House of Estrogen

And Back We Go...

Elise's headache and vomiting got out of control, most likely side effects from the IVIG, but we're back at the hospital, in the ER this time. Right now, she's getting IV fluids and Zofran (nausea med). They haven't finished the work-up because they wanted to get the nausea under control first. For the moment, she seems to be resting fairly comfortably, but she looks like death.

Questions Answered

Thanks for all the love, support, prayers, emails, and comments. It really meant a lot knowing so many people were thinking about Elise.

It feels great to be home, but unfortunately the side effects of the IVIG are starting to hit hard, so Elise is battling a raging headache and bellyache. I'm hoping that if she can ever get to sleep, some rest will help. If she gets much worse, we may need to head back to the E.R.

To answer a couple questions...

Do they think this treatment will put Elise in remission?  In children, 80-90% of ITP cases are acute. They are a one time event. Once the platelets get back up to normal, that is the last you'll see of ITP. A small percentage of cases are chronic and need more continual monitoring and treatment. Obviously, we hope that this was just an acute case. The job of the IVIG was to stop the antibodies that were attacking the platelets. That seems to have worked, but now Elise's bone marrow has to work to replace all the lost platelets. That simply takes time. It could take up to six months before she is back up to the normal range. Since she bumped all the way up to 100,000 today though, hopefully it won't take that long to get up to the 150,000 - 400,000 range.

We will certainly be more in tune to any bruising or bleeding in the future though, watching for any signs that she could be one of the few cases of chronic ITP.

Do you know yet if she will have any activity restrictions and/or any follow-up needed? The instructions from the hospital were to avoid any activities this week like biking or skateboarding where she might be likely to suffer an injury. We see the pediatrician on Friday, and at that point, we'll learn her new platelet level, any activity restrictions, and a follow-up plan. I'm assuming she will be followed fairly regularly until her counts are all the way up.

 

100,000!!

Woo hoo! Platelet count came back as 100,000! That's double what it was before the IVIG!  We're out of here as soon as they can get the discharge papers ready!  We're still waiting on a reading of the blood smear from the lab, but nobody is anticipating any problems with that, so they are letting us leave and will just call if there are any issues.

What an insane 22 hours this has been!  

Lesson learned in all this... if something seems a little off or unusual, don't put off going to the doctor. If we had ignored the little spot on her arm, I have no idea what situation we might have eventually landed in if her platelet count had dropped dangerously low... scary to think about it.

Unplugged

The first infusion just finished, so Elise is enjoying a break from all the monitors, wires, tubes, beeping, and sticky electrodes. They just drew blood, so now we wait.

Feels a bit like Grey's Anatomy around here...

We just had a crowd of about 10 doctors, residents, and med students come in on rounds. I've been in teaching hospitals plenty of times before but never had a crowd quite that big come in. Elise got a kick out of it. Elise is tolerating the IVIG well. We were warned about flu like symptoms, stomach upset, and "feeling like crap" (nurse's exact quote), but so far, she is doing OK - watching Tinkerbell and slurping a popsicle. When her infusion ends, they'll take more blood, examine the slide to make sure the shape of all the cells looks OK and check her platelet count. If the platelet count hasn't gone down, it sounds like she could be discharged this afternoon. All the docs have said that it often takes a couple of treatments before kids respond though, so I'm not getting my hopes up about going home today. We'll see.

Big Platelets = Good News

There is no definitive test to say for sure that a person has ITP. It is basically just a process of elimination. The normal WBC and RBC counts helped to rule out malignancies which certainly makes ITP a likely candidate, but the next step in the process of elimination is seeing whether or not she responds to the IVIG. If she does respond to it, and her platelet count goes up, that's another good sign that it is ITP as opposed to something worse and scarier. This morning, the med student who came by said that they looked at her mean platelet volume. That number was high which means the platelets she does have are large which is what you would expect when the body is working overtime to replace lost platelets. So, the high platelet volume is another good indicator that this is probably ITP.

Morning Update

Elise and I finally got to sleep around 1:30 a.m.  She seemed to sleep pretty soundly despite the nurses waking her every hour to take her temperature. She still has about 4 hours left of the IVIG infusion. I'm not sure how soon they will draw blood after that. I guess we'll know more once they draw blood, and we find out if the IVIG has done anything yet.  She didn't have any adverse reactions to the IVIG, so that was great. They had told me to come get them immediately if she had any chest pains or trouble breathing - scary stuff.

Idiopathic thrombocytopenic purpura

Long day... not even sure where to start, but it is after midnight, I'm in a hospital with Elise next to me hooked up to cardiac monitors, blood pressure monitors, pulsox monitors, and an IV. She's watching a movie, and I'm trying to digest what has gone down today.

