My "Little Engine that Could" beat Kawasaki Disease

Thanks so much for all the prayers! After three days in the hospital, Tyler is home and recovering well. He still needs to regain strength and coordination in his legs, but all Flu B and Kawasaki Disease symptoms are gone.

We went to the pediatrician yesterday, and Tyler's vitals all look great. Dr. Alvis said that there are not that many cases of Kawasaki Disease in America, which explains why this is the first time most of our doctors have seen and treated this auto-immune condition. With treatment, Tyler has an 80 percent chance of full recovery. Only around 20-25 perfect of patients have longterm heart complications, although that number drops when treatment is given. And 97 percent of patients, who have received the IVIG treatment, never have a recurrence of the disease! We will always have to be cognizant of it, mentioning it to all doctors and coaches as part of his medical history. But that is just a precaution. Dr. Alvis is entirely optimistic that he will never have any problems, since we caught and treated it very early. If you would like to read more about the disease, here is a good summary. 

As for the IVIG treatment being administered incorrectly, it should not have adverse effects. I spoke with one of the hospital's medical directors today, and he said Tyler received the correct dose just over a much shorter time period. Apparently, the nurses followed the dosing guidelines for someone who was taking a secondary treatment. It was such a blessing that Tyler did not have any life-threatening side effects. There were also a few other "medical errors" that the hospital is investigating.

Tyler is a very strong and resilient little boy. While in the hospital, we watched his favorite movie "The Little Engine that Could" nearly 20 times. It was pretty much on repeat in the room, as it was the only thing that would calm him down. The nurses named him, "choo choo."

As for continued prayer, here are some specific ways you can lift up our family:

• Tyler has a second echocardiogram on May 10. Tyler must be sedated for the three-hour test, and it is scary for him. Please pray that God gives him peace and eases his fears. Please also pray that no heart abnormalities are found! 
• Tyler has an appointment with the cardiologist on May 16. Again, please pray that all tests come back that Tyler will have NO longterm heart complications. We are asking that God will spare our little boy from anymore pain!
• The hospital stay was very traumatic for little Tyler. He is petrified of doctors, nurses and medicine now. We fear that he has been having nightmares at home about the experience. Last night, he had to sleep in bed with us for the first time since he was six weeks old. Please pray that God takes away these fears and bad memories. 
• Selfishly, I'd like to ask for prayer for me. I'm exhausted. For the first couple days, I was traveling back and forth from the hospital and home, trying to nurse Grayson. It was wearing me out, so I later decided to pump and stay at the hospital. However, Tyler wasn't sleeping very well, so I stayed up almost nonstop for days. Since being home, Baby Grayson has been nursing every hour or so, so again ... no rest for the weary mommy. Please pray that God provides opportunities for sleep soon. 

Thank you all for your prayers and support of our family. I'm confident that God healed our little boy. We hope that we honor him by continued thanksgiving, glorifying him as best we can.

Oh, and I had to add this cute story. When we brought Tyler home from the hospital, he rushed in the house looking for his "babies." When he saw Grayson, he immediately looked down and gave him a fist bump.  He was like, "don't worry baby brother. I'm okay, see." I love this little guy more than words could ever express.

Update and Prayer Requests

Hi friends and family of the McKinneys!  I am a friend of Heather's (Courtney) and will be updating the blog per Heather with some information she texted to me.
It looks like there was a mistake made when administering Tyler his treatment for Kawasaki's disease yesterday.  He was given the correct dosage of meds, but instead of giving it over a 14 hour period, they gave it over a period of 4 hours.  This made Tyler very ill and caused him to throw up a lot.  We are all praising the Lord that the side effects weren't more severe, and are in prayer that no more new signs show up indicating otherwise.
Right now, Tyler is tired and ready to go home, but doing OK.  They are going to continue to do some blood work this afternoon, and if all is well and stable, they should be able to go home tonight or tomorrow.
Please take a minute and pray over Tyler and the rest of the family.  Below are some specific requests that are needed.

*  That Tyler would not be afraid of any tests that they have to do and that he will be comfortable.
*  That all bloodwork comes back normal.
*  That they will get to come home as soon as God's will allows.
*  That Heather and family will be filled with peace that surpasses all understanding.
*  That every doctor, nurse, and tech will have knowledge, clarity and the ability needed to treat him properly.
*  That there will be no more side effects from the disease or the treatment.
*  That the investigation taking place to discover how this error was made leads to no more errors like it happening again.
*  That baby Grayson will be well at home with family and friends helping out.
*  That Heather won't have any problems with pumping and supplying milk for Grayson.
*  That Tyler be 100% healed by our amazing Savior and Healer.

