before she's my "patient".

A picture of what Niki's port looks like...

 Chester Chest (R side has a Broviac/L side has a port under the skin)

Chester's chest peeled back (to reveal the port I learned on)

The plan was to leave Niki accessed (with a needle in her port) until she was due for her next factor dose on Sunday. Then, I would de-access her port (remove the needle) on my own until our next  teaching on Tuesday 7/20. That Tuesday would be the first day that she was poked with a needle.  I felt pretty comfortable with that plan when I left the office that day. However, as it turned out, my session with Chester and Nurse Richard served me very well on Saturday morning because....

The gauze that covered Niki's port site was very bloody and there was condensation underneath the Tegaderm dressing.

Niki must have slept on it wrong and caused a bleed. I called the on-call Hematologist because I knew there was no way that I could keep it accessed in that state. What if she got an infection?! Blood has the potential to harbor all sorts of nasty bacteria that could cause an infection. So, with the blessing of the on-call MD (Dr. G), I de-accessed Niki's port and I decided that I would try and access it myself (to administer her factor) on Sunday night when John returned from Vegas. That way he could help me hold Niki down while I poked her. Her factor dose would be a late, but it was better than getting no factor at all. The plan sound fine and dandy until I got off the phone and actually had to do it. My irritation with John resurfaced as I literally sweated bullets while removing Niki's dressing. I really wished I wasn't alone when that bleed happened.

Man, was I STRESSED.

I tried my best to keep Niki still since I had no one to hold her down. I put on Niki's favorite Barney video on Netflix and that worked for about the first five minutes before she got antsy again. There was a lot of gauze and Tegaderm that had to be carefully peeled off before I could remove the needle. She still had Steri Strips holding the incision together and some of those strips were connected to the Tegaderm. So, it's not like I could have haphazardly peeled the dressing off. It probably took me a good 10-15 minutes to remove everything without causing injury. Whew! Meanwhile, Boo tried to help me distract Niki with my iPhone, but he ended up playing photographer instead. (That kid loves taking pictures.  You should see what he takes pictures of on my iPhone. Lol!) Most of the pictures were blurry, but here the a few that turned okay.

 After all the layers were peeled off...

 De-accessing the port...

Residual blood...

A picture of some of the bloody gauze..

I was glad that Boo took those pictures because they were the first thing that I showed John when he got home. Haha, the guilt-infliction never ends, does it ladies? ;-)

I gave Niki a dose of factor before I withdrew the needle. And let me just say that my first attempt at de-accessing a real port was interesting. I felt like I had to slightly wrench it out of her chest. The silicone does wonders on keeping the needle stable. The surgeon used a 20 gauge needle (it's a little thick) to keep Niki's port accessed so there was quite a bit of bleeding after I removed it. Niki bled for close to 20 minutes despite my applying pressure afterward. Other than that, all was well in the world again once the bleed stopped.

And eventually, my irritation with John's absence dissipated too.

In case you haven't been following my blog, the last couple of weeks has consisted of nothing but hospitals, doctors office visits, and work. (Aside from two reprieves that occurred before Niki's surgery date that I'll write about later.) After the whole bloody port fiasco, the rest of Saturday was filled with utter relaxation and good times. I attended my cousin-in-law's birthday celebration and my 10-year high school reunion later that night.

At first, I was *very* nervous about going. I haven't done jack shit except get pregnant for the last 10 years. One of my classmates is a doctor now! Gawd, how I wish I at least invented Post-Its. Nevertheless, I had a blast catching up with old folks from high school and of course, hanging out with two really good girlfriends that I barely see. All three of us won the raffle (I won sake, a Wii game, a Zagat guide, & some other goodies) and John & I won the award for being "married" the longest.

I was really embarrassed about the awards being that we're not married. (We won two -- the sweethearts award pictured above and "married the longest" award.) Basically, I fucked up on the reunion registration survey and I gave off the impression that John and I were married. So, in essence, I placed a "false advertisement" according to my friend J. Lol! But shoot, we're common law and I've bore 5 of his children -- legal or not, we murried. ;-) Another reunion highlight? I reconnected with an old buddy "R",  who used to join me in my "rebel" let's-smoke-cigarettes-in-the-girls-bathroom days. Good times! (Shout out to you if you're reading this.) Even though I was totally sober and initially had difficulty loosening up, I still had a lot of fun. I've always been kind of a wallflower anyway.

