House of Estrogen

If You've Ever Wondered...

...what it might look like to get stung by a bee on your eyelid, now you know.

  

 

Doing the Happy Platelet Dance

Elise's platelet count was 173,000 today... way up there in the normal range! She can clot with the best of us now!

Sweet, Sweet Platelets!

91,000!  Still not up to the normal range (150-400K), but it is a huge leap from the 35,000 count Elise had just two days ago. We don't know exactly what is causing the yo-yo count, but at this point, we're just thankful for the higher number. Now she can safely participate in most activities she would like to do without fear of bleeding and bruising issues.

We can already tell that dealing with ITP is going to be an ongoing roller coaster ride as long as it lasts. We're probably dealing with some type of chronic ITP, and we'll just have to ride the ride and see where it takes us for a while. There are several treatments available for when her counts dip below 10,000, and some of the tests run today will help the doctors determine which ones will work for her.

For now, we're going to enjoy the nearly 100K count, get her platelets checked weekly, and continue keeping a watchful eye out for bruises, nosebleeds, and gums bleeding.

Thanks so much for all the notes, emails, calls, and well wishes. Her body seems to be pulling the platelets back up on its own this time, and time will tell where we go from here.

A Little Update

Regardless of why your child is being treated or what the issue is, I have to say it really sucks to go to the university cancer hospital, to the pediatric oncology clinic, and walk through the chemo infusion area. Really. Sucks. I know I should be thankful it isn't my child sitting in one of those chairs, but it has still been a hard, emotionally draining day regardless.

We're still here, waiting for the numbing cream to numb her arm, so she can get her blood drawn.

Everyone has been really nice, and the specialist we saw was great.

Assuming her blood counts are no worse than the past couple of days, they are sending us home to "watch and wait". She'll get her blood drawn once a week to see if we can establish a pattern and figure out what direction her counts are going.

They are taking additional blood to rule out auto-immune disorders, but they still feel pretty confident we're dealing with ITP. The doc said that he doesn't generally treat until a child gets down closer to 10,000.

He said no trampolines, no contact sports, no ice skating, etc. when her counts are low. As for things like swimming and jungle gyms, he was hesitant and said she could do them calmly when well supervised. This will definitely be an adjustment.

A bone marrow aspiration may be in her future because the information gleaned from that could help determine the best treatments to use when her counts are really low, but we're holding off on that for right now, pending a few weekly blood draws. 

So, that's where we are... likely going home to figure out how to lead a normal life with low (but not dangerously low) platelets. Obviously, if the results from this blood draw are much lower than we're anticipating, we'll have a change of course and go forward with treatment. We're not expecting that though.

Is this all good news? bad news? Dunno. Still absorbing it all. It is what it is.

A Few Questions Answered

I've had a few questions since yesterday, so I thought I'd try to answer them.

1) If Elise's ITP is chronic, what does that mean? What sort of treatment will she need?

We really don't know yet. I know some of the treatment options for chronic ITP are IVIG, WinRho (another blood product), steroids, Vincristine (a chemotherapy drug), and splenectomy, among others. Some doctors also take a watch-and-wait approach to see if the body will go back to a normal platelet count without treatment.

2) How does she feel?

Fine. It isn't like anemia where she would feel weak or sick. She feels perfectly fine, so she has NOT been happy about missing camp this week. If she has to get IVIG treatment again, that is when she will start feeling bad.

3) How did you know the ITP was back?

She came home from camp Tuesday with a big, honkin' bright purple bruise on her knee. It was a really brutal looking bruise that should have accompanied some terrible injury. When we asked her about it, she said that she slipped and fell on a hike but got up and kept going. She said she didn't cry, and it didn't hurt too much. The description of the injury clearly didn't match the bleeding of the bruise. She also had a few small bruises on her elbows that weren't suspicious on their own, but when coupled with the knee bruise, they didn't look totally normal. When we looked her over, she also had a little bit of petechiae on her back near a small bruise. None of it would have sent us to the pediatrician if it weren't for our hypersensitivity to bruises ever since her first bout with ITP.

4) Could it be leukemia? (OK, so nobody has actually asked that one specifically to my face, but I know it is floating around out there, so I thought I'd address it directly.)

All indications point to no. Her red blood cell and white blood cell counts have been normal with every blood draw. The doctors do still feel we are dealing with ITP. They are just puzzled by the presentation, so they would like her examined more fully and treated by a specialist.

5) Why did they send you home? Shouldn't she be in the hospital with that low of a platelet count?

The real "danger zone" for a low platelets is a count under 10,000. That's when you have a serious risk of cerebral hemorrhaging. At 30,000-50,000 where she is, she has been given instructions to avoid any sport or activity where she might get injured, but she's not in any serious danger just hanging out here at home with us. Bored, yes. Bleeding internally, no. She will definitely deal with bruises and nosebleeds at this platelet count, but as long as she isn't doing anything too crazy, we don't need to worry too much (or so we've been told. We still worry though).

