Monday, June 10, 2013

Kawasaki Nigthmare -Part 2

If you didn't have a chance to read part 1 you can here:

So I will begin part 2: we made it through the first night in the hospital & Friday morning May 31 he was feeling much better now fever free eating & smiling!  My hope was restored but he still needed his Echo cardiogram & it  had to be 24 hours after finishing the IVIG & fever free for 24-36 hours before they could send him/us home.  Still continuing the Aspirin therapy which is given every 6 hours.
So around lunch time the Cardiologist came in with the tech girl & she was taking pictures of his little heart, seeing my babies heart beating & moving was pretty neat! But I was terrified that something was going to be wrong. See the side affects of Kawasaki are : 
  • Inflammation of the heart muscle (myocarditis)
  • Heart valve problems (mitral regurgitation)
  • Abnormal heart rhythm (dysrhythmia)
  • Inflammation of blood vessels (vasculitis), usually the coronary arteries, that supply blood to the heart
  • Any of these complications can damage your child's heart. Inflammation of the coronary arteries can lead to weakening and bulging of the artery wall (aneurysm). Aneurysms increase the risk of blood clots forming and blocking the artery, which could lead to a heart attack or cause life-threatening internal bleeding.
    For a small percentage of children who develop coronary artery problems, Kawasaki disease is fatal, even with treatment.

    Scary HUH??? Ya my point exactly!!!

    The cardiologist informs me that Carsen will have to have another Echo in 2 weeks then 6weeks & then 6 months & up until he is 5years old to make sure he never develops or developed a complication from Kawasaki. Thankfully during his scan that day everything looked good!

    My husband was off of work to stay home with our other 2 boy's as I refused to be away from my sick baby boy he needed me & I him! My mother in law decided to come down & help us & flew in Saturday so she could be there for the boy's & help around the house!! She has no idea how grateful I am to her for that.

    Saturday June 1st- My Mother in law flew in around Noon & then everyone was coming up to visit I was so excited to see my other babies I have never been away from them that long even when Carsen was born I only had to stay overnight! I missed their crazy behinds so so much!!
     Well while waiting for them to get to the hospital, I got exciting news... Carsen had been fever free 32 hours & his symptoms had gotten much better so they decided we could go home (I had not shared this with anyone but my parents till now) So we went home Saturday June 1st at 2pm it was great to be home until 5pm hit!
      At 5pm after a nap Carsen woke up burning up & his fever was back 101.6 his Rash flared back up his Lips were bright Red again & his Eyes blood shot again! I started Crying because I knew what this meant we were going back to the hospital!! I called & spoke with the Cardiologist & he said you know what I'm going to tell you right?? & I knew we were going back.
    His other Dr that had been seeing him at the hospital also called me and said pack a bag you have to come back. So I packed a bag & off to make the 45min drive again!  A screaming baby who felt awful once again.

    Once we were back they again weighed, measured & took his temperature at this point it was 104. I was so upset once again my poor baby had to get an IV and this time it took 2 tries it was AWFUL he was screaming & struggling & finally he was so tired & sick he passed out. Then came time for medication..
    Tylenol to reduce fever Aspirin for his therapy for anti-inflammatory (my understanding is also to reduce clotting purposes like that of an adult taking aspirin), Benadryl to reduce any possible itchiness for another dose of IVIG! another 8-12 hours of a drip. More Dr's to speak with. They said sometimes kids need more than one dose of the IVIG & apparently Carsen was one of the Few!
    This time they kept his drip on a slower pace so he didn't go through the shaking like the last time! More sleepless hours of holding a sick baby whom I did everything I could for to make comfortable. It is amazing how a mothers body can go days with out sleep and constantly rock & hold a baby.

    Sunday June 2- At 10am Carsen was done with his IVIG and he once again seemed to be feeling better!! The cardiologist came in to visit us & informed me he had seen only one other little boy spike a fever again after 30+hours & require a second dose of IVIG he said hopefully Carsen would be good after this second dose or our next step would be using a medication that is used for treating rheumatoid arthritis.
    The Cardiologist said that this time we would not be leaving until a full 48 hours after his IVIG treatment. Which would mean Tuesday at 10am. This was a special day as well because we were asked by the Hospital to be interviewed by the Children's Miracle Network & be on the News!! Which I of course agreed I wanted others to hear about Kawasaki! If I can figure out how I will upload the clip!

