Although these last couple of weeks have been troublesome and emotionally challenging and really, downright scary, I still want to record it.
Monday the 2nd, Adrian woke from his nap (which in and of itself is a little strange, he doesn't nap much anymore) complaining of a sore neck and his right lymph node was swollen. My initial thought was that it was a swollen bug bite. I've seen him swell up pretty big around that area after a bug bite. It's rather alarming, but goes away after a day or so and it never bothers him. This time it hurt so that really bothered me, but I figured either a. he had slept funny or b. he had some kind of infection. Now, I'm not one to run to the doctor for every little thing. I'm more of a 'let it run it's course' kind of person. He had a fever that night and didn't sleep well even though he was clearly exhausted. The next day he slept most of the day. Again, that was a little strange but I figured if he was fighting something, it was good to let him rest. I did schedule an appointment with our chiropractor. If he had just slept funny, that would be a relatively easy fix. On the other hand, if it was an infection an adjustment would help give a little boost to his immune system. I had to carry him to and from the van, he was that tired. He wasn't sleeping, eating, or drinking very well.
This continued for a few days and by Thursday, I reluctantly brought him the walk-in clinic at Bell. He had continued with the fever thus far and that morning I noticed the palms of his hands were bright red as well as the tips of the back of his fingers down to the first knuckle. He also had some redness around his lymph nodes and on his pelvis. The nurse mentioned that he was dehydrated and asked if his hands were always red like that. When the Dr. came in he asked what the redness was on his neck, "Does he have eczema?" I said no (although truthfully, his eczema does flair up when he has dairy but it was nonexistent at that time). I said I didn't know what it was, it had just shown up sometime in the night.
He had been sleeping in my bed every night by that point and Jeff was sleeping in Adrian's bed so he could actually get some sleep for work. I basically did nothing all week because I was so exhausted taking care of my poor sick, restless boy. His diagnosis was "ear infection" and told me to give him plenty of liquids in any form and let him rest. Seemingly, as an afterthought he prescribed an antibiotic. I didn't love the idea for several reasons, but I also knew my boy was sick and was not getting better.
Sometime in the week he had developed very red eyes--just like pinkeye but with very little discharge--a stuffy nose, and a cough.
I went to the chiropractor again that afternoon for an adjustment. Adrian fell asleep on my lap in the 48 seconds that it took for the Dr. to make it into our room. He slept right through the adjustment. The Dr. told me to keep him posted on Adrian's status.
By Friday I was getting worried. I was in limbo between, "Everyone else seems to think it's no big deal" and "What if it is a big deal? What if we wait too long?" Mom was coming into town and I was feeling guilty that I never told her Adrian was still sick. I literally didn't have the chance the day before and the day of, it would have been too late for her to change her mind about coming because I knew she was already on her way.
By then, his entire back was the same bright red, non-raised rash. I had been applying oils to him like mad hoping that they would help calm his skin. I gave him a bath with lavender oil and lemongrass hoping that he might soak for a while and at first it seemed he would, but then suddenly, he was crying that his bottom hurt when it was in the water. (I would later learn that this was yet another symptom.)
I got him settled back on the couch and tried to get the house somewhat in order after several days of neglect before Mom got there. All this time, I knew he was dehydrated and trying to get him to drink was like torture. He would only take tiny little sips at a time.
I picked up Mom and brought her home telling her that Adrian was still sick and wasn't getting any better. When she saw him she wasn't very reassuring either. Maybe that was the push I needed to bring him in again. All that evening all of us searched and searched online trying to figure out what was wrong with him. I came across a few things that had similar symptoms but didn't have an 'aha!' until I stumbled across Kawasaki Disease. He had many of the symptoms, but in the end I dismissed it because it is quite rare. (9-19 in 100,00 kids under the age of 5.)
It was another restless night. Adrian drank a full glass of water in the night so that was good, but by morning he still looked pretty bad. We ate some breakfast and headed out the door to the walk-in, this time in Marquette. When we were finally called to a room, a nurse checked him over and then went to get the nurse practitioner. It sounded normal at first, but then she popped her head back in and said something about sending her right away, something about what she said sounded urgent. Sure enough, when the nurse practitioner came in she told us, "This is more than we can handle here at the walk-in, I'm going to send you to the E.R. It looks like he has something called Kawasaki Disease."
Both anxious and relieved to maybe have a diagnosis, we drove down the street to the E.R. I ended up pushing Adrian in the umbrella stroller because he was too worn out to walk. Once he had a room in the E.R. we had every doctor and nurse coming in and out asking us the same set of questions over and over and over again. I realize now that they were making sure we weren't missing any clues, but it was a long day for sure. Mom was there taking care of Isaac for several hours (thanks a million Mom!!) until she finally took him home before Jeff came (I finally asked him to leave work and come and be with us).
At one point I left the room to go to the bathroom and when I came back I realized that we had a "contact caution" on our door. Everyone coming in the room needed a mask, gloves, and smock before entering. Before coming to Kawasaki's they were thinking it might be meningitis, or measles, or something that I can't remember now...
They did every test that I can think of except an MRI (because it's too expensive one doctor told me). They swabbed his eyes, his nose (ouch), his throat, checked his ears many, many times, did an ultrasound of his organs, an ekg, a chest x-ray, and a cat scan, along with the more standard blood draws, and blood pressure, etc.