6) Will she be admitted for treatment tomorrow?

We don't know. If the doctor wants us to do a watch-and-wait to see how her counts move, then we may just come home. We are certainly preparing for an overnight stay with treatment, but we don't know anything for sure yet.

Change of Plans

After spending all day in the hospital, Elise is being discharged. The doctor here would like her to be seen by a hematologist at the big university hospital. Elise is having mixed feelings. She is excited about the wheelchair ride out to the car but bummed about not sleeping in the cool adjustable hospital bed. Oh, to have the view of the world of a seven year old! I'm having mixed feelings too but obviously on a different scale. It feels great to be going home and not facing a night of IVIG treatment and its nasty side effects, but it also feels like we're just delaying the inevitable. The decision to send us to a hematologist is rooted in the feeling that her ITP is not presenting in a typical way. It has not been a one-time acute event nor has she continued to have an ongoing low platelet count as would be expected for chronic ITP. In a word, they are stumped. Where is Dr. House when you need him?  I'm trying not to worry too much, but I'm not making great progress with that.

They are working on her discharge papers now, so I'm sure that means we'll be here another three hours. Gotta love hospital efficiency.

Déja Vu

This all feels like déja vu, and I'm not liking that one bit. I'm sitting here in a hospital room once again, just like I was five months ago with Elise in the bed next to me with a platelet count of about 30,000 (normal is 150,000-400,000). Her ITP is back, so back in the hospital we are for more IVIG. Elise is in good spirits. She went by the playroom and picked out a movie, two craft kits, and a bunch of coloring stuff, so she is happily entertaining herself. I've decided she must have NO memory of how horrific the side effects of the IVIG were last time. If she did, she most certainly would not be so chipper. She remembers oddball things like how the nurse told her that boys tend to cry more than girls when getting IV's. She remembers eating in the cafeteria one day when Nina was visiting. She remembers that IV's are much less painful when numbing cream has been applied first. I truly think she does not have any memory of the excruciating headache that had her writhing in pain, or the vomiting that wouldn't stop, or the CT scan to see if she had bleeding in the brain. Unfortunately, those are all the parts etched in my memory.  I guess that's the beauty of the human mind.. the ability to block out those memories. I'm glad her brain has worked to protect her. I could use a little of that myself though.

Anyway, here we are. She has the numbing cream on her arm and is waiting for an IV. We've seen numerous nurses and nurse practitioners but no doctor yet.

The big question at hand is whether this episode is just a recurrence or continuation of her prior ITP or whether this is now the indication that she has the chronic version of the disease that will need ongoing management and medication. Right now, we don't have an answer to that.

Tubes are In

Anybody know an ENT who gives a bulk discount rate on tubes surgeries? I really think we qualify. Today was tubes surgery number six for the House of Estrogen girls, and it was Addie's first trip to the OR. She did great in pre-op even though the doc was about a half hour late to arrive. She stayed entertained by nurses blowing bubbles, giving her crayons, and blowing up rubber glove balloons. When it came time to wheel her away, we had hoped for an easy separation since she had been given Versed to make her a little drunk prior to surgery, but the small dose had been given 20 minutes before the scheduled surgery time, not 20 minutes before the doctor's arrival. I think it had lost its efficacy by the time the nurses walked off with my screaming baby. Oh well... not much we could do at that point. After five minutes in the waiting room, the doctor came out to tell us he was done, that her ears were full of fluid, and tubes were definitely needed. It is always nice to have a decision confirmed like that.

 

 

Post-op did not go so well. We were prepared for a "cranky" baby. We've experienced that before, and that was what the nurse told us to expect. We were not expecting an all-out, throw-down, screaming, back-arching, inconsolable frenzy of epic proportions.  We never did get her calmed down. We finally just left, hysterical baby in tow. JC said to the nurses on the way out, "She's blowing kisses on the inside!"  (Somehow I doubt that... more like giving them the finger!)  She screamed half the drive home and then finally managed to calm herself down. She slept for three hours when we got home, was up for a couple, and is now down again. Hopefully by tomorrow, the anesthesia will be totally out of her system. It clearly didn't agree with her! Despite a rotten day, we're thrilled to have the tubes in!  I just hope they stay in a long time, so we don't have to do this again with her any time soon.