Nothing like a night of "being young again" to rejuvenate the ol' soul.

The next day (7/18), I picked up John from the airport. Things were still sketchy between he and I (ie.I was still pissed off), but we eventually worked it out. (He could have at least brought me souvenirs though.)  Despite our issues, we had bigger fish to fry. Niki was going to get poked and I only practiced on Chester once. It was absolutely nerve-wracking, but I did it on the first try. Whoever invented EMLA is my new idol. Niki didn't even flinch from the poke. The only thing that made her slightly whine was the fact that John was restraining her. But...other than that she did fine and we all survived our first official  port access. Yay us!

Taken just minutes after she got her first poke...

The poke (I did the one on top)...

I'm also VERY happy to report that we only needed three in-clinic sessions of port teaching. (Which was really just us being supervised while we administered Niki's factor.) Nurse Richard was very impressed that we picked up so quickly. Actually, he said the last two sessions of "port teaching" were essentially not needed because we already accessed on our own on Sunday. :) More good news...Niki has yet to cry from the pokes thanks to EMLA.  She's been poked 5 times and hasn't shed a tear. Her only "beef" with port access is the fact that she is being restrained. However, John and I are trying to find a way to modify that portion of the process. Either way....

My daughter is amazing. :)

The Lady and "The Bug"...

Monday, June 21st was a very eventful day in hospital land...

Niki woke up at about 4am with a full on bloody nose. Her nasal discharge was ever so slightly pink the night before and it turned into a full on bleed by morning. We let Niki's very sweet nurse know about the bleed and she asked us what she should do. And, I thought that was wonderful. Not too many health professionals are keen on relying on good old parental expertise. I'm starting to realize that Pediatric professionals are better at trusting the parent's opinion. After all....we know our children best, don't we? Thankfully, it wasn't a bad bleed and it was a factor day so John and I weren't too worried about it.  Niki got her regular factor dose at her scheduled time and all was well with the world again.

A few hours later, Dr. Cool came in to let us know the final results of Niki's x-ray and blood culture.
The good news was that the density in the chest x-ray was deemed to be a non-issue. Dr. Cool highly believed that the Radiologist was just being super cautious with his/her interpretation of the films. And, Niki's lungs were now completely clear (no noise!) so there was no need to explore the lung issue any further.

The bad news was Niki had a very odd bacteria that grew in her culture -- Serratia. This bacteria is not part of the normal flora that you or I have in our bodies. Most central line infections occur when normal flora moves and overpopulates in an area (like near catheter for example) where it wouldn't normally be. Serratia is environmental (a water-borne bacteria) so it was odd that this "bug" grew in my lady.

John and I are absolute freaks about maintaining sterility whenever we access her line. We wash our hands, glove up, and  "scrub the hub" religiously every time we access her line. Actually, I felt really guilty when I found out that it wasn't normal flora that caused her infection. I felt like it was something that we did wrong. However, Dr. Cool reassured me that it is impossible to know how the bacteria got there. And she strongly advised John and I to not blame ourselves. All it takes is one single bacterium to start the colony. One single microscopic bug to make the shit hiteth the fan. ;-) . So, it really wasn't our fault.

