The Rest of Valentine's Day

As my last post showed, Valentine's Day started off really well with Hannah's school party. Let me tell the rest of the story though.

The night before, I had stayed after church for GALS where one of the girls from our class told the story of her little daughter's heart issues. They have spent much time at Children's Hospital over the last year since her birth. It was an amazing story and really showed the awesomeness of God all through it. I could tell that Layton wasn't feeling very well and even wondered if he had fever. When we got home, sure enough he did--101. For the last week or so before, I just thought he had a bad cold. When the fever popped up, though, I wondered if he could have an ear infection. Earlier that day, I had noticed all these little red spots all over his legs. They kind of looked like freckles. I had a bad feeling about them. I told Kris that Sunday night that I thought I needed to take him to the doctor the next day.

So, after Hannah's party, at around 10:00 I called the doctor to see if I could get him in. They called me back around 11:00 and asked if I could come in at 11:40. We were actually able to see our pediatrician, Dr. Byrum, which really surprised me, but I was so glad.

I packed Lincoln and Layton up and headed to the doctor. When he came in I explained everything that was going on and showed him the spots on his legs. He looked at his ears and said that he did have a bad ear infection. He thought the spots were probably just virus related, but wanted to do a finger prick to check his blood, just in case. He said that it could be something else and he wanted to make sure it wasn't.

Sweet little thing didn't even cry when he got his finger pricked. The lab lady came back into our room a few minutes later and said that she needed to prick him again because she got a weird read before. She kept saying that it was probably just her machine, but she wanted to make sure. I was a little worried at this point, but keeping Lincoln preoccupied in the doctor's office was enough to keep me preoccupied so I didn't worry too much.

A few minutes later, Dr. Byrum came in and said, "Well, I have some bad news, but it is not as bad as it could be. It is not leukemia, but Layton is going to have to go to Children's and spend the night." My heart dropped. I thought how ironic it was that I had just spent last night listening to a friend tell about how great Children's Hospital was and now we were headed there. The doctor went on to explain what was going on.

He said that Layton's platelet count was dangerously low. The first test showed the count to be 7,000 and the second was 15,000. The normal range is 150,000 to 450,000. He said that he thought he had ITP, Idiopathic thrombocytopenic purpura. It is a bleeding disorder where the immune system destroys platelets, which are necessary for blood clotting. It happens when certain immune system cells produce antibodies against platelets. The antibodies attach to platelets. The spleen destroys the platelets that carry the antibodies. In children, it sometimes follows a viral infection. It can be a one time thing (and mostly is) or it could be chronic. The little spots on his legs were called petechiae, which is bleeding into the skin. He actually had them on his diaper area too. I just thought it was diaper rash. The danger is internal bleeding or a brain bleed.

Dr. Byrum said Layton would need an IVIG infusion at Children's immediately. This is intravenous immune globulins. By this time I was in tears. When I heard the word "autoimmune" I felt like all my fears had come true. Hannah's arthritis is an autoimmune disease. Dr. Byrum says we just have this stuff in our family. Ugh! I didn't know exactly what this was going to mean for Layton and it was so scary.

We tried to call Kris. When we finally got him, Dr. Byrum explained things to him and he headed straight over. So, we had to figure out what to do next. Lincoln was with us and Hannah was going to need to be picked up from school shortly. I called my Dad and told him what was going on. He said they would head this way as fast as they could. Then, I called a couple of friends. Leanne just happened to be driving in her car and was able to swing back by the doctor's office and pick up Linc. We called Hannah's school and told them to let Hannah know that Leanne would be picking her up. We were a little worried about this because we didn't get to talk to Hannah ourselves and explain why Leanne was picking her up. We didn't want her to worry, so Kris eventually emailed Hannah's teacher and asked her to call him so we could talk to Hannah. Leanne picked up Hannah and took both kids back to her house till my parents got in town. Thanks again to Leanne for doing that for us!!! She was a HUGE help!!!

Before we left the office, Dr. Byrum asked us if he could pray with us. This meant so much to me. I can't say enough good about our pediatrician. What a blessing he has been.

