January 8, 2007

My son John is 10-and-a-half months old.  He is a happy go-lucky baby, hardly ever crying or complaining.  Never sick before this week. 

We first noticed the fever and a few tiny red spots on his legs late last Tuesday night (Jan. 2, 2007).  He was also inconsolably crying.  We called the after-hour number from our pediatrician's office not thinking it was an emergency.  His fever wasn't too high at that time.  They said to give him both Tylenol and Motrin and call back in the morning for an appointment if he was still sick the next day.  He was.  Now more spots were showing up, over his legs, thighs, chest and arms.  His back was red and his groin was a bright fiery color.  He was also still screaming from the night before.  My son NEVER screamed like that before.  He was rarely cranky.  We went to the doctor.  He said it was a virus and that the rash was nothing to worry about.  "It's just a fever rash."  We were told.  I felt like it was more. 

He was sick all day and night again.  Now it is Thursday, January 3^rd.  He started throwing up and having diarrhea.  This was more then "just a virus".  His hands and feet were getting red and swollen, and so was his mouth.  He looked like someone held him over a red ant hill!  His eyes were bloodshot, deep red and swollen.  His pediatrician's office was perplexed and sent us over to the Urgent Care center at the local affiliate hospital.  We rushed over but they didn't even care, telling us again that it was just a virus.  They took ONE vial of blood and checked for several things, one of which was the C-reactive protein level.  The doctor on call said it was rather high, and took a strep test.  John was miserable, laying in my arms exhausted from lack of sleep and hoarse from screaming and crying.  He is absolutely COVERED in spots and him fever is up to 103 degrees.  He still has diarrhea, even though he has not eaten in over 24 hours, throwing up, not drinking or eating, red tongue that is swollen, and lymph nodes in his neck that are inflamed.  And guess what?  They sent us home!  It was still just viral.  We were told to come back on Saturday if he was still sick and to follow up with our doctor in the morning.  We had gotten nowhere and my son was still screaming.  They mentioned vague diseases like Measles, Chicken Pox, and Kawasaki Disease.  I remember my husband asking about that one, and they said that the tests and treatments were invasive, and they had no reason to think that he had that at this time.  (As a side note- he had ALL the symptoms of Kawasaki Disease at that point, his fever wasn't ongoing for more then five days though, which is what they wait for.)

By now it is Friday, January 5^th.  I call the doctor yet again for an appointment.  The receptionist "accidently" let it slip that the UC diagnosed him with conjunctivitis and told me she would leave a message for the doctor to call me as soon as she could.  It was not her fault, but the office was now brushing my son's illness of completely.  It is now 9 am.  By 10 am I am on the phone with my mother in a panic, hysterical.  I know something is wrong, my son is STILL screaming in the background and my husband and I didn't know what to do.  We are beyond concerned.  My mom comes over, driving straight from work.  It's a 40 mile drive.  She came over and immediately called her boss, who was a doctor.  She could see that something was very wrong as well.  He advised us that if John was his son, he would take him straight to LIJ, one of the best hospitals around.  It was over 60 miles from our house.  We headed out as soon as I could get John dressed and the diaper bag packed. 

We were taken into triage immediately.  They actually listened to me.  They dosed him with Tylenol as soon as he was looked at.  His fever was now over 103.5 degrees.  They admitted him, diagnosing him with Acute Kawasaki Disease in minutes.  It was now day four of the fever.  (KD needs to be treated as soon as possible to prevent severe complications.)

He was started on an IV.  It broke my heart to have him poked and prodded, and I nearly had another panic attack as he stopped screaming and fighting, going limp when they finally got the IV needle in the vein.  We were put into isolation (since KD affects the immune system) and as soon as we could we were given a room.  John was being seen by the heads of Cardiology and Infectious Disease.  Our concerns were finally being addressed; they listened to us and didn't write it off as overprotective parents' and first time parent syndrome. 

Once we were settled in our room they started the treatment for Kawasaki Disease, Intravenous Immunoglobulin or IVIG.  We had a shared room, four children (and their parent's to a room).  As I sat next to my son in his prison-like crib, I felt the stares and questioning looks.  We were all there for the same thing, if not the same illness.  I sighed with relief that my son was finally getting help.  He had stopped screaming.  The first time in five days.  It was now 2 am, January 6^th.  They started him on aspirin therapy as well, to help with any possible inflammation of the heart he might have.  We wouldn't know the extent of it for several days. 