The good news was Niki was already on a combination of two antibiotics that work to fight Serratia. Dr. Cool took Niki off Vancomycin (which is ineffective on Serratia), but still kept her on Zosyn at 4x a day and Tobramycin at every 24 hours. And she was still going to be attached to her 24 hour IV fluids until she was discharged. Dr. Cool was anticipating that Niki would be discharged by 6/23 as long as Niki's blood cultures from 6/20 and 6/21 remained negative for bacterial growth. (Obviously, Niki's first blood culture on 6/19 was positive otherwise she wouldn't have been admitted in the first place.) So far, her culture from 6/20 was negative. Dr. Cool urged us to consider pushing up Niki's port surgery sooner than later because the internal microscopic structure of the tubing is permanently altered once bacteria colonizes in the line. Thus, Niki would be more prone to infection now that she has had one.
John and I found out the news a little after 9am so I ended up spending the rest of the morning playing "Dr. Google" by researching Serratia online. Thank God the hospital has Wi-Fi!  I also called my sister to pick her brain about Serratia and her theory on how Niki got infected. Apparently, Serratia is found in various water sources. So, because Niki is immunocompromised thanks to her Broviac, she is more prone to being sensitive to environmental bacterias like Serratia. Make sense? When my sister worked for a Public Health Lab for the one of the counties here in the Bay, they did tests on local water sources and found Serratia in the filtered water dispensers you see at the supermarket. Serratia can be found in almost every bathroom (no matter how clean it is) and even pump soaps if the spout is contaminated with the bacteria. However, people with normal immune systems tolerate the bacteria without any problems. The more I learned about Serratia, the more my initial guilt dissipated 'cause really --- that shit is everywhere.

It just so happened those opportunistic bastards got lucky and infected my baby's central line.

Monday was a little lonely. John unexpectedly had to go to work so Niki and I spent a lot of time alone. It was nice cuddling in bed with my little lady, but it was also very tough when she got into her "cranky mood". I think the both of us were craving for fresh air since neither one of us set foot out of the Pediatrics wing. After what seemed like ages, John finally came back from work. Niki's Ninang M came by bearing gifts too - delicious adobo burritos from the famous Paplote Mexican Grill  in SF. Yes, the Papalote from Bobby Flay's Throwdown! I've been meaning the check that place out. Ningang M is good friends with one of the owners so the burritos were on the house. One of the best gifts you can give a starving pregnant person in the hospital isn't flowers or trinkets from the gift shop -- it's FOOD. :)

More visitors = more playing! :)

Niki was having a blast. Ninang M stayed for a while and Niki's Cousin-Ninang D came by with her boyfriend to visit too. They also came bearing goodies -- Peachie-Os and BBQ chips for yours truly. Niki preferred the burrito and Peachie-os over her hospital food, but that night she FINALLY opted to pig out on yogurt. We had been trying to get her to eat yogurt since she got admitted, but she never showed any interest. I knew that probiotics would work wonders on her diarrhea (a side effect of her antibiotic regimen) so I was happy to see her making a mess of herself. Her diaper area was irritated from the countless bowel movements she had throughout the day. In closing, if you ever have the squirts from antibiotics - get yogurt. ;-)

Niki had another very good night in the hospital after all her guests left. Things were really starting to look up with just a few more days before Niki could go home! And although I was still worried about Niki, I was worried about my boys too. John would go home to see them, but I missed my boys desperately. I hoped that my absence wasn't affecting them in any way.

A mother can only hope that her children will understand.

Over the river and through the woods, to the Emergency Room we go!

***5:41pm Ooops, I just noticed that I posted this prematurely. Tons of typos and that I just fixed. Haha...don't mind my incoherency. I know how to speak perfect English, promise.****

Going to the ER once a month isn't normal, but it has become our normal. Niki surpasses the temperature threshold (101.5) at least once a month, but I got used to everything turning out okay. I guess I got cocky because her last ER visit turned out to be the real thing. In case you didn't know, Niki got admitted to the hospital recently.

And God gave me a serious reality check.

Monday, June 15th started out just like any other week. Niki had her monthly check up with Dr. Awesome and everything was going well. She still had a residual cough left over from Memorial Day Weekend, but Niki's lungs were clear so Dr. Awesome didn't think much of it. Neither did I since coughs can take several weeks to resolve. As always, Niki's INR and FVII levels were stable. My girl was full of energy and spunk during her visit. She walked around Hematology like she owned the place.

Her mood on Tuesday, June 16th seemed to follow suit. She had a good day in daycare and was in a really good mood when we came home from work. Everything seemed fine -- just another day in lion taming -- until 10pm. One minute she was calmly laying down with her Daddy and the next minute she was shivering uncontrollably and crying. I'll never forget the panic in her eyes.

Of course, I immediately thought  about Ethan and his seizures.

