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Sunday, May 23, 2010

At Least She Looks Good in Red...

Written May 13, 2010...

On May 12th at 2:50 am, I woke up because Niki was crying hysterically. Once my eyes adjusted to the light, I saw blood everywhere! We co-sleep and our bedsheets were covered in so much blood that I initially thought Niki got injured somehow.  My eyes adjusted a little more and I saw that Niki was thrashing about because she had blood all over her. She was frantically using her hands to wipe her face and then promptly vomited a large amount of  bright red blood on the sheets. Twice.

It looked like something out of a horror scene. :(

A nosebleed I can deal with, but vomiting blood could indicate a GI bleed. And we all know she's had plenty  of   those  before! John woke up in a flash and immediately sprung into action. He started mixing and administering her factor while I was on the phone waiting to be connected to the on-call Hematologist. Meanwhile, Niki was crying and still gushing blood everywhere.

It was hard to tell where the blood was coming from because there was SO much in her mouth too.

Dr. Awesome turned out to be the on-call Hematologist which made me feel instantly guilty for calling her so late/early. I know that she has a son around Niki's age and as a mother I felt bad for contributing to her early morning exhaustion.  Niki was still actively bleeding so John tried to apply pressure as best as he could. The Nosebudd is too large to pinch her tiny nose so applying constant pressure is tough and involves holding her down. (Which we both hate to do because it feels like we're violating her trust.) After a brief discussion, Dr. Awesome and I  were pretty sure that the bloody vomit was more than likely a large amount of swallowed postnasal drip. However, given the large quantity of blood and Niki's hysteric behavior, she felt that we should take Niki to the ER.

With Niki's prior history of GI bleeding, it was important that we made sure that there was absolutely no GI issue going on.

The NovoSeven was starting to kick in and Niki finally calmed down after John stopped applying pressure to her nose. Given what happened the last time she had a nosebleed, we figured that it would be best (and less traumatic) if we left her nose alone so any forming clots wouldn't be dislodged. As we waited for the bleeding to completely stop, we provided "hygiene control" by using baby wipes to clean up the drips before they went into her mouth. We changed her, packed some factor, grabbed her lucky ladybug blanket, and off to the ER we went. There's something about being surrounded by ladybugs that makes me feel like everything will be okay.

(I saw them everywhere after Ethan passed away and Niki is a Ladybug too.)

It was a completely different staff that was on that night. No Nurse Stat or Dr. Daddy, but I swear it felt like I stepped onto the set of Grey's Anatomy. I'm used to Niki's nurses being pretty (it's statistically easier to find hot nurses than doctors), but this time Niki's nurse and doctor were H-O-T. 

Niki had her very own Dr. McDreamy for a change. (And I half-heartedly wished that I looked less 3am-esque.)

Dr. McDreamy was a very efficient doctor which was an added plus. He was already in the exam room waiting for Niki and knew her history too. He won my heart when he started to do the exam. He worked his magic and calmed her down. Niki just let him do his exam (all the while staring at his beautiful face) and then he was off to do whatever it is doctors do while their patients wait for hours and hours.

He concluded that Niki wasn't having a GI bleed. (Thank goodness!)

Nurse Beautiful (that's my nickname for her in case you didn't figure that out by now) did the customary blood draw from Niki's Broviac. There was no Ceftriaxone (abx) infusion this time around because Niki didn't have a fever. A line infection wasn't a concern. By that time, Niki's bleeding had completely stopped so we turned down the lights so she could rest. John and I took turns nodding off so we could catch up on some sleep too. A few hours later her test results came in and Dr. McDreamy said we could go home.

It was 7:00 am, painfully bright outside, and I was supposed to start work at 8:15.

I was exhausted, but I need to preserve my FMLA. So, off to work I went instead of staying home (like I wanted to) so I could comfort my baby. As always, John stayed home with Niki so he could monitor her status and play "Mommy". Meanwhile, Nurse Richard called me at work and advised me that Niki should stay on factor every day for the next three days. (Then we could go back to every other day.) After a long 8 hour shift, I went home, cuddled with my crusty-nosed daughter, and crashed. I didn't even eat dinner.

Flash forward to 2am and Niki jarred us from deep sleep with her hysteric crying. 

Her nose was bleeding...again. Our bedsheets looked like something out of a murder scene...again. And John and I scrambled to give her factor...again. We didn't contact the on-call Hematologist this time. Even though Nurse Richard reassured me during our afternoon discussion that we should call for everything, I was hesitant and embarrassed to call for such a "trivial" thing. I know that it's their job to advise us in the wee hours of the morning, but still...I felt bad. I'm working on these internal issues of mine.

I often wonder if any other hemo-Moms feel guilty like I do.

Seeing that much blood is unnerving for me as her Mom, but Niki was tolerating the bleed well. I need to learn how to avoid getting emotionally charged in these situations. Niki wasn't vomiting this time so that helped me keep my emotions in check. Besides, she didn't cry as long as we left her nose alone (the down side was there was blood everywhere) and the bleeding started to slow after about 30 minutes.

Her nosebleed was completely resolved (and she was back to bloody-booger status) after about an hour.

The following morning Niki had a follow up appointment with her Pediatrician, Dr. Sweetheart. John called in sick the day before so it was my turn to take time off from work. I called in sick (using my FMLA) just for the morning. I have to be very conscious about how much time I have FMLA left before I put my job on the line.

It sucks, but what can I do?

Dr. Sweetheart is the best! Her exam was thorough and despite her little nose being plugged with clotted blood, she determined that Niki had a sinus infection. So, Dr. Sweetheart sent down a 10-day course of Amoxicillin down to the pharmacy.

