ChezPerky

Albert Einstein once said, “The definition of insanity is doing the same thing over and over again and expecting different results”.  This is the definition that I’ve been working with for most of my adult life.  But today, I discovered the <i>true</i> definition of insanity.  Seth was working and I was home alone with five kids.

Frankly, I’m proud of myself.  I generally live in <i>fear</i> of being out with all five of them without any adult backup.  I love my kids, but there’s only one of me.  I worry about one of them running across the parking lot, one of them breaking something in the store, one of them melting down while all my hands are tied up with other kids.  I don’t like cooping them up in the house all day – it’s important to get them out and enjoy the world.  So it’s important for me to overcome my own fear about taking them out.

It was a productive day.  I like productive days.  I feel so accomplished and competent when we can accomplish stuff in the midst of parenting five kids.  We got laundry done, several loads of dishes, some cleaning, some good quality time with the kiddos, I rearranged the triplets’ bedroom furniture, and still managed to keep Tobie happy most of the day.  All in all, the day was a success!

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* Breakfast just for the kids (Seth wasn’t home and I wasn’t eating) took thirteen eggs, 8 pieces of toast and nearly an entire stick of butter.  And I wonder why we need to shop at Costco!

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First, several people have emailed me privately to make sure that I’m okay after my last post.  Yes, I’m fine, and I did go to my doctor the next day and got a prescription for Pristiq.  Is it helping?  Who knows.  But I think it is.  Unfortunately, it also seems to make me clench my teeth, so it’s causing me some pain as well, but I’ll live.

I went for a second opinion regarding the gastroparesis on Friday.  I didn’t have any desire for a second opinion – I have full faith in my gastroenterologist and I think he’s amazing.  He’s quite possibly the best doctor I’ve ever had and I’ve had a lot of really amazing doctors.  But he wanted the second opinion for his own peace of mind, so I went down to Georgetown.

The doctor at Georgetown was okay, but not anything mind-blowing.  She basically said that my doctor is doing everything right.  The things that were stumping him were that I’m always nauseated, not just when I eat, and that I have significant and persistent abdominal pain.  She recommended a brain MRI (he’d already done a CT, but she said an MRI might pick up a subtlety that the CT didn’t) to rule out other causes of the nausea.  And she said that although there’s no physiological reason WHY gastroparesis should cause pain, it seems to do so in a lot of patients.  Indeed, according to one study (published this year), 90% of study participants with gastroparesis reported abdominal pain.  So, whether it makes medical sense or not, it is consistent with other patients’ experiences.

She did affirm that a gastric pacemaker is an option I can explore.  Georgetown doesn’t do them anymore.  The hospital made a decision to stop doing them some time ago, but she didn’t elaborate as to why.  They recommended a doctor at Temple University who does them – and he sure does look like the man to go to.  His CV is impressive and he has significant experience with gastric pacemakers.  Still… I’m hoping my gastroenterologist knows of something more local.  I’ll go to Temple if I have to, but sheesh.  I’m still not sure it’s the right option.  The doc at Georgetown warned that she’s seen her share of patients who have gotten the gastric pacemaker and have seen no improvement.  She further noted that it seems (anecdotally) the patients who most benefit from the surgery are those with diabetic gastroparesis.  I have idiopathic gastroparesis, which doesn’t mean it won’t work – it just means there’s no way to tell.

She completely agreed with my regular doctor’s approach to treating me so far, though obviously we’d all like it better if it were, you know, working.  She said he’s got me on all the right medications at all the right doses, and there isn’t anything she’d change.  I emailed my doc and told him that basically he’s a supergenius who’s doing everything right.  We’ll meet this week to discuss next steps.

And, just for fun, I’ve got thrush again. Damn antibiotics.

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Friday was a complicated day. It was supposed to be my first (half) day back at work, but the best laid plans of mice and men…

I saw my gastroenterologist in the morning, and he’s beginning to think the best thing to do is to consider “gastric pacing” for the gastroparesis, because it is thus far not well enough controlled via medication. I’m still losing weight, but not at an alarming rate thankfully. I’m in pain all the time, nauseated all the time, and can barely keep food down. When I do keep food down, the pain is excruciating and I spend hours worried I’m about to throw up (and often do). Gastric pacing is, well, kind of what it sounds like. It’s essentially a pacemaker for your stomach. It’s done laparascopically, but I don’t know whether it’s inpatient or outpatient. Frankly, I’m getting tired of having to learn new medical terms. My google-fu is extremely good these days and I really wish I weren’t so practiced at it. Anyway, I’m thinking if this really is the direction we end up going in, I want to wait until the end of the summer to deal with it. I’ve already had enough surgeries to last me for the summer. Meanwhile, he wants me to go get a second opinion from the chief of gastroenterology at GW. Her schedule, unfortunately, is booked out until February. So he’s going to call her directly and see if she’ll squeeze me in, because obviously waiting until February is not an option. Right now I can’t keep down a bite of food without taking four (4!) different medications before eating. No way I can survive like this until February.

