Nawlins...

I have a free minute before we head off to the airport. We're on our way to NHF's Annual Meeting in New Orleans. Our flight to leaves at 12:25am. It hasn't been smooth sailing though. Here's a brief list of what's been going on since my last blog entry:

1. Been sick with allergies/upper respiratory issues since last Tuesday.
2. Attended a super fun birthday party for my godson & nephew on Saturday. The night ended with me having an allergic reaction to something I ate. John had to call 911. I was scared for the baby.
3. Spent most of Sunday recovering at home. Happy that I didn't get admitted.
4. Spent my entire day at the doctors office on Monday. Still no answers to what causes my anaphylaxis. Rested most of the day. Baby's movement improved.
5. Tried to get some rest today, but it was virtually impossible. It's raining, and I'm nervous about flying tonight.

Last time I was on an airplane was in 2005. I needed to write to get rid of some of this anxiety. Wish me luck!

Ugly Shoes...

I'm not normally into fashion blog entries, but this post was too good to NOT share! I stumbled on this as I was checking my email. A lot of these shoes reminded me of that one episode from Married with Children where Al Bundy tries to make women's shoes out of men's shoes. LOL, if my memory serves me correctly he used a pencil has a heel on one of them. (Gawd, I miss that show.)

Anyway, enjoy the post. :)

http://shine.yahoo.com/channel/beauty/the-ugliest-shoes-well-ever-2388563/#photoViewer=1

Jagged Edge...

I've been nervously gnawing at my nails for almost an hour. It's a bad habit that I picked up when I was a kid. It helped soothe me whenever I would witness the domestic disturbances that would occasionally erupt in my household. Now as an adult, I still nervously chew on my nails when I'm worried, afraid, stressed, or upset.

And right now, I'm all four of those things.

I'm alone and I need to keep my fingers busy or I'll end up eating my whole hand. So, here I am turning to my therapy again. Trying to write my stress and anxiety away. John left to take Boo to school shortly after we got into the anesthesia room. And I'm really trying hard to NOT freak out.

 On our way down to surgery...

 Bye Bye, Broviac (hopefully!)

Cuddling with Daddy the Anesthesia Procedure Room

I put up a pretty good front. I can keep my cool in front of medical personnel, but truth be told -- I almost cried about a dozen times this morning. I met with the surgeon this morning. We didn't have time to set up a pre-op visit. However, Dr. O was is same surgeon that did Niki's 2nd Broviac installation so I had no doubt about his familiarity with Niki's condition. As it turns out, there is a 50/50 chance that this surgery will be unsuccessful. If her vessel is too small to accept the port, then the doctors sliced and diced her for nothing. This morning was the first time I heard about that possibility. He said she was a bit small for the surgery, but he would try. (Most port surgeries are done between 18-24 months. Niki is barely 17 months.)

If the port doesn't fit then we put her at risk for nothing. And I would feel like total crap.

There have been other issues this week. On Wednesday 7/7,  Niki's INR came back high -- 6.6 to be exact. (That is NOT good -- Niki's INR normally runs between 1-2.) And another issue was her hemoglobin was low at 8.3 so Nurse Richard was thinking she would probably need a blood transfusion prior to surgery if her numbers didn't improve. On Thursday, he had me redraw labs and her INR was 4.4 and her hemoglobin was 8.2. Still not good and not much of a change. A high INR is dangerous, I don't quite understand the mechanics of why it's bad, but I know that high INRs are no bueno. It was unusual for her to have such odd lab values two times in a row. Unfortunately, the Oscar Grant verdict came in on Thursday. So, the nurse covering for Nurse Richard told me not to worry about it --- that it would be addressed when Niki got hospitalized -- and that they would call me the next day to follow up. Well that would have been fine, but the next day was Friday and the downtown Oakland offices were closed because of the verdict. So, no follow up call.

Her high INR and hemoglobin didn't really get addressed until yesterday/this morning.

