So in my last post I mentioned that my son was super-sick. I never imagined it would lead us down the path it did, but here we are with a diagnosis of ITP- Idiopathic thrombocytopenic purpura (ITP) is the condition of having an abnormally low platelet count (thrombocytopenia) of no known cause (idiopathic) As most incidents of ITP appear to be related to the production of antibodies against platelets, immune thrombocytopenic purpura or immune thrombocytopenia are terms also used to describe this condition. Often ITP is asymptomatic (devoid of obvious symptoms), however a very low platelet count can lead to visible symptoms, such as purpura (large bruises), or more seriously, bleeding diathesis.
The twinadoes family birthday party was on Sunday, 5/8. That night my husband was dressing our son for bed and gasped when he pulled down his pants to put his jammies on. His lower legs were COVERED in tiny bruises. It bothered me, but I thought maybe he had just been playing especially hard and repeatedly hitting that area while climbing all over the swingset. The next morning, we were getting ready to walk to the library and he came out of the bathroom and showed me the "big purple spot" on his inner elbow. I knew right away this was not normal. Bill had stayed home from work that day because he didn't feel well. While I called our ped he began looking our boy over more closely. They asking me to look for a red pinpoint rash somewhere on his body, which we found under his left arm. They advised me to hang up and take him to the nearest ER. Luckily, I didn't have time to google anything, otherwise I might have self-diagnosed him with something much worse than ITP.
We headed to Hillcrest since they have a peds ER and after some bloodwork, the ER doc came in and calmly asked Nolan how he'd like to take an ambulance ride downtown to main campus. Luckily, I was sitting down, otherwise I might have passed out. I got a little light-headed when he mentioned his platelet count was extremely low. 11,000. Normal is 150,000-450,000. He quickly pointed out that all other numbers from the blood counts were normal. I had no idea at the time, but he was telling me he was ruling out leukemia. Even typing that just now, I get teary-eyed.
The lifeflight crew swept into the room, literally 4 people in black jumpsuits plus 2 other hospital personel came into the room and started firing questions about what was going on and explaining what was going to happen. And the most important question, what DVD did the boy want to watch in the rig? Th (He picked Thomas.) They couldn't have been nicer to us and really helped calm my nerves for (what seemed like) the endless ride to Cleveland Clinic Main.
We walked onto the floor at M20 and I quickly saw the signs "Hemotology/Oncology." Just 24 hours before that we were opening presents and signing Happy Birthday. How was this happening so fast? In hindsight, I've glad it happened that way and not a long drawn out diagnosis which I would have had no patience for.
Within 4 hours, he was getting his first dose of medicine, IVIG. He slept through it. I did not.
The next morning, a Child Life Specialist came into our room to talk to Nolan about how he wanted to celebrate his birthday. Oh yeah, did I mention that it was now Tuesday, May 10? My twins 4th birthday. I hated that I wasn't with my girl when she woke up and that he and I were in the least desirable place to be on your birthday, but you know what? I was wrong. Miss Sarah did everything she could to give my kids a proper birthday. The plan was that we would be in the hospital another night, so my hubby, mom, and daughter were on their way down. The boy's labs came back shortly before they arrived and the doctors were impressed enough with the result to let us check out. No typical boy rough play, no bike, no trampoline. No fun, but we were still going home to be together.
I figured the party would be cancelled, but I was wrong. They waited for everyone to arrive and then they brought in the cake, complete with candles and three gifts for each kid. I cried. We had only been there 1 day and they did this for us. I'm sure, on that particular floor, there are kids that celebrate a lot of holidays & milestones in the hospital. It made me so thankful that these people are there to do what they do.
We'd quickly learn that ITP is a roller coaster and as quickly as the platelet count went up, the would go down as well.
One week later, we were back downtown in the hemotology/oncology outpatient clinic. Nolan's counts were back down to 18,000 after peaking at 67,000. They were going to try a different drug, WINRHO. Getting the IV in was tricky. Hell, it was awful. Three sticks, screaming, and tears by a lot of people and finally it was in. The medication only took 30 minutes and we were on our way.
Three days later his counts rose to 203,000. Now the trick is keeping them there.
There will be bloodwork and more bloodwork in his future. We just pray that his numbers stay up and this is an acute case and in 6 months it will be another page in his baby book. He deserves that, the little guy hasn't had the easiest road, but he takes almost all of it with a smile.
If you take anything away from this, please donate blood. You don't think about it until you need it. I know I've driven by countless Red Cross signs and always say I'll do it next time. Someone needs that blood and its byproducts. Now.
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