Where do we even begin? When Brenden was about 12 months old we noticed he seemed to bruise very easily. What seemed like a minor fall or bump would always result in a black and blue bruise. He was "written up" almost every day at daycare, if not twice a day, for all of the marks that would show up on him while he was there. The bruises would show up almost immediately. This continued on and at his 15 month checkup we decided to just mention it to his pediatrician. She said it was probably nothing but they would do a platelet count just to be sure. They did a test on him that day and it came back with a low platelet result. The doctor said sometimes those tests could give 'false low' results so she wanted him to repeat the test in 2 weeks at the lab at the hospital.
So 2 weeks later we are at CMC-Northeast getting his blood taken a second time. Taking blood from a toddler is no easy thing, and my son apparently has uncooperative veins. So they stick him in one arm with no luck, then the other, then back in the first arm, then in his heel thinking they could 'milk' the blood into a vial, and finally they got the sample they needed from the top of his hand. I would personally be furious if someone had to stick me 5 times to get my blood, so you can imagine how rough it was on this poor little kid to go through that ordeal. We hoped this was the last of this issue as we'd noticed his bruising was starting to improve.
So about a week later we get a call from the pediatrician saying the count was still low and she wanted to do a more complete blood workup to rule out other possible issues/causes.
That brings us to present day. On Thursday we went to the pediatrican and they tried to get his blood. They stuck his arm but nothing would flow into the tube and he was left with a massive bruise. They stuck his hand.. still nothing. They suggested sending him to the hospital lab but we protested after the 5-stick ordeal he had to endure last time. We asked if he could go to the Childrens Hospital instead and they were able to arrange it to be so.
So we go there and they have a film crew there making videos to show internally at various hospital TV's they have set up in sitting areas and walkways showing patient/nurse interaction. So Brenden got to be filmed for the hospital network interacting with the nurse for pretend. Then we had to wait an ETERNITY for them to come back and do the real lab work. By then he was tired, hungry, and grumpy. They got the vein to flow in one stick but unfortunately didn't get enough blood so they ended up having to stick him a second time to fill the rest of the vials. Afterwards we took him to the cafeteria and let him pig out and then he passed out cold on the car ride home. Again, we hoped this was the last of the bloodwork we'd have to go through. We just didn't feel like anything was really wrong with him. He's so healthy and energetic.
Then we get to the nightmare of our day. My husband receives a call from the lab stating his platelets had dropped from 130,000 to 11,000 and normal should be 150k or higher. She even threw out the big concern 'his bone marrow isn't making platelets' and we were told to admit him to CMC-Main immediately to see the hemotologist. You can't even imagine how freaked out Sean and I were. When you talk bone marrow - you might as well say cancer. Neither of us would say it out loud, but we both feared thats what this was pointing towards. We cried and hugged a giggling, clueless Brenden and then packed him up to head out to the hospital and said a million prayers while emailing and texting family and friends to let them know we needed their prayers too.
We get to the Levine Children's hospital at CMC-Main and Brenden seems to love it there. He loved the big hallways and the nurses paying him attention. He showed off all of his tricks and even did some of his "push ups" for the nursing station. He cooperated for his exams and when we went through family history he would imitate Sean and I telling the nurse "no" and "yes" as she asked "is there a history of *this* in your family." He was such a great sport. Then they come to take his blood and also to put an IV line in him just in case he needed it. They spoke of a platelet transfusion. They took his blood - which took even the Levine Children's hospital specialists two tries to get a good vein. They ended up having to go in through his foot and they put the IV catheter line in there. The dr updated us that based on his bloodwork earlier - the platelets were the only thing they could find that were off. They said they felt like it was a case of ITP - a disorder where the antibodies attack platelets as well as germs. I can't tell you what a HUGE wave of releif went over us. No more talk of marrow issues! WHEW! They said they wouldn't do a platelet transfusion, but could do an IV med that would stop the antibodies from killing them if they dropped below 10k.
So later that night as Brenden is drifting off to sleep in his cozy hospital bed, the nurse stops by to say his count was 130k. This was great - but why was it SO low and now back up to 130K? Didn't make sense, but we weren't drs. We went to bed releived that he was doing better and eager to speak with the specialist in the morning. He slept like an angel that night. It took him a little longer to fall asleep and he woke up a little earlier, but slept through the night just fine - which was more than Sean and I could say. They just had one little bench-like sleeping area that we had to share - remember, I'm 5 and a half months pregnant too! - and though we found a way to fit, the surface was so hard it was impossible to get comfortable. Plus both of our heads were still swimming with questions.
We're up bright and early at 5:45 a.m. the next morning and Brenden was just as happy as could be. He wanted to roam the halls again and flirt with his new nurse buddies. He was at first apprehensive to walk with the IV catheter (this just being the "tip" of the IV, but wasn't actually hooked up to anything) in his foot but in about 15 minutes he got over it and was running all over the place. We had to shush him to make sure he didn't wake up any of the other patients. They had a wagon and Sean took him for laps around the floor in the wagon and he waved and talked to anybody that would listen. He was really a perfect little angel for us. We couldn't be more proud of how well he behaved.
Around 8:30 they come by to take another blood sample. They tried his hand but couldn't get anything and then were able to just lancet his finger and 'milk' enough blood into a tube to get the test they needed. Then the dr. comes into the room and tells us that a 130k platelet was low, but not hospital worthy, and there was no way that 11k was accurate and she would do the discharge paperwork. They still consider his 130k to be ITP as they want them 150k or higher, but obviously that was close enough to not be concerned. The bloodwork from that a.m. came back at 130k also. We were allowed to leave, keeping the ITP diagnosis since they are still low, and will follow up in 2 weeks.
We are very relieved that our little boy is okay and this was all a big mistake. I can honestly say there is nothing worse than thinking your child has a serious illness - especially one that could be life threatening. We are angry about the lab mistake, but we know based on what they thought was accurate, going to the hospital was the best course of action. We plan to follow up with the childrens hospital at CMC-Northeast to figure out what went wrong with the lab. Aside from the emotional trauma this ordeal caused, we also endured a $150 copay for the hospital stay. Brenden got a sippy cup at the hospital and we now joke that is his most expensive $150 sippy cup!
We definitely hug our little B a little bit tighter these days and he's gotten just a tad bit spoiled lately, but we figure he's earned it! He is such a wonderful child and little moments like this just make you realize you can't take a moment of their precious lives for granted. We are so lucky to have him. I instructed him that he's NEVER allowed to scare Mommy and Daddy like that EVER again!!!
I want to thank everybody who prayed for us and checked in and offered to help us out. We really appreciated everybody pulling together to support us through this. Its good to know we are surrounded by so many loved ones!
Here are some pics of our brave boy:
Waiting for the nurse to come and exam me