Disappointment

Tomorrow morning at a crisp 5 a.m., we were supposed to be heading to the hospital for Addie's tubes surgery, to hopefully put an end to ear infections, fevers, and pain, and potentially improve her hearing and speech. We were geared up and ready. We had childcare set up for the older girls and had arranged the time off of work. However, after Addie's three full days of non-stop high fever (due to what else of course... ear infections), the ENT made the final call this afternoon saying we have to postpone. It is such a disappointment. Hopefully we can reschedule soon, but it is still a hard pill to swallow that it won't be tomorrow. The poor girl has been so sick though. I know it is for the best. She doesn't need surgery slapped on top of an already awful week. Sick toddlers have to be the most miserable bunch of sick people. Babies are pitiful when they are sick, but at least they will lie on your chest and sleep it off. With older kids, you can say to them, "I know you feel rotten. You'll feel like this for the next few days, but if you sit here on the couch with a popsicle and a TV remote, you'll get through it." With toddlers, they just don't get it. They attempt to go about their normal routine of walking, running, climbing, banging pots, throwing keys in toilets, and dragging toilet paper around the house, all the while whining and crying in an attempt to make you understand how miserable they are. You can say to them, "I've given you Tylenol, Motrin, antibiotics, juice, food, Elmo, and hugs. There is NO MORE I can do", but they still don't get it. They want you to fix it, but you can only fix so much. Poor Addie whined and cried all day long. I really hope we can get this surgery scheduled before another ear infection hits. I'm not sure how many more either of us can stand!

A Thank You to Dr. M

I have been reading the blog 6YearMed, and this recent beautifully written, moving post, Fault Lines, brought memories flooding back to me from 3 years ago when my two year old was the one in distress.

It was the night before Nina's second birthday party, and the Dora the Explorer decorations, games, and cake were ready for the next day's festivities. In the middle of the night, she woke up with croup. We know croup. We're experts in croup. Nina has had croup more times than I can count on one hand. If I include Elise's croup episodes in the numbers, I'm probably counting on toes. We can do croup. We each know our roles and perform them flawlessly as if dancing a well choreographed pas de deux. I race outside with the child to get her in cool air while JC starts the shower runnning to steam up the bathroom. When the bathroom is ready, I run the child upstairs to him, and then I heat up apple juice for her to drink. We are a well-oiled machine when it comes to croup. We know what to do, we know how to treat it, and along with that knowledge, we also know when it is time to head to the E.R. This was one of those times. Things were bad. I knew in my gut this was not like a croup episode we've ever experienced in the past. We needed to go NOW.... no call to the pediatrician's advice nurse to ask her opinion, no steamy bathroom. We needed to go. We needed to go fast. I've always been the one to do the middle-of-the-night asthma or croup ER treks by myself, but thankfully, that night, my mom just happened to be in town. JC was able to go with me. In the past, I had always driven to the pediatric ER. I would drive past two closer hospitals to get there, but it had always seemed like the best choice. That night was different.  Listening to her struggle to breathe, I knew we needed to change course and stop at the closest ER.

My past croup ER visits were all similar - the child's breathing would improve as I drove with the windows down, and by the time I would arrive at the ER, she wouldn't sound nearly as bad. I often contemplated turning around but knew that a shot of steroids was in her future at some point during the night, so it made sense to stay anyway. That night was different. She was no better. She was worse. There was no sitting in the waiting room that night. She went directly from triage to a room where they started to work on her. I just held her and cried - grateful to be in the hands of these doctors with whom I had to put my all trust that they could help my baby. They put her on oxygen, gave her racemic epinephrine, and told us, "Now we wait to see whether the racemic epi works before her airway closes completely." WAIT? WAIT??? Seriously? We wait? Surely there is some better solution than WAITING!! Dr. M. explained that if her airway closed, they would insert a tube in her neck and breathe for her. JC was oddly comforted by this.  He found peace in the fact that they knew what the next step was and were ready to act if she stopped breathing. I can't say I felt the same. As JC held her limp body, yelling at her "Stay awake, Nina!!! Stay with me, Baby!", and she seemed to drift in and out of consciousness, I just hoped and prayed that the medicine worked faster than the airway was closing. I was literally putting my heart and soul into the hands of this doctor, depending on him to know what to do. Dr. M. was so kind, so caring, and so calm through all of this. His soothing demeanor helped us to stay calm. Eventually, the epinephrine worked and her airway opened back up, only to go through a rebound effect a few hours later when we went through the whole nightmare all over again. He got us through it all though. Dr. M. was my hero that night. I have no idea whether he felt like one or whether this was just all in a day's work.

Nina was admitted to the hospital the next day. When Dr. M. came back on duty in the ER the next night, he called her room to check on her. Now that's a doctor with heart. He was still thinking about her and cared enough about her to call for an update. I owe that man my deepest gratitude for treating Nina that night. He treated her (and us) with such kindness and compassion.

To Danielle at 6YearMed...you said you didn't deserve the grace given to you by the parents of the baby you treated, but I can say without a doubt that you and your team were heroes to that mother that night. Any kind words she managed to say to you probably did not even begin to express the appreciation she felt.  Words are so hard to capture when your heart has just been restarted.