A couple days ago, I noticed a dime-sized spot on her arm. It didn't look like a bruise, not exactly a mole either... just a puzzling little spot. It was like teeny tiny red dots all clustered together in this circle. I hadn't ever seen something like that before, so I called this morning to make an appointment to have the pediatrician look at it this afternoon. I was assuming it was some sort of skin issue... something mole-like, and perhaps the doctor would send us on to a dermatologist. I was wrong.

We got in there, and he started looking at her skin all over... her back, her belly, all her extremities. The look on his face wasn't good. Then, he asked, "Does she usually bruise easily?" and started pointing out petechia, teeny, tiny pin dot sized bruises all over her body. I never in a million years would have seen all these dots without someone pointing them out. Even now that I know what to look for, I'm not sure I would see them without having a reason to look for them. Anyway, in my mind, a child with bruising equals leukemia, so my heart was in my stomach at that point. Then, he continued his exam - lymph nodes, spleen, and asking all the cancer questions - "Has she lost weight?", "been fatigued?", "had night sweats?"  All I heard was, "Does she have cancer symptom 1?", "Does she have cancer symptom 2?" Fortunately, our answers were no to most of the questions, but that didn't allay my fears. He said he wanted to take blood work. I knew what he was looking for, low platelets, high white blood cells. I told him he was making me nervous. The look on his face did *nothing* to make me any less nervous. He said, "Well, the good scenario would be that she's just had some virus and all the blood work comes back normal. The bad scenario would be that she has ITP which is a condition with low platelets, and she would need treatment in the hospital."  I knew he was leaving off the worst scenario which was leukemia. He didn't mention that one purposefully, but I knew it was out there. The nurse came, pricked her finger and disappeared for a few minutes. When she came back, she said that he wanted to re-run the bloodwork to double-check the results. At this point, Elise's tiny prick spot on her finger was still bleeding profusely... not a good sign for the platelet count. The only good part about that was the nurse was able to draw blood a second time from the same spot.

When the doctor came back in, he said he had good news and bad news.... "The good news is, her white blood cell and red blood cell counts are normal, so that pretty much rules out a malignancy... which I hadn't told you was a possibility. The bad news is, her platelets are low, so it is probably ITP, and she needs to be admitted to the hospital to start treatment tonight." Wow.

So, here I am, letting all that sink in. Here is what I've learned about ITP (Idiopathic thrombocytopenic purpura) in the past 8 hours. Idiopathic just means no known cause. The thrombocytopenic part means low platelets, and the purpura is bruising, so she has bruising and low platelets with no known cause. It is an auto-immune type of problem. Antibodies that her body is producing are attacking the platelets. Her bone marrow is producing platelets as it should, but it can't keep up with the antibodies killing them off. Fifteen minutes ago, she started a 10.5 hour infusion of IVIG (intravenous immunoglobulin). It should kill off the antibodies that are attacking the platelets. It is a powerful blood product, so she is hooked up to a million machines to monitor her for any adverse reactions. The nurse stayed in here to monitor her for the first 15 minutes of the infusion which is a quarter dose. She has now been bumped up to a half dose, and they will check her vital signs in 30 minutes. If all goes well, they will bump her up to the full dose, and then her vitals will be checked every hour for the next 10 hours of the infusion.

Apparently, there is a lot of variability in how many treatments it takes to get the platelet count to start coming back up. There is a chance we'll go home tomorrow if just one treatment does the job, but it may be more like two to five days in the hospital with an infusion each day. Fortunately, we caught this early, so her platelet count was not too terribly low. The normal range is 150,000 - 400,000. Hers was 47,000. The doctor here in the hospital said that many kids are admitted with counts under 10,000, some as low as 2,000. If the IVIG works, it will kill off the antibodies, but it may still take up to six months for her body to produce enough platelets to get her back in the normal range. She'll be followed closely by a hematologist to make sure her levels continue to go up. Her activities may be limited for a while until her platelet count gets to a point that it is safe for her do activities where she might sustain injuries.

Elise has been a real trooper through all of this. She was in good spirits with all the doctors and nurses and even when getting the IV. She fell apart about midnight though. She hasn't slept a wink yet and is simply exhausted. She is so uncomfortable with all the monitors. She is watching a movie now, so at least her body has finally relaxed. They gave her a mega dose of IV benedryl before starting the infusion, so I'm hoping she'll conk out shortly.

I'm having trouble keeping up with emailing people, so I'll probably just post most updates here. If you have any questions, feel free to leave them in the comments.  For all of you who have been sending us thoughts and prayers, thank you.

I'm going to attempt a little sleep, but I'll post again in the morning.

Simple Woman's Daybook, March 30

 

 

For Today...