I love my gastroenterologist. He really cares about how I’m doing, he’s extremely sympathetic. It’s important to him that my pain be appropriately controlled and that I get better. I mostly joke with him about my crap luck when it comes to all things medical – I mean, I can either laugh or cry about it, right? And I’m tired of crying. And he said to me, “I know you’re sitting here laughing about it, but I also know that underneath that, you’re really suffering and I want to make you better.” He emphasized that sending me to GW for another opinion was in no way suggesting that he was releasing me as a patient, which is good because I love him and he’s my best doctor (and I have a lot of really awesome doctors) – he’s not allowed to get rid of me that easily. He also said if I start losing weight at a faster rate, he’ll probably put me on TPN – something I’d done my best to avoid through my entire pregnancy, but probably not a terrible idea if this goes on for too much longer.

When I left the GI’s office, I called my surgeon’s office because my abscess was getting worse and when I’d talked to them on Thursday about it, they’d said to check in Friday morning. Not any better, and I was running a low-grade fever, so they brought me in to see my doctor’s partner (my doctor was at the surgery center). When I got there, the doc tried to aspirate it, but said the best thing to do would be to go back in there, either through the existing incision or another one, so they called over to the surgery center to see if Dr. C. could fit me in. Luckily (thanks to the magic of gastroparesis), I hadn’t eaten anything, despite the fact that it was almost lunchtime. So I called a friend and asked if she could pick me up after the surgery (can’t drive after general anesthesia) and thankfully she was free. Then I called Seth to tell him he’d need to find his own ride home from work (I had his car and had been planning to pick him up). Then I called my boss and told him I wasn’t going to be in after all and that I’d see him on Monday. Sigh.

So that makes three emergency surgeries in three weeks. See why I want to put off this gastric pacing thing?

I have a post-op appointment Monday morning, and then I’ll be at work for the rest of the day. You know, assuming that I don’t have another surprise surgery. (Maybe I shouldn’t even tempt fate by saying that!)

That’s all for now. I think it’s quite enough anyway.

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J went to a birthday party recently (he goes to a lot of birthday parties – he has a very busy social calendar!). As is customary at children’s birthday parties, he received a goody bag at the party. It was a safari party, so he received all kinds of fun things – binoculars (which he was devastated at having accidentally left on the metro), a safari hat, a little seed/planter thingy, and some other fun things. But the most prized possession in that goody bag was, by far, a delightful little notepad and coordinating ball point pen.

He couldn’t be happier with this treasure. He’s been drawing in it, writing in it (to the extent that he’s able to), and has been a happy camper because of it. One of the first things he did with it was make a self-portrait, which he gave to me:

He’s become such a delight to be around. As he gets older, he gets more interesting, more curious, more interactive. He’s maturing at a rate that is unfathomable to us, and it’s amazing to watch his growth. It’s summertime, which is a great time of year for him – he gets to just be a KID for a couple months, with fewer responsibilities (he still has summer homework to do, but we can take our time with it, etc.). He runs and plays hard at camp all day, swims 2-3 times per day, gets lots of energy out, and comes home happy. It’s great.

In the last couple of months, the triplets have gotten just enough older, just enough more mature, and just enough more cognitively aware, that J has discovered that they are actually pretty fun to play with. He’ll help them build trains, or towers with legos, he’ll chase them around giggling, he’ll put on a show for them, push them on their tricycles – it’s endless. And beautiful.

So this morning, he was running around like a maniac, chasing the triplets around the dining room and living room, and popping out to surprise them and they were giggling like maniacs – so delighted for the attention from big brother. I called J into the kitchen to help get his lunch together and he came running in breathless.

“I love playing with the triplets, Eema.”
“I love that you love playing with them now. I’m glad you’re having fun!”
“Oh, it’s SO much fun to play with them! You should try it sometime!”

I stifled my giggle, because he was quite serious and I sensed that laughing at him right then would not go over well, but there he was – all sweetness and innocence. The portrait of perfect contentment. He’s right, of course. We could all stand to play more with our kids – and enjoy this time while we have it. I’m sure he didn’t mean anything that profound, but it really is true – I may not have learned everything I needed to know in Kindergarten, but this kindergartner (now a rising 1st grader) has taught me a lot about perspective.