Niki didn't look like she was having a seizure, but Ethan taught me that babies don't seize like adults do. Everything happened so quickly. We gave her factor in case she had a head bleed and I called on-call Hematology right away. I could feel adrenaline rushing throughout my body as I administered her factor. John was holding her, trying to calm her down. Her skin was warm, but her hands and feet were purple.

It was scary as hell.

The shivering episode lasted about 10 minutes and her panic quickly subsided and turned into extreme lethargy. Niki sleeps with her eyes slightly open so I could see her eyes rolling back and it scared me. Unusually enough, her temperature was normal. The on-call Hematologist wanted to rule out a line infection so she gave us the go ahead to take Niki to the ER. Apparently, the sudden onset of of chills could indicate that a fever was about to spike.

As luck would have it, we got pulled over on our way to the hospital. 

John hurriedly explained to the officer that we were on our way to Kaiser SF's Emergency Room for Niki. The cop pointed his flashlight on Niki (who was sleeping and still extremely lethargic) and then he looked at me. The cop then told us that he would let us go "without a write up". Niki looked pretty sick, but the officer still gave John a brief reminder that "any kind of tint is illegal on a vehicle." Fucking cops.

We were about 1/2 way to the hospital when Niki suddenly woke up and vomited Linda Blair-style all over herself. What worried me the most was the fact that she was too weak to react to her retching. She spewed out a huge amount of vomit and went back to sleep. I didn't want to unbuckle her so I tried my best to clean her up as she still sat in her vomit. I managed to strip her naked and clean her up by the time we got to the hospital.

It's hard to believe she went from this...

To this in less than a day...

Niki's lethargy started to improve by the time we got to triage.

She mustered up enough energy to fight with the nurse as he put the pulse oximeter sensor on her toe. (She hates that thing.) The nurse checked her temperature and it was still normal.  Niki must have "vomit out all the sick" on our car ride. By the time the doctor came in the room she was acting perfectly fine.

After a few hours of hanging around in the ER, the doctor finally sent us home. No lab work up. No IVs. Not even a urine sample. The doctor reassured us that it was probably just a stomach bug because her temperature remained normal. He advised us to increase fluid intake and sent us on our way. John and I got home by 4am.

I went to work the next day.  There's no time to rest when you're a Mommy.

Niki was perfectly fine during the day, but she would vomit once every evening thereafter -four days on vomiting once a day. We kept her hydrated with Gatorade and reduced her milk intake to prevent stomach irritation. Her appetite was a bit decreased, but we believed the doctor when he told us that Niki had a "stomach bug". John and I honestly didn't think much of her yacking.

Flash forward to Saturday, June 19th at 10am -- Niki woke up shivering again. She also threw up, but didn't react much to the vomiting. She fell back asleep, but it was different this time. Her lips and feet were ice cold and her skin appeared mottled. We were all very worried.

 I took a picture of her skin so I could show the doctor.

 

Her temperature was ever so slightly elevated (99.2), but we still thought it was a stomach bug so that gave us some temporary reassurance. I called Pediatrics instead to see if I could get an urgent care appointment for Niki's "stomach bug". I had a telephone visit with a pediatrician almost immediately. (This was the same doctor --Dr. N-- that saw Ethan the day before he had his head bleed. I felt confident enough to speak with him over the phone.) Niki was very sleepy and although her lips weren't discolored, they were still very cold.

I was hesitant to go back to the ER because they didn't do anything the last time we went there. Actually, the ER doctor made us feel silly for coming in. I let the Dr. N know about our recent experience, but he told me to take Niki to the ER again for an evaluation. I called the on-call Hematologist so she could notify the ER that we were coming. Then John and I started packing up Niki's baby bag and medical supplies so we could head off to the ER. We also prepped the boys and informed them that we were going to take Niki to the ER. All the while Niki was still sleeping. Just as we were about to leave, we felt her skin and she was burning up.

Less than an hour after Niki temperature was 99.2, it spiked spiked to 105.4!

My best friend (K) just so happened to be on her way to pick up the boys. She and her fiance graciously offered to take the cubs to the AT&T Park carnival a few days prior.  It worked out perfectly because we didn't have anyone to watch the boys on such short notice. They came minutes after we rechecked Niki's temperature. (Thank God for K & J!) We set off for the ER as soon as the boys left and my SIL (A) came with us to help.

