Jonny's Platelets

I haven't attempted to write this post prior because the thought of wording what has happened to Jonny in the last two months exhausts and (to be honest) depresses me a little. I need to write this though for my records, so here it goes.

Wednesday, April 6th, I took Jonny in to see his pediatrician. I had noticed some bizarre bruising and tiny red dots forming all over his body. One look at Jonny and Dr. Rios was ordering lab work and giving me instructions of what to do next. "We will need to have some blood tests taken and I will call you personally when the results are in. Until then, Jonny is not to do anything, If he bumps his head or starts to bleed anywhere, you need to immediately call 911 and get him to the Hospital." WHAT?!

Three uneasy hours later the call from Dr. Rios came confirming what he had expected. Jonny's platelet count was dangerously low.


* Jonny was diagnosed with ITP( idiopathic thrombocytophenic purpura) a bleeding disorder where the immune system starts attacking the platelets. A normal platelet count is anywhere from 100,000 to 300,000. Jonny's count had dropped down to 4,000.  We have no idea why this happened. The risk was that if he started to bleed, his blood would not be able to clot and there would be no way to stop the bleeding. Also, there was concern that he could start internally bleeding at any moment.


I dropped off the other boys at Aunt Heidi's while Trevor and Jonny checked in at the Hospital. That first night Jonny was monitored carefully and we waited to find out what would happen.

In our hospital stay, Wednesday-Monday, the days were full of both sadness and gratitude.

First the sad moments:
* Thursday morning Jonny had a nose bleed. It was not a normal dripping nose bleed, but rather a constant flow of blood from his little nose. I panicked. The nurses, pediatrician, and eventually, ENT doctor tried for three hours to stop his nose bleed. Three hours. Because of the loss of blood, Jonny's hemoglobin level dropped quite a bit and for the next several days he pooed nothing but blood.

* We were told that 90 something percent of all children have a positive reaction to the insfusion treatment that was given to Jonny. We felt confident that Jonny's platelet count would rise and we'd be on our way to recovery. When we got news that the treatment had no effect on Jonny's platelet, I was beyond discouraged and had my first of a few meltdowns.

* During the second round of infusion, Jonny started complaining about pain in his arm where the plasma was being pumped. I looked over and saw that his arm was blowing up like a balloon. The IV had infiltrated (the vein had burst) and the IV had to be removed. We were immediately sent to the "poking room" where several nurses tried for two hours to get an IV back into Jonny. I can not put into words how hard those two hours were. (At the risk of sounding dramatic) Probably the hardest hours of my life. I held Jonny on my lap while three other nurses held Jonny down and another nurse (their best in the Hospital) poked and prodded all over Jonny's little body. Every time they would get the IV into a vein, it would burst. Jonny screamed and flailed and cried and pleaded for two hours for them to stop. I sobbed for two hours. It was more than I could handle.  Finally after some serious praying on everyone in the room's effort, they were successful and we started the transfusion over.

Gratitude moments:
* The amount of times that Jonny was poked by needles was ridiculous; however, after every poke Jonny was taken to a room filled with toys where he could pick out any toy to take home with him. I let him choose whatever he wanted, including swords, laser guns, pirate patches, drills, games, oversized mickey mouses... the list goes on.

* The nurse staff was incredible. They were so friendly with Jonny. They took him on wagon rides, brought special toys and played in the room with him. They were so kind to Trev and I as well. After the IV incident a group of nurses insisted on taking me down to the cafeteria for some food. They often offered to watch Jonny so Trev or I could step out of the room for a moment. They cried with me (in the poke room), answered every question or concern I had, and several of them came to say goodbye when we were discharged.

*Both mine and Trev's parents were ready to hop on a plane and come to help with the other boys. My parents ended up making the drive and we were beyond grateful for their help. They were such a blessing to us.

 *The ward was absolutely wonderful. I remember coming home one evening from the Hospital and my fridge and cupboards were full of meals. Muffins for breakfast, sandwiches for lunch, and foiled casserole dishes for dinner. Babysitting was set up for the first few days while I was in the Hospital and Trev was at work. There were hospital visits from uncles and an aunt, Primary leaders, a Bishop. Jonny's Preschool teacher came and visited with a bucket full of toys for him. We received countless phone calls from friends and family who were praying and fasting for our little guy. We never felt alone during this trial.

I  haven't written everything, but this feels like enough for now. There is so much more that has happened. Perhaps now that I've recorded the innitial "happenings" I will be able to stay on top of what is going on with Jonny's blood.


This trial is not over. His platelet count is dropping again for the third time and he will probably go back to the Hospital for the third time for a fourth treatment. We are trying to stay positive and optimistic. Some days/weeks are easier than other. I am so grateful for good friends and a loving supportive family that are seeing us through this. I'll keep posting!