ChezPerky

There are so many days where I have things to blog about, and yet there’s no time.  Ever.  When I finally have the time, I’m exhausted.  Who am I kidding?  I’m exhausted even when I don’t have the time.  Nevertheless, life is passing by and I’ve failed to record any of our comings and goings milestones, successes, failures, joys or frustrations.  So here are a few of the highlights…

• Because this is us, and because not enough things have gone wrong this year, our washing machine broke.  This may seem a minor inconvenience, but consider the amount of laundry that a family with five young children creates.  We do laundry multiple times every day in our house, and if we don’t, the piles take over.  We have great friends and neighbors who generously allowed us unfettered access to their laundry facilities, but it still adds complications to our already complicated lives.  I’m happy to say that we now have a new washing machine.  I’m less happy to say that it’s already broken (might have been defective from the start).  We’ve got someone coming out to look at it tomorrow.
• A first of firsts:  Tobie got her first tooth this past weekend.  This is the first time I’ve been the one to discover one of my chidrens’ first teeth.  I know it’s something small but it makes me feel unbelievably happy to have been the first to discover this milestone.  As a busy, working mom, it’s all too easy for milestones to slip by without immediate notice. 
• My health is not significantly improved since last I wrote about it – it’s just gotten to be boring to write about.  I had botox injections inside my stomach (around my pyloris).  While my pyloris as never looked younger, I still have crow’s feet and still have difficulty eating solid food.  Still, it wasn’t without at least a small amount of success.  I’m in less pain, and can now keep small amounts of solid food down.  It was very little trouble and did help a little bit, so it was definitely worth trying.  I have an appointment at Johns Hopkins in January, so hopefully they’ll have better answers for me.  As far as I know, I have exhausted my non-surgical options, so now it’s a matter of finding a doctor who can do the surgery that I need (there are a limited number of hospitals in the country who do gastric neurostimulator surgery).  We’ll see where this goes.
• We had Sam evaluated by our developmental pediatrician.  This is the same dev. ped. who evaluated and treats J for his ADHD, anxiety, etc.  J’s evaluation report 3 1/2 years ago was a page and a half.  Sam’s report was nine pages long.  There’s some possibility that Sam’s on the autism spectrum.  On paper, he looks very autistic, but in person, he’s far too socially engaged to strongly support that diagnosis.  He does, however, have a whole host of other issues.  He’s probably got OCD (he’s a little too young to diagnose with OCD, so normally at this age, his behaviours would be attributed to ASD instead.  This is where it all gets fuzzy).  He’s got ADHD inattentive type (no shock there).  Cognitive delays, speech/language delays, anxiety, and more.  He’s  a complex kid, to say the least.  The best thing I can say about the whole thing is that at least we have a great team working on his side.
• We had a gaggle of people over for Thanksgiving, including J’s mom and grandparents, our mothers, my BIL, and more.  A fascinating cast of characters, to be sure.  It was a stressful day, but everyone seemed to enjoy themselves, and I put out a delicious spread of food, if I do say so myself.
• Tobie still doesn’t sleep through the night.  This is partly because she’s been sick for the better part of a month, but also just that she’s not there yet.  This means that I am perpetually tired – I cannot wait to get a whole night’s sleep again. 
• I have more to say, but I’ve fallen asleep at the keyboard two or three times already, so I’ll have to catch up more later.

Today is our 8th anniversary.

So far, today I have had a three hour dental appointment, a two hour hospital visit, during which I had an endoscopic procedure to inject botox around my pyloris.  And tonight I get to go to a board meeting.  Awesome.

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!

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.

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.

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.

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.