When fear hit me, it hits me hard. And I was fucking terrified.

Most of the time I'm able to maintain my cool, but that day was different. The triage nurse's poker face sucked and I could see the worry in her eyes. Niki was really lethargic by the time we got to the ER and to top it off, she was sweating profusely. Oddly enough though, her skin was still pink (it wasn't mottled any longer) and she had no signs of respiratory distress. I got choked up the minute I saw her vital signs though -- O2 saturation 92% and pulse was 230. I know your heart rate speeds up when you have a fever (to cool your body off), but her pulse still didn't sit well with me.

Something was seriously wrong with my baby girl and it happened very quickly.

I didn't know what to make of her symptoms, but I prayed that she would be okay. In case you didn't know, you can die from central line infection. The fact that her fever spiked worried me. All I could do was think about her cold lips and feet. I was holding Niki in the triage room and I felt myself start to tear. I blew a quivered breath up toward my eyes to stop the tears from falling.

That was not the time to lose my composure.

Niki looks so much like Ethan when her eyes are closed. She wasn't on a ventilator or even remotely close to knocking on death's door, but my imagination was running wild. She was way too sleepy -- too sick -- for me to NOT worry. Being a part of the "moms who lost a child sisterhood" has given me great knowledge on all the horrifying ways that kids can die. These dark thoughts attack me when I'm scared. This was the first time -- in a long time -- that I felt like I could possibly lose my baby.
I don't think I'm over reacting when I think of death in these situations. Tell me how you would feel if you were me....if it was your kid that died or your kid that was very sick. The horror of losing a child has become a reality for my family already.

I'll NEVER think we're untouchable after that experience.

They got Niki into the exam room quickly. The nurse gave us an ice pack to help bring Niki's temperature down. We even wet Niki's hair and put cool washcloths on her forehead to buy time until the doctor came in. Thank God he didn't make us wait long. The doctor took one look at Niki and ordered blood cultures, a urine culture, bolus IV fluids, and a Tylenol suppository. He listened to her lungs and told us that it sounded noisy. (Niki's lungs were clear on Monday!) The doctor ordered a chest x-ray to check it out, but he theorized that Niki had either pneumonia or a line infection. Worst case scenario, he said that she could have both.  Niki started to be more responsive as her temperature slowly cooled down. She was drinking again, but she was still completely wiped out.

After hours of waiting, the Pediatrician came in an told us that Niki was being admitted. Her WBC came back very high which indicated an infection of some sort. As luck would have it, a Pediatric Infections Diseases MD was working the floor that weekend so Hematology decided that it would be best for Niki to be admitted in San Francisco instead of being transferred to Oakland Kaiser. K kept in touch with me during Niki's ER stay. She sent me pictures and reassured me that the boys were having a blast. K & J even dropped the boys off to my mom's house once we found out that Niki was going to be admitted. It was so helpful to feel like I didn't have to worry about the boys. John and I often feel torn when we have to leave the boys behind to take care of Niki in the ER. I felt relieved knowing that the boys were enjoying themselves.

Niki's was admitted to the 7th Floor Pediatrics Unit. The Intensive Care Nursery coordinated a private room for us to spend our last moments with Ethan and it was on THAT floor. I hate the 7th floor. That unit holds no good memories for me.

7th Floor Pediatrics

 The room Ethan died in is located at the far back corner of the Pediatrics Unit. The room is used to store extra isolettes, beds, and cribs now. I'll never forget this number.

In a brutal twist of irony, Niki was assigned to the SAME ROOM Ethan was taken into by the Paramedics when he was transferred from the ER at Kaiser SSF. He was later transferred to the ICN, but they did all of his stabilizing (giving anti-seizure medications) in Pediatrics.  I heard Ethan cry for the last time in that very room. I remember that day, that room, and those halls well. John confirmed that we were indeed in "Ethan's room". And, we hoped that was a good sign.

KP's newest guest...

Ethan and Niki's Room...

The hall...

 Ethan had his spinal tap done in there...

I felt like I was on a bad trip down memory lane. The only upside to these unfortunate twists of fate was the fact that Niki distracted me from entering total depression. I really fucking hate the memories associated with that floor!

