Last week our V was admitted to Cleveland Clinic Children’s Hospital to treat Immune Thrombocytopenic Purpura (ITP) – a disorder that can lead to easy or excessive bruising and bleeding due to unusually low platelet levels. Though not an uncommon occurrence in children it was still a scary experience that luckily we came out on the right side of. Below are all of the details of our experience. We are so fortunate this has gone our way thus far and that we were able to have the flexibility in our work schedules to tackle this as a family.
Sunday Feb. 15th
- Afternoon – Our little guy went down for a nap (not without a fight) and woke up with a rash on his face.
- PM – We were giving DV a bath and noticed that he had quite a few bruises on his legs. He’s an active toddler so some bruises are common but he seemed to have a lot.
Monday Feb. 16th
- AM – The curious rash on V’s face didn’t fade at all overnight so we looked a little more into it. The rash looked like he had been pricked by a bunch of pins which was unlike any other rash we’d seen on him to date. That said, we’re first time parents and he’s only been around for 17 months so there are a lot of firsts. We Googled the rash – it looked more like petechiae – and were met with potential diagnosis information that ranged from nothing to cancer. So we decided to make an appointment to be sure – joking that the doc would wave it off as nothing.
Tuesday Feb. 17th
- AM – We chose to see DV’s pediatrician because he had an opening in the morning. My husband took V so that I could get to work because I had another appointment early afternoon. At first our pediatrician didn’t think much of the rash but by the end of the examination he’d requested that DV have blood work done. My husband said V did amazing with the blood draw – he didn’t even cry!
- PM – That night we got a call form another physician in the practice with the results. Though all of V’s other counts looked good, his platelet count was at 25,000. It should be around 150-450,000. We were told to bring him to the lab on Monday for another blood draw to recheck V’s levels. In the meantime we were told ‘Don’t throw him off any cliffs and you should be fine until Monday morning. If he develops a new major bruise before then bring him in earlier for a blood draw.’
Wednesday Feb. 18th-Sunday Feb. 22nd
- We had a nerve-racking week and weekend as we waited for Monday morning to arrive and DV’s next blood draw. We inspected V’s body every night to ensure that he didn’t have any other spots of rash or bruises. It was a buzzing underlying worry that followed us through the week as we played the waiting game.
Sunday Feb. 22nd
- PM – As we were doing our new routine bedtime inspection we noticed some more areas of rash on V’s bottom that hadn’t been there before – not a good sign.
Monday Feb. 23rd
- AM – We woke up in the morning to fresh rash spots on DV’s face – not good. My husband took him to have his blood work done, they pricked his finger this time to take the sample. Shortly after lunch I received a call form my husband. Daycare let him know that V’s finger didn’t stop bleeding until midday and they had to change his bandage a few times – also not good.
Afternoon – I received a call from our pediatrician around 4PM. DV’s blood work had come back and his count was at 7,000 – anything below 10,000 you’re at risk of internal bleeding – we needed to pick V up from daycare and take him to Cleveland Clinic Children’s Hospital Hematology/Oncology department. They were expecting us. We should pack a bag and plan to spend a few nights.
- I was in a meeting with one of my direct reports working on our first client agency summit presentation for Thursday when I took the call. I held it together to listen to the instructions from the pediatrician and take notes but as soon as I had to relay to her what was happening I broke down. This wasn’t a complete surprise, we had quite a few signs that cropped up that morning pointing to this outcome but it doesn’t make it any easier to hear.
- I called my husband, gathered my things, shot an email to my team to let them know why I was leaving because I couldn’t tell them without crying and walked out the door.
- When I arrived home my husband let me know that V had come home with another bruise on his back, he said it was pretty ugly and that I may not want to look at it. I did. It was. I almost wished I didn’t.
- PM – We arrived early evening and went through admissions. We were set-up in a room and awaited visits from the medical staff. V loved being examined by everyone. He was a complete chatter box. I think he secretly delighted in being up hours past his typical bedtime.
Diagnosis – Immune Thrombocytopenic Purpura (ITP), an unexplained destruction of his platelets by antibodies produced by his own immune system.
Treatment – IV steroids and immune globulin (IVIG)
- Late PM – At 10:30PM they put an IV line in V’s foot (because he’s a hand kid – sucks his fingers, holds his ear for comfort – they decided foot was best for the IV). Dad held him, he cried, I tried not to pass-out. After that he was both hooked up to a bag of steroids and dosed up with some Tylenol and Benadryl he was understandably exhausted and fell right to sleep. We put him in the crib and covered him with a blanket from home.
- The nurse, who was amazing, began the IVIG around midnight. To do this she had to constantly monitor his vitals. While V was sleeping she adeptly attached 4 stickers to his chest and belly, a cuff on his leg and pulse ox on his foot so that she could run tests without waking him.
- He woke up a few times, once at 2:30AM and once at 5:30AM and he was able to get right back to sleep (after a little snuggle in his Dad’s shoulder). He was done with all the IV’s after 5:30AM and we all slept until the nurse shift change at 7:15AM.
Tuesday Feb. 24th
- AM – We threw a sock over V’s IV port and took him down to the cafeteria for breakfast where he ate approximate 2/3 of a pound of pineapple and strawberries as well as some Chex cereal. He LOVED hanging out down there and seeing all of the people. When we got back to our room breakfast had arrived – he proceeded to drink milk and eat waffle sticks. Clearly he had not lost his appetite!
- After breakfast our friend, who is a dietitian at the Clinic, dropped by between her meetings to say ‘hi’. V loves visitors so he quickly cuddled up in her arms after playing in his crib with a few balls we brought from home.
- After our visit, I took DV down to the 3rd floor to look at the fishes in the aquarium. We also checked out the playroom which was awesome. He loved getting out and about. I’m so thankful that he had the IV’s overnight because I’m not sure how we would have kept him still!
- We had a blood draw late morning to check V’s platelet levels which lead to a midday snooze for the little guy.
- PM – After lunch the nurse let us know that V’s platelet count had rebounded to 31,000. With this positive response to IVIG and the stable platelet count we received great news from our doctor – we were being discharged!
Wednesday Feb. 25th
- My husband and I arranged our workday so that we could stay home with V rather than sending him to daycare. I took the morning shift and he took the afternoon so I could head to work and practice my presentation for the next day.
Thursday Feb. 26th
- AM – My husband took V back to Cleveland Clinic Children’s for a blood draw and immediate results. V’s platelet count had rebounded to 160,000. I was half way through the morning session of my day-long client meeting when I got the good news via text. (Thankfully the morning session was held in a large auditorium and I could stealthy yet obsessively check my phone!)
The Game Plan
We’re not completely in the clear but things are looking great so far. We have to follow-up one time per week for the next three weeks with blood work, fortunately we can have V’s blood drawn at the medical center down the street from where we live.
If everything keeps looking good for the three weeks we will meet with the Hematologist again at Children’s to determine the schedule of blood draws for the next few months.
What I Learned
- My husband and I did well in a crisis situation. We calmly put a plan in motion and did what needed to be done. We worked well together as a team facing the unknown.
- I already knew he was an amazing Dad but he truly cemented his status. V is a Daddy’s boy right now and definitely needed him for comfort. He was calm, collected and extremely attentive to his little boy.
- We’re beyond fortunate for our health, and that of our little guy.