Because blogging keeps me awake

I had three hours of sleep last night. I'm running on caffeine and sheer willpower. I can barely put a full sentence together. It is by the Grace of God that I haven't strangled anyone this morning.

Last night was bad. There was this awful line of severe weather with high winds and tornado threats moving through, and Joe was out in it picking up a conference participant at the airport. So, obviously I couldn't really sleep until I knew he was home safe. Then I was up another 45 minutes waiting for the heavy part of the storm to pass. Thunder is annoying. High winds, though, make it impossible for me to sleep.

I was just drifting off when Olivia woke up (after the bulk of the thunder had already passed) and said that the storm scared her. So I went to lay with her in her bed. She proceeded to toss and turn, wide awake, for the next three hours. At that point, I was so tired that I was sobbing. I put her on the couch and turned on the TV at 3:45 a.m., resigned to the fact that if she could be entertained by the TV, at least that meant I could get a couple of hours of sleep before I had to get up and face the day. Normally, TV in the middle of the night would NOT be an option, but IT WAS 3:45 A.M. AND I HAD NOT YET HAD ANY SLEEP. I was desperate.

Of course my desperation and sobbing woke my husband, who had been asleep about three hours at that point. He took matters into his own hands, trying to get Olivia to calm down and fall asleep. He finally succeeded about two hours later, only to have her wake up about an hour after THAT with a bad dream.

Needless to say, we are both very, very tired today. And Olivia gets to take a nap this afternoon, whether she wants to or not.

Recovery-wise, things are going smoothly. Olivia still complains of sore throat when she eats something scratchy, but otherwise she is acting and playing normally. Where she was breathing so loudly before surgery that we could hear her on the opposite end of the house, doors closed and TV on, she now breathes so quietly that we have to watch for the rising and falling of her chest to know she is breathing at all.

All this has translated to better overall sleep as long as nothing wakes her prematurely. That part could be a problem. Even after just six hours (of her usual eleven) of sleep last night, she was refreshed enough to stare wide-eyed at the ceiling for the better part of the night.

The other thing I've noticed is that she hasn't had a bedwetting problem since the surgery. She developed that problem around this time last year, when we started noticing her apnea symptoms. It is really too soon to tell since she was so dehydrated for several days following surgery, but she has been "normal" in fluid intake for the last few days, and still she stays dry all night. I'm thinking maybe she was too tired to get up and potty before. So I'm hoping that trend continues.

The huge downside is that she seems to have developed an allergic reaction to all food dyes. Everything is making her break out. Today is the first day in a week that we haven't dosed her with bena*dryl. We aren't sure that dyes are the cause, but it seems to be the common denominator. We are hoping that avoidance of all dyes takes care of THAT problem.

I am so, so tired.

Itchy

The surgery recovery continues to be nothing but misery. On Sunday, Olivia broke out in hives. We thought it was the narcotic, so we stopped that and switched to regular ty*lenol. The hives continued and got worse after her Monday dose of antibiotics. So we assumed the antibiotic to be the culprit and started back on the narcotic. They STILL continued but seemed to get worse after the ibuprofen. So yesterday, she had nothing but ty*lenol.

And the hives got worse again.

Last night, at the end of our proverbial rope, we decided to give her nothing at all (except Ben*adryl, because of the hives). She slept basically like all the other nights...peacefully for 5 or 6 hours, then up for 90 minutes in pain until she passed out again for the rest of the night.

But today, she woke up with hives AGAIN. And her throat is very swollen and she doesn't want to talk or eat or drink.

So. The nurse said to stop tylenol and try ibuprofen but only if she absolutely needs something for pain. This, of course, is right in the midst of what they said would be the hardest part of recovery, pain-wise. But right now, the itching hives and the swelling in her throat are causing her more problems than pain. The nurse also advised us to start back on the steroid, which we stopped on Sunday since we weren't sure what was causing the hives, because it is not likely the allergen and will help with the swelling.

Recovery day 7. She's crying because she can't swallow much and she's gagging on mucus and I'm thinking that a ten-day recovery is just a pipe dream. I'm also thinking of buying her a pony* when this is all over. The poor kid deserves a treat** after all this pain and suffering.

*And by "pony", I mean, "special toy or treat of her choice, under $30". Because I'm not made of money. And she's a little terrified of large animals.

**Mommy also deserves a treat. Recovery is pretty hard on caregivers too. Which is why I am 100% sure I am not cut out to be a nurse. Those people should get a special medal or something.

This one is about my cycle. You have been warned.