After a few hours, Niki was starting to act a little more normal. The scariness subsided after she got her first round of antibiotics and the Tylenol fully kicked in. Niki was still febrile (101+), but she got some of her spunk back. After hours of sleeping, she woke up with a sudden burst of energy. The nurses encouraged us to let her walk around for a bit.

My spunky girl...

Tiny hospital socks for a tiny patient...

Her gown was backwards for a good reason - her Broviac

Niki's condition really improved compared to how she was earlier that morning. My sister and her husband came by to visit and marveled at how well Niki was doing considering the circumstances. My sister is a Clinical Microbiologist so she schooled me on all sorts of possibilities concerning Niki's potential line infection and treatment.  Niki was social again too.  She even waved at the SFPD officer that was on 24-hour watch right outside of our room. John and I overheard the officer's briefing each other during shift changes and it turns out that one of the kids on the floor was a child abuse case. I guess the cops weren't as HIPAA conscious as the nurses were because they talked about the baby when our door was open. She was admitted for abuse when she was about 2 months old. I wasn't trying to listen, but it's hard not to, ya know? The poor thing. She was an adorable little baby too -- just about Niki's age. And, it broke my heart.

It's a shame when children are in the hospital, but it's an even bigger shame when that hospitalization could have been prevented.

All in the Name of a Clean Vagin@...

So, I have a terrible confession to make...

I dropped Niki on Saturday.

It was soooo bad and I felt sooooo awful. I'm convinced that I totally jinxed myself after I gave the "2 unnamed baby falling culprits" (see here and here) such a hard time about "allowing" Niki to fall off the bed.

And then here I go DROPPING her!

I was giving her a bath in the bathroom sink when it happened. I was holding her over the sink to wash her "lady parts" when she forcefully arched her back and started to fall. Keep in mind that Niki is a almost 1/3 of my weight, okay?! Anthony was keeping me company while I gave his sister a bath so saw the whole thing. My little Boo let out an audible gasp when Niki slipped out of my hands and hit the ground. Even a four year old kid knew it was bad!!! On her way down, I desperately clawed at her slippery little body in an attempt to catch her from falling. But alas, my efforts were in vain because she fell anyway! Who in their right mind DROPS their hemophiliac child?!

I'm sure Boo will remember that moment for the rest of his life. Lol...FAIL!

Niki fell so quickly that I didn't really see what body part hit the ground first. I just saw her fat body flip and tumble. I *think* I saw her hit the side of the tub, but I wasn't 100% sure. When I picked her up, I saw red marks (from my desperate clawing) on her arms, legs, and trunk of her body. I checked her head to look for bumps or marks, but THANK GOD she had none. She was crying, I was crying, and Boo was stuck staring at the both of us with his beautiful, wide eyes.

He totally had a "Oh shit Mom, what the f*ck did you do?!" look on his face.

Luckily, the fall wasn't as bad as it sounds. I gave her factor 15 minutes prior to the "Fall of Shame" so she was covered. (NovoSeven is at its strongest within the first 1 hour or so of infusion. Factor VII has a very short half-life because it's also a very potent factor. To state it simply, the body uses FVII very quickly to help clot. Her blood is the "most normal" RIGHT after she gets her factor.)

But, that's not the only good news!

It was laundry day so there was a pile of pre-sorted dirty laundry (I believe it was colors) right next to the tub. Niki's fall was softened my a pile of dirty pajamas, t-shirts, and Lord-knows-what-else (coloful "Vickys" undies perhaps?). Niki stopped crying almost instantly after I picked her up.

I quickly and *carefully* ran downstairs so I could grab my phone to call the on-call Hematologist. I was wearing socks and my MIL has hardwood-- I didn't want to fall and inflict MORE damage! When I got downstairs, I grabbed one of Niki's many cold packs and placed it on the largest red mark (near her right shoulder). I was so worried that all of my frantic grabbing may have caused a joint bleed somewhere.

I also placed the dreaded phone call to John to let him know about my "parenting FAIL" and he wasn't too jostled by the news. (Perhaps because he was guilty of a similar fail before? Lol.)