Passing time by trying to yank off her MedicAlert...
Naughty girl realized that I caught her..
Niki completed her course of antibiotics this past week. She still has her never-seems-to-go-away-cough (part of the joys of being immunocompromised and constantly catching things from daycare), but otherwise she's doing okay. She hasn't had any bleeds ever since. Thank goodness! If there is some humor that can be found in this whole situation, it would be a lovely anecdote that fave "Seven Mama" shared with me on Facebook...

"At least she looks good in red!"

She was right. Indeed, my daughter looks beautiful in red. :)

Stunned, on our way to the ER...
I HATE this room...
Sizing up the situation...
After seeing Dr. McDreamy
Waiting for test results...
Exhausted, on our way home...

Saturday, May 22, 2010

Niki's Dressing Change Video...

 Posted on YouTube April 2, 2010...

This video clip is dedicated to those of you that have always wondered how we do her dressing changes. We had no problem staying sterile until she got older and became more curious about the world around her. We stopped restraining her (to ensure sterility) because it made dressing changes way too traumatic for her when she turned about 5 months old. The good news is she has been infection free despite our risqué technique. Actually, little Niki tries to help with her dressing changes. Gotta love her! She's already trying to manage her own care and she's only 13 months in this video. :)

Friday, May 21, 2010

Cinderella Had a Heart Attack...

Written May 7, 2010...Posted Today. :)

In case you didn't already know, my mother's real name is Cinderella. (Yes, for real.) She was born in 1947 and the Disney movie came out in 1950. So, I'm guessing that my grandparents chose her name because of the classic folk tale. I  think this is both awesome and perplexing that the same time. The original story about Cinderella was adulterated numerous times. It was not nearly as carefree as the Disney remake.

But I digress...Cinderella had a heart attack on May 6th--not the Disney one, my mom.

Don't be alarmed -- she's okay now! My brother called me at work shortly after my lunch hour ended. He informed me that he was in the ER with our mom and reassured me that she was stable. Apparently, she had been feeling chest pain all day at work and it finally got to the point where she couldn't ignore it any longer. She drove herself to the hospital. I immediately left work (after tying up some loose ends at work with G) and by the time I got to the hospital, my mom was doped up on morphine and IV Nitroglycerin. 

Mom was coherent, but clearly out of it.

I'll tell you why I knew this. You see, shortly after I arrived, my mom needed to use a bedpan to go pee. So, I stayed for "moral support" because she wouldn't let me go  and my brother left the room so she could do her business. I didn't stare at her, but I had to hand her sanitary wipes so she could clean herself up. She then proceeded to lecture me on the importance of vaginal cleanliness right in front of the nurse. Like I hadn't had my own vagina for the past 27 years! So. Embarrassing. Of course, I had to redeem my ego back somehow. So, what was my way of reassuring my mom that I know how to keep my lady parts sanitary?

I responded with, "Mom, I wouldn't have four kids if I didn't keep my vagina clean." Lol! Yep, my mom was really doped up.

Lucky for me, I didn't have to focus on anything else other than my mom. I knew the cubs were being taken care of. Boo and Niki were with my MIL and I figured that I would just pick Kev up from school on my way to the hospital. My friend G was already planning to take Kevin, her daughter, and godchildren to the movies to watch Diary of a Wimpy Kid after school. When my mom ended up in the ER, I figured that we would just cancel their plans given the circumstances. G offered to help me immensely that day. She insisted on picking Kev up from school, still taking him to the movies, and dropping him off at home. I was hesitant at first because I didn't want her to go out of her way, but she was very adamant about sticking to the plan. I wrote a note to the school and off he went with G to the movies. When she dropped him off that night she bought Happy Meals for Kev and Boo. What a sweetheart, huh?! I'm forever indebted to her.

She sent me these pictures to show me that he was okay. Looks like he had a blast. :)

Meanwhile, the nursing staff seemed tickled pink that their patient was "Cinderella". No one seemed to get over her name! Later that afternoon, they took Mom to the Cardiac Cath lab so the Cardiologist could take a gander at her heart. By that time, all four of her kids and my niece were hanging around waiting for the procedure to be over. After a few hours of waiting, we discovered that one of her main arteries was almost completed occluded! If she waited any longer she could have croaked or had a serious attack. The Cardiologist put a stent in and advised us kids that we need to make sure that our Mom was more diligent about her health. She's was non-compliant with her blood pressure and cholesterol medication for months which put her at high risk for complications.

Later that night, I lightheartedly told my Mom that I didn't care if she died, but the cubs did so she better take care of herself.

I was only half joking with her. I absolutely care if she dies, but I care even more about having to explain death yet again to the cubs. Processing Ethan's death is enough for them for now, ya know? I like to think that my scare tactic worked because as much as she can doubt my love for her, she knows that my cubs love her unconditionally.

I have no idea why though. (Lol...if you're reading this I'm kidding, Ma. Stop stalking me and get back to work!)

That's how I deal with scary things. I crack off-color jokes so I can wrangle with my internal emotions a little better. Becoming an instant comedian helps me feel like I have control of an uncontrollable situation. Life is tough, but we don't have to become engulfed in the stress, ya know? And injecting laughter and satire does wonders on my weary soul.

My mom ended up staying a week in the hospital.

John and my MIL were very supportive and took awesome care of the cubs during my absence. I visited my mom every day after work and spent a lot of time with my brothers, older cousin, and niece. It's funny how people come together during times of crisis. If there's one thing that I will *always* cherish about that week, it's the closer bond I developed with my older brothers and cousin. We've all grown up and have lives of our own so my family hardly spends time together. There was a time that I wouldn't dare curse in front of them. Now, I curse like a sailor and no one bats an eye. It feels good to be treated more like their peer than their pesky kid sister/cousin. We would hang out until the wee hours of the morning sharing stories.

