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!

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!

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!

Pictures

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!