Sick Little Man

As you can clearly see, John is very sick right now. He had a flare with his arthritis late Friday, and things just kind of went downhill from there. Let's start at the beginning ...

Late Friday night, John developed a rash on his knees. I knew immediately when I saw it that within the next two days he was going to have a flare-up with his arthritis. Come Saturday he had a fever, and his knees hurt (classic arthritis flare-up). Sunday he was still hurting but doing better.

Monday he was still feeling icky and stayed home from daycare. Josh took him to the pediatrician that afternoon, and they didn't see anything. We figured it was just the arthritis flare-up lingering a bit, had him rest all day Monday, and sent him to daycare on Tuesday.

By Tuesday afternoon his fever was back (102*), and we picked him and Jake up from daycare around 4pm. By 6pm his fever was up to 103, and we called his pediatrician. She suggested we take him to urgent care. Before Celeste could get there to watch Jake for us, John began vomiting. His fever spiked just over 104, and he became extremely lethargic. Josh and I decided to head to the emergency room rather than urgent care, and we are so very glad we made that choice!

Once we got to the ER, John was immediately taken for height/weight and taken to a bed. The doctor was very concerned with his temperature and the fact that he was so dehydrated his mouth was nearly dry. They tried to start an IV, but the first line failed. They tried a second time in the other arm and managed to get it started.

After what felt like forever, a bag of IV fluid was hung. The doctor saw a slight ear infection in his left ear. Nothing major, but he ran a bag of antibiotics as well. Right after they started the antibiotics, we were sent down for x-rays of John's knees. The x-rays came back normal, but during the process John's IV line infiltrated (basically went through the vein and poured all the liquid/medicine straight into his arm). His arm became extremely swollen around the IV -- it felt like a balloon that was about to burst -- but it started going down right away when they just pulled the tape off the IV and stopped the fluids. His arm ended up bruised a bit, but nothing major from it thank goodness.

His fever started to go down but was still over 100* when the doctor started talking about sending us home. I said we would rather have him admitted and monitored overnight, and the doctor said that was fine as well. Around midnight John officially became a patient of the pediatric wing of St. Joseph Med Center in Mishawaka.

Throughout the night he was clearly in a lot of pain. He refused to eat or drink anything, and he had continuous fluids running through his (new -- that made three) IV for hydration. The poor child was extremely lethargic and very whiney.

All Wednesday morning he was monitored, hydrated, given antibiotics, and cuddled. The doctors could not see anything irregular on his labs (this being the second time bloodwork was run made for five pokes) and were very worried about him, especially since there were no clear indicators as to what was going on. Wednesday afternoon I asked if we needed to take him to Riley Children's Hospital in Indianapolis, where his pediatric rheumatologist is located. They agreed, and after just a couple hours John and I were loaded into an ambulance and headed down to Riley.

We arrived at Riley around 7pm Wednesday evening. They were able to get us admitted right away and get John to his room. Immediately, I could see that his team of nurses and doctors was excellent. They were all very concerned for John. A special team came in to start his IV -- they used an ultrasound machine to locate a good vein (there's six pokes ... here's when I stopped counting). John was very fussy and uncomfortable throughout the night. His fever gradually got lower and lower until it pretty much returned to normal finally. When his labs came back, I learned that his wbc (white blood count) was actually down to 26k (was 40k at the hospital in Mishawaka), but his sed rate (indicates inflammation and possible infection) was clear up to 112 (was 88 in Mishawaka and just 40 two weeks before all this). One doctor said his sed rate was "impressive." I joked that when we do something, we go all out. They rarely see a sed rate this high, especially in a child, and it has been cause for great concern.

All throughout that first night, we were up every hour or less for another poke, prod, or something. Poor John was just miserable. He even had to have catheters done twice in attempts to get urine samples for tests. By about 1am, he was just laying in his bed screaming and crying that he wanted to go home. Talk about break a mama's heart! I sat in the recliner with him all snuggled into my lap all through the night and the next morning.