LIJ was a godsend for me, as well as John.  They let me stay with him the whole time, sleeping on a reclining chair, and later, a pull-out chair which turned into a twin bed.  I could shower and get food.  It felt good to be able to shower, especially since I did not plan on leaving my son's side.  Instead of a breakfast tray in the morning, they serve the parent's a buffet.  All you want fruit, eggs, bread, milk, and best of all coffee.  I needed a lot of coffee when we were there.  They even had playrooms for the children, though John was too sick and tired to go there.

Finally after the full IVIG treatment, massive doses of aspirin, and two doses of IV antibiotics for a slight infection in his urine culture, we are home.  His first ECHO and EKG are normal, no inflammation other then what is expected with KD.  NO ANUREISMS. Our next appointment is with the Infectious Disease doctor (Dr. Ruben) on Wednesday.

January 10, 2007

John saw his Infection Disease doctor today.  Dr. Ruben is quite please so far with his progress.  He cut John's aspirin dosage to ½ a pill once a day, and no other restrictions.  They took blood from him for a baseline work up.  John did not like that though.

I am breathing a sigh of relieve, but we are still not out of the woods yet.  He needs continued monitoring, another check-up in 2-3 weeks, and we see the Cardiologist (Dr. Romano) in a week-and-a-half.

I keep jumping at every cough, every cry.  I keep seeing him screaming or worse resigned to the pain….does it get any better?  I am exhausted as well.  Since this first started till now I do not think I have slept more then a couple hours at a time, not at all when he was screaming in pain.  In the hospital they try to let you sleep, but with four children in one room, machines beeping, babies crying, and nurses checking vitals every hour or so…..sleep is not easy to come by.

January 11, 2007

I am reading all I can on KD.  Everything from the carpet cleaner connection, to low lying areas near bodies of water having more frequency of cases, to possible links with herpes, Epstein-barr, staphylococcal, streptococcal toxic shock syndrome and more. 

The best research I found was Dr. Anne Rowley at Children's Memorial Hospital.  She states that "the virus is likely to be taken up by white blood cells in the lung and carried through the bloodstream, infecting other tissues, including the coronary artery…it can lead to coronary aneurysms, the most important adverse outcome of Kawasaki Disease."

I am still researching this, but it makes sense since John had the sniffles at his nine-month check up.  He wasn't sick at all, just sniffling a bit.  Sigh.  There is just not enough out there for parents. 

 January 16, 2007

Had a scare yesterday, John had/has a low-grade fever (99 to 100 degrees), his rash (which had nearly faded) was getting redder again, and his was screaming most of Sunday night and Monday.  We took him to his new pediatrician for a scheduled check up.  (We had fired his old ones.  How could we continue to trust our son's health to them when they brushed us off and failed to diagnose him in the first place?)  They recommended taking him back to LIJ.  They did not want to take any chances, and saw that he was in pain and had a fever. 

Well one ER visit later and we are home.  The older doctor there was patronizing.  John started to feel better in the cool air, and even started playing a bit.  He didn't take us seriously.  Dr. Ruben and Dr. Romano were not on call that night, so he sent us home, saying maybe John caught a bug while he was in the hospital.  He stated that KD does not repeat itself once treated.  To give John Tylenol and Motrin for the fever.  His blood work was normal for someone recently treated for KD, platelets down to 900 (900,000) already.

He is cranky today, but nothing new.  Now I can't even rest....just too edgy.

January 23, 2007

John was diagnosed on the 5^th of this month…..he was in the hospital until the 8^th.  He had a round of IVIG, two doses of antibiotics and aspirin therapy.  Everything seemed okay.

Then, last Monday we were in the ER.  They sent him home saying maybe he just had a normal bug.  By Wednesday he was still irritable, but he had a cardiology appointment at LIJ.  Everything was great on the EKG and ECHO….no swelling, no aneurysms.  His was cranky, but I figured he did not like being held down.  Thank G-d we were there though, because suddenly he spiked a 102.7 degree fever.  Dr. Romano admitted him immediately.  She even arranged for us to have a private room.  In all that chaos and fear, when she did that a wave of relief came over me….she cared.  She would take care of my son.

