Like a Rubber Ball.

So I started this post last night before I went to sleep and when I came back to it things had changed so much that I had to throw out the old one and start again. I won't give you a play-by-play of this week, partly because I've been running fevers and there are parts that are a bit blurred, partly because I've been on an intravenous dilauded pump that gives me .4mg every time I hit the button, and mostly because it will bore you. So let me tell you where we are today.

The infection in my lower abdomen is gone. My belly is still a little sore and a little fatter than I remember it being, but otherwise, back to normal. So that's alright. Except the fevers haven't gone away completely and they think that I have pneumonia.

In the last 24 hours, my condition has gone from scary and uncertain to stable and steadily improving. Last night I was on 100% oxygen by non-rebreather mask and my arterial blood gas readings were still showing a drop in the oxygen in my blood. They were getting constantly closer to having to intubate me and put me in a ventilator. Instead they tried a PH drug called Flolan or epoprostenol. When inhaled, it works to dilate the blood vessels that it can get to, so with the pneumonia blocking a portion of my lung, this drug is working to maximize the potential of the remainder of my lung tissue. Usually this this drug is given by way of a constant subcutaneous infusion pump, but they wanted a concentrated rather than systemic effect, so I've got an awful, heavy, awkward mask on that I might be able to take off for more than ten seconds sometime tomorrow. But it's working! I'm down to only 40% oxygen and my blood gasses are looking great. I have a PICC line and a direct arterial line so that they can take blood gasses frequently without needing to keep stabbing me. It's nice being stick-free. By Sunday my veins had become so inflamed that they weren't able to get a line in one at all and they tried everywhere; I had an intra-juggular IV for about ten minutes before it just failed

They're not actually sure if this is a pneumonia. It could be also be inflammation of my lung tissues. There are several big problems standing in the way of us figuring out the answer to that question. The first is that they would need to do a bronchoscopy. I'm not breathing well enough for bronchoscopy without a ventilator, which can be very dangerous and difficult to get off of, so that's not an option.

The second complication is that they've discovered that the small a hole in my heart that's been there my whole life has now started shunting deoxygenated blood from my right atrium to mix with oxygenated blood in the left, lowering the oxygen concentration for the entire combined volume of blood. This was apparently caused by the pressure in my heart becoming high enough that it further opened the small PFO that was there, and formed the shunt. The PFO can't be fixed now though. If they repaired the damage and blocked the hole, the blood would go back into my lungs at a high enough pressure to do some real damage.

So since they can't truly assess what the real problem is and because they can't repair the damage to my heart yet they're attacking it from three sides: the Flolan to open up my airways and decrease the pressure of the shunt, intravenous antibiotics for the possible pneumonia, and prednisone for the inflammation. I'm also on IV heparin to maintain anticoagulation, IV dilauded, self-administered up to once every ten minutes, for pain, IV zofran for nausea, and all of my regular pills.

So that's it for now, I'm going to go take a nap The doctor just informed me that because I'm down to only needing 40% oxygen they're going to start weaning me off of the Flolan and I may be done with this damn mask sooner than we'd thought. Yay!


quick update

So today's deal -comparing the CT from Tuesday to yesterday's - shows that the pneumonia is a little bigger and there's more fluid in my lungs. My ABG isn't going up with as much oxygen as they can throw at me, so they think there's a shunt. And today I'm having an echo with a bubble test to determine whether my formerly nobigproblem PFO could be the big problem. The possibility that I'll need to be intubated is still very real. No fevers though! Alright, I'm gonna try to sleep some more. Just wanted to give you an update.



I'm getting the feeling that describing a fever is a bit like describing an acid trip. Everyone would be bored. So I won't, but let me just say Whoa! My fever spiked again tonight a bit before midnight, went well above 102, and just broke a half an hour ago. It was like coming back from a different planet to one where I'm suddenly cold and drenched in sweat and sprouting thirty different wires.

I'm going to try to sleep now, get some rest before this place starts buzzin'. I'll try to write more later.


Joy of joys

I have a fever of 102.2F, my belly is tight and bloated, it aches, and it's getting more difficult to breathe.

This sucks! We played it super-safe to avoid ovarian hyperstimulation ayndrome, but apparently not safe enough.

They want me to go to HUP to be evaluated, but of course it's rush hour and getting there would take an hour and a half or more. In addition to that, there's no way I trust myself to drive right now, the fever's got me all shaky, I can't take a full breath, and sitting upright hurts. So I'm waiting for BF to come home from work and give me a ride to my usual hospital back near where we lived before.

And I can't find my godforsaken pulse oximeter, so I can't test the oxygen in my blood. My lips are feeling rather tingly though, and that's never a good sign.

This really, really, really fucking sucks.