Then the testing started. John had his blood drawn ... again ... and a little red wagon was brought into his room and padded with blankets and a pillow. They don't put the little children in wheelchairs here. They pull them in wagons, which makes it much more fun and less scary when/if they know they're going for another test.

Thursday the doctors and nurses were in and out of the room constantly ... and so were we. Seemed like as soon as John would get settled in and start to sleep a little, we had to fuss with him and take him downstairs for another test. He had a CT of his head, xrays of his knees, and an echo-cardiogram of his heart. The CT showed that his minor ear infection may have set into the bone by the ear, but there was not a definite answer for that yet. The xrays were normal -- no bone damage, which is a HUGE praise. The echo-cardiogram results wouldn't come back immediately -- have to wait for a doctor update on that. John didn't like any of the tests. The xrays and CT scans scare him -- especially the CT -- but he fell asleep during the echo! He was super excited after the echo because he got two little two SUV trucks that he LOVES.

Amber and Daniel came down Thursday afternoon to visit, which made John very happy. Poor auntie got to be a makeshift bed for fussy little man for over an hour, but she was happy to make him happy.

The whole time we'd been down here, I was telling the doctors that he's in a lot of pain -- waking up crying and screaming in the night, can't stand, very very upset whenever he's awake, and even whimpering in his sleep. They tried tylenol at first, which didn't help. Then, they switched to tylenol with codeine in it, which was better than regular tylenol but still left him crying and very upset most of the time. The codeine just allowed him to sleep a little bit, which was good, but he needed more. Finally, the doctors allowed the nurse to give John 1mL of morphine through his IV. I could tell the instant the morphine kicked in. John was a completely different child. His tears dried, and he relaxed and fell asleep (this is where Auntie got to play mattress for John). When he woke up, he was very silly. He asked Uncle Dan, "Who wants to do wagon races in the hallway?" After a couple seconds pause, John raised his little arm that's covered in a padded sleeve to protect his IV and yelled, "MEEEEEEE!!!" He played with his trucks a little but was decidedly upset that one didn't talk to him when he pressed the hood (he has a toy car at home that does), and then he napped some more in his bed.

Thursday night ... well, early this morning (Friday ... uhhh ... I think? lol) was a little rough for him because they needed to draw more blood. They couldn't get any blood to pull out of his IV (it's still flushing well and letting fluids through, just not drawing back), so they had to poke him again. His nurse opted to find someone else who was more familiar with drawing blood from a child. She said she didn't do it very often, and she wanted it to be a "one and done" poking situation -- totally appreciate and respect her for that! The nurse that came in found a really good vein in John's foot, poked once, got what they needed, and were done! Now, we're just waiting on the doctors to make their rounds for the morning (that'll start in 45min or so).

John has been restricted to clear liquids (water, apple juice, etc) since 6am -- which is fine considering food is not an issue for him right now (he hasn't eaten since late Tuesday morning). After 9am he can't have any food or liquids whatsoever. Come 10am he's scheduled to received an injection for the bone scan he has to have at noon. He will be sedated for the scan. I am pushing and hoping they will do an MRI on him, too, since he has one scheduled back home for January 3rd anyway. May as well get it all done here while we can, right?

So, now we're just waiting on the doctors and waiting on more tests. The results of his bone scan and **hopeful** MRI will determine what tests he'll need next -- a spinal tap and some other pretty invasive tests are being talked about if the bone scan doesn't show anything.  Keep John in your prayers extra today and especially this afternoon -- it's gonna be a pretty painful one for him.

I'm updating more often on Facebook, and my mom is getting texts throughout the day with updates. If anything new happens, Mom will know. Contact her for updates or check facebook! I know Celeste is updating Facebook here and there, too.

Thanks for the thoughts and prayers. The nurse just came in saying they didn't get enough blood, so we have to poke the poor child again. I'll try to update again late tonight with any news.