Saturday, March 31, 2012

80 degrees, Kawasaki, and other thoughts on spring

March came in like a lamb--that was for certain.
In other places across the country there were snow storms, tornadoes, rain, cold weather...nasty things.  But here, it was a calm, beautiful day.  I had to explain to Maire that even though it felt like the first day of spring it was not really spring yet.  In the afternoon I even had to remind Rachael that it was March and Sarah said, "Oh yeah, it's March 1st today!"

And the next two weeks went just like that--"Wow, beautiful weather!!"  "Mom can we play outside?"  "No, I don't have any homework."  And it was so nice outside and i wanted them to play outside, so I hardly called them in to do housework either, and we got used to lazy beautiful days.

This is what my baby looked like on those beautiful and normal days.  She would 'help me around the house.'  (And the house looked like that too, because of, you know, the baby).

She would play with me, do "toss it in the oven" from Pat-a-cake and started to take a few steps.

But then strange things started happening.  Well, they weren't so strange at first, just a cold.  She got a runny nose and a little bit of a cough--but not too often.  That was on a Wednesday.  By Thursday night, something else was wrong.  She wasn't sleeping--hardly at all.  She got a fever, she was pulling at her ears and hair, she wasn't easily comforted.  The next day being Friday I of course took her to the doctor because I don't like weekends without answers.  The nurse practitioner said that an ear infection is probably the culprit, put her on Zithromicyn and we went home.  

Friday night was worse.  The tylenol wasn't bringing down the fever  of 102.8 and she wasn't sleeping or feeling better.  Saturday we started ibuprofen to try to bring down the fever, but that didn't seem to be giving her any relief either.  On Saturday afternoon we noticed a rash.  
rash on her face and neck--sad mouth and eyes :(
her tummy and back were all like this

Rashes and fevers aren't so strange in places that might get sweaty or warm, like in skin folds or underneath clothing.  But she got a rash on her face?  It was around her eyes and mouth.  She did not look well.  It did not subside and then i noticed it on her trunk and back--all over.  A call to the doctor suggested it might be an allergic reaction to the anit-biotics.  So we went to the ER.  Without looking at her mouth, nose, ear, or anything the ER doctor said, "It could be an allergic reaction, but it looks like a viral rash so the change in antibiotics might not do anything.  But here you go."  
Another sleepless night.  The fever was up high again.  

She stopped eating.  She would take a bottle for a little bit but not very much.  She vomited the ibuprofen so I was afraid to give her more unless she got something down her tummy.  She spend most of Sunday on my lap in and out of sleep.  I thought to myself, "This is the worst day, the antibiotics will bring the fever down and she will start to feel better tomorrow."  

Monday I decided I didn't want to pay the $20 co-pay to have the doctor confirm that she had a virus and i just needed to wait it out.  So I just called to let them know she went to the ER and we'd followup in a few days.  But by the afternoon her rash got worse.  A few spots were raised and it spread down her arms and onto her hands.  

rash on inside of her elbows
can you see the rash on her hands?
But by then, i couldn't get an appointment with the doctor, he was booked.  I set up something for Tuesday morning and prayed that she would make it through the night OK.  In the evening when we took her temp under her arm (she didn't like the ear one any more) it read 104.5.  I took her to the ER again.  She registered at 103.8 at the triage and they gave her motrin and her fever came down. (Remember I wasn't giving her ibuprofen except when I could get her to eat at least 4 oz in one setting so she wouldn't vomit).  But she did not vomit this time and the fever came down for the first time since Thursday.  It was at 99.5.  They also tested her for flu (negative).  She was feeling better and actually tried crawling around.  But I asked if there was some other test they could do.  There was something more going on than just a viral infection, I thought.  The doctor replied that there were many more tests they could do, but he didn't think they would be needed.  
I should have stuck to my guns. 

Monday was a horrible night again.  I kept my doctor's appointment from the day before, brought her in and they could tell right away something was not right with Erica.  "THANK YOU!"  was all i could think.  The nurse practitioner called and consulted with the doctor.  The Doctor went and consulted with...someone, or something else.  (internet?  a book?  another doctor?)  He came back, said it might be Kawasaki Disease and told the nurse to contact the "Infections Diseases" doctor and get Erica in to see them that day.  I'm thinking, "KawasakiInfections? Disease?"  
The nurse returns telling me to take Erica to the Fairfax Children's Hospital and go straight to the ER.  She gave me a piece of paper and told me Erica would probably be admitted.  
??!!  great.
Actually it happened really fast.  I was overwhelmed and relieved all in the same moment.  Overwhelmed because I was taking my baby to be admitted to the hospital.  But relieved because someone finally agreed that something serious was wrong with my baby. 
I went home, called and asked my mom to drive me so the car would be available at home, googled "Kawasaki" on the internet, read one site that said 1% of children die from it, stopped reading anything on the internet, packed a bag and left.  

The hospital visit was for 5 days and 4 nights.  It was long but i did feel peace about what was going on.  I felt assurance from God that Erica would be all right and that these doctors knew what they were doing.  There was a team of doctors--the attending doctor at the hospital, the infectious diseases doctor, and then a cardiologist.  She was hooked up to an IV for the majority of her stay (although she pulled it out twice).  She hated getting her blood pressure taken, hated getting medicine (tylenol and motrin and baby asprin), and hated being awakened from sleep in order to do any of those things.  She loved going for a 'walk' in the hallways, even when attached to the IV, and waving to the nurses and other patients.  
At home my mother, sister, and mother in law took the kids and got dinner.  Then other friends from church and my visiting teachers offered help and even came to do laundry and clean my house.  Papa took on another full time job and hardly got any rest between going to work and then getting everyone fed, in bed, and completing homework.  I could feel the prayers of so many people giving Erica strength and health and giving me peace and frankly enough energy to keep me coherent.

Erica came home on Saturday night.  All was well again.  I was ready to go back to March being like a lamb again.

But that was not to be.
The week of March 19th:  Maire came home from school early crying because of a bad ear ache.
Rachael came home with a fever.
Elizabeth came home with an upset stomach.
Rachael went to the ER because she was having trouble breathing and they gave her some epinephrine and  told us she had croup.
The next day Rachael and Maire went to the doctor.
Maire got zithromax for her ear, and Rachael got some steroids because of her cough and she also got another breathing treatment.
Rachael continued to wake up every night with a fever and/or difficulty breathing.
Sunday I couldn't get out of bed.  My throat hurt and I was too tired.  Seriously, i didn't get out of bed.  Until 2:15pm. And then only because Eric woke me up because he had to take the girls to church and he couldn't take the baby because he had to teach primary.  Somehow I got downstairs. Somehow I sat on the couch for an hour.  Then gave the baby a bottle, put her down for a nap, and went back to bed.  I woke up in the middle of the night when Rachael came in with another fever.
Monday, March 26th Rachael got zithromax for bronchitis.  I couldn't get a doctor's appointment.
Tuesday I got penicillin for strep.
Sarah's throat started hurting too.  But her strep test on Tuesday was negative--they sent it to a lab.
Rachel still had a fever, but was finally feeling better (and sleeping).
By Thursday the test came back that Sarah did have strep and she got penicillin.

Today, we are all well.  Sarah and I gag down our penicillin (that is nasty stuff) twice a day, but we are feeling better.
And here is April 1st.
Thank goodness March 2012 is over.