There was clearly some confusion about the right dose of NovoSeven that Niki needed prior to her surgery. I could see the Anesthesiologist Dr. B getting pissed off at the pharmacy. The anesthesia procedure room is right outside of the nurses station. He was on the phone and all I could hear was that she should have gotten bolus a dose of Novo ordered/administered before she went down to surgery. Her blood was not clot-ready enough for surgery.

So far, they only gave her two doses of 150mcg since she was admitted -- once at 9pm and another at 3am.

We got down to surgery at about 7:15 or so. There was a delay in getting her factor from the pharmacy and Niki was getting increasingly irritable. I tried my best to preoccupy her with my iPhone after John left so I played all sorts of Barney songs and Justin Beiber to keep her happy. After what felt like hours of waiting (but actually turned out to only be another hour), Dr. B finally came in to administer her factor and some Versed.

He administered 300mcg of NovoSeven over the course of 5 minutes. I was surprised that the nurse didn't do it. Then, before he gave her the Versed, he warned me that she would "get floppy pretty quick".

Boy, he wasn't kidding.

One minute she was playing with my fish Pocket Pond app and the next minute she looked up at me with an "I don't like this face" and started to whine. I felt my eyes start to sting with tears. She really looked fucked up. But...just as soon as expressed that she didn't like it, she suddenly switched to an "I like this face". For about a minute it was very scary to see her drugged up, but she almost instantly got used to the "high" and even half-heartedly giggled once. And then, it was slightly funny because Niki thought it was funny.  Even Dr. B laughed a bit at how she was acting. Niki is a determined little girl and she manged to focus her attention back to the Pocket Pond. She drunkenly tried her best to continue to tap away at the koi fish.

She is one tough little cub -- definitely her Daddy's daughter. (I personally hate being drugged!)

High off the Versed...

Less than 5 minutes after the Versed kicked in, the nurse took her out of my arms and whisked her off to have her surgery done. And I felt like crap again. I'm worried. It shouldn't have taken this long. It's been over an hour now and still no word. She went in at 8:20 and it's 10:42 now. Is port surgery supposed to take this long?!?!?!?!?!

I'm worried. I know I said that twice, but I don't care. How would you feel if you were me?

Or maybe I'm just a lunatic Mom for feeling so anxious about her still being in surgery.  Even writing about it isn't doing a thing to help keep me occupied enough.  What if she's bleeding? What if her INR was a problem and the dose wasn't strong enough? What if the port doesn't fit? What if there was a problem with the IV or the anesthesia? So many what ifs that I needed to know answers to 5 seconds ago. What the hell is taking so long??? John keeps calling me asking what's going on and it's making me even more nervous.

My jagged-edged nails are all tore up like I am. Now would be the perfect time to smoke. But I vowed to quit for good after Ethan died so that's not an option either. This sucks. Hoping, praying and worrying all at the same time...

 Give my baby back people!!!!

Memorial Day Weekend...

Memorial Day Weekend 5/28-5/31 - Written Wednesday, June 2, 2010

Niki took another trip to the ER on Friday, May 28th. She had a slight fever in the morning (100.1), but she still appeared to be doing okay. She was playing, eating, and most importantly of all NOT above the temperature threshold (101.5) so as always, I went to work to save my FMLA. At around 6:30pm, John called to tell me that Niki's temperature was 101.9! She was still generally in a good mood (playing and eating), but the poor baby was burning up. I was out running errands so I dropped everything went home immediately.

Off to the ER we went!

We met a completely new group of ER staff when we arrived. No familiar faces at all. Then again, I don't believe we've ever been to the ER for a weekday swing shift either. The nurses were nice, but it also seemed like they were a little confused. I can't blame them though because Niki is kind of a guinea pig anyway. As always, I got asked if I was a nurse. Ugh. I swear, I'm going to have a shirt made that says "No, I am not a nurse." Or perhaps I'll take a moment from my gotta-rush-to-the-ER-panic to change out of my scrubs to avoid being asked every time. Then again, I've been asked if I was a nurse when I wasn't in scrubs so maybe it's the Filipino thing? I don't know. I'm going off on a tangent here but whatever...

