Friday, April 19, 2013

Happy 1/2 Birthday Evan!

Our little man celebrated his 1/2 birthday on Monday!  We didn't really celebrate literally, but you get my drift.

He has had a few firsts this week:

1.  He is putting his knees up under his chest while on his tummy.  His head is on the ground though, it's pretty funny.  I'm sure crawling isn't far away.  yay
2.  We are working on sleeping without the pacifier.  I cannot get up 12 times a night and replace it anymore.  Mommy is TIRED.
3.  He is loving his baby food now :)  Today he tried carrot, apple and parsnip mixture and he ate the whole pouch!  Maybe this child will finally be a veggie lover?  I can hope!

Nothing has changed as far as his health goes.  Still taking baby aspirin and waiting on the lab results.  We had to go to a local lab on Monday because the blood they drew at Texas Children's on his last visit with the Rheumatologist.  They said it clotted in the tube.  He was very brave for his bloodwork and the technician got it on the first stick.  What a relief for us all.

Hopefully we will get good news on the bloodwork and he can discontinue the aspirin!

Thursday, April 11, 2013

Getting bigger and stronger everyday!

I received a call on Tuesday from the Rheumatologist at Texas Children's.  At our last visit with them, they drew blood for a CBC to check his platelets.  They had been high the last time they checked.  They had a lot of trouble getting blood and she said the blood was clotted in the tube so they could not get results.

She said we needed to go to a local lab and have the blood redrawn.  If everything looked good then we could stop the Aspirin.  I guess the Cardiologist and Rheumatologist did not communicate because his Cardiologist told us to stop the Aspirin last week!

Now we are back on Aspirin until we can get the results of the new bloodwork which we will have drawn on Friday!  She is concerned about his platelets count being elevated and having them stick together.  So back on baby Aspirin again!  Poor Evan is so sick of taking medicine!  

He has just started eating baby food in the last week.  He loves applesauce so far!  We tried bananas last week but he developed a small rash the next day, so we will try those again later.  Not sure if it was a fluke or due to the bananas.  Evan is a little piglet.  He screams at me in between bites.  "Faster mommy, I'm STARVING!"  I'm sure that's what he's thinking.  

I love how BIG he opens for the itty bitty spoon :)

Needless to say, Evan has become pretty spoiled during the last 6 weeks.  (As if he wasn't spoiled enough already.)  His favorite place to nap is mommy's arms.  While I love to hold him and snuggle him, I do have 2 other children to take care of and a house to run.  It can get pretty overwhelming when Eddie is on the boat working.  The last 3 days I have been working on getting him to nap in his baby bed.  He puts up a little bit of a fight for about 15 minutes but he does well after that.  This morning he napped for 2 hours!  (so did mommy).  

Night time is a different story.  He usually sleeps in his bed the first part of the night and then ends up in our bed for the other half.  GASP!  I know, horrible right?  Admit it, you brought your babies to your bed too when they were little ;)  I just don't have the heart to listen to him cry!   I know, I'm a sucker.  At least he's napping in his bed now.  Night time will get there eventually, right?  I sure hope so, this momma is worn out!

Tuesday, April 9, 2013

April 5, 2013 Another follow up Echocardiogram

Andrea and I took Evan for another Echocardiogram.  He had to be sedated again.  This time he did not want to go to sleep as easily!  He had taken a 20 minute power nap in the car on the way and didn't want to go to sleep for nurse Jenny!  After some struggling he finally went to sleep and they could start the echo.

Everything went smoothly and he woke up well from the sedation.  We had a few hours between the echo and they visit with the cardiologist so we walked across the street to have lunch.  It was Evan's first time to sit in his stroller without the infant carseat.  What a big boy!

We went back up to the waiting room after lunch and waited for the doctor.  Poor baby was so tired and fussy from the sedation!  He drank a big bottle and went back to sleep!

His cardiologist was quick and easy once he came in!  He said that his arteries were normal and that we could stop the prednisone now and also stop the baby aspirin!  We are able to start spreading out the time between the echocardiograms.  We won't need to return for 6 weeks for another echo!

We are so blessed and happy that he is getting better!  Thank you everyone for the thoughts and prayers!  We are so grateful for each and every one of you!!!

March 27, 2013 Rheumatology appointment

Today we had an appointment with the Rheumatologist at Texas Children's Hospital.  We had a great visit!  She was very pleased with is previous Echo and said that it was pretty much normal now!  We are going to wean him off of the prednisone now.  He was so happy and talked to the doctor the whole visit.  She was glad to see him feeling so good!

We are in awe at the power of prayer!!!!  It is truly a miracle that his arteries have gone down to almost normal size for his age!

March 22, 2013 Another Echo!

We went back to Texas Children's once again for another follow up Echo and a visit with his new Cardiologist.  This time he was going to be sedated.  We packed an overnight bag this time just in case!

We had to be there by 8am so we decided to spend the night in Houston to make it easier in the morning.  Eddie was working so Andrea came with me.  We booked  nice hotel room and left that night to get settled in.  After we arrived we ordered room service and enjoyed the room for a while.  Evan and I slept together in the bed and he slept well.  Me, not so much.  Andrea snored all night and I was nervous!  ha ha.

We got up bright and early to drive to the medical center for the test.  When we arrived they took us right back and gave him the medicine to sedate him.  He went to sleep easily and they started the echo.  The technician seemed to be concentrating on one spot a lot and it made me really worried.  I prayed quietly for God to lay his hands on us and guide the technicians hands during the echo.

After he woke up, he was able to eat and he went right back to sleep.  We waited for our appointment to see the cardiologist which was scheduled right afterwards.  I was so nervous.  All I kept thinking was that he was going to tell me that Evan had a giant aneurism.  He came in after he looked over the results and said that everything looked wonderful!  His arteries actually measured small than they had on his previous echo.  God is good!  He has answered our prayers!!!!  He would get with Rheumatology to let them know the results and then let us know when to return for another echo.

 We left so excited and relieved!  We had finally received good news!

Sedated for his Echo and EKG

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!


The rash covered most of his body.

Strapped in and headed to the airport.  poor baby was so swollen

Receiving the IVIG 

We are so blessed to be a part of such a wonderful family and community!

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....