This is extremely long, and I understand if youd rather skip it all!  But this is it, beginning to current, if youre interested.
Wednesday, August 13th – I had planned to take Abby and Sara for their required vaccinations, the last round so they could start school.  But Sara woke up with a bit of a fever, so I had to put that off for another day.  We spent the day lounging at home, while Laurie Bee, Marcia, and Stacie went to the Nashville area to stalk Christian and country music stars.  They were pretty successful – Laurie Bee and Stacie talked to Toby Mac, and they found the homes of Tim McGraw (and his wife, ole what’s-her-name), Martina McBride, and came close to Carrie Underwood’s. 
Sara had a little breakfast that day, but refused lunch and preferred to nap, then refused dinner and asked to lay on the couch.  At this point, I wasn’t worried at all – when she’s not feeling well, this is what she does.
That night, Sara creeped downstairs to our room – in the dark – and woke me up saying that her belly hurt. I first thought that she was just hungry, and came upstairs to fix her some toast. When I got back down to her (on the couch downstairs) with toast and water, she was really upset and very queasy. We came upstairs to the bathroom (trying not to disturb Stacie on the couch upstairs, and Marcia on the bed in the living room). Sara retched and fought the urge to vomit with her father’s determination. I ended up giving her a dose of Gravol (purchased in Canada last year – an anti-nausea medication for children), since she would not throw up, and needed relief. I stayed with her on the downstairs couch until she was drifting off to sleep, then went to my bed in the next room.
Thursday, August 14th – Sara’s eyes were a bit bloodshot, but we chalked that up to the retching. We all stuck close to the house that day, hoping that Sara just had a little bug. Rob and I had tentative plans to go out to dinner that night, with the offer of free babysitters and all. Sara had a fever that was erratic. I was able to coax her into eating some banana slices, and applesauce, before her nap. She slept for a long time – 3 hours or more I think? When she got up, she came downstairs to find Rob and I, and within about 3 minutes she threw up. We ordered in Chinese food for everyone for dinner.
I went to bed really early that night – I was wiped out from the long week, and being up with Sara the night before. Rob and the visiting ladies stayed up watching a movie, and Sara woke up late in the evening feeling unwell. She threw up everything that Rob gave her, from Motrin for her fever, to sips of water. He came to bed late (or early, if you’re looking at it from the morning). I was up several times during the night with Sara, and her eyes were becoming quite alarmingly red.
Friday, August 15th - I called the pediatrician’s office as soon as they opened at 8:30, and we got an appointment for 10:45. Rob and I took Sara to the doctor that morning, and luckily MMMT was still here to stay with Abby. Dr. Rob checked Sara over, gave her a shot of Zofran to stop the vomiting, and did a rapid strep test; the strep test came back positive. We waited in the office for the Zofran to take effect, then started giving Sara sips of Gatorade to make sure she could tolerate it – which she did. She was still lethargic, her lips were dry and crackly, but she was glad to drink something and keep it down. Dr. Rob was puzzled by her eyes – he was on the fence as to whether it was caused by the retching, or possibly by Adenovirus. Dr. Rob brought in Dr. Bud, the founding pediatrician, to familiarize himself with Sara in case we needed to go back that afternoon (if the vomiting started again), and also because they wanted her back on Saturday morning when Dr. Bud would be there. Sara started on Keflex that day, to treat the strep throat.
Soon after we got home, MMMT had to head north again. We were sorry to see them go, but at the same time I didn’t want them to catch anything while here and the distance would keep them safer! I did a major Lysolling of the house, changed sheets, etc. Sara slept a good deal that afternoon, and was up a few times during the night.
Saturday, August 16th – Rob took Sara for her appointment with Dr. Bud at 8:30. He wanted us to really push the fluids on her, as she still had the dry lips. That day, she wanted scrambled eggs – and lots of them. Things were looking up! Dr. Bud wanted to see her back on Sunday; the office isn’t open Sundays, but he asked Rob to bring her in regardless.
