Oh boy! Where to start? We’ve been busy over here, discovering and navigating some heath issues.
[Excuse the poor grammar and lack of full sentences. Much of this was entered cliff note style into my phone as it was happening.]
A few weeks ago, I took Kaylee to her pediatrician for excessive/unexplained bruising. We’ve done this before when she was 2 and the diagnosis was honey badger. She actually had 2 blood draws done that time, 9 days apart. After the first one, they called back and asked us to come in for a second. When the second one came back fine, we didn’t question it. I took her in this time expecting it to be fine but wanting to do our due diligence because she has woken up with new bruises which is obviously not normal. Her appointment was at 2 and she had bloodwork done at 4. Milkshakes after that for being brave! The doctor said that he would call me in a day or two with the results.
I was at a co-op meeting at 6:30 when an on call doctor called me and said “Kaylee’s results are critical and you need to take her to the ER immediately.” With a little pressing from a then frantic mom, he further explained that platelets should be 150, kaylees were a 3. Not 30, not even 13….3. I rush home, grab bare essentials for Avery, drop her at a friends house, and get Kaylee to the ER. In the 45 minutes it took me from getting the call to arriving at the ER, I received 3 calls making sure I understood and was bringing her. Nothing strikes fear in a mother’s heart like that does.
Once in the ER, they take more blood, more urine, more labs. And then we wait. While waiting, Dr. Mom consults Dr. Google. Eventually an actual doctor confirms that they suspect Kaylee has something called idiopathic thrombocytopenic purpura (itp). Only the first of many times I’ll hear those words and initials in the coming days.
Our local hospital doesn’t have a pediatric icu so they then tell me that Kaylee needs to be life flighted to Phoenix Children’s Hospital. 2 ambulances and 1 fixed wing plane ride later, we arrived at PCH (only slightly disappointed that we didn’t get to ride in a helicopter like daddy flies in!).
It’s important to note that Kaylee feels fine all along. She is her normal happy, smiling self. At one point in the local ER, she looked at me and said “so what? Do these people think I’m sick or something?” She wasn’t sure what all the fuss was about.
More pokes, more labs, more fussing. We finally get admitted to our room on the hematology floor around 2 am. Because there was no active bleeding, they let her rest and just observe through the night. The morning team will then decide treatment.
ITP usually happens after an illness (cold, flu, etc). You make antibodies to fight that infection but somewhere the wires get crossed and those antibodies start attacking your platelets and killing them off. In those cases, it is usually a one time thing and never happens again. Because Kaylee has had bruising issues before and has not recently been sick, hers may be a recurring case. We mostly just have to wait and see.
ITP is also a diagnosis of elimination…..they think its ITP so they will treat it as such for now. If that treatment doesn’t work, then they’d look at other things. The treatment is IVIG, iv-immunoglobin. The doctor was very honest that they dont know how or why it works but that 2 rounds of it usually works. So day 1, they would give her round 1 (a 6 hr treatment) and then recheck her levels the next morning and start round 2. Assuming everything went well up to that point, we could be discharged after round 2 and would return to PCH in a week to check levels again.
Kaylee tolerated round 1 with no issues (premedicated with zofran). Other than all the needles, she is having a mini vaca…all kids movies at her fingertips, a kid loaded ipad, coloring books, a playroom, a superhero cape, room service! Oh to be 4 and be excited by all this instead of a nervous wreck like mom!!
Kaylee responded great to the first round with her numbers rising to 41! This was so great that they didn’t think she needed the second round. So they will discharge us and have us come back in a week to make sure her numbers are rising. Best case scenario, her numbers continue to rise and we make weekly/biweekly visits to Phoenix to monitor her numbers. Once they reach the normal level, we would then make a few monthly visits to make sure they stay up.
Despite being a honey badger, she is such a sweet, caring soul. Her first couple meals at the hospital, it didn’t go unnoticed by her that I didn’t get anything except coffee. Every meal, she was asking me “mom, what did you order? What are you going to eat?” Who is taking care of who here? And every time we laid down, even though it was her who had ivs and needles and wires all over, she would ask “are you comfortable mom?” My sweet, sweet girl.
On her first follow-up visit, her platelet number surpassed the normal range! The doctor explained that it was likely that the hospital treatment made her body realize it was doing something wrong and so it overcompensated to fix the problem. She was confident that the numbers would level out.
After all of this, we were able to track down her blood draw results from 2 years ago. The reason she needed to get the second draw was because her platelets were low the first time. Not critically low but definitely below normal. By the time of the second draw, her numbers had risen on their own. If only we had known, if only we had more information and more details, maybe she never would have gotten to this critical point. Coulda, woulda, shoulda.
She is still our happy girl and now that her condition is being monitored properly, she is our healthy girl too!