I even got to tell them about all the cool, shocking,  and interesting things that I learned and saw at school.

My mom was discharged from the hospital into a slew of newness. New medications. New relationships with her kids. And a new closeness between her children that she'll be able to witness in her final years. She's faaaaar from dying any time soon, but I'm glad we all walked away from this experience learning something new about ourselves.

Cinderella had a heart attack, but our family's new fairy tale is still being rewritten.

Thursday, May 20, 2010

Between the Lions...

Written on April 26, 2010..

Our nation's school system has failed our children. Or maybe it was the Internet. Or Hip Hop. Yeah, it was ALL Hip Hop's fault. Okay, I'm totally kidding. I'm not 100% sure about what messed up our youth, but give me time 'cause I'm still trying to figure this shit out.

So why do I feel this way, you say?

Well, that's a damn good question my friends. As a matter of fact, I made my assessment during a recent trip to the library that I had with two preteens. (I'll call them X and Y because I didn't get permission from their parents to blog about them.) I thought I was going to the library just to give X & Y a ride so they could work on their school project, but boy was I wrong.

I decided to bring the boy cubs along with me since I was going to the library anyway. I figured we could pay my late fees (I was naughty), rent a few books, and maybe even play at the park afterward. But, when we got there X & Y needed my help. I thought they would go on their merry book-searching way, but was surprised to find out that those two individuals had no idea how to navigate their way through our public library system.

I was in shock.

They thought they were supposed to use the computers (you know the ones that you would use to search the library system for books) to "google" the names of books. X & Y aren't idiots so I was just plain surprised when they even asked me what to they were supposed to do do. Sure they went to the customary class field trip to learn about the library, but they never checked out a book during that visit. Nor did their parents ever take them to the library on a regular basis when they were growing up. Their lack of library knowledge was clearly a case of "if you don't use it, you lose it".

How did they ever survive so many years without ever needing to check out a book?

Now, before you think that I need to shut up and get off my high horse, please take note that I'm absolutely not knocking these children or their parents. They were, after all, raised in a society that is completely reliant on technology. We live in a digital world and I myself am guilty of the same dependency. The Internet was just starting to get popular when I was Senior in high school, but I learned quickly in college that is was easier to just Google answers. Even my own library trips slowly died down.

What's happening out there?

One of my friends is an educator and she also said "computer dependency" is a social norm that is here to stay. I hope that X & Y are outliers in our youth today, but I doubt it. We live in a society where children get library cards, but don't get to use them as frequently as they should. Why go the library when you have the world at your fingertips? On top of that, our public library system (at least here in California) has been hit with budget cuts and employee furloughs.

The Internet has taken over the world.

My own kid can type faster than he can write neatly. I try to make a conscious effort to take the cubs to the library on at least a monthly basis, but it's hard with our demanding schedule. The digital age has been a blessing and a curse. Why try and figure out what the library's furlough hours are when I can Google ebooks 24 hours a day? Or perhaps, just go to Target or Barnes and Noble to buy a book to add to our home library?

It's all a convenient mess. 

Our society gives little value to the archaic things we used to appreciate so much. I adored the library as child. I could spend hours and hours there. Now, the library isn't as available as it should be. Just recently I took Boo thinking we could rent some books at 6pm at night only to find out that the library closed!


Why do commercial book stores stay open longer than the library? Isn't the "library research experience" important any more? I miss the days when every kid would own a set of Encyclopedia Britannica. Even John, the smallest bookworm of them all, owned a set when he was a kid. His grandmother, God rest her soul, lovingly lugged the entire set for several blocks just to give it to him. Every kid needed an Encyclopedia Britannica set and/or a library card back in the day.

Now, you get a kid a laptop and you're a rockstar parent.

Most computer purchases are placed under the ruse of "being for school", but kids end up spending more time surfing the net than actually typing papers. Technology is great, but it's harmful too. I'm just saying that we need to be more mindful of what we're teaching our future leaders.

I thought I was just playing chauffeur that day, but it turned out to be a wonderful experience for my cubs and X & Y.

I gave them all a sound lesson on how to navigate the library system. X was doing a research paper on Vincent van Gogh. I told X to type his name in the search bar "like you do on Google" and hit enter. Of course, a whole slew of book titles came up on the screen. This then prompted me to show her how to refine her search. Once we found a book that appeared to be useful, X asked me what we needed to do next.

I saw a light bulb slowly start to appear over their little heads.

We went to the shelf, found the book, and I was reigning champion of day! The boy cubs cheered out of excitement -- like we were on a hunt and just found the treasure. I decided right then and there that my boys needed their own library cards. I've been renting books for them under my own card, but it was time for them to become masters of their literary universe.

So, I took them to the counter so we could get the paperwork started.

Boo and Kevin were excitedly chattering like birds during springtime. My boys were so proud when they finally got to write their names on their cards.  X & Y had their own cards from their school field trips, but since misplaced them. So, the librarian looked up their information and I paid the $2 fee to get them new ones. I then explained to the cubs that having a library card is a huge responsibility. I stressed to them that when you a rent a book you have to promise to bring it back on time. X & Y were listening as I when X suddenly blurted out, "Do we have to pay?"

Then, the librarian snorted.

He was just as surprised as I was with that question. I turned to X and explained that libraries run things like credit card companies do. The card lets you get things for free because the library trusts you. So, it's important that you don't mess up your credit and "pay" on time. X seemed to understand this concept a little better after I gave her that explanation. After that I took the boys to the children's section so they could pick their books. As another librarian checked us out, she commented on how there should be more parents like me in the world.

