Thursday, November 3, 2011

Joey's story

It's been a long, stressful, and weary couple of weeks but I feel up to talking about where I've been and what's been going on now.  Joey was sick and I couldn't blog about it.  I was sick with worry and I didn't want to talk about it, I just wanted it to go away.  I prayed for it to go away....and so far we are doing good.

A couple of weeks ago, Peanut developed a fever.  I brought him to the doctor and she concluded it was either teething or a virus.  That night his fever spiked to 102 and I got worried.  I called to doctor's nurse and she said it was o.k. to bring him in the morning for another checkup.  I brought him in the following morning and the doctor did a CBC on him, which came back normal, and she concluded again it must be a virus and we just had to wait it out.  She said to bring him back on Friday if the fever persisted(this was Tues.).  That night his fever spiked to 103 and I panicked.  I called again and they reassured me it was o.k., just to give him Tylenol and keep him hydrated.  Wednesday I just babied him all day, nursing him and trying my best to comfort him.  We hadn't slept in now two days because he was so uncomfortable at night he only sleep in 15 minute increments.  We suffered through the day on Wed and then that night he spiked to 104!  I panicked. I called the nurse again and she gave me instructions on how to get the fever down and told me if we couldn't get it down to bring him to the E.R...well we got the fever back down and took turns giving him baths hourly.  We decided Thursday morning to get a second opinion at a different doctor.  When we brought him into the new doctor, she suspected something called Kawasaki disease and wanted to admit him to the hospital.  I was so scared and started crying!  Thankfully, I have a good friend that could pick up the big boys and she was so accommodating and supportive-I'm so grateful for her...
Anyway, we were admitted into Jeff Gordon Children's Hospital and Peanut went through the gamut of tests.  With Kawasaki disease, there are no conclusive tests, so they give tests to rule out other diseases.  He was hooked up to an I.V. and started on antibiotics because they saw a *spot* on his XRAY and wanted to treat with antibiotics.  He did look pretty bad, he had cracked, dry and bleeding lips, a rash, red eyes, and of course..the fever.  That night we held him the entire time and tried to comfort him the best we could.  He wasn't nursing much because his lips were bleeding.  The doctor visited and said she believed it wasn't Kawasaki disease but we'd review in the morning.  Well, the morning came and another doctor came in and by his numbers, concluded that she was going to say it was possibly Kawasaki disease.  Well, we were very conflicted, we had two different doctors giving two different diagnosis.  I asked them to run the blood work again and if his levels had increased, then we would go ahead with the treatment for Kawasaki.  We had to wait twelve hours for the next set of tests and while we waited, Joey looked sooo much better.  His fever was going down, his eyes weren't as red, his rash was going away and he was nursing again.  The doctor was stumped...she just didn't want to say it was Kawasaki..but she didn't want to say it wasn't. So, we waited until morning and another doctor reviewed the case and came to talk with us.  She felt it was best to transport us to Levine Children's Hospital to meet with their Infectious Specialist.  Joey had an echo cardiogram first to check his little heart and then we were off to the new is the picture of him getting transported:

Needless to say, I was a baby was getting better but their was still no diagnosis of what was wrong.  We got to Levine's and met with another doctor who really helped us weigh the pros and cons of treating this versus not treating this(and it actually being it) and we pondered and prayed some more.  The Infectious Disease Specialist agreed.  If we don't treat it and it is Kawasaki's he had a high risk of aneurysms of the we went ahead with the treatment. We just couldn't take that chance.  His treatment consisted of a platelet treatment called IVIG for 12 hours. 
  A lovely priest, Father Alex came before the IVIG and did a service for Joey and blessed him.  He brought an icon of St. Panteleimon and blessed him with oil from St.Panteleimon burial site.  The nurse came in after the service was over and we were talking and took Joey's temperature..his temperature had dropped DRAMATICALLY...he had no fever at all..his temperature was actually 98.3!.  Darryl said that when the priest blessed Joey with the oil(Darryl was holding Joey) Peanut broke out in a sweat seems the Lord broke the fever right then!   We all were stunned and awed at the miracle that had just taken place.   Joey was so much better after that.  He really had been alot better before we got to Levine's but now he was letting us put him down, he was giggling again and seemed to feel much better.  We were a bit hesitant after that feeling that the Lord had healed Joey, but we still went ahead with the treatment just to be safe.  It truely was a miracle that Joey's fever broke so quickly!
So, that next morning at 4:45 the treatment began...he had to be contantly monitored for reactions and Praise God he had none.

 He did great through the treatment and we were able to check out of the hospital 24 hours after Joey's fever broke but he had to be on high dose aspirin for awhile.  He is now on lose dose aspirin and he just had a follow up with a pediatric cardiologist.  I was so nervous about this visit and prayed and prayed he hadn't developed any aneurysms..and praise God...his heart was perfectly healthy!  He is still on low dose aspirin and we meet with the cardiologist again in 4 weeks...if he still looks good, he will be released from his care and be able to stop the aspirin...
Please pray for my little Peanut....Please pray he continues to heal and his heart and valves stay strong and nothing pops up.  Pray he gets a perfect report in 4 weeks and that we can put this horrible memory behind us. 
I do vow to try and help support the Kawasaki Disease Foundation.  We need to find out what causes this...whether he had it or not, we may never know..but this was such an awful experience.  It gave me a real and tangible compassion for those children and parents dealing with health issues.  I had been fortunate before this experience to not know what that was I do....
I'm so thankful to God for healing my son...I'm so thankful to my momma and Tracey that left in the middle of the night to come be with us, I'm so thankful to all the nurses who took such great care of Joey, I'm so thankful to Father Alex and his wife for coming to the hospital to pray for Joey,   I'm so thankful for my good friends, the Higgins, who jumped when I called to help us with the boys, I'm so thankful for the many who cooked us meals after we got home from the hospital so that I could just tend to Joey and the boys and not have to worry about dinner....through this I'm so thankful for so much....mostly that my son is better.
God is good....

No comments:

Post a Comment