Well, I feel like crap.  A whole different kind of crap today than yesterday or last week.  My belly is huge.  It feels like it's been inflated like a balloon.  They warned me that this could happen.  Apparently after they empty out the ovarian follicles, they fill back up with fluid and blood.  There's also a fair amount of cramping involved.  Sucks.  

Anyway, I got a call this afternoon and six of the sixteen embryos were successfully fertilized and frozen today.  One more did get fertilized, but two sperm got in and that's just twenty-three too many chromosomes for a viable little embryo to have, so it was a no-go.  

I'm going in on Monday to talk to Dr. G. about removing an ovary for cryopreservation.  And that's it.  No more fertility drugs.  No more waiting.  Until the transplant is over, I don't need to spend any more time worrying about procreation.  Thank freaking god.  I'm sick of it.  It's going to be so nice to stop worrying about this and start worrying about...shit...chemo.  

Well it never stops, right?



I'm in no small amount of pain after the egg retrieval this morning, so I'll be brief.

It was more successful than we'd even dared to hope. They retrieved sixteen eggs, meaning we got an egg from nearly every follicle they measured on Monday. Amazing, really. One of the top retrievals that they've ever had at this clinic.

Tomorrow, I'll know how many are fertilized and will be frozen. And now, my sweet boyfriend is back with my chicken nuggets and vanilla milkshake. If only Chik-fil-a offered an "add a shot of morphine" option.


Forty Sticks in Fifteen Days...

But I'm Done!

Not really.  I get to take Lovenox twice more before the retrieval Wednesday morning and BF gets to give me my Novarel trigger in an hour and a half, but that's pretty damn close to done.  I've never been so happy to be through with something in my whole life.  Those things didn't hurt Day One, but Jesus Christ!  By last night I was hesitating to pierce my skin because they hurt so bad.  Also, every single little puncture wound bleeds for what feels like forever now because of the injectable anticoagulant.  I made the mistake of wearing a light yellow shirt on Saturday and ended up scrubbing a dozen little blood stains (and a couple big ones) off of it with a toothbrush in the bathroom sink (shirt is now perfect and stain removal is strangely gratifying).   

Okay, that's it for now.  Just had to show someone my poor bruised belly.  Not as bad as it could've been judging by that first stick, but generally aggravating.  I wish that was the worst of it, but I couldn't work up the nerve to ask the ultrasound tech for a picture of my humongous ovaries for my blog.  


Nothing As It Seems

I just got back from yet another trip downtown for yet another ultrasound.   My ovaries are so freakin' huge.  They hurt now.  It sucks. 

The good news is that I've now got seven follicles on the right side and six on the left, Thirteen! Much better odds.  Even my nurse expressed how pleased she was with the increase in number.  And my uterus is looking great - a perfect state for transferring embryos.  If only that's what we were doing.  But it bodes well for a successful transfer once we're ready for that, if we're ever ready for that.  Have I mentioned how much a really really really want to get pregnant, like myself, without having to use a surrogate? Well, I do.  And this whole process has only increased that desire.  Now, I just have to talk BF into having more than one kid, but we'll cross that bridge when we get to it.   

The crappy news? While the number has gone up, the size is still only creeping up and they're not ready for the retrieval that we had anticipated would happen on Sunday.  So now it becomes a day-to-day thing.  I have a 20mg syringe of Lupron sitting in my fridge waiting for the word to go ahead and trigger, but until that comes it's Gonal-F, ganirelix, Menopur, and Lovenox along with daily blood work and ultrasounds.  I forgot to mention the Menopur!  I got a call from my nurse yesterday afternoon, around two, telling me that I had to go back down to the office to pick up a new drug, Menopur, which will help to elevate my LH level and produce better quality eggs.  At the time I was at the local hospital waiting to get an x-ray on my foot to evaluate for a possible broken toe (I don't know what I did, but it hurts like hell and is nice and purple) after which we were going to an appointment for BF to be evaluated for eye surgery to correct his nearsightedness.  We had to rush to drive all the way back to University City and then back past our house to King of Prussia.  We did it, getting to the eye doctor's office just five minutes late for his four o'clock appointment.  

So that's my current insane situation.  I'm going to go try to take a nap before my math test this afternoon.  Then, we're going to see Eddie Vedder tonight!  I'm so excited, it's going to be lots of fun!  But now, I sleep.


...from the University of Pennsylvania Bookstore.

It's awesome that all of the college bookstores in Philly are run by B&N now. Certainly makes them more useful and the ability to have a vanilla latte while shopping for algebra books is rather pleasant.

I just had my third ultrasound - nine follicles on my left ovary, five on the right. Yay! The fellow who did the ultrasound said that she thinks it calls for another day of elevated stimulation and another ultrasound tomorrow morning and then I should be ready for either the Ovidrel or Lupron (up to Dr. G.) tomorrow night and egg retrieval Sunday. Very Exciting!

