Yes. This title. Weird. Confusing. Random letters. Is that someone's name? Maybe a last name? Is this an official diagnosis? "We don't know." "We're not sure when we'll know." "It seems like it'll just take time." "I'm not comfortable with waiting."
These are thoughts and phrases we've experienced in the last two and a half weeks.
On Monday, October 15th, Aaron left for a week long work trip. This would be my first real experience being home with the kids on my own for a week. I was geared up. I had a whole fridge and pantry full of easy dinners to make. I had my plan ready for where each kid would be on each day, I had a substitute job lined up one day, I had a couple different events I'd need to attend for my field experience. I was ready. On Monday night (technically early Tuesday morning), I woke on my own at 1:33am and thought "Oh, I'm just waking on my own. No kid needs me right now. I can handle this. I'm doing this. I'm really doing this!" I gave myself a motivational fist-pump and drifted back to sleep.
5:40am, I am awakened by "MOOOOOOOOOOOOOOMMMMMMMMMMM!!!!!!!! I have a bloody nose!" This was from Michael. I don't even realize it's 5:40 until after I've got him in the bathroom with tissue on his nose (and then I'm glad to see it's 5:40, because I was going to wake up then anyway). Aaron is my resident nose-bleed expert, and of course he was out of town. I tried to call him but couldn't get through. I called my mom next after I spent about 20 minutes trying to get Michael's nose to stop bleeding, and it just wouldn't. Aaron called me back and gave me tips to try (pinch bridge of nose, lean head forward, be still for 15 minutes, etc.), which I did with no success.
About an hour later, I ask my mom to come over. Michael's nose is not stopping. God's hand was on us this day, because Avery chose to sleep in that day, and Noah has a very strong stomach and isn't queasy around blood. After changing Michael's shirts three times while he stood in the kitchen with a nose bleed, I decided I needed help. So I called my mom and she said she was already heading out the door. Michael passed a clot the size of my thumb. I knew this wasn't normal.
While Michael stands in my kitchen in just his underwear, I notice tiny purple spots on his back and a bruise on his spine. This reminds me of the bruise I saw on his forearm just on Sunday and I asked him about it then and he couldn't recall obtaining a bruise in that spot. I ask him about this spinal bruise and he can't recollect falling or getting bumped in this location. My mom arrives. Michael says he has a tummy ache and needs to poop but is scared to go to the bathroom because he can't hold the tissue and use the potty. I tell him I'll come with him to hold his tissue. He and I get to the bathroom and as he turns around to sit on the toilet, he vomits black blood and clots. A lot of it. And then again. The horrors of seeing my child vomit blood in copious amounts will never leave my mind. I screamed "Mommy!!!!!!!!!!!" She came running down the hall, and I said "Call 911." She saw the amount of blood, said "okay," and ran to get her phone. As she's calling 911 and giving them our address (and telling them that Michael has Type One Diabetes and just got insulin for the piece of toast he had eaten 10 minutes earlier), I'm helping Michael get the trash can in front of him to vomit into some more. When he's done, I help him use the bathroom (he only has to tee-tee now), and I dress him in one of Aaron's t-shirts. I call the school to let them know that he won't be at school that day and that I won't be able to sub that afternoon. I would be lying if I said I completed that phone call without crying. The school staff was great-- they told me to take care of him and not to worry about anything else.
My mom called my mother in law to come get Noah and Avery (who was just waking up at that time).
The paramedics arrived. Michael's nose had stopped bleeding, so they taught me how to roll gauze and stick it into his nostrils if needed. They were concerned with his high blood sugar even though he had just thrown up and should've been exhibiting signs of a low blood sugar. They were concerned he'd go into Diabetic Ketoacidosis (DKA). They wanted him to be seen by his pediatrician or go up to Children's Hospital. They couldn't transport him to Children's, though. So I waived our right to ride in the ambulance to our local hospital, and we called our pediatrician to say we were coming there right away and needed to be seen. I sat in the back seat with Michael and held a bowl and lots of paper towels for him while my mom drove. My mother in law took Noah and Avery to her house.
At the pediatrician office, Michael passed a clot the size of a tangerine and then vomited more blood. The doctor did a complete blood count (CBC). They found that Michael had zero platelets. We knew we had to get to Children's. But they didn't want to send him without platelets. They told us to go to our local hospital (1 mile away) and get platelets and transfer to Children's via ambulance. We went to the ER and they got us into a room and started an IV, but couldn't do much else because they didn't have the right kind of platelets for him. Instead they summoned an ambulance and he and I were on our way in a lights & sirens ride to Children's Hospital. My dad had come to the ER and my mom was able to ride with him. My father-in-law came by and he drove my van to my house.