The comment was flattering, but I felt like it totally bogus in describing me.

I hadn't even planned to go to the library that day. I  taught them that life lesson by happenstance. However, I will take my boys more frequently from now on. And, I'm glad I got this wake up call early. The cubs may always prefer the Internet over the the library, but at least now I know that they know how to use the Dewy Decimal System. And, if you don't know what the DDS is, perhaps you should take a trip to the library yourself.

This has been a public service announcement :)

A World of Wonderment...
Kev using his card...
Boo using his card for the first time...
My Lions with their first rentals...
Kev's selections

Boo's selections

Watch this video if you're wondering why I chose the title of this post.

Tuesday, May 18, 2010

Bloody Sex...

Written on April 25, 2010...

Yesterday at school one of the trainers mentioned during a presentation that his father-in-law "discovered how blot clots". This trainer is also one of the Executive Directors (I'll refer to him as "Ed" from now on) and although he is very nice, I still didn't feel comfortable enough to approach him about non-sex stuff.  I didn't want to pry. Naturally, Ed's link with the bleeding disorders community peaked my interest enough that I wanted to do some stalking *ahem* research to find out more info. I had a feeling that I knew exactly who his FIL was.

And I was freaking right!!!

In fact, I read a few of his research articles before! Ed's FIL (I'll call him Dr. Blood) did a huge amount of groundbreaking research on the importance of tissue factor's role in coagulation. Dr. Blood's work and dedication made a phenomenal contribution to the bleeding disorders community and mankind as a whole. So, why did learning about who Ed's FIL give me goosebumps?

Well, what were the odds that my long time dream of becoming a Sex Educator would have some sort of link to Factor VII Deficiency?

If you don't understand why this is such a symbolic coincidence, allow me to go off on a different tangent for a moment to educate you on the inner workings of FVII in coagulation. Mmmkay? This may even answer any questions you've ever had about Ethan and Niki's condition. (I put the text in blue if you would rather skip the Pathophysiology part of it all. Although, I *highly* recommend that you educate yourself on this super interesting shit.) ;-)

Dr. Blood pretty much discovered that tissue factor and FVII work together to initiate a very powerful sequence in the coagulation cascade. This portion of the cascade is called the Extrinsic Pathway or "tissue factor pathway". I hate to use Wiki was a reference, but this was the simplest explanation (sans complicated medical jargon) on the Extrinsic Pathway:

"The main role of the tissue factor pathway is to generate a "thrombin burst," a process by which thrombin, the most important constituent of the coagulation cascade in terms of its feedback activation roles, is released instantaneously. FVIIa circulates in a higher amount than any other activated coagulation factor." 

If the Wiki stuff is too vague, I got this information from Novo Nordisk : (BEST EXPLANATION)

"Haemostasis is the human body's response to blood vessel injury and bleeding. It involves a coordinated effort between platelets, numerous blood clotting proteins (or factors), including ‘tissue factor’ which results in the formation of a blood clot.

Tissue factor is a protein that is exposed to blood once a blood vessel is injured (causing bleeding). The process of haemostasis commences when tissue factor binds to a specific coagulation protein called activated factor seven (FVIIa). The binding of tissue factor and FVIIa is the first step in a process that will eventually lead to the development of a strong, stable blood clot that will stop and prevent further bleeding."

If you're a science geek and you're thirsty for more, I also borrowed some of this information for your reading pleasure:

"The extrinsic pathway is an alternative route for the activation of the clotting cascade. It provides a very rapid response to tissue injury, generating activated factor X almost instantaneously, compared to the seconds or even minutes required for the intrinsic pathway to activate factor X. The main function of the extrinsic pathway is to augment the activity of the intrinsic pathway."

"There are two components unique to the extrinsic pathway, tissue factor or factor III, and factor VII. Tissue factor is present in most human cells bound to the cell membrane. The activation process for tissue factor is not entirely clear. Once activated, tissue factor binds rapidly to factor VII which is then activated to form a complex of tissue factor, activated factor VII, calcium, and a phospholipid, and this complex then rapidly activates factor X."

If you're sick of reading this and you're more of a spatial than "pseudo-auditory" learner, click the link below if you want to see an awesome (albeit a little confusing) video on how coagulation takes place in your body. There's a lot of medical jargon, but please do watch all three videos on the Intrinsic, Extrinsic, and Common Pathway to visually grasp the entire process. If you can watch hours and hours of Internet porn, then you can totally take 5 minutes to look at this video.

This is what happens every time you get cut.

So, what does this all mean, you ask?  I guess what I'm trying to say is without Dr. Blood's research, NovoSeven RT (an a lot of other synthetic factor medications) may have never been created.  And you all know Niki lives off of Novo! The sheer importance of FVII's role in the coagulation cascade was perfectly expressed in Dr. Blood's findings. This is why I think the biotech/drug companies took interest in developing in this SPECTACULAR drug. And why Ethan, Niki, and so many other bleeders out there aren't screwed.

Never in a million years would I have ever thought that I would know someone who is so closely related to Dr. Blood. At my Sex Ed class of all places!!!

Ed's wife came to class today to be one of our guest speakers/presenters. What were the odds, right? Sadly, my research from the night before also turned up that Dr. Blood passed away recently. I was thisclose to approaching her so I could offer my condolences and  thank her. (Yes, I realize that I am indeed a little weird for wanting to do that. Lol!