So I just thought I'd give a quick update while I'm sitting here. BF is at a VM Ware discussion group nearby that should let out in a few minutes. We got to drive down here together today; it was nice to have the company (sorry but LM is not a great conversationalist: if he's not tellingcme how to drive, he's either whispering to himself or ignoring me). Now we're going to go get some brunch and then go enjoy this overcast, humid, almost chilly, glorious summer day!
Mobile Blogging from here.


The State of Affairs.

I had my second ultrasound today.  It went much easier than the last time.  The key to this ease: I decided that it would be less tiresome to wake up earlier than to drag the four-year old in to the city with me.  I was out of the house by seven, at UPenn by eight, and home by nine-thirty.  BF had to go into work an hour late, but LM didn't have to suffer through getting drug out of bed early only to have to sit and wait and be quiet.

It was an insane drive downtown and I'm really glad LM wasn't in the car.  It was spitting when I got into the car, but as soon as I pulled out of our driveway it started pouring.  As I got on I-76 the sky went from cloudy to slate gray and by the time I was close to the city I could see bolts of lightning crackling through the Philadelphia skyline.  As I got off and pulled onto Market Street, what I thought was bad became drastically worse.  The light said eight at night rather than eight in the morning and the deluge was nearly too much for my wipers to take.  I silently thanked whatever higher power there may be that the doctor's office has a connected parking garage as I watched people's umbrellas flip inside out while they struggled down the street, completely drenched.  

Once inside, things went as smoothly as I could have possibly hoped for.  I checked in at the office, went down to the lab where I sat for all of half a second before being called back for my blood draw.  As soon as I got back upstairs, my fabulous nurse was waiting and took me right back for my ultrasound.  My follicle counts aren't very high, five around twelve millimeters on my left ovary, four around the same size on the right side.  The nurse said that that's what they expected since they were trying to play it safe so as to not induce OHSS.  I'd be lying if I said I wasn't a little disappointed by the count.  It really limits my options after retrieval.  I had hoped that we'd get enough to be able to freeze a few unfertilized eggs in addition to the embryos, but the doc said to assume that we'll only get half as many eggs as follicles and half as many embryos as eggs.  I know that it only takes one to have a baby, but I don't get a second go at this.   I'm going to try not to worry about it though.  I know it won't help anything and that it's out of my hands anyway.  We can't afford to repeat the IVF if it doesn't work and we won't even know if it fails until I'm sterile.  I also don't want to sound all gloom and doom because I'm not.  All other signs show that there shouldn't be anything wrong with the number or quality of my eggs and BF is equally fertile, so maybe we'll get more eggs than expected, maybe more will fertilize, maybe the embryos will all be fabulous.  Also, if that doesn't go my way, maybe they'll be able to successfully develop eggs from the ovarian tissue that we're freezing and then there's always that very, very slight chance that I won't be sterile after the stem cell transplant and I could get pregnant naturally.  

And on that note... I've decided to forego tubal ligation.  Surprisingly, it was my dad's concern that made me start thinking about finding another option.  While we were standing in line to ride a roller coaster at Hershey Park, he asked whether or not I had to do it or if it was a choice I was making.  I've always been really close with my dad and I always weight his opinions and concerns heavily.  This time, it was really the tone of his voice and the look he gave me that made me think that I might want to give this one some more thought.  So I thought a bit and when Dr. G. asked me during my Day One ultrasound whether or not I still wanted to do it I said I wanted to reexamine my options.  She said that she was relieved that I said that because she didn't think sterilization was the best option for me.  I had decided on tubal ligation because I thought that there weren't any other roads open for me.  Every gynecologist that I went to was reluctant to give me any of the hormonal forms or an IUD because they weren't comfortable enough with my illnesses or medications and I don't feel comfortable enough using barrier methods by themselves.  Dr. G. said that she has no problems with giving me the Mirena IUC and that she'll be glad to do that instead of the ligation.  Now my only problem is that my HMO doesn't currently cover Mirena.  I don't think that is going to be a big problem though because they'll pay for the Copper-T IUD and there are definite medical reasons that I can't get that one and that Mirena is the better choice for me, so I'll just have to apply for pre-approval and then appeal it if they deny me coverage.

Alrighty then, not much else going on, not much else to say.  Just taking things day by day, doing what needs to be done.  I haven't noticed any serious side-effects from the hormones yet, so we'll see how things go.  At this point we're looking at egg retrieval on Friday or Saturday.  Exciting!


The School Issue.