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You know what?  I’m quite tired of pretending that everything’s okay.  It isn’t.  I’m literally falling apart from the inside out.  In the nine weeks since Tobie was born I’ve had the following procedures:

• Upper endoscopy (EGD)
• ERCP (endoscopic surgery)
• Echocardiogram
• Gastric Emptying Study (eating a radioactive egg)
• Head CT Scan
• Abdominal CT Scan
• Ultrasound
• Abscess aspiration

And tomorrow I’m scheduled for surgery (more on that later).

In the nine weeks since Tobie was born, I’ve been diagnosed with:

• Gallstones
• Mitral Valve Prolapse
• Thrush
• Blocked milk duct
• Gastroparesis
• Pancreatitis
• Mastitis
• Abscess (resulting from the mastitis)

I’ve really had quite enough.  I saw a surgeon today to confirm my OB’s suspicions that the mastitis has progressed into an abscess.  I was really hoping that he wouldn’t agree, but there really was no doubt.  He did an ultrasound, tried aspirating the abscess and the backed up milk (I have a huge lump about 2 inches wide and 4-5 inches long that’s probably all milk).  But he wasn’t successful, so tomorrow I’m having surgery.

I have an amazing husband, awesome kids, some really great friends.  The rest of my life can suck it.

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I’ve been feeling pretty awful, as I intimated in my post the other day. High fever and abdominal pain topped the charts on the ick factors most of the week. Tuesday I was so frustrated with it, I went to my internist who was also puzzled. Since I was scheduled for an endoscopy on Wednesday anyway, my GP faxed over my lab results to the GI doc, since they indicated elevated liver enzymes, among other things. The GI doc did the endoscopy and found that my stomach was in pretty bad shape, so he changed the PPI I’m taking and increased the dose significantly. But that still left the mystery of the liver enzymes, severe abdominal pain and fever. “Well, I think you have gall stones” he said. “But I don’t have a gallbladder” I said at the same time that Seth said, “But she doesn’t have a gallbladder!” Turns out, it doesn’t matter. You can get gallstones even after a cholecystectomy, and although I find this to be entirely unfair, it doesn’t negate the facts. He scheduled an MRI for me for the next day and said depending on the results of the MRI I would either need to have an emergency procedure on Friday or we’d have to talk about next steps. He prescribed me percocet for pain, noting that there was no possibility that codeine would cut it for that level of pain (have I mentioned that I love my gastroenterologist?)

I never made it to the scheduled MRI, because Wednesday night the percocet wasn’t cutting it. Six pills in six hours and I was still sobbing and screaming in pain. My husband told me to go to the ER but I stubbornly said no way no how. By 11pm, I had conceded. I put some things together, defrosted some frozen breastmilk for Tobie, and had a neighbor take me to the hospital. I was admitted to the ER just around midnight, but didn’t get a bed until 1am. And then I laid in bed sobbing until Seth called the charge nurse at 2am and demanded that SOMEONE see me, because I hadn’t so much as had a nurse say boo to me. The nurse told him I couldn’t have pain medicine until the doctor saw me, and he was with other patients ahead of me. Obviously we knew this, the question was how long until a nurse, at the very least, checks in on me. Finally around 2:30 I got seen, and shortly thereafter, Seth arrived at the ER (my mother came to stay with the kids at the house so he could come help advocate for me). I got Dilaudid shortly thereafter and things started looking up. The ER doc was planning to send me home (and what on earth would I have done once the dilaudid wore off?), but my GI Doc had them admit me. The hospitalist who admitted me kept telling me it couldn’t possibly be a gallstone because my bilirubin was not elevated, but I didn’t know her from anyone, and I was more willing to trust my GI doc’s opinion, even at 4am over the phone.

Once I was admitted, I asked for a breast pump. When the shift changed at 7am, I asked again for a breast pump. I acquired a breast pump at 11:30am only after having contacted a friend who is a lactation consultant at the hospital – *she* is the one that made sure I got one. I find this wholly unacceptable, but fortunately, I’ve got friends in high places (hah!), so I know who to send the letters to, and they’re already written. Meanwhile, I was still in the ER waiting for an inpatient bed to open up, which didn’t happen until 3:30pm. The only plus side was that I got frequent visits from the Dilaudid fairy throughout the day.

Dilaudid, at least, cut my pain down to something manageable, but it had curious side effects. Like all narcotics, it can be sedating, it can make a patient itch, it can cause or exacerbate nausea. Turns out, it can also cause hallucinations – in my case both visual and auditory hallucinations. I kept hearing snippets of music out of the corner of my ear, but if I turned toward the sound it was gone in an instant. One day, I watched a tiny little bug crawl on the bathroom tile. Suddenly the tile pattern was swirling all around it in a psychedelic freakish way. Then the pattern morphed and then the tiny bug (I swear, I’m shocked i could even see it, it was teeney!) morphed into an ant and then a, I dunno, something bigger than an ant and then a giant spider and the swirls kept happening and suddenly I said, “Don’t be stupid, Perky, this isn’t real!” and it was gone – vanished as if it had never existed (which, obviously, it hadn’t!). Sometimes I would hear voices, or see people in front of me who weren’t there. For the life of me I can’t figure out why someone would WANT to have these feelings, hallucinations, sensations. There’s nothing pleasant about it, though I’ve heard that people actually get addicted to this stuff. Yuck!