Unfortunately, I chickened out. I didn't want her to think I was a "Hematology groupie". (Lol...If there is such a thing anyway. And if there isn't, don't steal my lingo. Plagiarism is illegal.) :-P

Maybe I'm just reading too much into it, but I took this "blood-sex link" as a small sign that I was meant to do what I'm doing right now. Being a "sex geek" was in my destiny and there was a reason behind why I was selected to be a part of this particular group of SFSI trainees. I know it sounds odd, but I'm a firm believer that God gives us glimpses into our future by sprinkling subtle signs in our daily lives. This was one of them. Did I mention that Ed's presentation had hypospadia as one of the topics when he mentioned who his FIL was?

See, there are signs every where, my friends.

It's irrelevant to talk to Ed about it right now, but I'm working on the gathering the balls to admit that my curiosity got the best of me. Nevertheless, I'm glad that I was able to unearth this sign because it gives me reassurance that things happen for a reason. I'll make sure to share my story with Ed before class is done. I'm hoping that it will offer his wife some comfort because my daughter is a prime example that Dr. Blood really did make a difference in this world.  :)

On another note, this symbolic coincidence has inspired me to do something unique with my newly acquired sexual knowledge. I'm already mentally preparing for a heavily modified "birds and bees" talk with Niki. I've done some homework and I know her sexual future might have quite a few challenges because of her bleeding disorder. So, the fledgling Sex Educator in me would like to do something special to educate the masses on sex and bleeding disorders.

Only time will tell how successful my "bloody sex" talk will be with Niki. :)

Monday, May 17, 2010

Kevin and the Bullies...

Are you enjoying the blog inundation? Well, get ready to quench your thirst because there's still more posts coming your way. This post was written during my lunch hour on my 2nd week of school. Of note: I'm still avoiding "sex geek" friendship like the plague. ;-)

A few weeks ago (actually 4/7/10) John witnessed Kevin getting in trouble for straying away from the group at Park & Rec. The director noticed that Kevin would wander off on his own and hide by the stairs while the rest of the kids played on the blacktop. Straying from the group is pretty dangerous. Being unsupervised could potentially make my first born son more vulnerable if a predator with a fetish for adorable-little-boys-with-dimples were to unexpectedly come on campus.

Then I'd be forced to blow someones head off. So, really? Nobody wins.

Apparently, the director (Mr. C) spoke Kevin about this inherent danger before, but often times he still continued to be a repeat offender. So, when John saw Kev getting in trouble it was because he was reprimanded so many times before. Now, whenever my boy gets in trouble it's "classic Kevin" to clam up. Kev stays quiet out of fear, not defiance. And for some reason the KID never says what the real problem is.

He's sooooo his father's son.

Mr. C is about my height, but with his booming voice and tattoos I imagine he's a pretty intimidating to the Park & Rec kids. I think I could take him. (Lol...I'm TOTALLY kidding of course. He's a really nice guy and I would die if he ever found this blog entry.) But I digress...Mr. C was unsuccessfully trying to get to the root of the problem. He let John know about the issue and asked him to do some investigative work of our own.

John tried to talk to Kev in the car, but he still didn't say a word.

I foresee that John and Kev may have some issues in the future because their communication styles are so alike. Those two tend to deal with their issues internally and you have to be really persistent to figure out what's bugging them. John called me out of exasperation because I suppose they were both being "clammy".

I was at the cemetery tending to Ethan's headstone when my phone rang. At first he was quiet, but after a lot of coercing and questioning, poor Kevin finally broke down and cried. When Kevin's sense of machismo sets in he'll probably hate me for writing this story for all the internet to see. (To that I say, "It's MY blog Future Kevin, so sue me!") Anyway, in between hysteric sobs he somehow managed to tell me that two older boys (a 4th and 5th grader) had been tormenting him for a few weeks. Kevin is a lover, not a fighter and in that retrospect he's my son. Kevin strayed from the pack so he could use the stairs to "hide" from the bullies. Apparently, the older boys were hitting him the face and stomach AND calling him a "bitch" and an "idiot" from time to time. He didn't want to do anything because they were bigger.

Mother. F*ckers.

I conjured up my inner gangster and vowed mafia-style that I would avenge the disrespect that was bestowed upon my first born son. Okay...I didn't do that, but it would have totally cool if I did, huh? No, what I actually did was explain to him that he was just too cool for a 1st grader and that the older boys were just being dumb. I also gave him an anecdotal story about my elementary school bullies (those f*ckers said I had AIDS because I had eczema) and told him to ask his Daddy about what he did about bullies when he was a kid. (I assumed that John would have the fatherly talk about whoopin' ass once we got off the phone.) I also reminded Kev that he was lion and lions roar to reclaim their pride.

Slowly, but surely I stacked up his "confidence blocks" and told him that I'd do my best to make sure that those little shits wouldn't ever knock them down again.

My first instinct was to go to Kevin's school to shake the sh*t out of those little boys for messing with my baby. But the "lover" in me decided that I better not in case I get knocked out by the opposing child's parents. I think we all know it's not a good look to get your ass beat in front of your kid. Later that night, John and I had a "cub conference" and decided that I would talk to Mr. C about what our investigation turned up. (We also discussed the possibility of enrolling Kev in karate when Boo was old enough to be in the same class. So, maybe next year?) The following day, I asked to get off 15 minutes early so I could play a sneak attack on the bullies. I couldn't shake 'em, but there was no harm in giving them the "scary mom stare" before I talked to Mr. C. ;-)

My manager approved my time off and told me in her
British accent to "go slap 'em". Lol!