After close to an hour of waiting, the ER doctor came in the room as I was talking to my friend who works in CT. She happened to pass by the exam room so we chatted for a few minutes. My friend quickly excused herself when the doctor showed up, but he still seemed a little curt with us. The doc didn't seem very genuine when he played with Niki during the exam, but he was thorough so I appreciated that.

Niki's nurse was very sweet and he tried really hard not to mess anything up. I gave him a break when the nurse came in the exam room with oral Tylenol because he already had it drawn up in a syringe. The doctor didn't even tell me that he was ordering Tylenol. If I knew I would have intervened and asked for a suppository instead. I started to tell the nurse about Niki's puke-tastic history with the ER and oral Tylenol when I noticed that the nurse started to look a little disappointed. So, since Niki wasn't particularly pukey, I told the nurse that we could try to administer it. I hoped that she wouldn't vomit. The nurse looked relieved and mentioned how difficult it was to get an order changed. ( I think the nurse got worried at first because the doctor was kind of a meanie.)

Niki got the Tylenol down alright, but she promptly puked it up a few minutes later. All over my back. All over my hair. All over the floor.  Karma is a bitch and it served me right for doubting my intuition. Never again will I allow oral Tylenol in the ER. Never again!

We cleaned Niki up, but I smelled absolutely rancid. Unfortunately, the hospital stopped providing scrubs to it's employees so I was stuck wearing my puke infused scrubs. The nurse felt really bad so he grabbed some sweats for me from "Lost Patient Clothing/Articles" so I could change. But, since I'm not a fan of potential scabies exposure, I graciously declined. Instead, I opted to use CaviWipes to scrape off the sour milk curds from my clothes and to clean up the floor. There was a hell of a lot of puke.

John held his nose and gagged the entire time -- totally NOT helpful.

Environmental Services eventually came in and mopped up everything that I couldn't reach. The lady scolded me for cleaning up floor, but I felt really bad because Niki made such a huge mess. She reassured me that she had cleaned up worse and reminded me that it was good that Niki threw up. She explained to me in her heavy accent that Niki "vomit out all the sick" so she would feel much better.

And the EVS lady was right.

The redness in her cheeks subsided (Niki's cheeks always get red when she's about to get sick) and she was feeling much better after she "vomit out all the sick". She tolerated to antibiotic (Ceftriaxone) infusion pretty well too. Soon enough, Niki was back to her regular self -- playing, trying to walk the halls of the ER, and eating. Eventually, her blood tests back normal and she was discharged from the ER by 10:30pm.



Before the Puke

After the Puke

Niki was feeling like a million bucks by the morning. Ceftriaxone is the best remedy ever, I swear! We hadn't anticipated that Niki would get sick, but John promised all of the kids (our cubs, my SILs, & his brother's kids) that we would take them to Great America on Saturday. A promise is a promise. Fortunately, Niki woke up on the right side of the bed. She didn't appear sick at all. John decided to take EIGHT youngins to Great America by himself.  I opted to spend some quality time with Niki before we had to go back to the ER at 6pm for her second antibiotic infusion. (There were no clinic appointments since it was the holiday weekend.) I figured that I could handle it on my own.

So, John left for Great America and I set off for Walnut Creek with my Mom & Niki for some retail therapy.

It was a gorgeous day. The sun was out, the breeze was deliciously warm, and Niki was happily enjoying her frozen yogurt in her stroller. She's so good whenever we go shopping that I'm convinced she enjoys retail therapy just as much as I do. We had one hour left before we had to be back in San Francisco for her infusion. We stopped off at Nordstrom's to take a quick peek at the Kids clothes.



Before She Puked...Again!

Just minutes after we stepped off the elevator, as I was holding her in perusing the kids shoe aisles, Niki vomited all over me. Again.

