One long month and a rare disease....

WARNING: this post is LONG

Seriously, it's been another month without posting. It has been the worst winter ever for sickness in my little family.  Non stop ear infections and throat infections, and tube surgeries....accompanied by colds, and strep, and bronchitis... it just keeps going.  After this last event, it had better be over.  

This momma is exhausted.

This last event, that I never EVER want to repeat again, began a month ago.  I got the flu and then everyone else followed in some way or another.  Damon though, is a different story.  Yes, he had fluish symptoms for a day, but he was crying about his ear hurting.  This boy never cries about things like that.  I usually don't even know he has an ear infection until I take him in for something else! So we went to our awesome pediatrician.  And did a full 10 day round of Amox. At the end of that 10 days, Damons ear was better, but I could tell his throat and his croupy cough had made no change, so we went in again.  We went to a stronger antibiotic.  3 days after that he woke up with pink eye.  So in again we went.  and again we upped the antibiotic and were given eye drops.  This antibiotic was Augmentin.  Damon has had this one numerous times and it had worked well.  He had one dose that evening.  The next morning we woke to this:

A rash from head to toe. And itchy and bumpy.  I immediately called the pediatrician.  Over the phone I was told he probably developed an allergy to the penicillin.  Seriously??? ok.... So we stopped the Rx, and started on Benedryl to help the rash.  4 doses of Benedryl later it wasn't working and Damon was looking worse.  And a fever had started.   We tried prednisolone (spelling?) and again it didn't work and again D was getting worse.  His fever at this point had sky rocketed to 105, and I could not break it with tylenol and motrin.

 

Saturday March 3rd, we woke to this,

 

His fever still raging, the rash was turning deep red and the skin on his face and lips were peeling.  This may be TMI but the worst place of all was his poor little groins.  It was flaming red and swollen.  He hurt so bad and was so miserable.  I got scared.  And that takes a lot for me.  I called the doctor again and we headed to Primary Childrens ER.

We had an awesome doctor who spent a lot of time with us and conferring with other specialists.  Not too long after being there he had told me he was sure this was what is called Kawasaki's disease, but we needed to do blood work. So poor D was pinned down by me while two nurses took blood samples. We waited for a while and continued to try and calm down his fever.  They came back and told me his blood didn't cottle(?), so again he was pinned down freaking out while we drew blood again.  We were sent home since we had to wait on tests.  And we needed to see if he had 5 days straight of this high fever.  It was day 3.

So Monday came.  Damon was the exact same and his fever was still 104.  My awesome older sister April came to my rescue and took all 3 of the other kids for me.  Knowing they were all sick too.  I cried.  I had no clue what I was going to do with them and I knew a hospital stay was coming. She took them without any question and made it so I didn't have to worry.

Damon looked like this,

 

So I took D back to the hospital.  And it was the same routine again.  With a different doctor, who thought the first doctor was nuts for thinking it was Kawasaki's. We spent the day there. 4 blood draws, lots of waiting.  And lots of test results that were inconclusive.  They finally came in the evening and said he was positive for the H1N1 virus.  yes, swine flu.  You could see it in this doctors face, that was the answer. To ALL of Damons problems.  He was ready to send us home.  But I knew in my heart that was not right.  So I questioned him and grilled him.  Was this rash common with flu viruses? "NO". Was it ever seen with the H1N1? "NO".  Then how can you say that his rash and everything else is just because of it?   So he went to consult with some specialists.   He was gone for a while.  James had gotten off of work and was there at this point and I had told him about my frustrations with the doctor.  He wasn't so happy and he let that doctor know it.  It was then that the doctors tune changed.  He went to talk to different specialists. And came back to tell us that, because he was uncertain of the cause of the rash, that he was going to have Damon admitted.  THANK YOU LORD.

So this was Monday.  For the next 4 days, Damon was given more IV's, pinned down for more blood draws.  Test after test, after test... A horrible IV team that made a geyser of blood shoot out of one arm and then kept digging and digging in the other arm until I screamed at her and the other one took over and did it in 10 seconds.  Let's just say I made sure everyone knew that if I saw her again it would NOT be pleasant.  You don't hurt my baby like that! He layed there screaming and thrashing and yelling"I'm sorry mom!" Like he was being punished for something.  I died inside and I broke down and cried.  That whole night he didn't sleep well and kept crying out in his sleep he was sorry, and no more pokes.  I felt like the worst mother in the world. What I wouldn't give to take his place and take the pain away.... I felt completely helpless.

His blood was drawn at midnight every night because his fevers didn't stop.  He spent lots of time painting, and reading about sharks, and watching movies.  There isn't a lot you can do when confined to a room.

While he slept, I played with his playdough in an attempt to keep my sanity.

I tried to keep him as happy as I could and keep his mind off the pokes.

and bless his little soul he tried to have fun with me.