Michael, on a stretcher, and me sitting beside him with an EMT sitting next to me held on in the back of the ambulance while the driver rushed us to Children's Hospital-- usually an hour and twenty minutes away. We made it in about 45 minutes but it still felt like a lifetime.
My parents arrived an hour or so after Michael and I were put into an ER room. We knew we'd be admitted to the hospital, but it ultimately took seven hours before we were taken out of the ER. During these seven hours, we saw countless nurses, doctors, techs, etc. After the CNP tried to get Michael's nose to stop bleeding on three different occasions, they finally called the Ear Nose and Throat doctors down to pack his nose. This was the key to getting it to stop. It was nearly 4:00pm. He'd been bleeding for 11+ hours. We were told the next day that his nosebleed was the worst they'd ever seen at this hospital.
We were moved to a room, but were told that we'd most likely be moving again to be put on the Special Care floor (which is one step down from ICU). Sure enough, within 15 minutes we were being moved. I'm not even sure what specialty floor we were on to start off with before we moved to Special Care. I was told two days later that Michael was in critical condition for those first few days because of the excessive blood loss and the lack of reasoning for a nosebleed. Having been with him at diagnosis of Type One Diabetes, I knew why they didn't share these harrowing details with parents during those critical moments. They know we need to remain pillars of strength for our kids, so they withhold bits of information until our kids are out of the woods. They put Michael on a special IV med to start disguising his platelets from his immune system so that his platelets could regenerate. We will be receiving more of this medicine this week (you can only get it every 3 weeks).
They told us Michael would need a blood transfusion, but that his blood was showing an antibody and they couldn't find blood to match his. They reached out to the blood bank. No luck. They reached out to the American Red Cross. They found what we needed. It took until after midnight for that blood to arrive. We were never told if it came from in state or out of state. All we know is, it arrived just in the nick of time. By the time the blood arrived, the hematologists were frantic enough about Michael's blood levels that they started him on steroids to help him to produce blood. Steroids + Type One Diabetes = excessively high blood sugars. This meant we were coordinating with the endocrinology team to increase Michael's insulin levels to combat the rise in blood sugar. I was never so glad to be in the hospital where we could have multiple teams helping us out.
At some point, the hematologists wanted Michael to get a bone marrow biopsy to ultimately rule out leukemia. However, he cannot be on steroids while getting a biopsy, so we had to table the biopsy for now. Eventually, they still may do one just to completely rule out cancer. He shows no signs of leukemia, but they cannot in good faith tell a family that cancer is not an issue until they conduct this biopsy.
Two days after being on Special Care, we were moved to the Hematology floor where we worked hand in hand with hematologists and endocrinologists to determine a care plan. The doctors thought this might be idiopathic thrombocytopenia purpura (ITP), and later we'd hear the phrase "Evans Syndrome" thrown about as well. (Spoiler alert: the doctors still don't know what Michael officially has and we're told "time will tell us.")
Aaron arrived on Friday morning as we were being moved to this floor. Eventually, the hematologists were comfortable enough with our ability to care for Michael, and they discharged us on Saturday. They told us we'd be coming back to Children's for clinic visits weekly for about a month, then biweekly for about two months, then every other month for about 6 months. At each visit, they'd draw a CBC and see how his blood counts were doing overall.
At our first clinic visit, his red & white count returned to normal and his platelets were at 59 (normal is 140-400). At the following visit, his red & white count were normal, but his platelets had dropped to 26. They were too nervous for us to wait a week before being seen again, so we had to go back four days later. At this appointment, his platelet count was 29. They chose to do an IV med that is supposed to flip the switch in the immune system to stop his body from attacking his platelets. He had a reaction to the medicine within 20 minutes of the first increased dose in the IV. So we were unable to continue that medicine. We were sent home at the end of the day and told to try a pill version of a different medicine instead, and we were instructed to come back in four more days. We've had quite the time of trying to get this pill medicine, so we still don't have it and we're scheduled to be back at the hospital soon. Each clinic visit is a roller coaster. We don't know what his blood counts will show, which means we don't know what the hematologists will say, which means we don't know how many trips back to the hospital we'll be having in the next few months. I know to pack an overnight bag now, just in case we ever have to be admitted to the hospital during one of these visits.
I'll keep you posted as we know more. Thanks for making it to the end of this post!
Until Next Time,
Much Love, Reba