A year ago, when we finished surgeries and such, I started having hormones tested monthly to see if we could get them in the proper balance for (ha!) pregnancy. And, you know, for normalcy. Then I started changing my diet and feeling better and unintentionally losing weight and YAY! Right?

Enter Summer, A.K.A. the season when I got lazy. I started eating bread occasionally. Maybe once a day. You know, when I was busy or out and needed a quick meal (bread on a sandwich or something). And then people started bringing cookies and treats at my very-part-time summer job. And I'd indulge in one. ONE.

The scale...well it continued to show me that my weight loss was unaffected by these new dietary slip-ups. So I got sloppy. Lazy. Ate more grains when I wanted and didn't worry much about it. The scale continues to stay the same.

But my cycles aren't.

Granted, my cycles are screwed up. I have this weird spotting at the end that just NEVER. GOES. AWAY. Except that it used to be 4-5 days long. Now it's more like 8-10.

And where my cycles used to be 28-30 days in average, they are getting shorter. Disturbingly shorter. Last month was 26 days. This month was 21. TWENTY-ONE DAYS. That's three weeks, people. That is too short. Especially factoring in the first week as menstruation and the last week as spotting. I'm bleeding for 2/3 of my cycle?! That is NOT ok with me.

Here's the thing...I don't know terribly much about reading the medical cues in cycles, but from my experience, short cycles mean one of two things: Pre-menopause or endometriosis. I can't imagine being pre-menopause in my mid 30s. And we've proven my body's tendency toward endometriosis, the evil inflammatory condition that seems destined to take my reproductive organs from me. But I spent a lot of time (not to mention money) and endured a lot of pain to fix that problem last year, and I'm not giving them up without a fight.

All this is to say that I think, maybe, the problem is inflammation and my inability to control it without sticking to the diet. So *sigh* I guess that means that I'm going militant on my diet again. Goodbye, homemade cookies. Goodbye, bread. You taste great, but you are not worth all of this.

An anniversary, of sorts

On Tuesday, Joe asked me if I remembered where I was a year ago. I answered, "Omaha, surgery" without even needing to think about it. Last year, the Summer bookend holidays of Memorial and Labor Day were both spent in Omaha or en route to that place where I went under the knife in an effort to erradicate the disease that threatened my reproductive organs and caused all kinds of life-altering symptoms. The surgery on August 30th was the biggie...the one that left me with a c-section-like scar and permanent numbness in my midsection. It was the long surgery in which the doctor basically cleaned up my whole reproductive system and did a little reconstruction. Endometriosis, in my case, had tied up my insides in a bad way.

August 30th also marked the beginning of the longest two weeks of my life, waiting out the healing between surgeries in Omaha while my little girl spent her time with grandparents, ten hours away. The first few days after surgery were painful, and the lack of energy after that was frustrating. But what was most difficult was being away from Olivia for such a long time.

Even though it was a hard wait and the second surgery turned out to cause me more recovery problems than the first (though it was supposed to be outpatient), and I wouldn't want to revisit that time or do it over, I am glad we did it. I feel better, all the time. There are things we discovered through this whole process that have led to treatments and diets and lifestyle changes that make me a happier, healthier person. I think this next two weeks, though, I will be most thankful just to be spending this time at home!

Home, healing, happy

Wow, what a blog hiatus! I have an excuse, of course. I've been healing. And then having more surgery. Which went kind of haywire and required hospital stay. Yeah.

So surgery #2 on Friday, the "easy" scope to remove the protective film from my organs? Hmmm. Well, it took longer than expected because something got knicked and started bleeding and then they took forever getting it to stop. The rest went well. But then in recovery I got all swollen and couldn't, uh, void (a prerequisite to discharge from hospital). And then the CO2 gas they pump into you during surgery (to keep the organs floating or something) didn't get all sucked back out...probably because surgery was longer than expected and it escaped and hid all over my chest cavity. And then the gas attacked my right shoulder. I hear this is common. Not so common, however, is that it then attacked my whole chest cavity and gave my lungs just a very tiny bit of room to move. I was panting. And panicking. It was not fun. The powers-that-be decided really quickly that I would not be leaving the hospital that day, and they started to run all kinds of tests to find out how to help me.

When the tests came back, they found out that my kidneys were going haywire. Whoa. Good thing my lungs started freaking out so we could find this out. Because this kidney thing was pretty important (not related to the breathing thing, but important for overall wellness, you know). The trigger? Several causes were debated, but almost certainly the problem was exacerbated by the nurse who gave me a mega-dose of Ibuprofen in post-op for pain control. I asked for Tylenol. Non-narcotic. She said they only had regular strength. I said my doctor told me not to use Ibuprofen. She talked me into it. (I was just out of surgery, post-anesthesia, and a little bit in pain, people.) Yeah. Turns out there's a reason that ibuprofen is not recommended for patients with kidney disease (me).

