Sunday was our trio's birthday, Monday Micah left for Alaska, Tuesday Jack woke up with blood spots all over his sheets, and Wednesday night Jack was admitted to the PICU. I had big plans for the time that my parents were in ABQ helping me with the kids while Micah was gone, and spending three nights in the hospital with Jack while my parents took care of the girls was definitely not part of the plans, but I am so thankful that they were here to help in the middle of this crisis.
Jack has had numerous bruises on his legs for at least three months. I have been concerned about the bruises but I asked many friends what they thought and I even brought up the bruises to our pediatrician at the kids' 2-year-old Well Visit on May 28th, but everyone said that the bruises appeared to be normal since they were mostly along his shins. But when Jack woke up with blood spots all over his sheets for the second day in a row on Wednesday, June 10th, we knew there was definitely something wrong, so I brought him to the doctor.
The nurse practitioner that saw Jack at the doctor's office agreed that something was not right as even a toddler boy should not have as many bruises as Jack had that morning and no one's gums should bleed nonstop like his were, so she ordered blood work and sent us to the nearest lab. She mentioned that it might be something called ITP (
Idiopathic thrombocytopenic purpura: http://www.mayoclinic.org/diseases-conditions/idiopathic-thrombocytopenic-purpura/basics/definition/con-20034239). Since she also wanted a urine sample and Jack had not had much to drink yet that day, we went home for a couple of hours to hydrate him before going to the lab for the blood draw.
Jack had his blood drawn around 11:45 a.m. and the nurse practitioner from our doctor's office said we would hear the results from her by the end of the day. Around 5:00 I finally called the doctor's office as we had not heard anything. It turned out that the lab had not done the analysis of Jack's specimen as quickly as they should have, but luckily I called in time to make sure it was done Wednesday evening. Around 7:00 p.m. I received a phone call from a nurse at the doctor's office saying Jack's platelets were extremely low and we must go the Emergency Department at the hospital as quickly as possible. And she added, "Drive very carefully since Jack's blood isn't clotting correctly."
I packed a bag for Jack and myself as quickly as possible, gave my parents a couple of instructions for the girls, and then rushed to the hospital. Unfortunately 7:30 p.m. turned out to be a fairly busy time in the Emergency Department, but around 9:30 p.m., after another blood draw was done on Jack, we were given a room. By this time my mom had come to the hospital as well, and my friend Val had come with a bag of snacks, books, diapers, and a blanket, which all turned out to be necessary things I had forgotten or didn't have enough of.
The ED doctor gave us the news that Jack's platelets were scary low as they were less than 3,000 and the normal range is 150,000-400,000. He also explained that Jack's neutrophils, a component of white blood cells, were also low as they were about 100 and normal is 1,500-8,000. After talking to the hematologist, the ED doctor told us that he was fairly certain that Jack had leukemia. This was shocking as although we knew it was a possibility, we were expecting and hoping to hear that he had ITP as the nurse practitioner in the doctor's office had suggested.
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| In our room in the Emergency Department. Jack's bruises look pretty bad. |
During all of this I was on the phone with Micah in Alaska trying to explain what was going on while he was trying to decide whether or not he should get on the next flight onto the glacier, as there was finally good weather in AK, or change his return plane ticket and come back to ABQ immediately. I explained our predicament to the ED doctor and he was kind enough to get on the phone with Micah and explain Jack's numbers and his grim diagnosis. Once Micah heard all of this, he knew he should come back to ABQ. Micah's parents had also decided that they would come down to ABQ the next morning to be here with us.
Around midnight my mom left to go back to our house since she had to get up early with the girls the next morning. Around 1:00 a.m. Jack and I were finally moved from the ED to the PICU where a nurse and doctor were waiting for us. Since it was the middle of the night the Hematologist / Oncologist was not working at the PICU, and a Hospitalist was there to ask some more questions and explain some things. Right away she explained that although Jack might have leukemia, it is just as likely that he had ITP and we wouldn't know until a bone marrow draw was done in the morning. What?!? I was shocked that she said this since a few hours earlier the ED doctor made me believe that Jack had leukemia. As this point I didn't know what to believe and I was exhausted since it was nearly 2:00 a.m. and neither Jack nor I had gotten any sleep.
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| 2:00 a.m. on Thursday morning right after we were brought to our room in the PICU |
Since Jack's platelets were extremely low, he needed to have a platelet transfusion right away, regardless of the diagnosis. During the transfusion he had to be hooked up to the same monitor that was used in the NICU for his oxygen saturation, blood pressure, respiratory rate, and heart rate. That monitor gave me nightmares while we were in the NICU since it was often dinging to tell us that the babes' heart rates were dropping, so I wasn't very excited to see it again. The transfusion was done over an hour, but honestly I don't remember much of the night as I was extremely exhausted and trying my best to comprehend all of the information that was coming at me. Somehow I managed to sleep for 1.5 hours in a chair next to Jack's bed and he got about 4 hours of sleep.