Kevin was very concerned about being a tattletale and a dork. He didn't want to me to talk to Mr. C, but I reminded him that I'm a "cool mom" so it's impossible for me to have "dorky" kids. He looked a little hesitant, but seemed to understand that I was going to do what I needed to do. Lol...I still can't believe he *thinks* I'm not cool enough for him. Especially because he was wearing this (with a straight face) when I picked him up from school the day of my meeting with Dr. C:

They're "x-ray glasses" that he won for participating
in the school's candy sale. Lol, I swear I wonder about this kid sometimes...

I didn't get to see the bullies that day, but I had a talk with Mr. C and found out that those two particular kids had been a problem for quite some time. In fact, Mr. C even had to set up a conference with one of the kids' parents because he was getting so out of hand. They were bullying a lot of the younger kids. I was relieved that Kevin wasn't being solely targeted. After informing Mr. C about Kevin's concern with being a tattletale, his solution was to pull Kevin from the blacktop and have him hang out in the gym during "blacktop time". I didn't agree with that compromise because I felt that it was teaching Kevin to run away from his problems. I opted to have Kevin make the decision to stay in the gym on a daily basis instead. We (Mr. C, myself, and Kev) were okay with Kevin being the master of his own universe. Kevin agreed to never stray from the pack again.

That still didn't seem like it was enough though. I decided that I would give Kevin a good luck charm so he would always remember his confidence. I improvised and ripped this off of my Simba pen at work. When I gave it to Kevin I explained to him that he should keep it in his pocket. I didn't tell him that it had magical powers, but I told him that it will help him remember that he's a lion whenever he felt too afraid to stick up for himself.

And I said, "And what do lions do when they get mad?"
Kevin shouted, "They roar!!!!

The Lion Charm

Kevin hasn't had any stories about the bullies ever since. Also, it looks like I've got a budding author on my hands. Diary of a Wimpy Kid by Jeff Kinney inspired him to start keeping diary *ahem* journal. So, anytime I need to get dirt on his little life, I can totally violate his privacy and read his journal. (Sorry, Future Kevin. Desperate times call for desperate measures.)

P.S. I finally saw the bullies a few days after my meeting with Mr. C. It's no wonder the were messing with the younger kids. The may have been "upperclassmen", but they were the smallest in their respective peer groups. Perhaps they took the saying "pick on someone your own size" a little too seriously. I totally gave them the "scary mom stare" anyway. ;-)

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Sunday, May 16, 2010

When it Rains, it Pours...

The ER doctor gave me a few days off to stay home and rest, but I ended up spending all of Monday 4/19 at the hospital. I had some appointments with my Allergist and Primary Doctor so they could come up with a better treatment plan for me. I took Boo along to keep me company. He has a blast no matter where I take him.

My lungs suck. I've had my Allergist (I'll call her Dr. S) for close to seven years now and her Medical Assistant is an old friend of mine from junior high "M". While "M" was taking my vitals she told me that Dr. S started the morning by proclaiming, "Oh my gosh, Tiffany almost died this weekend!"

Hello, HIPAA violation!

It's a good thing Dr. S isn't my OBGYN! (Lol, not that my vagina has issues or anything. I keep my pekpek clean thankyouverymuch!) Anyway, I did a spirometry test and it wasn't looking good from what I could see and feel. My lungs still felt very shitty. As soon as Dr. S came in the room she told me that my results were just as bad as they were when my lung collapsed in 2006. Specifically, my FEV1 is less than 50%!


So, Dr. S put me back on all of the medications she had me taking in 2006. Dr. S also insisted that I try a preventative medication called Xolair, but I was on the fence about taking it. I didn't feel well enough to deal with the potential side effects (anaphylaxis, death, blah blah blah) of the injection. In case I changed my mind (which is what she wanted me to do), she had me get some blood work and allergy tests done.

During our appointment, Dr. S sternly reminded me that I "will die" if my asthma doesn't get under better control. I can't make this stuff up, people. Apparently, my anaphylactic reaction was exacerbated even more because my lungs are already so weak. Dr. S thinks a combination of the day's events at the Hemophilia Walk is what landed me in the ER. I was really pushing myself and it caught up to me. (I say it was still worth it!) She stressed to me that I was inches from being intubated (again!) and THAT scared the living daylight out of me. I was in the ICU two times in one week very early into my pregnancy with Niki (she was a fighter even in utero). This was the first "bad episode" I've had since then and Dr. S really made me realize how much I need to take care of myself for the livelihood of my den. If I die the cubs are f-ing screwed.

I'm going stop trying to be Superwoman all the time. ;-)
Boo was able to maintain his good behavior for my entire appointment with Dr. S, but all bets were off once we went to see my Primary Doctor. My wild child was noisily thrashing about on the exam table paper, interrupting the doctor midsentence, and basic showed the doctor that my lion taming skills sucked that day. Our "promise to be good" pep talk rendered moot during that appointment. Once we left that exam room, I was relieved to be done with my day at Kaiser. However, I was not so glad to be on a lovely cocktail of Prednisone 10 day taper, Advair, Flovent, Flonase, Albuterol, Singular, Zyrtec, Omeprazole, and Famitodine.

It's been a month and I STILL hate how my body feels. I'm convinced my that electrolytes are being affected by one of these medications because my muscles feel occasionally tender to touch. Also, I'm constantly feeling fatigued. But if it means I'll live and my asthma will be drastically improved then in all for it. I'll find out what my FEV1 is this Wednesday. :)

Monday 4/19 turned out to be a royal pain in the ass!!! After thinking that our den was finally done with the craziness, Niki's Broviac sprung a leak later that night.
John was administering her factor late because we had a communication breakdown on who was supposed to administer it that day. I slept in that morning so I didn't give her factor because I thought John already did it for me. And he thought that I would do it because I was home sick. Anyway, he was flushing the line with normal saline (the 1st step of factor infusion) when her shirt slowly started to grow a clear pink wet spot. We lifted her shirt and lo and behold she had a hole in her line. Her tubing was starting to look a little stressed in that area, but we never thought that it would actually leak!