After what seemed like ages of being on hold, the Hematologist (I forgot her name because I was in such a panic) on-call finally got on the phone. Meanwhile, Niki was trying to wrestle the cold pack from my hands (like she normally does) so she could gnaw on it.

My daughter is such a hopeless little heffer. Lol!

Dr. No Name assured me that Niki was perfectly safe (just like any normal baby would be if they didn't have head trauma) because she JUST had her factor dose. In fact, the Hematologist told me that she felt "more sorry" for ME! She knew how guilty I felt.

She could probably totally hear my pathetic sniffling how terrible I felt in my voice.

As always, the hematologist advised me to watch out for growing bruises (she had so many fingerprint bruises from my grabbing), joint bleeding (swelling, redness, pain during movement) and of course, head bleeding (highly unlikely since she fell on a pile of laundry). John drew a circle around the larger fingerprint bruise to monitor the size too.

John came home and didn't make me feel that bad. He held Niki and kept saying (totally joking, of course) "Mommy dropped you, huh? Mommy's a bad girl, huh?" And then he'd pretend to spank me to appease his baby girl. Of course, Little Miss Queen was totally soaking it up by snuggling close to her Daddy and giving me the evil eye.

LOL...he's such a meanie. ;)

So, it has been a few days since the "Fall of Shame" and Niki is doing just good---no joint bleeds, the fingerprint bruises never grew, and she didn't have a head bleed. But...my "parent ego"? Not so much. I think I'll feel guilty about that for the rest of my life. However, during the holiday party Ate A's mom disclosed to me that Ate A fell off the bed when she was a baby too. It's nice to know that I'm not the only "mom of a severe bleeder" that had that happen to their kid. When Ate A overheard that she fell off the bed she replied, "That's f*cked up, Mom." and totally laughed about it.

I hope that Niki has the same sense of humor.

On a lighter note, AT LEAST Niki will know how much importance I put on personal hygiene. 'Cause let's face it people, some women just don't give a damn. ;-P A very important life lesson was learned here folks so I say the fall was worth it. (Or at least that's what I'm telling myself to make me feel better, lol!)

Sure, I dropped my baby, but....

it was all in the name of a clean vagin@!

The Great Flu Fiasco of 2009..

I know, I know... I've subjected you all to a major "blog drought". Shoot, I've subjected myself too! I started writing this post last week, but wasn't able to finish it until today (11/8) I've been SUPER busy, but I finally had a minute to finish up my original update. For starters, I am happy to report that Niki and I are no longer "kawawa girls".

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. :)


Niki getting her temperature taken for the billionth time.

Both Pics Taken by: Boo (our little photographer)


Niki @ the ER (Taken by: Sa-Sa my little sister in law)

Niki checking out the CT machine.
Finally getting antiobiotics!!!

Leaving the ER with Daddy.
We had a loooooong day!

The Kawawa Girls... (a long post)

My swab came back negative!!! With that being said, it's now safe to say that I probably DO NOT have the swine flu.However, the tests can yeild false negatives, but who cares.

Can't I get a woo-hoo?

I didn't want to say anything at first (because ya know, strangers on the internet can be judgemental...lol) but my doctor really believed that I had H1N1 when she saw me on Thursday. She came into my exam room with a N95 mask and everything! Although I totally understood why she used personal protective equipment during our visit, I was still a little insulted.

Wearing a mask is pretty much the medical equivalent of putting up two index fingers to make a cross.

I work in health care so I'm real good about hand hygiene and getting my flu shot every year. Serves me right for procrastinating on getting my flu shot this year. I suppose my doctor was extra cautious because she knew that I was directly exposed to a few swine flu cases at work. No bullshit, I was pretty closely exposed to H1N1. (Like, I tapped on the asses of contaminated computer mouses close!)

Honestly, I was kind of scared.

I even isolated myself from the kids on my doctor's orders. So, I'm SUPER glad that I don't have the swine flu! (Big shout out to my big sis for giving me the "gift of reassurance".) I'm slowly starting to recuperate, but let me take a moment to say that this flu was the worst one I have ever experienced in my 27 years of living. Like seriously, I felt kawawa for myself! John even woke me up at 1:00 am on Saturday night because he said I "looked dead". Haha, he made me drink Gatorade. Seriously kawawa.

