James was scheduled to see his pediatrician this morning. She's on call this weekend, and decided on Thursday that she wanted to see him bright and early today, regardless if he seemed better or not. Last night, we thought he was getting better. He ate a good dinner (for the first time all week) and he smiled and chased us around the house. But then he woke at midnight, with his temp above 100 again, and a couple of new symptoms: red eyes and swollen lymph nodes. Two more symptoms indicative of Kawasaki Disease. His doc quickly decided that even though he didn't have all the signs, and his fever was far from the 104 usually indicative of Kawasaki, he showed enough symptoms to put him in the "atypical" category. Meaning that he had to be admitted for 12 hours of IV antibiotics and other tests.
Cora and I joined the boys and Jean at lunch time, after they were settled into the pediatric unit. James wasn't willing to eat (anything other than ice cream or jello, anyway), but he did enjoy feeding fries to his Daddy.
By the way, when they weighed him in, he was 30.4 lbs. That's almost a pound less than he was 5 days ago. Not a good thing. I wasn't there when he got his IV, but Jay reported that while painful to watch him go through, it really wasn't too much trouble. Except that it took the nurses a few tries (poor kid). They started him on fluids right away and attached a clean-catch bag for a urine sample. And they took blood for new bloodwork, as well.
After they started the antibiotics, they had to continually check his blood pressure and temperature to make sure he didn't have a negative reaction to the medication. James HATED the blood pressure cuff. He screamed in terror every time it tightened on his arm. That was a long 15 minutes. And while that was going on, he got an echocardiogram from the other side of the hospital bed. He didn't mind that much at all though. We just explained to him that the guy was taking pictures of his heart, and we got to see and hear it beating, and watch the blood flowing. After a few minutes we had him repeating "hawt" and "cool". Because it WAS cool to see. And really cool to hear that little swoosh-swoosh-swoosh, just like we used to hear on the doppler back when I was still pregnant with him. After the echo, he slept for about an hour in my arms.
When the nurse came back to check his bp again (they have to check it every hour while he's on the antibiotics), he woke just enough to fuss, look at me and demand "Sing!", then drift back to sleep while I sang (poorly, I admit) "Somewhere Over the Rainbow" (the one song that has always calmed him). Not long after that, a very rude man from x-ray barged in and told us to hurry up and get him up. When it took us longer than 30 seconds, he told us he'd be back for him later. Jay and I were ready to strangle him. In fact, I told him in no uncertain terms that he could use a bit more patience, and that my very sick 2-year-old child would be ready in 2 minutes and there was no way he was making us wait now that he had so rudely awoken him. Jerk. I totally reported him. Not to mention we noticed when we woke him that James' clean-catch bag had leaked. All over me and the bed. Yuck. At least they got enough for testing though. And to top that, Jay was then left waiting downstairs alone with James for 45 minutes, and had to come back upstairs to find a nurse in order to actually get into x-ray. Which was then extremely traumatic for James, since they had to use the medieval torture device to position him.
The rest of the afternoon was pretty uneventful. We watched Wizard of Oz, played (one-handed, due to the IV) with James' new wooden stacking toy train (a little bravery award from us), and fed him M&Ms. He had fun naming the colors. And counting them. (He's getting better at that, by the way. He can go all the way to 8 now. Then he starts repeating 7, 8, 7, 8... Maybe his favorite number will be 7, just like his mama?) His temp finally dropped back to normal. And he ate a full dinner of mac-n-cheese and applesauce. He thought his security anklet was particularly interesting.
By the time I left at 7pm, he had accepted the blood pressure cuff. Now he simply grimaces, then reports "All done!" when the pressure lets up. His bloodwork is clear so far. His urinalysis was clean (hooray for not having to get a catheter!). His x-ray showed that same small spot of pneumonia. His liver function is slightly elevated, but his white cell counts are still normal. The IV antibiotics should finish up around 1am, then he'll get his 2nd dose of oral antibiotics (for the pneumonia/strep). Jay texted me that James finally fell asleep at 9:25pm, and the bp checks will only be every 2 hours through the night. Hopefully my boys can get some sleep. Us ladies came home to wash bedsheets and Lysol the house...
When the nurse came back to check his bp again (they have to check it every hour while he's on the antibiotics), he woke just enough to fuss, look at me and demand "Sing!", then drift back to sleep while I sang (poorly, I admit) "Somewhere Over the Rainbow" (the one song that has always calmed him). Not long after that, a very rude man from x-ray barged in and told us to hurry up and get him up. When it took us longer than 30 seconds, he told us he'd be back for him later. Jay and I were ready to strangle him. In fact, I told him in no uncertain terms that he could use a bit more patience, and that my very sick 2-year-old child would be ready in 2 minutes and there was no way he was making us wait now that he had so rudely awoken him. Jerk. I totally reported him. Not to mention we noticed when we woke him that James' clean-catch bag had leaked. All over me and the bed. Yuck. At least they got enough for testing though. And to top that, Jay was then left waiting downstairs alone with James for 45 minutes, and had to come back upstairs to find a nurse in order to actually get into x-ray. Which was then extremely traumatic for James, since they had to use the medieval torture device to position him. The rest of the afternoon was pretty uneventful. We watched Wizard of Oz, played (one-handed, due to the IV) with James' new wooden stacking toy train (a little bravery award from us), and fed him M&Ms. He had fun naming the colors. And counting them. (He's getting better at that, by the way. He can go all the way to 8 now. Then he starts repeating 7, 8, 7, 8... Maybe his favorite number will be 7, just like his mama?) His temp finally dropped back to normal. And he ate a full dinner of mac-n-cheese and applesauce. He thought his security anklet was particularly interesting.By the time I left at 7pm, he had accepted the blood pressure cuff. Now he simply grimaces, then reports "All done!" when the pressure lets up. His bloodwork is clear so far. His urinalysis was clean (hooray for not having to get a catheter!). His x-ray showed that same small spot of pneumonia. His liver function is slightly elevated, but his white cell counts are still normal. The IV antibiotics should finish up around 1am, then he'll get his 2nd dose of oral antibiotics (for the pneumonia/strep). Jay texted me that James finally fell asleep at 9:25pm, and the bp checks will only be every 2 hours through the night. Hopefully my boys can get some sleep. Us ladies came home to wash bedsheets and Lysol the house... 
2 comments:
So sorry you guys are going through all of this! Despite the horrible x-ray experience, James seems to be tolerating everything well from your descriptions. Hope everyone gets some sleep tonight!
Can't imagine what you are going through. He is a champ and everything will turn out fine. Just couldn't read this without crying. Lots of love and get well wishes and prayers for dear James.
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