The Oakland NICU nurses, Dr. Awesome, and Nurse Richard warned us that it could happen one day, but we never thought it would happen to Niki.

It was 10:00 at night and she had a freaking hole in her line!!!! I think it's pretty safe to say that we panicked. John pulled the line straight so it would temporarily close off the leak. We still needed to administer her factor and get Heparin in the line to prevent clotting. John quickly finished her infusion and then clamped it with one of the thousand emergency clamps that the NICU gave us when Niki was discharged to go home. We then stabilized the clamp by taping against her abdomen.

Meanwhile Niki was totally fine. She's always completely oblivious to the scary stuff.

I contacted the on-call Pedi Hematologist thinking that we would be instructed to go to the ER to get it fixed. My heart dropped when she told me that hardly anyone in Emergency Medicine is properly trained in Broviac repair. In fact, only one doctor in Pedi Hematology can repair Broviacs and that was Dr. Grumpy.

We had no other choice than to wait until morning.

The next morning (Tuesday 4/20) John and I went straight to Dr. Awesome's office hoping for the best. Niki ended up having a high fever (102 degrees) early that morning so it worked out perfectly. No ER trip this time. Thankfully, Dr. Grumpy was able to salvage the Broviac. He snipped off the broken piece and attached a new one on. Then he used a tongue depressor to keep it stable for the next 24 hours while the glue hardened. It's super long now, but we're just glad that she didn't have to get emergency surgery to replace the Broviac completely. It already sucked that her first one needed to be replaced two days after her first Broviac was installed.

I wish I could have taken pictures to show you how it was done, but we were busy holding her down. (It REALLY sucked to do that by the way.) Here's a schematic that I found of how it was repaired.

Niki getting her infusion
Completely oblivious as always.

We thanked Dr. Grumpy profusely after Niki's Broviac was repaired. He was actually very nice and not-so-grumpy during waking hours. After the repair, Dr. Awesome proceeded to address Niki's high fever. She ordered Niki the usual blood culture and 2-day dose of Ceftriaxone in case her Broviac was brewing an infection. The following day I took her to SF Kaiser's Pediatric Infusion Center for her second dose. I caught my first glimpse of her newly repaired line and was impressed that it was still holding up.

Look how long it is!
Watching Barney during her infusion...

She never got an infection and I'm happy to report that her new Broviac is functioning just fine. I was back to work by 4/23. Niki's constantly yanking at her newly elongated line. Needless to say I can't wait until she has her port surgery in August. Her skin is constantly breaking down (and bleeding from scratching) because of Tegaderm we use for her dressing. Hurry up August! It sure was storming around here, but it has finally let up and I can see clearly now the rain is gone.

More blogs to come. :)

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Saturday, May 15, 2010

A Tale of Two Saturdays...

Saturday, April 10, 2010:

John decided that he didn't want to be "beaten by a girl" and went skydiving! Isn't he cute? He's terrified of heights, but he went anyway so he could reclaim his metaphorical testicles back from me. I was mercilessly calling him a "girl" for not going when I went. (I'm mean, I know.) Skydiving was an experience that I wanted to share with him though, you know? After two weeks of enduring my taunts, he finally said "f*ck it" and went with his cousins. Challenging John's manhood works like a charm, I tell you. Just as I suspected, he loved it and we're going together next time.

Mission accomplished. :)

He felt Ethan up there, too.

While John was off being "extreme" with his cousins, I spent my Saturday at UCSF's Mission Center. It was my first day of school and I got a taste of my first 8 hours of sex educator training! I. LOVE. IT. Being in SFSI's Sex Educator program is seriously a dream come true. I heard about the course in the Human Sexuality class I took I was nineteen. I've wanted to do it (no pun intended) ever since and it's so surreal to finally be here.

One more goal crossed off my "bucket list".

Even though I loved every moment of my first day of training, as always I was being a shy-ass and kept mostly to myself. It takes a while for me to get comfortable around new people. Ha, I'm so not a cool kid! It's not that I'm anti-social or snobby (though it can appear that way at first), it's really because I'm  painfully self-conscious. I always always ALWAYS feel like I don't fit in.

So, I stay quiet to spare myself the potential embarrassment.

My classmates and trainers are amazing! They all come from so many different walks of life and educational backgrounds that it makes me feel highly unqualified to be their "peer". I'm surrounded by college professors, sex workers, public health majors, therapists, and health educators.

Dude, I'm just an M.A. and a Mom.

Plus, they all speak so articulately that it makes me feel like a total dumb ass when I listen to them talk. I understand what they're saying, but I just don't feel "smart enough" to respond. AND to top it off I'm convinced that I'm the most "vanilla" person in that room. My life (personal and sex) seems so boring.

I'm seriously fucking impressed and utterly self-conscious at the same time.

Nevertheless as it turned out, sex ed training is not at all the perversion that outsiders might believe it to be. Even though I'm kind of infamous for having my mind in the gutter most of the time, I don't think I'm a pervert just because I'm interested in sex. I prefer to be called a "sex geek" instead. :) I heard that term for the first time on Saturday and it describes people like me perfectly. There is nothing wrong with being geeky when it comes to sex. We all do it, but people just don't talk about it. I have no qualms about "sexy things" (my 26th birthday celebration was at a strip club for godsakes!) and it was mentally stimulating to be with other "sex positive" people.

