Tuesday, April 9, 2013

The diagnosis: February 20th-26th 2013

On October 15, 2012 my husband Eddie and I were blessed with our third child, Evan Manuel Heredia.  We had said we were finished having children after our second child, Liliana Marie, was born, but we both felt "something was missing". Little did we know how much this sweet little man would touch our lives and the lives of our family and community!

The day after his 4 month immunizations, on a Wednesday night, Evan started running a high fever of 103.7.  I called Eddie, who was on the tugboat at the time, and he told me not to wait, to bring him to the ER.  I had his pediatrician paged and he also recommended bringing him to the ER, so off we went.  I had no idea that our lives were about to be turned upside down!

We got in pretty quickly at the ER since our doctor had called to let them know we were coming.  I had given him a dose of Tylenol after I took his temperature at home, so of course when they checked it it was down to 99.  The doctor at the ER couldn't find anything wrong with Evan.  His ears were clear, chest sounded good, strep and rsv rest came back negative.  They even did chest xrays and all looked normal.  At this point, Evan was starting to get very fussy!  He had not stopped screaming since we got back in the exam room.  The doctor came back in and said they were going to send us home since they couldn't find any reason to keep us.  Before they did though, he wanted his temperature taken one more time.  It had shot back up to 102.5.  After consulting with his pediatrician, they decided to go ahead and admit him for observation.

They started an IV and we were sent upstairs to our room.  Evan and I slept pretty well that night.  They woke us up bright and early for more bloodwork and to run a few more tests.  They also repeated the chest xrays. Everything came back normal again.  His temperature had continued to go up and down all night.  It would go down to about 99-100 after the Tylenol, but them go back up in about 2 hours.  He had also become inconsolable.  If he wasn't sleeping he was crying.  The doctor ordered an IV antibiotic to be started.  He assumed it was something viral or bacterial and it would run its course.  So we basically just had to wait.

By Thursday night, he had started to develop redness on his face.  It was very strange.... it was a T shaped rash.  It went across his eyebrows, down his nose and his lips were starting to turn red.  He had also started to vomit and no longer wanted to take his bottles.  Our little man loved to eat!  He also developed diarrhea and a diaper rash.  The doctor felt the vomiting was either due to the antibiotic or part of the virus he suspected.  They continued the antibiotics and we were assured it was probably a virus that would take about 4 days to run its course.  So we waited some more.

Friday morning and he was still inconsolable unless he was sleeping.  We were exhausted.  Eddie had been driving back and forth from Cameron to be with us as much as he could. My sister Andrea was also coming up there to help as much as possible.  We all were starting to feel that this was not just a virus.  Something more was going on!  By Friday night, his temperature spiked up to 104.9.  The nurses warned us that he might start having seizures.  They tried to cool him down by putting cold towels on top of me and he laid on my chest.  Then they put more cold towels on top of him.  He was screaming the whole time, and I was in tears.  All I could picture was my sweet little angel having a seizure in my arms.  Why wasn't the doctor doing more to help him?  Something was not right!  The Tylenol was not bringing his fever down anymore so they started using Ibuprofen also.  Then a new symptom surfaced.  The redness on his face was now spreading.  His neck creases and shoulders were starting to turn red and blotchy.  His diaper area was red and swollen.  He didn't want to be touched, but he didn't want to be put down either.  We were both a hysterical mess.

Saturday morning when Andrea came back to the hospital, she took one look at Evan and said he needed to go to Houston.  She noticed that he looked swollen all over.  I guess I hadn't noticed since I had been with him the whole time.  The whites of his eyes were also red.  He didn't want his pacifier or bottle, it was like his mouth hurt.  The doctor looked in his mouth and throat and everything seemed ok.  Was I just being an overprotective mother?  When the doctor is telling you these symptoms are nothing to worry about and probably all due to a virus you seriously start to question your own sanity.  But deep down I knew that something was wrong with my baby.  I walked down to the nurses station after the doctor left the room.  He was still sitting at the desk.  I told him that I didn't want to be here another night, that I wanted to go to Texas Children's Hospital in Houston.  He said he would put in a call and consult with the doctors there.  So we waited again.  

Several hours passed and we had not heard anything. I was getting angry.  His fever was still high, he was still screaming and I was ready for answers!  I had the nurses page him several times.  He finally called back and said that they were initiating transfer to Houston.  Praise God!  I knew we would get answers there.  It took several hours before we heard when we would be going .  The nurses said they were sending the Kangaroo Crew for him, which we assumed was an ambulance.  Later that night, they arrived.  They were awesome.  It took them about 3 minutes for them to assess him and hook him up to their machines.  Then they asked who was going to ride with him in the airplane.  What, what?  AIRPLANE?  Was it that serious that they needed to send him by plane?  No time to worry about that, Evan and I were taken by ambulance to the Southeast Texas Regional Airport and flew in a tiny Texas Children's airplane to Hobby Airport in Houston.  The flight only took about 30 minutes and I was praying Hair Mary's the whole way.  Evan actually rested the whole way there.  I think he was exhausted and maybe he knew he was going to finally get some help!  It was pretty scary.  Eddie had to drive and meet us there.

Texas Children's had their ambulance waiting for us at Hobby Airport.  We soon arrived at Texas Children's and they took us straight up to our private room.  We were not even there for 5 minutes and a doctor walked in and told us a diagnosis.  She told me that my son has Kawasaki Disease.  A rare disorder that causes the blood vessels in your body to swell.  It is very important to get a quick diagnosis and start treatment quickly to avoid damage to the coronary arteries of the heart.  I was in shock.  How did they know what was wrong with him without even looking at him?  This place was amazing!  Eddie arrived not long after we did and I told him what the doctor had said.  We were both trying to process it all, but we were relieved that we had answers.

The doctors said we would start the treatment of IV Immunoglobulin in the morning.  It would take about 10 hours to complete.  They give it slowly over time to make sure that there is no reaction.  He did well with the treatment and his fever started to slowly go down. His rash was getting lighter.  He was starting to sleep a little better.  

Monday morning they took us to have an Echocardiogram done of Evan's heart.  They wanted to check for any dilation of his coronary arteries.  He had to be sedated for this, so of course we were very nervous.  Luckily it was just a light sedation and he woke up from it just fine.  When we got back to the room after the Echo, Evan started to want to eat again.  He wasn't taking as much as usual but it was a start.

His echo results came back all clear and they said if he remained fever free we could go home the next day!  He was actually starting to smile again!  We were finally starting to feel like we could relax, that he was going to be ok!!!!

Tuesday afternoon we were released.  We were so overwhelmed with the outpouring of prayers from family and friends and even complete strangers.  We live in a wonderful Community!!!!

More updates to come....

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