18 Months

Cole had a well baby check on the 16th and then had his 3rd and FINAL follow up appointment at Children's Mercy on the 19th. He is 33.5 inches long and 24 pounds 15 ounces according to Children's Mercy's measurements - they're more accurate.  From both of his doctors appointments, he is a perfectly healthy little boy now! 216,000 platelets, 2,000 neutrophils and a ton of energy! We don't have to go back to Children's Mercy for any more follow up appointments and we have put ITP behind us! FINALLY!!

 

 Sams Club with Cruz

 Thanksgiving at Grandma and Grandpas

 Hiking with Daddy

Watching cartoons in our bed with the puppy

Is it all over?

Yesterday 11-5-14 we had an eventful day.

Cole dropped his bat down the stairs so we went to go get it. I figured I would go ahead and get some laundry done while I was down there so I let Cole play in the family room while I went into the laundry room. As soon as I went in the laundry room he started crying. I went over to him and picked him up and noticed that his mouth was bleeding. What's new, right? I took him into the bathroom and noticed that it was a lot of blood... I mean a TON of blood! He started coughing and blood went all over both of us. I tried to get it cleaned up but there isn't really great light in the basement and he was crying too hard that we weren't getting anything accomplished. I took him over to the couch and let him nurse which is when I saw the blood start to come out of his nose. After he nursed he was much, much calmer so we went upstairs and I got a better look in his mouth. He apparently fell with something in his hand or had his hand in his mouth but there was a massively bloody spot on the roof of his mouth pretty far back. At this point I called his doctor at Children's Mercy and she asked how long he had been bleeding. I told her about 5 minutes and she told me that if I couldn't get pressure on it and get it to stop in the next 5 minutes that I needed to take him to the ER.

{*Why is it such a big deal for his mouth to be bleeding? With ITP it's common to develop blood blister type sores on the roof of the mouth. My first thought when I saw his mouth was that he had one that I didn't know about and that it ruptured. *Why only 10 minutes to get the blood to stop? His last platelet count was 35,000 which in the grand scheme of things, is still pretty darn low. When you have severe bleeding and not a lot of platelets to stop the bleeding, you can get into a dangerous zone pretty quickly.}

 So I hung up with the doctor and tried to get something in his mouth that he would bite down on and apply pressure. Everything that I tried just made him scream. I don't think there would have been anything that would have worked because it was so far back on his pallet.

5 minutes later the doctor called back and said that since I didn't have the bleeding under control, I needed to take him to the ER and that she would call ahead and let them know I was coming.

I called and called Josh and he wouldn't answer his phone. Finally I got someone to answer his work phone and get ahold of him on their work radios. He was in the north west part of the county on a service call. He called me back and I quickly filled him in on what was going on. I got Cole and I both ready and we were getting ready to leave when Josh's mom pulled up. She grabbed up Cole and I grabbed my shoes and we went to the ER. When we got there they looked in his mouth and could see that it was still bleeding. They drew blood to get his platelet level which came back at 72,000!!! 72,000!!! SEVENTY-TWO THOUSAND!!! I almost started crying! He has doubled since his appointment 2.5 weeks ago and that is BY FAR the highest number that he has had (without any medical intervention) since this whole thing started. 

 

What does this mean?? It means that his bone marrow is making platelets and his antibodies aren't killing them!! WHOOP WHOOP!

 

The Emporia hospital told us that there wasn't anything they could do for us and sent us home.... Children's Mercy called us back to check on how we were doing and they were so frustrated that Newman's didn't even call them before they discharged us. They were going to prescribe us a medication that would stop the bleeding but decided we would just watch him since his platelets are high enough now that he should be able to clot it on his own. The Dr at CM asked me for the rest of his blood work numbers and his neutrophils are in a good range to fight infection and he has enough platelets to get it to clot. Yay!

This is the best picture I could get of it and he obviously isn't thrilled to show it to me.

 

This is what he enjoys doing with his time... sitting on my lap watching Monsters, Inc.

 

Here is a picture from a couple nights ago with a serious mashed potato mess!

 

 

The latest ITP news...