The next morning I started to update our family and friends that Jack might not have leukemia as we were originally told. Around 9:00 a.m. the doctor came in and did Jack's bone marrow draw. I stayed in the room while they put him under general anesthetic, and then I was told to leave as the procedure is too invasive for a parent to watch. Luckily, the procedure only took about 20 minutes and soon after it was done my parents arrived as Val had agreed to watch the girls for the morning so I would have support at the hospital. My parents had to leave before the results of the biopsy were back, and everything from Thursday is a fog since I hardly slept, but at some point I was told that the bone marrow draw results were clear. Hallelujah! Micah's parents also arrived during the afternoon, and since they were able to stay with Jack and we knew that Jack did not have leukemia, I decided to go home to eat dinner with my parents and the girls as I hadn't seen the girls since I left in a panic the night before.
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| These Melissa and Doug stickers were great entertainment in the hospital room and they peel right off of windows! |
On Thursday I also talked to Micah many times as we were having second thoughts about him flying back to ABQ. Now that we knew Jack's condition was most likely not life threatening, we didn't feel like it made since for him to throw away his dream of climbing Denali since I had plenty of help and support from both of our parents. After discussing all of this with the Hematologist / Oncologist in the PICU, we decided that Micah should stay in AK, which I believe was the right decision.
Thursday night Jack and I both slept great as we were exhausted and the nurse on duty decided to let us sleep instead of waking Jack to take his vitals every four hours. I was extremely thankful for that. Although I woke often since the bed wasn't that comfortable, I slept 10 hours, which hasn't happened since I was pregnant!
Friday morning another blood draw had to be done to check Jack's numbers and a few other things, so a lot of blood was needed. Unfortunately he had to be poked twice, once in his arm and once in his head as his blood was not flowing easily from his arm. Between the two pokes my parents, Micah's parents, and the girls came to the hospital and we all went to the play area for a bit. I thought it would help Jack to see the girls since he is so used to being around them, and their visit did seem to lift his spirits a bit. After the girls left Jack had to have the blood drawn from his head and I was not comfortable watching that, so Micah's parents graciously agreed to stay with him for that and I quickly took a shower in the Ronald McDonald room (so thankful for that resource as well!).
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| Playing outside at the hospital |
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| Faith |
When we got the results from the blood draw on Friday we found out that his platelets had dropped a little as they were now 25, as opposed to 36 on Thursday (they had originally gone up after the platelet transfusion). Although the drop in platelets was not great news, it did make his case look more like ITP than any of the other possibilities. After the results from other tests were received, the doctor confirmed that Jack had ITP. He also mentioned that his neutrophils (white blood cells) were still low, but he believed that was related to Jack's ITP.
On Friday evening the grandparents and the girls came back to the hospital for a pizza dinner on the outdoor patio of the play area, which was a much needed break from the hospital room. I was so thankful that the volunteers let us do that even though the play area was technically closed. Playing outside with everyone after dinner almost felt normal, even though we were still at the hospital. Jack did climb into the stroller when it was time for the girls to leave as he wanted to leave as well, and it was a heartbreaking to see him cry as they left, but I knew that we might not spend much more time at the hospital ourselves.
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| Pizza dinner |
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| Great views from the patio |
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| The outdoor play area is like a Children's Museum |
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| Alexis |
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| Faith |
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| Jack helping Grandpa push the girls |
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| Jack wandering the halls with Grammy |
Friday night I did not sleep as well as I was feeling anxious about Jack's next blood draw. The doctor said that if Jack's number were good he would be discharged, but if they were bad we would start treatment. According to the doctor, many kids are able to beat ITP on their own, but sometimes they need something called IVIG and possibly a steroid. Saturday morning I was on pins and needles as I waited for the nurse to do the blood draw and for the lab results to come in. Jack and I spent our morning wandering the halls and we spent some time in the play area. My parents came by the hospital for a short while in the morning, and right before they arrived I was told that the preliminary number of platelets of 42 was good enough for Jack to be discharged! Although we had to wait for the final number to come in (someone actually counts the slide to make sure the computer generated result is correct), we were very hopeful that this number was correct and my parents took a lot of our stuff home when they left to go home and help out with the girls. Thankfully the number was correct and we were allowed to leave just before 12:00 noon on Saturday!!
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| Everyone was so happy to be together at home! |
We spent the rest of Saturday and all of Sunday at home since Jack couldn't be exposed to germs since his white blood cells were still low (500 on Saturday morning and 1500 is normal). Thankfully we had bought the kids a small pool for the backyard earlier in the week, which was very entertaining. On Monday morning I took Jack to the Infusion Center at the hospital to have blood drawn to re-check his levels. We were so happy to learn that his platelets were up to 130, which is almost in the normal range of 150-400! His neutrophils were up to 700, which is better than they were but we were still told be stay home to be safe since Jack is still at risk of getting sick.
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| New pool in the backyard |
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| Jack playing in the Infusion Center room while we waiting for his blood draw results on Monday |
We will go back Friday morning for another blood draw.We will never know the cause of his ITP for sure, but from talking to the doctors it seems that this may have started months ago after a virus and then having the MMR & chickenpox vaccine a couple of weeks ago pushed his body into overdrive. I am so thankful that Jack's health scare turned out to be something fairly common and benign, and I am hopeful that this will soon be a distant memory.