There was milk-yogurt yack all over Niki, my clothes, my hair, and my brand new flats. Worst of all, it was all over the carpet. The world stopped in its tracks as far as I was concerned. A record was screeching somewhere. And, boy was I mortified. My mom hurriedly tried to wipe the puke of me and Niki while I stood there in utter disbelief. The putrid smell of puke quickly wafted up to my nose and I started to feel the vomit seep into my shoes.

Evidently, Nordstom's famous Customer Service Excellence goes out the window when your kid pukes on the floor. The sales woman quickly handed me a dinky box of Kleenex and a small plastic bag before she quickly scurried away to call housekeeping. All of the other clerks just stared as my mom shifted her attention to scooping milk puke off the my shoes and the carpet. I didn't expect them to help me clean up, but I also didn't expect them to stare at us like we were trash either. It felt oh-so-classy to have these sales people sneer at us.

I undressed Niki right there in the shoe aisle (still standing in the very spot she yacked on) and cleaned the both of us off as best I could. I didn't want to track puke through the rest of the store. As I was hurriedly wiping my shoes, some prick teenager took a picture of us (yack and all) with her iPhone. I'm pretty sure that ended up on Twitter. She must have thought I didn't notice and that little bitch was lucky that I was too preoccupied to give her a piece of my mind. What was worse was the Mom stopped with her daughter so she could take the picture. Ugh. Really though? Teach your kid manners people! Nevertheless, there is no time to be upset when you've got bigger fish to fry.

And my "fish" was a hell of a lot of yack.

After what seemed like ages we finally made it into the bathroom/breastfeeding area. Niki was attracting quite a bit of attention as I wiped her body down in the Ladies Room. People were curiously starting at her Broviac, but no one dared to say anything. The ladies crowded around kept commenting on how "precious" she was, but that was all. I knew they wanted to ask what her Broviac was for, but no one did. I can understand why people would be hesitant to ask, but I honestly have more respect for people if they would just ask me whatever question is burning in their minds. Frankly, I think it's ruder to pretend that you don't see anything unusual. They were being nice, but they just couldn't hide the "oh my god what the hell is that" look in their eyes.

Again, I had bigger fish to fry.

I still had puke all over me so I dressed up Niki was quickly as I could and handed her off to my mom so I could change. Thank God my mom was there or I would have been fucked. While all of this was going on Niki was still playing and being completely oblivious to the fact that she just stunk up all of Nordstrom's Kids section.  I washed puke remnants out of my hair, put on my mom's sweater, scooped out the yack in my shoes, and jetted out of Nordstrom in lightning speed. The puke was all cleaned up (and smell free) by the time we got out there.

We spent the rest of the evening at Kaiser ER getting Niki's infusion. I ended up running late because of the puke incident so I had to go there puke-clothed and all. Luckily, John got back from Great America relatively quick so he brought me some clean clothes to change into. There was a completely new set of staff was working that night and they moved slower than molasses. Her doctor was great, but the nurse was lagging. We were just supposed to go there for the infusion, but ended up getting out of the ER close to 10:30! For a 15 minute infusion!!!



The Party Was NOT in the ER

Niki playing with a balloon I got her.

Niki's fever came back later that night, but because her blood cultures came back negative we were able to give her some Tylenol suppositories to help with her fever. We spent rest of Memorial Day Weekend (Sunday & Monday) indoors waiting for Niki to get better. And I ended up getting sick too! Niki's puke must have exposed me to whatever bug was affecting her. I was so exhausted from the back-to-back ER visits that my pregnant ass stayed in bed with her all day Sunday. I was feeling well enough to visit Ethan on Monday, but since Niki and I were both still felt icky, I called in sick on Tuesday.

And that my friends was our Memorial Day Weekend! We go to the ER so much that I'm starting a new label for these "mini-vacays".

Bad Blogger...

I'm such a damn liar, huh?

I swore up and down that I would be better about posting in June, but I totally broke my promise. The den has been nuts these past few weeks. So much to write about, but so little time to write. My Blogger app decided to crap out on me which has made it even harder for me to post. Nevertheless, if you're interested in what's going on in my world you can always stalk follow me on Twitter. Mike Shinoda (from Linkin Park duh!) once famously tweeted that Twitter is his blog's "bitch". Well, Twitter is my blog's bitch too....sorta. (Don't mind the occasional pointless banter that goes on there.)

