Our Big Medical Scare

UPDATE JULY 9: Davis had his follow-up appointment today and his platelet count was up to 118,000!  There are no longer any restrictions on his activities.  We'll have one more blood draw in a month and then hopefully we can say goodbye to ITP forever!  :) ************ Remember how I have complained in the past that Davis always gets sick on holidays?  Well, that pattern held true for the 4th of July this year, except that instead of illness it was a scary surprise trip to Riley Hospital for Children.  The rest of this post is just a repeat of the email that I sent out to our family and a few friends, so if you got the e-mail, skip the reading and just look for the pictures.  :) On Tuesday afternoon, July 2, I noticed that Davis had an unusual amount of bruises (more so than is typical even for an active 2 year old boy!) all of a sudden.  Greg even commented on it when he got home from work.  After grocery shopping that evening, as I was putting Davis in his car seat around 8 p.m., I noticed a lot of tiny pinprick-size purple dots on his legs, and also on his elbows and a little on his neck.  I told Greg right away that I was worried about Davis because I was pretty sure those were petechiae (pe-teek-ee-eye) and I knew (having extensively referenced the rashes section of our Baby 411 book over the past two years due to Davis' sensitive skin and propensity to get rashes) they were a sign of something potentially serious, especially taken in combination with the bruising.  (For example, the rashes section says, "Q: Which rashes are worrisome? A: Petechiae with or without bruising." and the bleeding/bruising section says, "Easy bruisability can be a sign of low platelet count.  Bruising is much more worrisome when it is seen with petechiae.") After we got home and referenced the book and its list of potential causes for petechiae, I told Greg that I really thought he might have ITP.   And I quote again from Baby 411: "Idiopathic  Thrombocytopenic Purpura (ITP): The destruction of platelets due to an autoimmune response in the body. Can occur after a viral illness. Because platelets are needed to clot blood, a low count causes bruising and petechiae. Some children need medication in order to help the body increase platelet production in the body, others bounce back on their own. The good news is that almost 90% of kids do beautifully and have no further problem after the one episode."   I was very worried and knew he needed to go to the doctor, but didn't think there was a need to rush him to the ER right at bedtime and set ourselves up for an all-nighter (seeing as he didn't have a fever or any other symptoms).  So the first thing in the morning, I took him to the pediatrician.  After examining him and confirming that it was petechiae, the first suspicion that Dr. Henderson had was ITP, although there was a possibility that it could just be a virus.  We went downstairs to get some blood drawn to be tested.  Davis was AMAZING with the blood draw.  He just sat on my lap and sat very still and watched the whole thing - no whimpers or tears, no squirming.  And immediately afterwards when he got some Toy Story stickers he had a huge smile on his face!  He looked super cute in the tiny hospital gown he was wearing, too, with his chubby little legs sticking out.  :)  I wished I had my camera. The worst part of the day was waiting for the results of the blood work.  At one point, I heard one of the front office staff come through the hallway talking about blood work results and saying she needed to talk to Dr. Henderson right away, and she interrupted Dr. Henderson in one of her appointments to talk to her.  Then a little later I heard them saying that Dr. So-and-so was on the phone to talk to Dr. Henderson.  All this time, I was getting increasingly worried because I knew that whatever the blood tests showed, it wasn't going to be something good.  Although Dr. Henderson had said right away upon examining Davis that he appeared very healthy for a child with so much petechiae, that nothing in his abdomen or glands felt abnormal, and that she didn't see anything that made her suspect malignancy, of course my biggest fear was leukemia.  I had been so sure that it sounded like ITP that I hadn't really been concerned about leukemia until now, but as  waited in the examination room I started to get more and more panicky about he idea, just praying that it was anything but cancer. When Dr. Henderson came in, she immediately told me that his platelet count was not only low (which I expected), but it was VERY low and that she had spoken to a hematologist at Riley and he would need to go Riley right away.  She reassured me that all of his other counts (white blood cell and red blood cell) were perfectly normal and fine, which made me feel somewhat better since leukemia is normally only suspected when all the counts are low across the board.  I was still pretty much a nervous wreck at this point, though.  I called Greg to come home from work right away, and we left for the Riley Outpatient Center in downtown Indianapolis, arriving right around noon. We were directed to the Hematology/Oncology clinic.  This is not a place that you especially want to be when you are a nervous parent who has just found out something is very wrong with your child but don't have a diagnosis yet.  There was one particular family in the waiting area with a toddler girl who was obviously a chemo patient, thin and bald and just listlessly leaning against her daddy's chest.  My heart just about broke and I could not imagine if we had to go through that with Davis, but the whole time I was asking for strength to deal with whatever diagnosis we were given. All of the staff were amazed at what a cooperative and good patient Davis was.  He would put out his arm for the blood pressure cuff, open his mouth and shine the light inside, etc.  They swaddled him in a blanket and held him down to put the IV in, but they probably didn't even need to because he stayed very still and just focused on a sticker that he'd been given, not making a peep through the whole process.  They kind of a put a splint on his arm and wrapped a brace around it so that he wouldn't bend his arm or pull out the IV.  I was really surprised that he didn't seem bothered by this at all (it just took him a bit to adjust to not being able to bend his right arm, since he's right handed and had to learn to transfer food to his left hand in order to get it in his mouth).  We put his stickers on his brace and he was mainly interested in looking at them.   The hematologist, Dr. Markels (we liked her a lot!), examined him and also said that she was pretty sure it was ITP, and explained more about what it is and what the treatment plan would be (assuming he was Rh-positive, with he is - they tested for blood type and he is A Positive, like me). She reassured us that it would be very rare for someone with leukemia to have only low platelet counts and not their other blood cell, and that with leukemia bruises will typically appear gradually over several weeks.  