ITP update

Seems to be time for an update!

We had a follow up appointment at Children's Mercy on August 18th and they rechecked his blood work. His platelets had jumped to 117,000 (which was a 112,000 jump in a week). There was something funky with his White Blood Count in the Absolute Neutrophil count so they suggested we come back in 3 months just to check and make sure there isn't something else going on.

After his appointment we took him exploring at Bass Pro

Then we had lunch with my dad and Cole just loved on him.... I think it's because dad was giving him fries!

August 21st, Cole was just playing while I was cooking dinner and he came into the kitchen with blood running down his mouth. In some of our discharge paperwork from Children's Mercy, we are to look for bleeding from the mouth, nose, urine or stool because that could be a sign of an internal injury and that his platelets were back down. We tried to get his mouth to stop bleeding for an hour and it wouldn't stop so I called the nurses line at Children's Mercy and they told me I needed to take him to the ER at the hospital in Emporia and get a CBC (complete blood count) done. Children's Mercy called the ER and told them we were coming and that they wanted the CBC results before anything was done. They did a CBC and his platelets were at 57,000 (down 60,000 in 3 days) plus there were 7 other things out of a normal range in his blood work (including the absolute neutrophil count, which had dropped further). We were told to call Cole's doctor at Children's Mercy in the morning. We called the next day and they told us that with the drop in platelets that the best thing for us to do is watch and wait. We are waiting for his bone marrow to pick up and start making platelets on its own without the medication in his system. They don't do treatment unless he is under 20,000 but they wanted us to get follow up blood work in 2 weeks.

Trying to keep him entertained... Emporia takes FOREVER to get blood work results!

August 25th, Cole started throwing up (pretty sure that was showing up in his blood work when we were at the ER in Emporia) so we made another call to Children's Mercy and they said that it sounds like he has another viral infection..... UGH! Here we go again!!! Also, the bruising was back on his legs but not as bad as the first time.

August 26th, I had stupid Federal Jury Duty in Topeka and they wouldn't let me out to stay with my sick baby!

August 28th, he was finally feeling better from his latest viral infection... I'm finding that when you have a child with an immune disorder, they get sick ALL THE TIME! So please don't take offense if we see your kid with a runny nose and we run in the opposite direction! :)

More bruising...

 

More bruises including a good sized one on his thigh plus there are bruises on his back, his butt, his forehead and his arms.... pretty much his whole body!

September 4th, our follow up CBC appointment at Newman's (Emporia Hospital). We were told we wouldn't get a call the same day with our results unless it was a critical value...Not 20 minutes after we left the hospital we got a call from Children's Mercy. We just talked to the on call doctor and he said that Cole's count was 28,000 and that we just needed to watch for bleeding overnight and we would hear from Cole's doctor in the morning.

September 5th, Cole's doctor called us and said that in addition to his platelets being low, his absolute neutrophil count had dropped even lower. That's three blood draws with the count below normal and getting worse every time. The doctor said that number measures his ability to fight infection. She said that anything under 1,000 means that his body is somewhat fighting infections and he was at 870.  So we go back for more labs in 2 weeks and our appointment with the doctor was moved up a month to October 20th.  Like I said before, don't be offended if we take our kid running in the opposite direction if we think there might be illness lingering.