So Dilaudid aside, while I was in the hospital, I did get that MRI that I had been hoping to get as an outpatient, and it showed that the common bile duct was significantly swollen/inflamed, though they didn’t see a stone per se (they hadn’t used a contrast dye in the MRI, so it would have been a long shot to visualize it). I was scheduled for a procedure the next day to take a look, remove the stone, if any, and to enlarge the opening to the common bile duct so that it wouldn’t get obstructed by any future stones. At least I knew that all the pain and misery wasn’t just in my head. There was actually something I could point to. And wouldn’t it be a bonus if it turned out that this was the whole reason behind the continued nausea and vomiting? I was eager for the procedure to be over with so I could find out if there would be relief at last. I was scheduled for Friday afternoon and had hoped to be allowed to go home by Shabbos.

The procedure was supposed to be done under light anesthesia, but because nothing is ever simple in PerkyLand, and I was only 7 weeks post partum, they had to intubate me and do full anesthesia because the risk of aspiration was too high. (Turned out they were right to do so – apparently I threw up a bunch of times during and immediately after the surgery) This meant I’d be staying at least one more night. Not shockingly, my GI Doc was right – there was a stone, which he removed, and then widened the opening to the duct so that it wouldn’t get obstructed in the future. The doc said my pain should get better in about 24 hours.

Unfortunately, the nausea/vomiting hasn’t gotten any better and I’m still in a fair bit of pain. Hopefully, the nausea is related to the stomach issues discovered at the original endoscopy that started this whole saga and fixing the stomach problems will be the answer. But since it was still an issue, my doc wasn’t fully comfortable sending me home Saturday, so we waited until Sunday to see if my pain would go down and if I could eat anything. Seth brought Tobie to me Saturday night so I could see her and feed her and that was the first time I’d seen her since Wednesday. Finally, Sunday morning I was allowed home.

I’m seeing my doc this afternoon to talk about next steps, but mostly, I just want to sleep. I feel like I haven’t slept in days, even though pretty much all I *did* was sleep while I was in the hospital!

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So I am giving fair warning that there is no purpose to this post beyond pure complaining and whining. I just feel like the universe is out to get me. Even ignoring all the other things going on in my life that are going to hell, but the medical issues alone that I’ve got going on right now are becoming overwhelming…

I still am not eating after the pregnancy from hell. No one knows why, no one can explain it. But I’m extraordinarily tired of being sick to my stomach.

I have persistent thrush (so does Tobie). If you don’t know what this means and/or you’ve never experienced it, thank your lucky stars. It is incredibly painful (for me – uncomfortable for Tobie, but probably not painful). I’m now on a more effective treatment – here’s hoping it works. Quickly.

Now I’ve got a high fever and severe abdominal pain. Today is day 3 of the fever and pain. No one knows why.

I have a (new to me) “very pronounced” heart murmur. Apparently new heart murmurs that surface at the same time as a high fever are sometimes really bad juju. There could be a connection, or it could just be coincidental.

I might have a kidney infection. Kidney infections are not fun – I know from experience. Well, it could be a kidney stone (but my guess is no). I haven’t had one of those for a while (since I was pregnant with the triplets), so it’s about time, right? Riiiiiiiiiiiiight. For the record, it’s not like kidney stones are a lot more fun than kidney infection.

I have two broken teeth, and apparently another tooth that has cracked. One of the broken teeth isn’t salvageable – it needs to be extracted, probably followed by an implant. The cost, even with insurance, is overwhelming (dental insurance is notoriously crappy and inadequate). Never mind the time it will take to make this possible. If you have good teeth, thank your lucky stars. I’ve got genetics going against me, but also the fact that I grew up without flouridated water. Apparently, that’s not a great idea. Flouridated water is good juju for healthy teeth.

There are also several other things wrong that are TMI, but aren’t quite so egregious.

I have an endoscopy scheduled for tomorrow. I now also have an echocardiogram scheduled for Friday. Bring it on.

I am tired. I am tired of the emotional turmoil that’s been going on in our lives, and I’m tired of being sick. I’m tired of not being a fully functional member of this family. I’m tired of not being able to carry my weight here (and my weight, if you know me personally, is not insignificant). I’m tired of having to beg my body to get up out of bed every morning.

I’m just tired.

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