What a bad blogger I've been! Bad bad bad! (*slaps self on wrist*)

It's not that I haven't been writing. On the contrary, I've been writing feverishly --more than I've ever written before. I just don't have time to play proofreader, that's all. It's been invigorating to write this much, but I don't want to look like a dang fool by prematurely posting my blog entries sans spellcheck. And I'm writing "for two" now. (More on that later.) It's hard to keep up with our busy ass lifestyle. So much has gone on this month and I'll be posting those entries soon. In the meantime, here's a sneak peek on the blogs coming ahead...

- Niki's Memorial Day Weekend
- Kev's Growing Up
- Tilden Park Photo Essay/Review
- Carnival with the Cubs Photo Essay/Review
- Niki's Hospitalization
- Birthday Weekend
- Miscellaneous Updates

See, told you I've got tons to tell you about! It's a damn shame that Fireball 2 is making me the laziest and sickest girl ever. All of the medical madness and my pregnancy-induced pseudo narcolepsy is lovely an all, but I need to get this blog back in the swing of things.

Bare with me, okay? Keep checking back.

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!

Fail.

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 by...me. :)



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.

Easter...

Today at work I nonchalantly asked my co-worker what she had planned for Easter Sunday.

She responded by telling me that she had nothing planned because she doesn't "do all that". Keep in mind that she is Catholic so her response caught me off guard. The wanna-be journalist in me decided to delve a little deeper so I asked a few follow up questions. My co-worker elaborated further by explaining to me that while she celebrates the "Catholic part" of Easter (i.e. The Resurrection, Good Friday, etc), she refuses to participate in pagan portion of the holiday (i.e. Easter Eggs, egg hunts, Easter Bunny). So, I thought about it for a second and agreed because she is absolutely right. Some portions of the Easter holiday just don't make any damn sense.

I blame Hallmark. And Pagans. Oh, and let's throw in the chocolate companies for good measure. ;-)

Now I'm no expert, but after that conversation I have to agree that (for certain holidays) the lines between Chrisitanity and Paganism have been blurred together so much that it's hard to differentiate between the two. Like really, what the hell do eggs shooting out of a rabbit's ass have to do with Jesus? However, when I was younger I attended Easter egg hunts and begged my mom to spring the cash (no pun intended) so I could take jacked up pictures with the Easter Bunny. Thanks a lot Hallmark and chocolate companies for confusing me at an early age.

But...I don't blame chocolate too much because it's delicious. (Mmmmm....chocolate. Shh, don't tell Hallmark or the Pagans that my "blame finger" isn't pointed equally!)

But I digress, my coworker was trying to have a serious conversation with me, but let's face it...I can't hold a serious conversation very long. So, I proceeded to agree with her and brought up the fact that the... rabbit?... bunny?... rodent?...whatever the hell it wants to be called.... is the LEAST APPROPRIATE animal to represent the holiday. Isn't the rabbit the most promiscuous out of all of God's creatures?

Why did they (the Pagans, chocolate companies, Hallmark...whoever!) select the biggest whore in the animal kingdom to be Easter's "mascot"?! Oh, the irony.

After I made that declaration, my co-worker abandoned ship (so to speak) and the conversation changed from her sharing the Gospel with me to being focused on my crazy, random -- dare I say it-- perverted perception of the world. Life shouldn't be any other way. :-)Now, while there is a wealth of information about the origin of Easter traditions, Paganism, and Catholicism at my fingertips (readily available for linking), I'm way too lazy to educate the masses today. So please, take this post as PURE SATIRE and leave it at that.

In other news, I think my old blogging ways are making a comeback. Thank you 13,0000 feet!!! ;-)

Monday...

This past Monday was quite eventful.