Thanks you for your prayers!!!  They truly do mean the world to the family!!!

Tyler

Hello All,
I am writing this on behalf of the Mckinneys. Heather and Chad have loved and appreciate all the thoughts, texts and prayers everyone has said for them and Tyler the last few days. Heather has been running back and forth between being at the hospital with Tyler and going home to feed Grayson and unfortunately has not had much time to respond to everyone. She asked me to post this so everyone can be updated about Tyler and know the story.  Hopefully I got most of this down right.

From the beginning....Sunday Tyler had a fever. On Monday they decided to take Tyler to Acute Kids because Tyler had a rash and had swollen nasal passages, ect. Oddly the doctor that cared for Tyler at Acute Care also happened to be the ER doctor at the Children's hospital when Tyler checked in there a few days later and cared for him there too. It was a blessing because he was able to see the rash when it was at its worst on Monday. Tyler went home from Acute Kids. A day or so later Tyler's normal doctor ended up calling Heather and told her that he thinks she should go ahead and take him to the Children's hospital. Good instinct! At the Children's hospital several ideas went around that Tyler had the flu, strep throat, Scarlet fever, and possibly Kawasaki Disease. Tyler, Heather and Chad stayed in the infectious disease wing.
Currently they have figured out that Tyler has atypical Kawasaki Disease. They said atypical because Tyler had all the symptoms but just not all at the same time/ to the same degree as seen in typical Kawasaki disease. The symptoms that Tyler had include: bloodshot eyes, lips cracked and swollen, rash, tongue swollen and looks like a strawberry, swollen hands and feet, throat and ear pain, headache, sore legs and losing coordination. Tyler also has flu B which is sort of like an upper respiratory infection but no Scarlet fever or strep throat.  Kawasaki disease is diagnosed through an algorithm. This afternoon Tyler had an Echo as a final piece of the puzzle. In the Echo they also said that Tyler has a big heart (not to the point of a physcial concern) and we all knew that! They put all his symptoms, irregular blood work and his Echo into the algorithm and decided it was definitely Kawasaki disease
Kawasaki disease is an autoimmune disease that is not contagious but basically means that body is attacking itself. It affects the heart, and although they can treat it now, Tyler will have to see a series of different cardiologist and will have to be monitored possibly for the rest of his life. If nothing else happens before age 5 then it's better, but even when he gets older, if he plays sports, coaches will have to know about possible heart problems and it is a concern if he gets a sudden rapid heart beat. Luckily since it was caught early there may be no long term problems since they are treating it within 10 days of getting it.
For now the course of treatment will be an IVIG which is given in an IV and will decrease the inflammation. The treatment takes 14-16 hours and a nurse had to be with him for the first hour because of side effects. Luckily, besides throwing up twice, Tyler did not have any bad reactions. They hope he will only need this one dose b/c with another dose he is way more likely to have an allergic reaction. He is also on preventative meds and an aspirin treatment. Aspirin treatments are dangerous for kids under 2 however the benefits outweigh the risks so prayers for that. It will thin his blood and help his heart.
We all know how Heather loves to have a plan, and Chad and her are happy they caught this early and have a plan of action for Tyler's health! For now Tyler will be in the hospital at least until Tues., but with the course of treatment, will hopefully be feeling better by Sunday evening. Tyler can have anything (food/drinks) but cant leave the bed or room.
Now that they know what's going on, for prayers Heather asked that yall pray for Tyler. He has had a rough couple of days and is very scared and Heather says very upset and crying/screaming everytime someone walks in the room. The poor kiddo has gone through being poked from having an IV, catheter, blood work and having lots of tests like a x-ray and Echo which are scary for a kid too young to understand. Pray that Chad and Heather keep their own health up. Heather and Chad are grateful for family friends and Heather's mom who are taking care of Grayson in between Heather coming home for feedings. Grayson is doing well!
On a cute note: the hospital gave Tyler a kid laptop to use and Tyler kissed the screen and said "happy, happy" It looks like Chad and Heather will be buying one because who could say no to that cuteness! Heather was glad Tyler had that moment! That's all for now and here is a current picture of Tyler.