This years flu is really...catchy...like a show tune.

I like to theorize that I contracted my flu from a borrowed pen. One doesn't think to wash their hands after touching shit on their own desk, ya know? But now that I think about it, my patients reach into my pen cup all the time. (Wow, that didn't sound right did it? Well, you know what I mean.) Being the good coworker that I am, I even sanitized my pens before I left the office. :) So my friends, don't think for a minute that simply washing your hands is good enough to keep you immune! You never know where all sorts of ickies could be hiding. I was NOT kidding when I said that my body felt like it was stomped on by elephants. Kawawa, remember? Seriously, get your seasonal flu shot people!!!!

This public service announcement was brought to you by...me. :)

If you haven't noticed by now, I'm up at this ungodly hour thanks to my slow-as-molasses recovery from the flu AND added anxiety brought on by Niki spiking a fever this evening.

Oh, there's no rest for the weary is there?

You're probably thinking that I should just give her Tylenol and the problem would solved, right? Well, my Little Miss High Maintenance cannot have Tylenol (or any other fever-reducer) because of her Broviac. Things like Tylenol can mask a high fever and a fever could indicate an infection! If Niki ever has a fever of 101.5 or above, we have to immediately call Dr. Awesome's office for further instruction. You have to remember that Niki's Brovaic leads directly to her heart. Any infection would NOT BE GOOD. The minute we place "the call" our instructions could involve a performing a blood culture (drawing labs), coming in for an appointment, or going directly to the ER. Do not pass go, do not collect $200. (Hey you gotta have a sense of humor in these sorts of situations, okay?) But no, really...this is all a game.

We play every day with one goal in mind: Prevent this condition from "monopolizing" our daughter's life.

So far, we (including Dr. Awesome) have been doing a damn fine job at preventing FVII Def from taking over Niki's life. She has yet to be hospitalized. She has yet to have a major bleeding episode. She's 8 months old and this is the FIRST time she's ever had a fever.

Not too fucking bad if you ask me. But, I'm biased....and a little cocky. :)

I woke up because she was being a "kawawa girl" and now I can't sleep. I've been checking Niki's temperature about every 30 minutes. She's been consistently 100.4 and is finally sleeping comfortably. Naturally, I'm on edge because all it takes is 1 degree for all hell to break loose. Lucky for Niki, she has an appointment with Dr. Awesome at 9:30 this morning. It couldn't have come at a better time 'cause I can't wait to figure out what is causing this damn fever!

Did I mention that she fell off a bed again?! Yep....AGAIN!

It happened Friday afternoon. I was in the thick of sickness, dead asleep when I woke up to someone yelling my name. Into my room bursts this poor, worried soul clutching my whimpering baby girl. So kawawa. Apparently, Niki rolled off the bed and fell on her back....on hardwood.

Yessss! Ha....not.

I was REALLY sick (like 102 degrees sick!), but I somehow managed to get my shit together enough to fumble around and gather her factor supplies. Meanwhile I could hear "oh shit" being murmured while Niki totally egged on the guilt by letting out sad, "kawawa baby" cries every few seconds. Meanwhile, I reassured the poor, worried soul that there was no need to feel guilty while I administered her factor.

With an icepack, a bottle, and a whole lot of hugging, Niki was good as new. :)

I didn't even bother to call Dr. Awesome's office anymore since I knew what to from the last time it happened. Besides, I remembered that she had the appointment today anyway. Other than administering factor, there is nothing else that can be done other than to watch for signs of a subdural hematoma anyway. The docs will not unnecessarily dose with her radiation (CT scan) unless she is showing signs of a bleed.

So today, as we enter 4 days s/p possible head trauma, my "Kawawa Girl" has spiked a fever. (There's some medical abbreviation for ya son..ha!)

Could it be teething? Could it be the flu? Could it be a Broviac infection? Could it be an early sign of a minor head bleed? (Ethan also had a slight fever the night we took him to the ER.)

We'll find out in a few hours.

In the meantime, I'm going to:

1) Continue to check her temperature.
2) Chill the fuck out. (blogging SERIOUSLY helps)
3) NOT allow "worry" to monopolize my mind.