Sunday, August 17th – Rob took Sara for her 10:00 appointment with Dr. Bud. He examined her closely several times, for what we didn’t know. He told Rob to take Sara to the nearby hospital for blood work, but didn’t want to alarm us with his suspicions. We were, of course, alarmed. Way alarmed. After I settled down and thought about what he said (if it was what he was thinking, it HAD to be treated within 10 days of onset), I stopped thinking the worst horrible diagnoses, and realized that it had to be something infectious. Still, very alarming. I called the top of our church prayer line, requesting prayer for Sara.
Dr. Bud had told Rob he’d only call that afternoon IF there was to be a change in her medication (Keflex, Motrin as needed) – that we would talk more at our 9:00 appointment on Monday. Then he called around 5:00 pm Sunday – he had a lot of information, but what it boiled down to was he suspected Kawasaki Syndrome, and that we would need to be at his office at 8:30 the next day for another exam, a chest x-ray, and should expect to end up at Children’s Hospital. It was a difficult evening – trying to prepare for all of this, wracking our brains wondering who we could get to take care of Emily and Abby. Our options were extremely limited, and none without major complications.
Rob talked to his mother after the girls were in bed, to let her know what was going on. She and his dad were alarmed too, and offered to pack up and drive (over 8 hours) to come help with the girls. We wouldn’t have asked, but we couldn’t say no either! We really needed someone who could be here ASAP, stay at the house, get Emily to school, and take care of Abby. Someone familiar with their routines was a bonus! So, we started getting things together in a couple of bags for the next day, for ‘just in case.’
Around 9:30 pm, we checked Sara’s temperature in her sleep – no fever! WOOT! We did a happy dance in the kitchen, because surely this meant that she was fine after all!
At 10:00 pm, Dr. Bud called. He told Rob he hadn’t been able to stop thinking about Sara, and decided that it was time to move. He wanted Sara up at Children’s ASAP, to get the admission and testing process started. His feeling was that if we waited until Monday as planned, by the time she was admitted it would be late afternoon and we’d lose a day waiting things to get started. And he was absolutely right. So, Rob and Sara left for the hospital around 10:30. It broke our hearts, but it was what had to be done.
Monday, August 18th – My morning began with having to tell Abby and Emily that Sara and Daddy had gone to the hospital during the night. They were both upset that they didn’t get to give her hugs and kisses before she left, but they were happy that Nana and Papaw were coming to take care of them. I got Emily to school, left authorization at the office for Nana and Papaw to be able to pick Emily up, and Abby and I bolted for Children’s Hospital. We got there shortly after Ron and Sharon, who had driven through the night.
During the early morning hours, they had done the chest x-ray on Sara, started her on an IV, and drawn additional blood; they needed that to test that the strep culture was accurate (it was) and test for Adenovirus (came back negative). We met with the general pediatrician on the floor, who was on the fence – either Rheumatic Fever, or Kawasaki Syndrome – but the symptoms didn’t entirely fit one or the other! The Infectious Diseases Specialist (IDS) came in later; at first he said things like “we’ve got time to figure this out, no need to rush” then 20 minutes later he summed up his opinion with “if it isn’t Kawasaki I don’t know what it is, so let’s get the treatment for Kawasaki started.” This was alarming to us. We weren’t comfortable with starting the treatment, because the treatment had enough risks on it’s own. We decided to wait for the results of the echocardiogram done that afternoon, and blood work (Adenovirus – came in negative that night), and would make a decision the next day. Sara’s fever was all over the place that day/night – from no fever at all, to 103 an hour later.
Treatment for Kawasaki includes:
IVIG (intravenous immunoglobulin) – transfusion of blood products. Transfusions can be risky because even with strenuous testing, there can be issues in receiving someone else’s blood/blood products. Also, it can result in a potentially serious reaction in the recipient. And, if we weren’t dealing with Kawasaki after all, and we did the IVIG, then the foreign blood products would invalidate other tests that may be needed in the future (to the tune of 6 months) and would make diagnosing whatever it WAS difficult. Plus it would mean no live-virus vaccines for Sara, until July 2009 – but that was the lesser concern.