We stayed in LIJ again from the 17^th to the 19^th, John was diagnosed with incomplete Kawasaki Disease this time, and again treated with IVIG, Plavix and aspirin.  Thankfully, Infectious Disease, Cardiology, and all the resident pediatrician's know John by now and we do not have to wait for treatments.  He is the "Kawasaki Baby". 

It killed me when they sent us up to a room, and had to get an IV in him.  They took him to a private area with all the supplies and a table.  His nurse tried five times, unsuccessfully.  FIVE TIMES.  He was screaming through most of it, and I had to help hold him down.  The nurse was even teary eyed and shaking a bit.  She called to the NIU nurses; since they had more experience with hard to get veins…..they got it in on the third try.  That was eight total sticks and pokes to get one IV into my son.  My eyes were just as red and swollen as John's by now.

This time he started to look better while still getting the IVIG.  He was himself.  Giggling and playing with the nurses.  There was a playroom on our floor, and the social worker there loved John, letting him take videos and toys back to him room.  There was a man with a cart of gifts for the parent's and children, and he found John a handmade knit hat and a finger puppet for him to keep, and when the hospital worker came around with snacks in the afternoon, he gave John an extra ice-cream when he saw how much he liked the first one.  I was slowly making friends at the hospital…they remembered me from our first stay.  In the gift shop where I got John toys and magazines read….in the restaurant where I bought endless cups of coffee at all hours and sandwiches.  Even the nurses started calling me by name.  It becomes a family there when you are alone at night.  I was invited to shower and rest at the Ronald McDonald house if I needed it, but the Children's hospital had all I needed right there.

There was some humor there though, John was known by his nurses as Houdini.  He managed, with glee, to kick off his lo-jack tag and his IV (Thankfully it was finished at the time).  We would here it click against his prison-crib bars then fall to the floor, or into the wall.  We decorated his crib too, with pictures of his two puppies at home, and tons of stuffed animals.

He was discharged on the 19^th, finally acting like my little boy.  All the EKG's and ECHO's were normal.  They sent us home with prescriptions for Plavix and aspirin, but they didn't tell me I needed a compound pharmacy to fill the Plavix script.  I called the doctor in a panic when we got home (60 mile drive and everything is closed but regular pharmacies at this point), they told me he was fine on 40.5 mg aspirin once a day since he had no heart complications.  I still felt like the worst mother.

Now everyone has a regular stomach bug, probably caught in the hospital and too much stress.  Compared to KD this is nothing though, and I will gladly deal with it.

We see Infectious Disease tomorrow and get the results of his latest blood tests on the 19^th.  The blood work from the ER showed a SED rate in the 54's and a CRP in the 72's!!!!

Sigh, I hope those numbers finally come down.

January 26, 2007

New blood test results, from the 19^th.  CRP rate is now in the 34's.  Much lower.

Read in a magazine the other day that the normal adult CRP rate is between 1.0 and 3.0.  Damn, these poor KD kids are off the charts.

John seems well.  Up for three hours last night throwing up and cranky…..but no rash, no fever, or any other KD symptoms.  We have a cardiology appointment on Monday. 

May 3, 2007

I haven't written in quite some time. 

John had his four-month ECHO yesterday.  I am happy to say he is off aspirin and does not need another ECHO until November.  He shows no signs of permanent damage, and everything looks great.

There have been many trips to LIJ for various doctor appointments.  It has been tiresome and I am very worn out.  I still jump at every cough, but I am getting better. 

We are still one of the lucky ones…..an online friend who's son had KD passed away on Easter Sunday.  He had just turned 4.  This scared me even more.

 June 6, 2007

I am beyond ecstatic.  I can't stop smiling.  John's blood work has come back NORMAL!  His platelets are at 382 (382,000).  At their worst they were at 1,250,000.  Yes, that is a million-a-quarter.  His CRP is <0.3 mg/ml.  At its worst is was 72!  Normal is <0.5 mg/ml.  And his SED rate (ESR) is 1.  Just 1!  At its worst it was 54!

No more ECHO's until November and no lasting damage.

December 14, 2007

John just had his last ECHO until next year!  Things are still looking great.  No complications, no heart problems.  We are beyond lucky.