So I ended up staying ANOTHER night waiting for my kidneys to adjust and begin behaving normally. They did. Meanwhile I had a whole new team of doctors checking on me (nephrology). I barely slept the whole time (have you TRIED to get a good night of sleep in a hospital? While a bunch of people keep poking you for one reason or another?). Someone is going to end up paying for another two nights of hospital stay and a billion blood tests and another team of doctors because of all of this mess.

And this was supposed to be outpatient.

*Sigh*

We saw my doctor on Monday (I was finally discharged on Sunday), who showed us the video of my second surgery, which ended in pictures of textbook-like anatomy, which I have NEVER EVER SEEN...with my name on it, anyway. So, overall, the surgeries did exactly what they were intended to do. Success. Just with some HUGE stumbling blocks along the way.

We drove forever and finally met Olivia and her grandparents on Tuesday at a restaurant, where we were going to have lunch and then make the transfer of kid and kid's stuff so we could go HOME. As they pulled up to the restaurant, we walked outside to greet them. Olivia had the car door open almost before they stopped the car. She screamed and ran to me with arms outstretched. I broke down into a sobbing pile of goo.

Did I mention the sleep deprivation? Combine that with missing your child for more than two weeks and I'm not sure I had any chance to react any other way.

Olivia was happy to give us lots of hugs and kisses all day. I noticed in certain instances that she seemed to be dealing with her own set of confusing emotions about Mommy and Daddy being gone so long. I hope we can work through those in the next few weeks, when we aren't going to be doing much but staying home and playing together (doctor's orders...take it VERY easy for a few weeks).

I'm just happy we're all home, and all together again.

What could be better?

Our little Omaha trip happened to coincide with the 25th anniversary celebration of the Pope Paul VI Insititute. This included a conference at the end of this week and then a family day celebration today. I slept amazingly well last night and was feeling so much better, so we decided to go down to celebrate for awhile.

A bunch of the nurses recognized me and asked how I was feeling, which was nice. We browsed around some of the booths and bought some books. But mostly we just sat and watched people. I am on the mend, after all.

The first door prize was drawn after about an hour. $25.00 gift card to our favorite local eatery (not chain) and $100 florist gift card. I thought...that would be perfect! We could have lunch there and also send flowers to our hosts (the couple who is generously hosting us at their home for a week between the two surgeries) for free! And...WE WON!

So, yeah, it was a pretty awesome morning. Not as awesome as being at home, but good anyway.

Finally feeling well enough to do an actual post.

Yes, I survived the laparotomy. I've been wanting to update. Honestly, I have. But I've just felt so crummy for so many days. This is the first time I've felt totally like myself since the wee hours of Monday morning.

So...surgery itself went very well. Doc said my left tube was seriously screwed up. But he cut off all the adhesions and untwisted it and wrapped it in goretex and thinks it should look OK once it heals. Right tube was fine. All other extractions of bad adhesions and endometriosis went fine. We'll be back there on Sept 10th for laparoscopy to remove the goretex. In the meantime, we convalesce.

Spent two days in the hospital. I. HATED. THAT. I could not sleep in the hospital for more than 45 minutes at a time, and usually less than that. I was on morphine first, which made me sleepy and numb, but also itchy and wired. So I'd doze off mid-sentence and then startle awake moments later, only to find that my universe was altered in the moments of unconsciousness. Here's what I mean. I'd be totally alone in my room, but in the moments while I was sleeping I'd dream a conversation with my husband or nurse, and then I'd open my eyes and find that I was alone in my room. And talking to myself. Because I'd be answering the question that the imaginary person had just posed and wake up to find that I was answering no one. Also, I couldn't focus on anything, especially up close. I had a book and some other papers to read and I COULD NOT READ THEM. I finally figured out that if I took off my glasses, I could almost make out most of the words. And then I'd doze off.

It was not fun.

So then they decided I'd had enough morphine torture, and they switched me to percocet. This did almost the exact same thing to me, except in more measured doses because it was a pill every 4 hours instead of a drip whenever I had pain and pushed the button. Except that I AM MOST DEFINITELY ALLERGIC TO PERCOCET! I would be begging for pain relief by the time the nurse came for my dose, and ten minutes after my dose I'd be scratching myself from head to toe and looking for a rash or hives (which I wouldn't have been able to see even if I'd had the abdominal strength to lean up and look because of the dang screwed up vision!). After probably 4 doses of this, we finally figured out that it was the medication. (Hey, my thinking was narcotically altered. I am not to blame for taking so long to figure this out.)