Our doctor, who I forgot to mention, once we moved to the stay unit, was awesome.  He is the Head Pediatric doctor at Primarys.  And he was not convinced it was all H1N1.  And he was completely baffled by Damons' symptoms. So he called in the Head Infectious Disease specialist at the hospital to tackle this with him.  And along with that doctor came a team of 4 more doctors.  We literally had 6 doctors at once talking and conferring and looking and discussing.

Wednesday day, we were sent for an echocardiogram to see if the blood vessels around his heart had changed.  It came back normal.

Wednesday night, 6 days since we first came to the hospital, they came in and had another discussion.  After seeing all these test results, and Damon not improving, and the rash making changes, they had decided to run one more test.  A blood strep test.  If it was positive, Damon would be diagnosed with H1N1, strep and scarlet fever.  If it was negative, the consensus was Kawasakis disease.

Thursday morning. 7 days later.  Our doctor came in.  The test was negative.  :( My heart sank. It was Kawasaki's.  Let me give you a description of this disease.

Kawasaki disease often begins with a high and persistent fever greater than 102 °F, often as high as 104 °F. A persistent fever lasting at least 5 days is considered a classic sign. The fever may last for up to 2 weeks and does not usually go away with normal doses of acetaminophen (Tylenol) or ibuprofen.

Other symptoms often include:

• Extremely bloodshot or red eyes (without pus or drainage)
• Bright red, chapped, or cracked lips
• Red mucous membranes in the mouth
• Strawberry tongue, white coating on the tongue, or prominent red bumps on the back of the tongue
• Red palms of the hands and the soles of the feet
• Swollen hands and feet
• Skin rashes on the middle of the body, NOT blister-like
• Peeling skin in the genital area, hands, and feet (especially around the nails, palms, and soles)
• Swollen lymph nodes (frequently only one lymph node is swollen), particularly in the neck area
• Joint pain and swelling, frequently on both sides of the body

Additional symptoms may include:

• Irritability
• Diarrhea, vomiting, and abdominal pain
• Cough and runny nose
  
  So Damon was set up to recieve what is called an IVIG treatment.  (IVIG) is a blood product administered intravenously. It contains the pooled, polyvalent, IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors.
  
  The reason for doing this is to try and prevent the lasting effects of Kawasaki's. It can cause future and permanent heart damage. And has even caused strokes in little kids.

So that afternoon the treatment began.  And finally finished around 1am.  Damon woke up on Saturday and he already looked better.  I am not even kidding.  The swelling and red in his face had gone down so much.  He was happier and a little more lively.  He had to be monitored for the next 36 hours.  If he got a fever, it meant he had to have another treatment.

 

 Saturday morning my little sister Kesia came to stay with him since I had to shoot a wedding. The poor guy was experiencing the side effects. Horrible headaches, nausciousness, he threw up, I felt so bad not being there.  When I returned later he still was in so much pain from the headaches.  We didn't want to give him medicine because it could hide the fever we needed to know if he had.  But after a while we gave it to him.  He was so miserable!  Time went on.... and the headaches were mostly under control.  His fever hadn't returned, and Damon kept looking and acting better and better.

Damon seemed a little more like himself.  Especially once he was free from all the IV's!

Saturday night, since there was no return of the fever, and he was drinking on his own again.  Damon got to go home. 

A full week of hospital hell, a week of him not eating, he lost 11lbs and has the scrawniest little arms now.  But he was well, and we were finally all home together as a family.  It was heaven.  Even with everyone sick and me coming down with full blown strep and my epstein barh flared back up.  It was HEAVEN.

I need to say special thank you's to my family who helped me so much during this.  April and her family- I know my kids were in such good hands.  And I am so grateful for your help night after night with all 3 of them sick.  I don't think words can express my gratitude.

Justin, thank you for stopping by to see Damon.  I know you have a lot on your plate, and that meant a lot.

Christa, thank you for last minute taking the kids Friday night and keeping them Saturday.  For dealing with poor little Braddock whose ear drum ruptured.   You are awesome.

Kesia, thank you for rearranging your plans to come stay with him so I could go shoot my wedding.  And especially for getting him re-addicted to the Blue Planet movies :)

Grandpa Kim, thank you for your visit too.  It truly made his day.

Thank you to everyone who sent me words of encouragement, who sent positive thoughts, and who prayed on his behalf.

Thank you to my awesome friends, Tonii and Marcii and Tami who have brought us meals since our return.  It was a lifesaver! 

Damon still is dealing with the side effects of Kawasakis. His skin keeps peeling, but his rash has gone, and he has had no fevers. His appetite is slowly returning.  And we are trying to get him some of that weight back :)

This event has brought about some changes for our home.  Some different things I want to try to help our sick little family.  We bought a juicer so I can sneak the kids more clean foods.  And I have invested in essential oils.  What do I have to lose?

All in all we are all on the mend.  And life is once again looking bright.