Not exactly how we wanted to kick-off 2014...

My plan was to post something on January 1 about Bennett being 3.5 years old, however that didn’t happen because I was taking care of a sick kiddo all that week. Then our world felt like it was turned upside down Thursday (1/2) when he was put through a ringer of tests to figure out what was wrong and ultimately hospitalize on Friday.  So here’s his 3.5 year old blog post, which is not exactly what I had in mind….

Bennett started getting sick on Saturday, 12/28, while he was staying with my parent (we feel like awesome parents leaving our sick boy for the night but to our defense he wasn’t sick when we left him). He was complaining of his head hurting, got a fever and just wasn’t acting like himself. We hurried home on Sunday from an out of town wedding to be with him.  When we picked him up, he was covered in a rash, still had a fever and was pretty uncomfortable.

Fast forward a couple of days and our boy was still sick, fighting a persistent fever and just not being himself, with what we continued to assume was just a virus. I even thought on Tuesday (NYE) after walking up and not getting a fever until the afternoon that he might be getting better. However, on Wednesday we started thinking something just wasn’t right after his fever hit 103 and it was just one too many days of him feeling miserable. Since the clinic was closed for New Years I called the on-call doctor and my call was handled by the nurse triage line since it didn’t appear there was anything to worry about, and they just confirmed that it was likely a virus and to keep him hydrated.

Thursday morning things weren’t showing any signs of improving as we were now on day 6 of a fever, in fact he seemed to be getting worse, and he was starting to look really sick so I made an appointment with his pediatrician that morning to take him in. After a thorough exam, looking the rash that kept coming and going, his swollen hands & feet, extremely chapped lips, blood shot eyes, extremely pale appearance and measuring his lymph nodes, the doctor suggested that Bennett have blood work, a chest x-ray, urine analysis, a strep test and an influenza test to rule out other illnesses and to look for additional symptoms of Kawasaki Disease (a rare disease that effects kids and causes inflammation of blood vessels) in the blood test.  Because the blood work presented signs of Kawasaki Disease (an elevated sedimentation rate and C-reactive protein, anemia, etc.)  he was scheduled to have an echocardiogram Friday morning. We made another visit to the pediatrician’s office Thursday night so the doctor could exam him one more time and we could discuss all the test results, which at this point it was starting to get alarming how sick Bennett looked.

So Friday morning we went in for another round of blood work, the echo and another visit with the pediatrician.  His physical symptoms and the results of the blood work were showing that it could be Kawasaki disease however he didn’t have fever that morning so the doc sent us home and told us to call if his fever hit 101, which at that point he would be admitted to the hospital for treatment of Kawasaki Disease.  We came home, had lunch, Bennett went down for a nap and sure enough he woke up with a 101+ fever.  After a call to the doctor it was decided he would be admitted that night to the hospital. Kawasaki Disease needs to be treated between 7-10 of onset to prevent any damage to the coronary artery.

By the time we were admitted on Friday our sweet boy was SO sick. It was so hard to see him like this and it was alarming just how sick he looked (extremely pale, blood shot eyes, swollen hands/feet, peeling lips, etc.)  He was administered IVIG (Intravenous immunoglobulin) treatment Friday night and we were hopeful that the results would be seen soon after the treatment was finished Saturday morning (which was the expectation if it was Kawasaki Disease), and the #1 sign of it working would be the fever subsiding.  Not the case… he showed some signs of improvement that morning but by the time the afternoon rolled around he was SO sick again and this time screaming in pain of his head hurting. And since he had a fever and it wasn’t confirmed to be Kawasaki Disease our poor boy was put in isolation since he could be contagious.  We felt discouraged, scared and very anxious to talk with our doctor.  The fear of not knowing what was wrong with our boy if it wasn’t Kawasaki Disease since the treatment appeared to not be effective was terrifying. It was decided to just watch him until Sunday and see if the fever goes away.

one of the perks of the hospital, room service & endless popsicles (all in bed)

Sunday morning he appeared to be feeling better, however I wasn’t too hopeful since mornings always started better.  We started the day with heavy hearts for our sick son, fear for his health and frustration about his less than ideal reaction to the IVIG treatment, along with the stress of figuring out where to go from here.  After a meeting with the on-call pediatrician in the morning he consulted with the infectious disease doctor at Children's that our pediatrician had been consulting with. They explored the idea of other potential illnesses and continued treatment and together they came to the reco that if he spikes another fever Sunday, we’d do another round of IVIG and if we don’t see improvement within 24 hours we’d head to Children’s. We spent the day watching the clock & closely watching Bennett.  He was still sick but the afternoon passed and we were still fever free for the first time in 9 days! We were cautiously optimistic heading into the night.

breaking free from the room to see the butterfly wall

We had been expecting to be taking our son to Children’s Monday morning but instead we were talking to our doctor about being discharged. The IVIG treatment appeared to have worked. It was the most incredible feeling to have our hope restored in him getting better. If he remained fever-free until 3 p.m. Monday, then he would be discharged.

wandering the halls before getting discharged Monday

he loved playing with the bed

We were so happy to come home and give Cal & Emmie some much needed attention.  Being home hasn’t been without it’s challenges, as Bennett has to remain inactive until Thursday (not easy for a energetic 3-year old boy) which is when he has his follow-up echo and appointment with the cardiologist from Children’s.  He’s also been really irritable (a symptom of KD) so we’re all learning how to interact with him but he’s noticeably feeling better each day and that’s all that matters. The recovery period for Kawasaki Disease is 6-8 weeks but we’re hopeful that our little over achiever will be back to his old self in no time at all.

The love & support showered upon us from our friends & family was overwhelming. Thank you to all for the continued prayers, kind notes, calls, well wishes, meals, treats for the kids, etc. We feel blessed to have such wonderful people in our lives.