Finally, they switched me to Darvocet. This was mildly better. At least I stopped hallucinating. And by then I could get myself out of bed and walk all the way down the hall without passing out or falling asleep spontaneously, so we were pretty close to check-out.

I checked out of the hospital on Wednesday afternoon, and since then it's been pretty crappy. I learned that I was very anemic after surgery when I filled the prescription for iron supplements and got a call from the doctor's office with instructions to come by for a CBC. Anemia and narcotics do not a hungry patient make. I was pretty nauseated for a couple of days. I abandoned the darvocet on my own and decided it was super-strength tylenol or nothing. And things have been gradually looking up ever since. After two very long days and not a lot of quality sleep, I think I finally have my blood sugar and hemoglobin levels in an acceptable range. I added a little walk around W*lM*rt today, and now I feel like myself again. Well, myself with a numb little pouch of swelling in my gut. Minus a whole lot of my normal energy. But still. Close to normal.

And I'm optimistic about a somewhat normal night of sleep. Tomorrow must be better, people. It MUST!

Chez Grammy

So, Olivia and I went to Joe's parents' house last night to drop off some of the larger "supplies" for Olivia's stay with them while we are gone. Grammy and Grampy get the bouncy house and Liv's bike for the week, and I also went ahead and packed her clothes and shoes. (Surprisingly, or not so, packing so many clothes up did not at all affect my ability to clothe the child for the rest of the week. She has more changes of clothes than Vanna. I kid you not. All hand-me-down. Yay, cousins!)

On the hour-long drive to their house, Olivia kept asking me why her bike and bouncy house were in the back of the van. I decided it was time to explain her impending visit with Grammy and Grampy so she could prepare herself for the extended stay.

Me: "You are going to go stay with Grammy & Grampy for awhile, starting next week."

Liv: "Why?"

Me: "Because Mommy has a pain in her tummy, and she has to go to the hospital so the doctor can fix it."

Liv: "Why?"

Me: "Well, honey, there's something inside Mommy's tummy that hurts her and the doctor is going to make it all better. Isn't that nice?"

Liv: "Is Daddy going to the doctor too?"

Me: "Yes, Daddy has to drive Mommy."

Liv: "Why?"

Me: "Because Mommy will be taking medicine and won't be able to drive."

Liv: "Oh. Why?"

It was a bit circular from there. A lot of "Why". Welcome to the "Why" stage of childhood.

But, ultimately, she got it. I think. Because when we were at Grammy and Grampy's last night, after Olivia showed off her mad bike-riding skills (declaring, "Look, Mommy! I'm super awesome!"), Grammy was asking her if she was excited to come visit them next week. And Olivia said, "Yeah, I'm going to stay here with you and Grampy! Mommy has to go to the doctor because she has a pain in her tummy. The doctor's going to take the pain out at the hospital. Grammy, can I run in the sprinkler?"

Hmmm...doesn't appear that she is dwelling on Mommy's surgery too much, does it?

So, I think it will all be OK. I think she'll be fine. The separation will probably be harder on me than it is on her. They have all these plans for outings and fun stuff to do. She probably won't want to come home with us when we get back.

Maybe that's what worries me.

By this time next week...

...I will just be coming out of surgery. I think. That makes my head hurt.

None of the unknown aspects of surgery are freaking me out at all. Just the known one. I hate the I-V catheter in my hand. Hate it. And I have a sneaky suspicion that I will have to live with that thing in my hand for the duration of my stay in the hospital. Which is 2-3 days. And let me just say...last time? When the I-V was removed around 3 p.m. on the SAME DAY AS SURGERY? I HATED THAT. So I'm fretting over whether they'll leave the stupid thing in for days, until I'm released. Which, I imagine, they probably will. And my hand already hurts just thinking about it!

We haven't yet explained to Olivia that she'll be staying for a long, long time with Grammy & Grampy. She knows that she has a camping trip coming up with Grandma and Grandpa (over Labor Day weekend). And she's excited about that. She's done it before. It's a few days, and there will be lots of cousins around to distract her sufficiently. But she doesn't know that she'll be coming from Grammy & Grampy's and returning to them after the camping is over. She LOVES Grammy & Grampy. But she's never spent the night at their house. Not to mention two weeks worth of nights. Gah!

She also doesn't know that Mommy will be in the hospital...a place reserved, in her mind, for car accident victims. (Nothing like scaring your child into keeping her seat belt buckled.) Not really sure how she's going to react to THAT news.

Just how much do you tell a not-yet-three-year-old?