Monday October 6th, we had Cole's 15 month well baby check up and he is 32 inches long and 22 pounds 12 ounces. 50th percentile for weight and 79th for weight. His pediatrician didn't have a lot to say, just that he is cute and healthy! :)

 

We had his follow up appointment on October 20th at Children's Mercy and he was at 35,000 for platelets, which is up 7,000. So he is rising ever so slightly but not very quickly. I was glad to see him out of the 20,000s for the first time in a very very long time! Of course we were hoping for higher but, we will take what we can get! She said if he gets sick again, they would obviously go back down and that the number will continue to fluctuate. We go back in 3 months for another check up. On the plus side, he is really looking pretty darn good, as far as bruising goes! He's got a couple bruises but nothing that isn't typical for a 15 month old boy. Now maybe people will quit staring at us in Walmart!

 

 Here are some pictures from our trip to Children's Mercy.

 

Waiting for daddy.

 

Waiting for the doctor to come in. Aren't my guys just the cutest??

 

Playing with the doctor's chair.

 

In other news... The Royals are in the world series and we are letting Cole stay up and watch the games! He loves it and he cheers with us.

 

 

We went to Dallas and saw the Gas Monkey Garage and ate at their restaurant.

 

 

He helped Neena buy a house...

Our continued journey of ITP

Cole had blood work on Wednesday October 1st. Thursday we got a call from his doctor and he is at 27,000 for platelets. The hope was that his platelets would come back up after everything else in his blood work improved. Well it has been over 2 weeks and his platelets still haven't come up. They've risen 4,000 but that really isn't much of an improvement. They would consider that holding steady. The doctor said that she thought that by now his platelets would have come back up and there's a potential he will be chronic but it's still to early to determine that.

On Monday we go to his regular pediatrician for his 15 month well baby check up. I'm thinking he will still be tall and slender! :)

On the 20th we go back to Children's Mercy to meet with his Hem/Onc doctor and hopefully get something straightened out with his platelets or at least a plan of what to do from here.


Here is some fun news for you...

This week Josh, Cole and I got to watch the Royals in the playoffs for the first time in all of our lives! The Royals won the World Series about 4 months before Josh and I were born. It has been pretty cool to see them do well for the first time in our lives while sharing that with Cole.

Also, Grandma and Grandpa Stevenson planted pumpkins in their garden this year and Cole got to go pick a few the other day. It's pretty cool for Cole to have his own pumpkin patch!

Update on our Cole-Man

The latest on Cole...

 

We had his labs done on Wednesday evening and we got a call Thursday morning from Children's Mercy. His platelets are at 23,000. He was at 28,000 two weeks ago so for the most part he's holding pretty steady as far as platelets go. His absolute neutrophil count has tripled in the last 2 weeks which is amazing! He went from 870 to 2,470. The doctor said that when you recover from an illness, your platelets are the last thing to come back up. So we are really hoping that in 2 weeks, his platelets will be up!

 

 

Most of you know that 23,000 still isn't a great number. The doctor said that he is basically borderline of needing intervention but we are holding off hoping that they'll come back up on their own!

 

Crazy big bruise on his chest and I have no idea what he did to get this bruise. He must have fallen on a toy pretty hard because you can actually feel the pooled blood under the skin and none of his other bruises are that way.

 

 

Some day I know he won't be this bruised but that day seems to be so far away.

 

 

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.

Idiopathic Thrombocytopenic Purpura (ITP)

Well, I wasn't planning to make another blog update until Cole was closer to 18 months but I feel this one has become sort of necessary. We have been asked so many questions about what has been going on with Cole that we thought a centralized location for the whole story would be the easiest way for people to find out.

Here is the story from the beginning.

7-11-14 Cole went in for his 12 month check up and they did blood work as per routine for this visit. Results: Normal on every test ran.

7-21-14 Cole woke up with a 102 fever over the next few days he had a runny nose and a bad cough. The doctor said that it was a viral infection. He was all better by the end of that week.

8-3-14 Afternoon: I noticed a large black and blue bruise on the top of Cole's foot and I had no explanation for it. I even tried to wash it off because I thought he might have gotten into something that colored his skin. (It wasn't washable).  Evening: I went to get him ready for bed and I realized that his shins were all bruised up too and I called in Josh to check it out too but we just brushed it off as a typical 13 month old.