We got to Children's and finally got in a room on the Hematology/Oncology floor around 2:30 p.m. We saw several doctors who just explained everything to us. When it came time for the IV, my brother, Jeff, had gotten there. They had called one of the nurses on the IV team to do his IV. She looked and looked for a vein in both hands and both feet. She had the hardest time finding one because of the low platelet count and because he is so chubby. I have a really hard time watching any needle work, so I was standing by him trying not to watch too much. He was screaming. I did look down at his face once and saw this dot of blood about the size of the head of a tack on his forehead. It freaked me out! All I could think was that he was having a brain bleed. I know that was stupid, but that was my fears coming out. I had to leave the room. Jeff was able to come comfort me as well as one of our ministers at church who had gotten there. Kris stayed in there with Layton. I found out later that the blood I saw was from when they blew a vein I think. The nurse ended up blowing two veins. She was getting really frustrated. I could hear her sighing and it was just really getting to me. Finally she said she may have to do it in his head, but she was going to try one more time in his hand. I had just about had all I could stand and so I prayed SO hard that she would get it in and this would be over for my poor baby. It is so hard to hear your child screaming because someone is hurting them and they are scared. This time it worked! It took about 45 minutes all together. It was by far the worst part of the whole hospital experience. I hate IVs!

They taped his arm up really, really well so he couldn't pull it out. We did NOT want that thing to come out.

You would really have never known that this little angel was so sick. He was pretty happy for the most part.

They checked his blood when we got here and his platelet count was 6,000.

When they put the tourniquet on his arm, it bruised him pretty bad. This was because of the low platelets.

You can kind of see the petechiae spots on his leg here.

They finally started the IVIG around 9:00 p.m. that night. It took about 4 hours to get it all in him. They came in every 30 minutes to check his vitals and they would increase the rate of the infusion as well. We were really worried about the side effects of the infusion. They said he could have fever, chills, difficulty breathing, nausea, vomitting, headache, or kidney issues. We were praying so hard that he didn't have any trouble.

Speaking of prayers, we were so overwhelmed with the reactions of our family and friends. We could feel their prayers. I know Kris' parents had people in Odessa praying. My sweet friends had someone praying for us every hour all night long. They would send me texts with scriptures and prayers. It was amazing. I will never forget it. Thank you so so much!!!!! We also had several visitors through this whole experience. They were great and helped us pass the time.

Those prayers really worked. Layton slept really well that night (even with all the vitals checks) and didn't show any signs of any side effects. That was wonderful.

The next morning, they did another blood test. When we finally saw the doctor after lunch, he said the platelet count was 23,000. So, it was up and he felt like we could go home. He wanted to leave the IV in, though, just in case we needed to do another infusion. We were to come back the next morning to the clinic to check things again. That night at home was rougher than the one in the hospital. He ran a fever and was still suffering from his cold with a bad cough and yucky nose. He slept propped up in his bouncy seat by our bed. The next morning we were at the clinic by 7:30 a.m. His platelets were 110,000!!! We were so thrilled. He got to get rid of that yucky IV!

He was back to his normal self pretty much when we got home. I know he was glad to get that stuff off of his arm. He spent the rest of the week trying to get over the cold stuff. He did have an ear infection and so we have been giving him an antibiotic for that. We went back to the pediatrician yesterday to have his count checked again. It was 771,000!! Unbelievable. That infusion definitely worked. Dr. Byrum was kind of giddy over it. He wants us to check it again in 2 weeks and he will probably be checked regularly for quite a while. We still hope and pray that this was a one time thing!

It is so hard to watch your little one go through stuff like this. It really makes you lean on God and lean on others. We are not ones to like attention or want people to go out of their ways to help us. It is pretty humbling. When we were in the clinic on Wednesday morning, we saw several children come in who obviously had cancer. It was so sad. I told Kris as we were driving home, "Can you imagine what our lives would be like if Layton had had leukemia?" We are so thankful that he did not. Thanks again for all the prayers.