Davis, on the other hand, was presenting the classic symptoms of ITP, where it's a very sudden onset of bruising and petechiae.   Davis was completely exhausted, being that it was well past naptime at this point, so while we were waiting for the test results we turned off the lights and I managed to get him to fall asleep in my arms.  While he was asleep, the doctor returned with the test results, confirming that everything was normal except his platelet count.  The low end of normal for platelet count is 150,000.  Davis' platelet count was only 4,000.  She officially diagnosed him with ITP and was going to have him admitted overnight so that an intravenous drug could be administered and he could be monitored overnight.  Basically, his immune system got confused (he'd had a very minor cold two or three weeks ago, just a runny nose) and his antibodies had begun attacking his platelets and destroying them.  This medicine, Rho(D) immune globulin, would bind to the red blood cells, tricking his antibodies into attacking the red blood cells instead, thereby leaving the platelets alone. After Davis had been sleeping for about an hour in my arms, they were ready to take him over to the inpatient area of the hospital.  The nurse brought a little red wagon lined with blankets and pillows and I put Davis in it.  He amazingly stayed mostly-asleep for a little while, and after he opened his eyes, he continued to lie quietly in the wagon while being pulled through hallways, up the elevator, and to his hospital room.   watching VeggieTales from his hospital crib  breakfast on Thursday   having fun in the playroom   The hospital stay was pretty much like you'd expect any hospital stay to be.  We were in the new tower that just opened last December, so it was super nice.  Again, being in the pediatric oncology unit was kind of depressing, since Davis appeared to be the only child in the unit who was not obviously a cancer patient.  Like everything else that day, Davis really seemed to take the whole hospital experience in stride.  He was very cooperative with being examined and having his vitals taken repeatedly, and he enjoyed sitting in his hospital crib and watching movies.  There was a very nice playroom down the hall, and he had a great time playing there.  It was rather challenging, however, to have to pull an IV pole around everywhere following an active toddler.  He kept getting tangled up in his tube (just a saline drip) but got pretty good at getting himself un-tangled!  They finally started the drug infusion at about 9:00 p.m. - the nurse came right into the playroom and started it there, without him even having to miss a beat in his playing - and it didn't take long for the infusion to be complete.  Then it was just a matter of waiting and watching for any ill effects (like fever and/or chills).  After he finally fell asleep (after 11 p.m.!), Davis slept quite well considering that he kept being disturbed every hour or two by the nurse checking on him, peeking at his IV, changing his diaper to get urine samples, taking his vitals, etc.  The only bad time was at 5 a.m. when she needed to draw blood and wasn't able to get any from his IV.  A team of nurses ended up having to help and hold him down (with Greg's assistance while he sat on my lap screaming) while drawing blood from his foot.  That was pretty horrible, but he fell asleep on me before long and I was able to transfer him back to his crib.  By the morning, I think he may have even forgotten it happened or thought it was just a dream.  The morning was mostly waiting around, playing in the playroom or watching VeggieTales, speaking to the inpatient hematologist who came by doing rounds with a huge group of residents, and just waiting to be discharged, which happened a little after noon.  He hadn't had any problems overnight, and we were told that any bad side effects probably would have happened then if they were going to happen at all.   And that 5 a.m. blood draw?  His platelet count was up to 13,000 (it had been 4,000 prior to the infusion), so we were extremely happy that it had tripled and the drug seemed to be working.  We will go back to the Riley Outpatient Center on Tuesday to have blood drawn again to see if the count is continuing to rise.  If not, there is another drug that could be tried at home.  The interesting thing about ITP is that it usually doesn't recur, and it usually goes away on its own eventually, although that can take up to 6 months.  Medication will help jump-start the process so that the count hopefully goes up much more quickly.  Considering that he is an active 2-year-old boy, this would be great because he doesn't understand that he needs to be careful not to hurt himself until his counts are above the critical level, so Mommy and Daddy have to be extra-attentive and helicopter parent him a bit to keep him safe for the time being.  The main concern would be head injury, which would put him at high risk for bleeding on the brain.  This is not ideal for Davis, whose favorite activities including climbing over things and a fun game he calls "fall off the bed."  So I did some extra baby-proofing in the living room, am making sure to keep the baby gate at the top of the stairs closed, am keeping the doors closed to the bedroom that have big beds he likes to fall off of, am avoiding playgrounds, and am trying to persuade him to do calmer activities that don't involve a fall risk.  l envision watching a lot of VeggieTales, movies, and television over the next several days, as this is the only thing that immobilizes him.  :)   We are hoping that we get good news at the doctor on Tuesday and his counts have risen enough that we don't have to be quite as paranoid about head injury.  Davis has been a real trooper through all of this.  We are so amazed at how adaptable he was about the whole experience, like "eh, no biggie!"  Even walking around being hooked up to an IV pole didn't faze him.  The worst part of the whole experience was when we were discharged.  He cried and screamed having the IV removed from his arm (weird since he didn't care at all when they put it in) and screamed the entire way out of his room, through the halls, into the parking garage, and in the car a good deal of the way home until he fell asleep.  I guess he didn't want to leave the hospital!   We certainly feel very blessed, especially seeing all the other families in the pediatric cancer unit and comparing our simple one-night stay with the prolonged nightmare that they are experiencing.  We appreciate your continued prayers for Davis' health and safety as his body recovers from ITP.

From Loving the Life We Live