No tags yet.
We arrived back to the same children's hospital we were at just 4 days before but this time there seemed to be a little more concern when they were asking us questions, examining Jamie, and telling us their plan. The Infectious Disease on-call doctor came in to see us and let us know they were direct admitting Jamie and they would do whatever they could to get a diagnosis as to what was going on with our son. They were shocked to learn he did 5 days of omnicef and 4 days of clindamycin as well as received the clindamycin through the IV when he was admitted the week before. 5 different doctors came through to examine Jamie- each doing the same thing over and over again. Examining him and asking the same questions and scratching their heads. Around 2am they finally get us to a room on the 7th floor in the west wing, where I later learn this is where they keep most of the Infectious Disease cases, but mainly Kawasaki kids that come through.
They decided for that first night they just wanted to keep an eye on him because as they had said last week he wasn’t exhibiting all of the symptoms of Kawasaki Disease so they wanted to see what happened. Throughout the night his fevers would rise and break, he would whine and cry in misery, and they pushed IV fluids through his body so he would be a little more hydrated since it took the nurses 4 tries to finally get the IV started in the first place.
7 am the next morning, Tuesday October 20th, 8 doctors came strolling into Jamie's hospital room, Dr. C introduced himself as the head of infectious disease and he had been the one to talk to Dr. G the night before. He told us that they wanted to repeat the echocardiogram to see if there had been any changes to his heart, Kawasaki is classified as causing the blood vessels to dilate throughout the body, so if there was any changes there that would let them know for sure if it was something they had termed as "Incomplete Kawasaki's" basically they would call it Kawasaki’s even though he hadn’t shown the other symptoms of it yet.
Around noon a lady strolled in with the same machine we had in our room the past Friday where they would spend about 30minutes watching and taking pictures of his heart. I anticipated the results to be fine just as before and was honestly starting to be a crazy mom and think my son had some crazy cancer that they weren’t catching. His blood work from the night before had shown his White blood cell count was still up matching what it had been over a week ago when I first took him to the local ER.
That afternoon Dr. C and his team came into the room...Dr. C explained that Jamie's echo did show some concerning changes and at this point they were going to call it "Incomplete Kawasaki Disease" and start treatment for the Kawasaki’s. Jesse and I both began asking questions on what the echo showed specifically but Dr. C told us cardiology would come in to explain everything to us in more detail and his main concern for now was to begin the treatment.
Treatment for Kawasaki's disease is Immunoglobins or IVIG as the medicine is administered through the IV (the immunogloblins come from the blood of donors, It takes 1000 donors to make 1 IVIG treatment) The IVIG itself takes 12 hours to rum through the IV making it as 1 treatment. So his first treatment was scheduled to start at 6pm and would be done at 6am Wednesday morning. Once the treatment ends, they count that as the 0 hour and watch the child for 36 hours after the 0 hour to make sure no fever spikes which means the treatment worked and the heart is no longer being damaged.
Wednesday, October 21st my little Jamie was starting to come back to me! He perked up, was talking a little more, the redness in his eyes was almost gone and wanted to get up! The first time in 11 days he wanted to get up! The children’s hospital had brought him many things to do in bed, Uno, go-fish, Legos, other little games and he decided he wanted to go to the play room and build his Lego set. Jesse and I of course were so happy to see he wanted to get up! We did still have to wheelchair him to the playroom because he was still weak even though he felt better. Most of the day was the same, he talked, he laughed a couple times, and he wanted to drink on his own! We tried to get him to eat but that still didn’t feel appetizing to him yet but he did settle for a few bites of apple sauce after our begging! We were so happy to see him getting better. I cried in joy!
Around 3pm though, I noticed he started looking pale...around 4 he said his eyes were hurting and he wasn’t feeling really well so he wanted to lay back down. As Jesse and I were him laying down I could feel the heat radiating from his body and called the nurse...She checked his temperature and it registered at 102.9. I felt defeated! I was for sure the treatment would work...of course I had googled everything under the sun that possibly matched his symptoms and the only thing that fit and made sense was the Kawasaki Disease! The nurse told me she was going to call the Infectious Disease team and they would be in to see us the next day to discuss what we should do next.
That evening resting beside him I noticed something odd, his lips were peeling...later when I took him to the restroom I noticed his genitals were peeling too...I told my husband that his lips and penis were peeling! They had told us the lips would peel but said with it he would have cherry red lips and a strawberry tongue, neither of which accompanied the peeling...and nothing had been said over the genitals, but every doctor that had examined him did check there.
Throughout the night I couldn’t rest- I stayed alert to his fevers, the nurse was great that night and stayed on top of it as well...but that night I had that feeling again...like something was really wrong with my Jamie...he gets a little better then goes worse...then gets a little better from the worsening...I was going to fight with these doctors no matter what and make sure they figured out what was wrong. I would not take NO as an answer.