8-5-14 I went home for lunch and saw that my little man had taken a spill and had a bruised forehead. The babysitter said he just tripped over his own feet and went face first into the hardwood. He has fallen like that before so this raised some flags for me too because it was so big and so quick to bruise.

I rocked him to sleep after we had lunch and thought I'd check his legs while he was still enough for me to bother him.

I knew then that there was something going on because his legs and feet had gotten worse over the last couple days. I took these pictures and sent them to my sisters and mom. They responded pretty quick that this was NOT normal 13 month old bruising. So I decided to call the Doctor. Cole's pediatrician was out of the office for the week so we saw the family doctor. She reassured me that I wasn't crazy for bringing my kid in for some bruises and told me that this was not the result of any kind of abuse. They wanted to check his blood for the blood clotting disorders and his platelet levels. So they took blood and when they tried to get a bandaid on blood spewed all over the nurse and all over the floor (not a good sign).

 

8-6-14 They called with his blood results and the blood clotting tests came back normal (not hemophelia) but they couldn't do the platelet test because a clot formed in the tube of blood and that skews results. At that point the nurse almost brushed the whole thing off and told me that I could come back in for another blood draw to test platelet levels but that his levels were fine at his 12 month appointment so those were probably fine or I could wait until his doctor was back in the office next week. I made a follow up appointment for Monday.

 

8-7-14 I did a little google research and found a blog from a mom with a child that had ITP. http://lifeyourway.net/the-hardest-month-of-my-life/ Her blog post described exactly what was going on with Cole. So I researched ITP http://www.mayoclinic.org/diseases-conditions/idiopathic-thrombocytopenic-purpura/basics/definition/con-20034239

 

8-8-14 Cole fell and busted his lip which bled for over 2 hours and it wasn't that serious of a fall. At this point I was glad we had an appointment for Monday and I just wanted to know his platelet count.

 

8-9-14 I noticed pinpoint-sized reddish-purple spots (petechiae) on his arms, legs and face. Another sign of ITP.

 

8-11-14 Monday: We took Cole to the doctor and he instantly mentioned ITP. Good thing I'd already done my research! They took blood and told us they would take it directly to the lab to be tested so it didn't clot and that they would call us today with the results. By the time we got to the car it was already after 4:00 so I figured that we wouldn't get a call until the morning. About 6:15 Monday night the Doctor himself called. You know it isn't good when you get a call from the doctor and not the nurse! He told me that Cole's platelets were at 9,000 (Normal levels are 150,000-450,000) and I was shocked! I was completely expecting them to say that he was around 40 or 50,000 and they would want to do a follow up next week but we were not that lucky. A lot of what the doctor said on the phone was a bit of a blur as I was trying to wrap my head around all of this. He started to tell me that he wished he could do treatment here but that they couldn't and I cut him off to tell him that I want to go to Children's Mercy. He said that for the last 40 minutes he had been on the phone with them giving them our information and that they wanted him up there as soon as possible for an IVIG treatment. 

[What happened to all of his platelets??? When he had the virus, the antibodies in his blood fought the sickness and once he was better they continued fighting and depleted his platelets. IVIG goes in and protects the platelets that he has left and should trigger the antibodies to quit fighting. Once the antibodies quit fighting, they can replenish themselves.] 

The doctor suggested we go ahead and get in the car and head up there and he would call us back with more information after he heard more from Children's Mercy. So we went home and packed an overnight bag and headed to KC. We were told that they were waiting for us and that was the truth! We checked into the hospital around 8pm and we were able to go directly to his room with all of his information already on all of the boards. We saw quite a few doctors and nurses when we first got there and they asked all kinds of questions and told us that bruising and low platelets are also a sign of Leukemia or cancer so they wanted to rerun his labs to double check before we moved forward. They said that ITP is a condition of exclusion, meaning that they exclude everything else that it could possibly be with blood work before they determine that it is ITP.  At about 10:00pm they started an IV and did a blood draw. 