Niki had her monthly check up with Dr. Awesome. As usual (Thank GOD!) her visit was uneventful. At this appointment we discussed Niki's port surgery and the recent INR/laboratory woes. It looks like her surgery is definitely going to happen in August when she turns 18 months. We don't know how much longer this Broviac is going to hold out especially since she keeps tugging at it. Port surgery is a MUST as soon as possible.

Keep in mind that I was supposed to re-enter the Rad Tech program in July.

So, with this latest development I had to rescind my re-entrance into school. John and I had a very lengthy discussion about my decision before I made the call to my Program Director. It was a very difficult decision to make (especially since I worked to hard to reach that educational threshold), but when push comes to shove Niki's health (and good health insurance) comes first. My employment situation hasn't changed (I'm still working full time) which means I would have similar issues getting ample accommodation to attend clinicals.

My education must be put on hiatus until Niki's condition is more stable.

It's a shame because I even held onto my books and self-studied, but school will always be there. If I'm having difficulty getting things to work out, there must be a good reason behind it. Or, at least that's what I've been telling myself to cheer me up. Nevertheless, I'm still very bummed that I can't finish what I've started.

Serves me right for doing things backwards.

I was feeling very low on Monday, but luckily I was supposed to meet with my friend K for Happy Hour. We've been best friends for over 20 years. I know that she can always cheer me up no matter how low I'm feeling. And as always, she delivered. She asked me to be her Maid of Honor for her destination wedding in Hawaii next year!!!!! I was very honored, buzzed, and teary all at the same time.

That was the best Monday I've ever had. :)

P.S. My awesome Monday was just followed by the most awesome Saturday...ever! I witnessed Niki's first steps at 10:00 this evening. She was standing on the bed and just started walking toward John. I can't wait for the "Future Kings" to see their baby sister walk. :)

Totally Random Saturday...

This past Saturday consisted of total randomness. I participated in an art show that was sandwiched in between a trip to a "candy shoppe" and "sake bomb" central. See, told you it was random!

Onto the update...

My SIL turned 16 last week so her birthday party was just this past Saturday 3/20/10. It was a candy shoppe theme because --duh-- it was her "Sweet Sixteen". I did a lot of internet research to put this party together. The party was very budget friendly thanks to the blogosphere, tutorials on Martha Stewart, google, various dollar spots, and my 6th grade-induced obsession with gumdrops! I was dying to make a bridge or DNA instead of a candy wreath. Here are a few pictures for your viewing pleasure.

The mini cheesecakes were courtesy of my friend M (owner) of Tiny Treats. She also did Niki's party. Check her out here.

Unfortunately, I spent a majority of the party making some last minute touches on my piece for my friend's art benefit. So, my actual interaction with the "candy shoppe patrons" was limited. Contributing to the art show was very intimidating since the other participants were "real artists" with MFAs and everything. This of course meant that I experienced a heightened level of self-criticism when it came to my piece. It was totally nerve-wrecking to watch people stare and analyze my creation. (Which was really just Niki's tea tree with symbolic stuff added onto it.) I'm sooo NOT the artsy girl from She's All That. Nevertheless, it was an eye-opening experience and making the piece was very therapeutic. I even got a business card out of it. Not that I'm going to call the person or anything.;)

This was almost taller than me!

"Communion" at the "Sin Eater Cafe"

The dolphin woman/sin eater (it was kind of creepy looking, no?)

You can't really see it in the picture, but all of the art show attendees were pushed into "dream land" on a bed. Pretty creative, huh? We were enjoying the art show when I received a "random" text message. It was an invite to have cocktails with John's girl cousins and cousin-in-law! :) After having very little sleep/food/rest from the party/art show prep, that invitation couldn't have come at a better time. Even though she was probably exhausted from the party, my MIL was gracious enough to watch the cubs so I could unwind. She's a saint, I'm telling you. :) I was able to close my random day with a tons-o-fun over slew of sake bombs, good music, an unexpected trip on the GG Bridge, and a brief lock out from the house. I would have took pictures, but my phone died. Stole this pic from FB. (Thanks, Eener!)