When I was seven, my parents separated.   Luckily neither of them actually went very far.  They lived in the same school district, just a few blocks from one another.  This eliminated lots of potential issues.  Neither parent had to be "the weekend parent" or the "weekday parent."  If a book or shirt or school project was left behind at the other parents' house, it wasn't a massive undertaking to retrieve said item.  But my parents were by no means typical when it comes to shared custody.  We went on family vacations together, each was always friendly with the other, welcome in each other's homes, at holidays, etc.

Our own custodial situation is a bit different, though we have managed to maintain a good degree of friendliness and amicability, sharing birthdays, dinners, etc.  Location is the biggest difference.  BF and I have remained in the same general area that he and his ex lived in pre-divorce, in fact, we're seriously considering moving back into the home that BF and his ex purchased together (yeah, I thought they sold it too, I'll explain later).  However, LM's mom has no intention of living in the suburbs; she's decided to become a city dweller.  She's living in the 'burbs now, but isn't pleased with that and is planning on moving before LM enters kindergarten.  This leaves us in a bit of a quandary.  We already live in different school districts a good distance from one another and when she moves it will be about a forty-five minute drive between us.  So, it doesn't really seem to make much sense for either parent to have such a long drive to get the kid to and from school for half of the week.

As a result of all of this, we've been looking at private schools.  The problem is that while were solidly middle-class, we can't afford to pay $20k a year for elementary school.  In addition to that $20k a YEAR for ELEMENTARY SCHOOL!!!  I'm morally opposed to the utter ridiculousness of that.  I didn't even pay $20k a year for college!  So we've found some Montessori schools that fall into the "affordable" category, but we still have some reservations about the amount of academic success that they are going to provide and the school that we like does seem a bit run down.  

The other option that we've uncovered seems like a real gem.  It's only $4k a year.  It's a National Blue Ribbon School.  It's Middle States Accredited.  All of the teachers are state accredited and participate in Act 48, which requires that teachers get additional education every few years to keep up-to-date with the latest teaching methods.  In addition to that, this school is in an ideal location for both of us to get him there easily.  Lots of plusses, right?

Well, there's one big problem.  It's a Catholic school.  None of this little boys parents are down with JC, let alone the Catholic Church.  In fact, I would definitely say that we're at the opposite end of the spectrum on most issues - take assisted reproduction, premarital sex, contraception, stem cells, and homosexual marriage as just a few.  The school doesn't seem to stress religion as much as living a Christian life, but I wonder about the reality of that situation.  I wonder if he's would feel like the odd one out, especially when the other kids are having their first Communion or Confirmation.  I also wonder how much we're going to have to re-teach at home.  Not that I think it's a bad thing to (gasp!) actually have to teach your kids yourself, I just worry about the "But my teacher said..." factor.  And I don't think it would be a bad thing if LM were to end up believing in some higher power, I just don't want that to be a result of our decision to give him a Catholic education.  I think that theological exploration is an important part of figuring out who you are, but I don't think that elementary school is the right place or age for that kind of contemplation and I don't want his religious decisions to be the result of being programmed as a child.  That being said, I also see it as a great opportunity to teach him to be a skeptical consumer of education, to learn that not everything that we're taught in the classroom is fact and that examining that information and deciding what we find to be truth is an important part of the learning process.

To make this decision even more difficult, when we started looking at Montessori schools, one of the big attractions was that he could start attending in the fall for pre-K and not have to change schools again until after elementary school.  Now our little guy has had quite a few school changes in the last couple years.  He's gone to two different schools and then no school during the time he's with BF and I and from his mom's house he's stayed home with family, gone to one school in the city, another in the 'burbs, which he's grown really attached to, and now he's scheduled to start at a different school downtown, closer to where his mom works, when the school he's in now lets out for the summer.  He's resistant to the idea of leaving the school he's in now, but that's an inevitability - it's over priced and too far away from any of his parents while he's there.  He only has one friend that he speaks of there and one of the places that he could use some help advancing (as is true with so many intelligent little people) is in his ability to socialize with children his own age.  I'm hoping that once he's settled in with one group of kids that he can stick with, he'll be more apt to make some friends. 

So the issues between the two schools, as I see them, are that the first offers an excellent academic curriculum, but doesn't have a preschool or a summer program, and that it offers a religious education.  The second offers an alternative education and curriculum that centers on the child's interests and learning through various styles, he'll be with the same group of people from September through the end of sixth grade, including the summer, but the technology, facilities, and teaching equipment were old and unimpressive and they don't have the highly credentialed academic program that the other does and that we feel LM deserves.

So please feel free to weigh in as to what you would do here or what you think about our little conundrum.  Goodness knows, we don't know what to do yet.  I'll keep you updated as to what we're going to do or any other options that arise.

Oh and regarding the house, which I promised to get back to, I'll explain, but not today.  Suffice to say, we may be moving back in as soon as we can.  Fun stuff!