Kawisaki Disease - Part 3

PART THREE - THE DIAGNOSIS AND TREATMENT

Tyler & Jackson woke up the next morning with no changes. But the new nurses came in soon and said he'd be having his ultrasound later that morning. After a small breakfast and more tv and ipad playing, Tyler and Jackson went downstairs for the ultrasound on his tummy. He was not super comliant in getting this done obviously but they were able to get the pictures they needed and this is where the answers finally started coming.

After the ultrasound they went back up to the room and Jackson was getting really irritable. He didn't know what was going on and just wanted to go home. Luckily just then Tyler's parents arrived at his room and Jackson was so excited to see his grandma and grandpa. They brought some new toys and puzzles and movies that helped him through the day. At this point I was home with Abbie so I could spend some time with her, we couldn't bring her to the hospital with the potential contagious disease he might have had.

Grandma and Grandpa arrive

While the group was all in the room a team of doctors came in to discuss Jackson's case. There were some of the normal rotating general pediatricians in addition to Dr. Jordan, an infectious disease doctor who came in later. They told us that the results of the ultrasound were alarming in that his gallbladder was swollen to twice its normal size. This was causing him lots of pain obviously and explains his behavior and lack of appetite. This along with all of the other symptoms was leading them to believe once again that he did in fact have Kawasaki Disease.

Once again, KD is an autoimmune disease in which the medium-sized blood vessels throughout the body become inflamed. It affects many organ systems, mainly those including the blood vessels, skin, mucous membranes, and lymph nodes; however its rare but most serious effect is on the heart where it can cause fatal coronary artery aneurysms in untreated children.

But the good news is we caught it before it could have a long term affect on our little buddy. I am so grateful for my persistent pediatrician who told he to go to the hospital! When we learned the news I was listening via speaker phone in the room so it was kind of hard to hear, but I was glad that at least we had an answer. Even though I was hoping it would be something with potentially less severe side effects.

The plan of action at that point was to give him an echo-cardiogram of his heart, make sure it looked ok, and just something to get a benchmark for future checkups. And the treatment was an IV pumped in his body for 12 hours to get rid of the disease completely. He was to be given what was called an IVIG which stands for Intravenous immunoglobulin. It is a blood product that contains the pooled, polyvalent, IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. It is given to people with immune deficiencies, autoimmune diseases and in this case, acute infections.

We learned that diagnosing Kawasaki can be tricky and the affects can be scary if not treated, but the treatment of IVIG is very stanrdard and routine and is actually the only FDA approved treatment for Kawisaki.

So at this point we had to wait again, wait for the echo-cardiogram and wait for the IVIG to be ordered, made and delivered. Vicki stayed at the hospital while Tyler and his dad came home and I returned to be with him. Once again, how blessed were we to have grandparents here for this, Jackson loves them so much and was great to have them there. When I got to the room they were actually just giving him the echo. He was getting a little restless at that point so I luckily was able to distract him with some of the toys I brought.

He finally ate some popcorn, during the long afternoon of waiting

Then it was a long long wait until they finally got the IVIG delivered that night. During that long wait they had to give him another IV since he wasn't drinking or eating enough. Ah that was great fun again, Vicki got to be there with me to see how much he screamed and fought that needle going in his hand. But luckily it got in and he got on IV and they could use that same drip for the IVIG later that night.

Tyler, Terry and Abbie all came to the hospital later that evening before the IVIG was put in, since it took 6-6 so long it was going to be in basically overnight from about -. They decided to give him some benadryl through the IV to help him relax and fall asleep before the meds were administered. It was crazy for me to see him fall asleep so quickly! As soon as he was out they started giving him the medicine and the nurse stayed in the room the first hour to constantly check his vitals. Things were going well and it looked like it was going to work!

Hooked up to the IV and the Benadrly worked!

Hooked up to the IVIG, and a blood pressure cuff on his ankle.

 I left the hospital with Abbie after it had been in for an hour. He was still asleep and Abbie needed to go to bed. Tylers parents stayed a bit longer before coming home later that night and Tyler once again stayed the night with Jackson.

I left my sweet boy all cozy with his blanket, hoping and praying that he'd be all better in the morning!