Yum!

Crafting...

I've always loved creating things.

As a student, I always took great pleasure in any school assignment that involved "making stuff". I took great pride in the man hours I put in for soooo many assignments -- shoebox dioramas in elementary school, science project displays in junior high, group project posters in high school, presentation boards on Oral Sex in college (my teacher kept my visual aids...true story), and so forth.

The minute I'd have something to create, the rest of the world stopped and all that existed was the project that I'd have on hand.

Growing up, I was notorious for being a bit of a "tweeker" when it came to finishing any crafting project that I started. It didn't matter if it was for school or leisure either. I used to borrow mounds of books from the library (before the beauty of the internet) so I could try various crafting projects. I was a total dweeb, I know. One summer (when I was about 10 years old) I gained infamy for staying awake for nearly 48 hours sewing dolls out of my Mom's discarded scarves, robes, hosiery, and even underwear. My Mom must have thought I was on crack.

And yes you heard me correctly, I've made dolls/doll clothes out of my mom's silky panties.

John told me recently that he thinks my creativity sprung from being "ghetto" underprivileged. And I quote, "You didn't have sh*t, so you had to get creative with what you got". And that my friends, was so true! Barbie clothes were expensive, so my sister and I would have an unspoken "craft battle" to see who made the best outfits. My niece was still a wee little one during those long summers (we're only 7 years apart), but even she remembers the time I made a silky blue/black lace "Southern Bell" dress complete with a wire hanger hoop skirt from an old nightgown. (Demi: If you're reading this, please comment to confirm that the dress was the BOMB! Sooooo wish I saved it for Niki.)

Eat your heart out, Scarlett O'Hara!

To this day, I turn into a tenacious lunatic whenever I need to make something out of nothing and/or have a simple vision that needs to come to life. To John's dismay, I even completely commandeer school assignments that people ask me for help with. (Demi, do you remember the gumdrop school bus? Or the Flounder drawing?) You should see me when the boy cubs have crafty "school stuff" that needs to be done. Aside from reading/writing, I also used to watercolor and sketch to calm myself down. Growing up with nothing served me well.

As I ventured off into adulthood, creativity turned into something both stressful and therapeutic at the same time.

Mommyhood completely dissipated my ability to watercolor, draw, or even read in peace, so in more recent times, my creative itch has been soothed with party planning and *sometimes* scrapbooking. Even decorating Ethan's headstone brings me joy. It's one of the few things I have to look forward to. However, I'm also an anal perfectionist. This is not a good combination, my friends. And to add more craziness to the mix, I'm also painfully critical of my own work. I don't usually feel like I did a "good job" -- even when people tell me that I did "good".

There is always something that doesn't quite appease me -- bows aren't straight enough, stickers are crooked, Ethan's flowers don't look right, things are off center....

I turn into a drill Sergeant, Martha Stewart-esque, pain the ass when I have to get help from people too! John says I function like I'm operating a sweatshop whenever I need his help with the cubs' parties because I always bite off more than I can chew. And for the record, to my dismay the party budget he gives me sucks so I have to get reaaaaallll creative to cut costs. This only adds to my irritability so perhaps I do indeed treat him like a slave to get back at him. LOL! As stressful as crafting is, I can't think of anything that I love more than creating memories, emotions, and moments that will last a life time.

I will be entering a blog hiatus until I'm done with my art installation piece and SIL's Sweet 16 party for this Saturday. Tahoe pictures will be posted soon, though. :)

99 Cents....

99 cents is chump change in the real world. You can't buy much for a buck these days which is why dollar stores make millions -- maybe even billions. Lol, I don't know exact figures 'cause I didn't google it, but you get the point. 99 cents is cheap!

Me personally? Any deal for 99 cents is my weakness. It's hard to pass up.

With that being said, I can't begin to fathom why 99 cents seems so damn expensive in the virtual world. Suddenly 99 cents is too rich for my blood when it comes to buying iPhone apps.