Outside my window... it is bright and sunny - a great way to start the week!

I am thinking... that I need to get my dining room back to looking like a dining room instead of cookie central.

I am thankful for... my part time status at work. My one day home each week really helps me catch up on things around the house.

From the kitchen... mojito lime chicken on the grill, new potatoes, and a veggie of some sort. Perfect grilling weather today!

I am wearing... my usual spring attire - jeans, a t-shirt, and Target flip flops.

I am creating... hopefully a tidier house today.

I am going... to the Gap and Old Navy to do returns and to take Elise to the doctor to have a spot on her arm inspected.

I am reading... just People these days. Has anybody read the Book Thief by Markus Zusak? I'm thinking about starting that as it is the next book club book.

I am hoping... to get through my long to-do list today.

I am hearing... Addie munching on Cheerios and bananas.

Around the house... purging, purging, purging!!! One of our neighbors is holding a huge yard sale to raise money for the Foundation Fighting Blindness, so I've been purging like a mad woman and dropping off donations with them. I've gotten rid of clothing, my old bike that was buried under about 3 inches of dust, a playhouse, a toddler slide, books, and all sorts of odds and ends. It feels great to get rid of so much junk. I think I'll tackle some kitchen purging today.

One of my favorite things... headphones. We have a portable DVD player that we use on long car rides. We made the mistake once (one time was enough) of taking a long drive with a Dora the Explorer DVD and no headphones for the child. Never again. There is just only so much "Swiper, No swiping!" that you can tolerate before you're ready to drive off a cliff. We had a nice peaceful drive this weekend with both big girls plugged into High School Musical 3. The headphones have the added benefit of the child not realizing that you can hear them every time they sing. J.C. and I had a good chuckle listening to Nina sing along to the tunes! As a side story, when Nina got out of the car, she said, "My ears hurt." I responded, "Oh, from the headphones? Sorry." She said, "Yeah, my brain started to swell too, but it feels better now."

A few plans for the rest of the week....  chaperoning a field trip with Elise's class to a natural history museum, taking the kids to an egg hunt in the pool (yes, you read that right... IN the pool), and going to an egg hunt/cook-out at a friend's house.

Here is a picture thought I am sharing... too tall for her own good!

        

To read more Daybook posts or learn how to participate, visit The Simple Woman's Daybook.

Letter to Elise, 7.5 years

Dear Elise,

Technically, this is a 7.5 years, 1.5 weeks letter, but hopefully you won't hold that against me. Things seem to be a little rocky in your world lately. I'm not sure if it is the age, pressures at school, the approaching end of the school year, or just one of those phases. Every day we seem to ride your roller coaster up the mature, sweet, helpful hills and down into the sassy, bossy, emotional, drama filled plunges. This morning's meltdown was over a shirt that had gone through the washer and dryer with a sticker on it, and the evening ended with a saucy attitude that got you in trouble. Maybe you're just finding your way in the world. You're not a little kid any more, yet still so young. You're gaining more responsibilities but not much more independence. We'll get through it though. These ups and downs are all part of life.

School is going well. You're really loving reading now and learning to take advantage of quiet moments in the car and in the morning before breakfast to read your favorites, the Rainbow Fairy series, the American Girl series, and others you bring home from the library.

You just finished up a month of swim lessons and are still taking gymnastics. You have decided you would like to try cheerleading though, so we plan to switch to that soon. I think cheerleading may be a good fit for your personality, so I'm anxious to see how you like it. I have a feeling you will.

You are still very active in Brownies, and if you participate in too many more events, I'm not sure how I will attach the patches. Your vest is nearly full. You're learning a lot and having fun though, so I'll just have to get creative. You sold 332 boxes of cookies this year, surpassing your personal goal of 300, so you were proud of that accomplishment. I managed to survive as Cookie Mom for your troop this year which was practically a full time job. Maybe one day, you'll look back and remember with a little pride that your mom was the Cookie Mom one year. I remember my mom tackling the Cookie Mom role and our dining room filled with cookies, so I bet you will too.

You are thrilled about your upcoming trip to Texas where you'll spend five days alone with your grandparents, Jo Jo and Bubba. I know you're excited about swimming in their pool, going to the park and American Girl Bistro, but I also know part of the allure is the thrill of being old enough to stay there by yourself. What a great adventure!

 

The next few months will bring a lot of change - starting cheerleading, going to Girl Scout camp, going on your first trip by yourself, starting third grade... maybe part of the current struggles are a bit of anxiety about the future. I know you'll do great though. You always make change look so easy. Maybe we don't always see that there is a little anxiety behind the bravado.

I love you Elise! Thanks for 7.5 years (and 1.5 weeks) of fun and love!

Love, Mamma