Aspirin – initially, high dose aspirin therapy, then switch to low-dose aspirin therapy for one to three months. With aspirin comes the risk of Reyes Syndrome – which is scary enough in itself.
We really needed to be more sure of the diagnosis, before proceeding with the treatment.
Monday night, Rob slept on the window bench seat, which was actually pretty long and wide – it looked really good to me, from that recliner that wanted to fold me up like a pretzel when I tried to move.
Tuesday, August 19th – At 8:30, the general pediatrician (GP) came in with good news – “I have a diagnosis! It’s Rheumatic Fever!” She had spoken to the Cardiologist, who felt after looking at the echo results that it was RF. We had a diagnosis, which meant there was a treatment plan – yay!
That lasted for less than 10 minutes. The GP came back in and said she had spoken too hastily, that she called the IDS and told him Cardiology’s opinion and he disagreed – he felt that the results of the echo were not specific to RF, and did not rule out KS. Later that morning, the IDS came in and spoke with Rob and me. This time he made his case more clearly for us, and said that he had asked the Cardiologist to come up and examine Sara, then Cardio, IDS, and GP would meet and come to a conclusion. All that done, and they agreed: Kawasaki Syndrome. We agreed that they could start the IVIG treatment that day. It started around 2:30 pm, and Sara had a hard time at the beginning – it’s a thick fluid, and it felt as though it burned as it went in. The nurse initially wanted to take out her IV line, and reinsert it, thinking that the line had slipped…EEK. But then she allowed that she could try icing Sara’s hand first, and see if that helped – which it did. It took over six hours to get the IVIG in, and once that was done and flushed they disconnected the IV. We were free to move about without the ‘big tree!’ We went for a walk around the hallways (yes…at 9:00 pm), and Nurse Stacey gave Sara two popsicles. And ice cream. She said it was a good idea to get extra fluids into Sara.
Wednesday, August 20th – I left the hospital at 6:00 am, and came home to surprise Emily and Abby. Once Emily got over the shock of seeing me walk in, her first question was “Is Sara with you?!” And I love that. I took Emily to school, then came home and made her birthday cupcakes to go to school the next day. Abby and I spent some time together (she helped decorate the cupcakes) while Ron and Sharon went up to visit with Sara. Abby and I got there just before lunch – and eventually found Sara and her entourage in the play room! What a major difference…she was clearly feeling sooo much better, and her eyes were clearing up as well. Sara tired easily that day, and was very cranky before her nap – but it was all because she finally felt well enough to do something!
Thursday, August 21st – Emily’s birthday! We saw the GP that morning, and the IDS – he said that we may as well get Sara dressed because she looked good to go. We waited though, because Cardiology still had to release her. Still, we cautiously packed up and made two trips out to the van. Sara was officially discharged around 1:15 pm. Rob and I went together to pick up Emily from school, and she was so happy to see us and that Sara was home.
Two things that made the diagnosis difficult were the fact that Sara started with strep throat – which has not been seen with Kawasaki before (but is associated with Rheumatic Fever), and her lack of a rash – IDS said only two other cases of Kawasaki have been reported without a rash. In the end, we’re so thankful for her recovery, thankful for our pediatrician’s diligence and care, and for everyone’s prayers. It was a difficult week, but we made it through with everyone’s help.
Sara is restricted from running and jumping, anything that would get her heart rate up – for now. She’s scheduled for a follow-up echo in mid-September, and appointment with IDS. We’ll have another follow-up with Cardiology in November to make sure there hasn’t been any permanent damage to her heart. We also have to be alert for a recurrence of symptoms – red eyes, fever, lack of appetite. I hope and pray that doesn’t happen, but if it does at least we’ll know what we’re dealing with.
To look at Sara today, you wouldnt see how sick she was just one week ago.  She looks perfectly healthy, and I pray she stays that way.  Abby and Sara start pre-school tomorrow afternoon, and they are both very much looking forward to it.