I didn't have FOUR LITTLE LIONS because I'm frigid. ;-)

Even though I'm admittedly learning about things like fisting, anal, BDSM and the latter, I'm ALSO learning valuable life skills. Communication is HUGE in this training program. In order to be good sex educator you have to be an effective communicator and listener. Sexuality is difficult for most people to openly discuss so there is a lot emphasis on interpersonal communication in our training. All of this training has actually helped me win a few arguments with John. Oh, and I've learned some nifty new bedroom tricks too. Bottom line, I'm really enjoying SFSI's program. :)

Entering the wonderful world of Sex Ed...

I was exhausted from my first 8 hours of training, but I was ecstatic that I would be able to unwind at the Alicia Keys concert later that night. John got me floor seats so I was super excited. Now that I've had the "floor seat experience" I'm convinced that getting floor seats was both a good and bad idea.

The good? I'm now positively convinced that floor seats are ONLY WAY TO GO for any concert that we attend from now on. This was our 2nd Alicia Keys concert and I enjoyed this one a LOT more. I could feel the music pounding through my body and that my friends, is fucking awesome. The crowd's energy is different too. When you're that close to the stage you live in the moment. I found myself completely engulfed in the performance. And I think some other people did too.

In fact, a couple got so horny from Robin Thicke's "Sex Therapy" that they got kicked out for practically having sex right there in their seats. John said he saw her boobs.

The bad? If we don't score floor seats in the future I'm going to compare everything to "the time we got floor seats". The concert was phenomenal. Naturally, I cried like a baby for every "Ethan song" that A. Keys sang. It MOVES ME to hear and feel music/lyrics that are so deeply personal to me. Words can't even describe how much fun I had that night.

From Sex Ed to Sex Therapy...
Here comes Alicia...
Why do iPhones make everything look further away?
The Keep A Child Alive promo came on for "If I Ain't Got You".
I took that as a sign and sent a text to help "keep a child alive" for Ethan. :)
The rest of the arena...
Grainy and ugly, but I still like it.

Saturday, April 17, 2010:

The following Saturday 4/17 was equally eventful thanks to the Hemophilia Walk. :) Our chapter's inaugural walk was a success and I'm so glad that I got involved. I'm happy to report that Team Lucky Factor Seven was offically the top fundraising team! We had the largest "family group" which led me to believe that  it was playfully intimidating to some of the other teams there. Our team stopped to take a picture when a drug company's team member tried to hype up his crowd by yelling his team's as they passed us. After the team stopped cheering, John playfull responded with "Yeah, but we still made the most money though."

Lol...then everyone in our team everyone cheered. So. Bad. ;-)

Team Lucky Factor Seven had a total of 267 donors and raised a little over $11,000 since February. All of this success in memory of Ethan and in support in Niki. :)

BIG thank you to our team members (you rocked it!), donors, walkers, virtual walkers, and everyone else who showed their support for our team that weekend in some way, shape, or form. I saw tons of Facebook status updates and tweets showing support for our team. One of John's cousins even wore her team shirt while she was in Vegas  even though she couldn't participate in the walk. The day was gorgeous and HOT as HELL, but despite the heat I think our team had a lot of fun.

There were also lots of freebies (food, ice cream, water, promotional items) and you know us Filipinos don't complain when it comes to getting free stuff. Lol. ;-)

I'm already looking forward to next year's walk. And I hope that even more people will get involved. John and I were thrilled that our friends and family finally got a taste of what it feels like to be a part of Niki's community. Living with a bleeding disorder isn't always about sickness and stress. There are times when it can be positive too and our little bleeder is surrounded by a wonderful "extended family". She has lots of role models to help guide her through the journey that lay ahead.

I had some awesome pics of the individuals on our team, but I didn't want to post 'em for all the internet to see without asking for permission. So, if you want 'em, message me. :)

Niki's Ninang had this lion made for her.


After the walk we went to celebrate our success with Ethan at Holy Cross. Of course, I took all of the freebies and decorated his headstone with it. We even had his own shirt and medal just like the rest of the cubs.

Later that night I landed myself in the ER. It's the same asthma/anaphylaxis that has landed me in the ICU on a ventilator numerous times before. My symptoms are quick and strong and by the time I got to the ER my oxygen saturation was at 80%. I didn't even know it was possible to stay conscious with 02 that low!!! Luckily, my longtime friend is a nurse in the ER and she knows my health history well. (She's been there for most of my ER trips whether I got there by car or ambulance. She was even on the night Ethan went to the ER.) So, she completely took over my care and made sure the docs were on top of their shit. They gave me magnesium, benadryl, prednisone, and all sorts of other crap that I can't remember because the benadryl and epinephrine had me completely loopy and groggy at the same time.

Poor John, he was totally stressed.

Early in our relationship he would show his panic during my ER visits, but with time and experience he's learned that keeping his cool keeps me grounded. Nevertheless, I always know it's bad whenever I see John slowly blowing out air with his hands on top of his head. Actually, I *almost* got admitted, but after staying for nearly 2 shift changes in the ER, they finally had me stable enough to go home.

I guess John got used to documenting ER visits 'cause I don't even remember taking these pictures.

Before things got really bad...
Awww, someone was feeling emo. ;-)
When the meds wore off and I finally came to, I had all sorts of nifty new apps installed in my phone. So, I guess that was a plus. Another plus? John was super nice to me for the next few days because I was sick. I'm happy to report that I'm doing much better now. There's more to this story so keep checking back.

In the meantime, I hope you enjoyed this Tale of Two Saturdays. :)