They started giving him IV fluids and a stronger antibiotic first. Even with the fluids in him, he looked so much better.
It was such an emotional day...or week really. But that day, seeing everyone poking and prodding your kid as he's yelling at them to stop, and seeing him so sick like that. Man, that was tough. Half the time he wanted me to hold him or lay with him and half the time he was yelling at me to get off the bed.
We arrived sometime before noon and around 6 or so, they finally started talking about Kawasaki's. The problem with Kawasaki's is that there is no real test to diagnose it. They basically had to rule everything else out and then settle on a clinical diagnosis based on his symptoms. When the doctor started talking about the treatment, I was still unsure. It's so hard when there's no definitive way to find out if we had the right diagnosis. That is, unless you wait several more days for the next symptoms and then you would know for sure. But then, it would also be too late for the treatment to be as effective and then you run into the very real possibility of heart complications.
After some discussion, we did decide to go ahead with the treatment which started with intravenous immune globulin (IVIG). We were told that it took several hours for the medicine to be mixed up so if we gave the go-ahead at 6, it wouldn't be ready until 9pm. We reluctantly said yes and the doctor set off to inform the pharmacy. Just before that I said something about, "what if I freak out at the last minute and say, no don't do it??" Jeff happened to be out in the hallway and overhead the doctor talking to his colleagues saying something about how he'd be a in big trouble if we changed our minds because the IVIG is really expensive.
After over 7 hours in the E.R. we were finally given a room in the CCU (coronary care unit). The nurses were so great there, especially considering all of their other patients were 70 and over. We got settled in and waited for the IVIG to arrive. Jeff was happy to get the football game on TV.
The IVIG arrived at the hooked it up to his IV and got things started, 15 mL/hr to start and through the night it would get up to 50 mL/hr. They said they would eventually jump in up to 75 mL/hr, but for some reason they never did. I was given another hospital bed to sleep in since the hospital no longer had cots for some reason.
It took close to 14 hours for the IVIG to finish up. By the next morning, before the treatment was even finished, Adrian looked unbelievable better. His rash was drastically faded and his overall skin color looked better. He was still very tired and slept most of the day. By mid-afternoon, they were able to send us down to pediatrics. Mom left shortly before since her ride back home was ready to go. We juggled Isaac ourselves for a while since he wasn't allowed into the CCU. Since Jeff was leaving with him that afternoon to head downstate for a couple interviews, I chased him around and got some hugs and kisses in. That weekend was the first time I left Isaac overnight.
Once we moved to pediatrics, Isaac was allowed in the room. Jeff stayed long enough for us to get settled in there and then headed downstate with my baby. We were there for 2 days; the doctors had been talking with U of M since they have more experience with KD. U of M instructed them to monitor Adrian for 48 hours after the IVIG. It was a slow couple of days, but I was glad to stay just for the fact that I had no idea what I should look for myself as far as a reaction or relapse.
We did have a couple visitors while we were there. Amy R popped in between appointment (she works there) and Shelly J stopped in with her daughter (who has babysat for us a couple times) and brought Adrian a gift. He slept the entire time they were there. Kate H also came with her sister and of course, Adrian's buddy Chad. I don't think those boys really knew what to think of the situation. They brought him a gift as well. He certainly had plenty to play with while he was there although in all honesty, all he wanted was to watch cartoons since he doesn't do that at home. I was/am in the mindset of let him do whatever he wants (within reason) since he's been through so much.
We made it home just a few hours before Jeff and Isaac on Tuesday (the 10th). For the next several days Adrian was worn out, but slowly started getting up to play. He was eating and drinking again as well. At the hospital he really only ate on the last day, and then he really ate which was great to see. He's been playing outside a little bit and he's back to fighting with Isaac. He is incredibly irritable. The littlest thing sets him off. It's a side effect of KD but I'm hoping and praying that it isn't permanent. It's easier to be patient now when we're still in the beginning of recovery.
I'm holding my breath now, just waiting to get through the next 7 weeks. The treatment at this point is aspirin: one baby aspirin per day for 8 weeks following treatment. (In the hospital, it was 4 baby aspirins, 4 times per day, yikes!) It is my understanding that with KD, blood platelet levels can get incredibly high so the aspirin works as a blood thinner to help prevent any blood clots.
We already had a little scare yesterday (Saturday). Adrian woke up early in the morning telling me his belly and his neck hurt and he had a rash over most of his body. It was a different rash this time, tiny little raised bumps. It was hard to see and only slightly red in some areas. I called pediatrics and talked to the doctor on call (who was a different doc than we had been working with) she told me to go to the E.R. and they would notify her when we got there. We ended up there for about 5 hours. They took some blood samples, checked his temp, felt his neck and checked out his belly. In the end his blood work came back as expected (improved from a few days prior) and they didn't see any reason to run any more tests. We have our first follow-up appointment on Monday so I'll be sure to ask the Dr. then what would warrant us coming in again. I can't take all these hospital visits! And either can Adrian, the poor buddy.
We'll have weekly blood draws until he's off the aspirin which will be at the end of 8 weeks or when his blood platelet levels are normal--whichever comes last.