    Monday June 3-Was a great day my baby was now playing, the hospital was great & even brought him in toys to entertain him & daddy left him the ipad so he could play on that as well. It was pretty hard trying to keep a 1yr old who was attached to a bunch of wires in a certain area they brought us blankets so we could play on the floor & eat there. We skyped with his brothers & I got teary eyed as they were talking to each other I missed them & they missed their baby brother! Monday night went pretty good he slept the best he had in over a week.

    Tuesday June 4- I believe I watched the clock like a hawk that morning praying that his fever did not come back pleading that we could get home!! His Rash had now faded, His eyes White once again, His Lips now Pink but a little cracked, Feet less swollen! & the best news he was walking again oh I was so happy.
     I was crying happy tears to see my baby walking again! Kawasaki can make their joints hurt really bad (reason Carsen refused to walk hurt too much). The Dr's came in and evaluated him & could not believe the difference in him they all said he looked so much better!! They all agreed that since we made it 48 hours after IVIG & over 48 hours without a fever we could finally go home. I think I did a happy dance at this point!! We were sent home to continue his Aspirin therapy every 6 hours till his fallow up with the Cardiologist in 8 days.
    So Hubby came to get us & the smile on his face when he saw his baby was priceless he was so happy to A.) see him & B.) see how much better he looked & was acting. It is really hard to see your baby so sick & in pain & there is nothing you can do to help them. It is heartbreaking!! Home we went & we were all reunited & it felt so good!!! It was amazing to be with all my boy's again!!

    We had a follow up with his PA Thursday June 5- & she could not believe how good he looked & acted. I think I thanked her a million times for her persistence to have him admitted to the Hospital & her knowledge of Kawasaki & saving my son with out her it may not have clicked to me & it could have been too late. Now we are just waiting for Carsen's fallow up apt with the Cardiologist. & once I have some answers from that I will update! In the mean time I urge you to read up on Kawasaki.

    Be aware of the symptoms :
    Red swollen lips
    Red blood shot Eyes
    Fever lasting 5 days 101 or higher
    Swollen lymph nodes
    Swollen Hands/Feet
    Strawberry Tongue

    If your Child has 4 or more of these symptoms call your DR immediately!!!
    Here are some sites I found helpful through all this:

                                                                      Not feeling so good
                                                                            but eating

                                                         Sleeping & mommy got a shower

                                                                     Playing on the Ipad
                                                                   Having a picnic lunch on
                                                                     the blanket on Monday
                                                                       Sleeping peacefully
                                                           Before our News debut on Sunday
    Feel free to ask questions if you have any! I don't mind I want to help others be aware and understand more about this disease. I am still researching & learning more myself!!


    1. You are a strong strong woman my dear! Praying for little Carsen and his heart. Health to your family. Love you all. ~Melissa

      1. Thank you so much Melissa! Truly appreciate the prayers!! Love you as well :)

    2. Wow, I can just imagine how scary all this was for you. Both my kids have heart issues and my son even had to have surgery last September for his, but this right here ... reading all this, I can only imagine the questions, the fear, the wondering you went through. I'm so glad things are turning around for the better. You took him to Vidant? The staff in pediatrics was wonderful to us when we visited. His cardiologist was amazing as well. We'll never forget our time spent up at Vidant.

      1. I knew your son had surgery but I didn't know it was for his heart! I can't imagine the fear you must have with 2 children with heart issues! You are one strong mom!
        It is so scary to have a child with heart issues because its the most important organ!

        I have so many questions & am scared most days because they really do not know much about long terms affects :(

        We did take him to Vidant & they are amazing!! Im so thankful for the excellent care & the cardiologist's are amazing as well they all seem to truly care there!

        Thanks so much for reading! We have another apt July 15th so I will be updating.