There is a wonderful plethora of apps that I drool over, but I'd never spring the money for.

What the eff?! And the apps for $1.99? Forget about it. I dont even bother to look at those. Oh iPhone, you've been a blessing and a curse at the same time!

I told John that I wanted an "iPhone line of credit" since 99 cents suddenly seems too rich for his blood too! The iTunes account is linked up to his credit card so convincing him to let me buy Sims3 for $6.99 makes me feel like I'm asking him to buy me a Corvette!

But $6.99 isn't much in real life.

We're not tight wads (Niki has Gucci shoes for crying out loud so "all that glitters" went out the window with that purchase), but it seems like a hell of a lot to pay 99 cents for some binary code. Lol... I really don't get it.

Are we alone in feeling this way? I think not!

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INR...

I'm on my way to Tahoe so I figured now would be the perfect time to post a quick blog update.

Can you tell that I'm really lovin' this iPhone and Blogger app?

This week has been particularly stressful so our mini vacay couldn't have come at a better time. This is our very first road trip with all of the cubs so I'm not too happy that it's raining like crazy. This weather has me apprehensive despite the fact that this big black monster truck bus that we call our "family car" is set up to completely withstand any snow storm sans chains.

Nevertheless, I'm terrifed of getting stuck in a snow storm or worse, getting into an accident!

So, because I'm a little paranoid, we have tons of food/water/blankets in the car, Niki is wearing her Medic Alert, the boys are strapped in super tight, and I told John we'll just have to eat him if we end up get lost in the mountains. Lol! ;)

But I digress...

This week has been stressful because Niki's INR has been crazy. I can't link educational stuff right now, but her INR is important. It's a blood test that we draw once a month to help Dr. Awesome determine whether or not Niki's prophy dose needs to be adjusted. When Niki was first born they monitored her INR a few times a day in the NICU. When Niki came home from the hospital we drew her labs at the trough end of her factor schedule (at the same time) every week. Then we did them biweekly. As Niki's condition became more stable Dr. Awesome slowly allowed us the luxury of performing blood draws once a month.

Her range is supposed to be between 1-3, but she was at 7 on Tuesday!

An INR that high is life threatening folks! Nurse Richard immediately called us to perform another lab draw the following day because surely it HAD to be a mistake from the lab. (Niki's INR is usually in the 1-2 range.)

The following day her INR was 9!!!

Something was screwy with the lab because there no way that we could have possibly messed up on TWO lab draws. Nurse Richard and Dr. Awesome agreed, but nevertheless they had to make sure Niki didn't develop an inhibitor. That could also be why her INR was high.

To put it lightly, inhibitors suck.

It makes managing a bleeding disorder extremely difficult because patients basically develop something in their blood that "eats up" their missing factor. So, once someone with an inhibitor is infused with their missing respective factor it's not as effective to aid in clotting. An inhibitor would be bad news for Niki because NovoSeven was created for people with inhibitors.

Treatment options would be very limited if Niki developed an inhibitor and we were utterly horrified with the idea of it.

Unfortunately, there isn't very much documentation about FVII inhibitors because the disorder is so rare. So, she would have to be a guinea pig all over again. This morning we did another lab draw to see if the two high INRs were indeed correct. We took the sample to a different lab this time and Dr. Awesome also had a separate sample sent by taxi to a special labratory (outside of the Kaiser network) in Oakland.

We held our breath and hoped for the best.

We just got her results two hours ago and her INR was 2!!! Whew! Nurse Richard and did some investigative work and figured out that the tube that we use to discard the first 2ml of Heparinized blood in her line also a bit of Heparin (a blood thinner) in the preservative. This means that a tiny bit of Heparin was getting in the "clean sample tube" thus altering the results. Once he figured out the problem we all breathed a huge sigh of relief. Our Tahoe trip was back on and Niki was just fine.

I'm now looking forward to a weekend of relaxation with hopefully no need to eat John in the near future. ;-P


This weather is nuts, but of course the cubs are completely oblivious.



- Posted using BlogPress from my iPhone