Tuesday, April 9, 2013

March 12, 2013 First Follow up visit

Evan was released from the hospital and we started him on a low dose aspirin regimen.  Kawasaki Disease is one of the rare occasions where it is ok to give children Aspirin.  He doesn't like taking medicine at all, so it is pretty difficult to get it down him!  Luckily the baby aspirin is flavored and dissolves in water fairly easily!  We were told to give him 1/4 tablet once a day and follow up with another Echocardiogram in 2 weeks.  

We took him to his regular pediatrician two days after his release from the hospital and she wanted us to go back to Houston for his Echo, even though TCH had said we could go closer to home.  So we waited for them to send the referral over.  That took almost a week.  We are looking for a new pediatrician!  It's impossible to get them to call you back!  Anyways, we finally got the appointment scheduled for March 12, 2013.

Eddie was on the boat, so Andrea came with me.  Evan still had red cheeks and his lips were still a little chapped also.  Other than that he was doing great.   He behaved well for his echo.  I was able to feed him a bottle while they were doing it and he held pretty still without having to be sedated.  I was relieved about that!  While they were doing the echo, the nurse asked us if we had a cardiologist yet.  Andrea and I thought that was kind of a strange question, but we told the nurse no, that his first Echo was normal.  You could tell she probably shouldn't have said that and she changed the subject quickly.  

After they were done, the nurses told us if we didn't hear back from our pediatrician quickly to start calling them.  Also, strange thing to say.  So they said we could leave and they would let our pediatrician know the results.  We went to eat and headed home.

I was driving home and Andrea was in the back seat with Evan.  We were almost to Baytown and anxious to get home.  My phone rang and it was my pediatricians office.  I million things ran through my mind in the time it took me to answer that call.  My heart sank.  I knew something was wrong.  When I answered, she calmly asked where we were and if I was driving.  Of course I start to panic.  She told me to pull over, that she needed us to turn around and go back to Texas Children's to the ER there.  They would be waiting for us.  I pulled over and she explained what was going on.  The echocardiogram showed some dilation in his coronary arteries.  She assured us that we caught it early and with proper treatment he should be fine.  I broke down in the gas station parking lot.  But I had to pull it together and call Eddie and tell him what was going on.  Andrea drove back to the hospital while I made phone calls.  We hadn't brought anything with us, we weren't prepared to stay of course!  

Once we got back to Texas Children's we had to wait in the ER for what seemed like forever.  The Cardiology team was trying to consult with the Rheumatology team to get together a plan of action.  They called in Rheumatology since Kawasaki Disease is the inflammation of the blood vessels, and Rheumatology specializes in the treatment of inflammatory and auto-immune diseases.   The cardiologist came in and explained what was going on.  Three of his coronary arteries were enlarged and they worry about aneurisms when the arteries start to dilate.  They were going to admit him and come up with a treatment plan.  We were admitted at about midnight and they would decide what treatment would be in the morning.

The next morning, the Rheumatology team came to see us.  The examined him and showed us some spots on his toe nails and fingernails.  He had very tiny blood clots under a few of his nails.  Everyone seemed pretty intrigued by this and several different doctors came in to look.  She explained that sometimes when you have small bloodclots they will settle under your toenails or fingernails.  We needed to start him on another medication to help with the blood clots.

They tried one medication for 2 days but every time he took it he would vomit.  They decided that it was not worth it to have him sick and fight so hard to take that medicine, so they decided to only have him take Prednisone for the swelling and keep him on the aspirin therapy to help keep his blood thin to avoid clots.  After they had his medicine regulated we were able to go home!  We were released again on March 14th. We only spent two night in the hospital this time! 

We were told to return in a week for another Echocardiogram.  The doctors told us we would be getting to know the Cardiology and Rheumatology team well!  That's ok with us as long as our baby Evan gets better!

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