This was fixing the IV 

By 11:00pm they were ready to start the IV but they couldn't get it to flush so they had to untape and unwrap everything to get back to the IV and they found it had come out partially and kinked. Praise Jesus they didn't have to redo the IV.

 

If you've never had to hold down a 13 month old for a blood draw or IV, then you could never imagine the sheer torture for the child and the parents but let me tell you... There is nothing worse that holding your child's face as he is looking at you with tears in his eyes and screaming with all of his might while there isn't anything you can say or do so that he would understand why it's happening. It took 5 people holding down parts of his body to run the IV. I can't even tell you how many times I've been told over the last 2 weeks that he is extremely strong for being so young but I already knew he was a tough kid!

 

 

Here are the blood tests that we got back. As you can see his platelets in his blood draw at Children's Mercy were 5,000 with a normal range of 150,000-450,000

 

 By midnight they were ready to try again with the IV and this time there weren't any problems. The highest risk for IVIG is an allergic reaction so they did premeds of Benadryl and Tylenol and they started the IVIG with an extremely low rate into this blood stream.

The first 30 minutes there was a nurse constantly looking over him, checking his pulse, looking for a rash, checking his blood pressure and his temperature. Then they bumped it up a little bit and checked every 15 minutes then bumped it up and checked every 30 minutes then bumped it up and checked every hour. I looked at the clock at 12:10am when they started the IVIG, I knew it was going to take 12 hours for this treatment to happen, I felt overwhelmed and prayed it would go fast! They even had an EpiPen right next to his bed in case he had a serious allergic reaction.

 

 

 

Cole fell asleep about 12:30am and I laid him down in the crib. There were 3 wires on his chest, one around his big toe, the IV in his arm, and a blood pressure cuff on his leg. Needless to say he didn't sleep to well and neither did mommy. Josh went to my dad's house in Gardner to get some sleep because there is barely enough room for one adult to sleep there let alone 2! Cole woke up around 7:00 and we ordered some breakfast and watched some cartoons.

Playing with the toys they brought him. This was the extent of his range. 

 

Then the doctors all came in his room and talked about his case and what they were doing for treatment and checked him over. There were literally 15 people in his room checking him out! He found one nurse to flirt with and gave her lots of smiles! He fell back to sleep from 9:30-11:00 and then finished treatment about noon.

 

At this point their concerns are that he would get some kind of internal bleeding because there aren't enough platelets to clot an injury. The most concerning would be a brain bleed from hitting his head so they measured him and gave him a neat padded helmet.

 

He hated the fact that he couldn't go more than 5 feet from the machines and all he wanted to do was run so the minute that they unhooked his IV and all of the wires, he ran around screaming with joy! We took him to the play room and he loved the cars in there! We were on the hematology/oncology floor so you can imagine the heartbreaking children that we saw while we were in there. By 2:00pm they had checked and rechecked his vitals and the doctor came in and said they were going to draw up his discharge papers.

I thought his discharge activity restriction was kinda funny for a 13 month old. No contact sports and no bike riding??? What will he do with all of his time??

 

We all walked out about 3:00 on Tuesday and came home exhausted.

We go back on Monday for a follow up. They will draw his blood and we are hoping that he has more platelets by then!

 

 

A HUGE thank you to everyone that has been praying for our Cole man! We received so many messages and phone calls from people that love Cole and were praying for him. Also thank you to our dear friend Beth (who has chronic ITP) for preparing me for what I was about to go through. Thank you to our Pastors for praying with us and being so comforting through everything. Thank you to our neighbor Mark who mowed our grass while we were in KC. Thank you to Josh's parents that brought us dinner Tuesday night so we could rest. Thank you to my friend Katy that works at Children's Mercy and came to see us after her shift was over Tuesday morning. Thank you to mine and Josh's bosses for being so incredibly understanding and supportive and picking up the slack while we were gone. A big thank you to all of my family and Josh's family for being so loving. Thank you to everyone that offered help, we appreciated every kind word sent our way! A big thank you to Cole's pediatrician and the Doctors and nurses at Children's Mercy for taking such good care of our little boy. Thanks be to God for keeping us calm and collected and for keeping our little man in the palm of His hand through all of it.