Stalked by the Stork...a diary of raising twelve kids

Having twelve children is an amazing blessing and one heck of a crazy ride. Join us through all the joys, smiles, tribulations and trials as we navigate this fabulous journey!

Sunday, August 3, 2008

Another winning weekend in the Fontenot house

Sorry we haven't updated in a while...get this...we spent the weekend in the hospital (again) this time with Jackson!!! He had Kowasaki's Disease...yes another autoimmune issue for one of our children. Thankfully, this is a temporary one and will pass soon.
Here's the scoop. I first noticed that he had a fever on Monday night while I was tucking he and Brice into bed. I had leaned over to kiss Brice and then when I leaned over and kissed Jackson, he was very warm. Albert and I figured that he had whatever virus Brandon had (we'd been to clinic with Brandon that same day as he was sick). But by Tuesday night, Jackson's fever was even higher and he couldn't move his neck. Afraid that he could have meningitis, I took him into the ER. We were there only briefly, as his rapid strep swab was positive and so he was prescribed antiobiotics and we went home. It was 2 a.m. when we pulled in our driveway and too late to go to the pharmacy (no 24 hour one in our immediate area). We went to bed immediately but he woke up a couple hours later screaming of a sore tummy. We calmed him down and went back to bed.
The next morning we got his antibiotic started. 48 hours later (and after 6 doses of medicine) he was was still burning up with fever, still just lying around, sleeping most of the day and not feeling well. When Albert and I woke up Friday,Jackson was in the bathroom crying. He was stuck on the toilet for a couple of hours between vomitting and diaherea (I know,I can never spell it right!) We knew he had to be dehydrated and wanted a doctor to look at him. We debated about what to do and where to take him and I ended up calling his pediatrician who said to bring him right in. However, we couldn't leave the house, because I couldn't get Jackson off the potty! Every time he'd start to leave the bathroom, he'd have to turn around and run back in.
When we finally got on the road he was in bad shape. He kept moaning and crying softly all the way to the office. They put us in a little holding room so we didnt infect/scare the other patients.
The dr.'s schedule was jammed full that morning so the Physician's Assistant took a look at him. She said he definately needed fluids but didnt' seem to feel it was any more serious than that. Albert and I knew something was badly wrong though. He didn't look like himself.
I went to the Er that was closest (Cardinal Glennon's....those of you who know us know that we detest St. Louis Childrens and wouldn't let them treat our dogs, let alone our children and St. John's which we love was just too far away). When we got there, Jackson began havng diaherrea again so we had to toss his clothes and get hospital issued PJ's (very fun). While I was helping him clean up and change I noticed that he had developed a rash all over his back and that his hands and feet had turned beet red. Also, it appered as though all the capaliries in his eyes were burst and the whites of his eyes were now very red.
Unforutanly, it was difficult explaining to the triage nurse that I felt something was really wrong here because of the fact that we already had a positive strep test. So they kind of felt like "Okay, he feels bad. We know why he feels bad. He has strep." I kept saying "No, there is something more than just strep going on. We've dealt with strep many, many times. This is not normal strep."
Cardinal Glennon's is a teaching hospital so the down side is that you get to repeat your story to several doctors as many of them are residents or still training. And of course the first doctor to examine him was a student ( actually I think she had just graduated medical school and this was her FIRST day in the ER). I told the story and she too seemed to think that it was just strep. She wasn't even sure he would need fluids. I kept thinking, oh please get us someone who will help becuase this isn't okay. She said she was going to get her boss and a few moments later, thankfully, a more experienced doctor showed up.
He looked at Jackson, listened to the story, observed his red feet, hands, eyes, rash, and now he had red lips as well and immediately orderd a bolus of fluids to help the dehydration, Zofran to help the puking and ordered a lot of blood work. As usual, I asked for a printout of all bloodwork as soon as it came back.
When it came back however, the nurse became very evasive about handing it over and instead told us she was sending doctor #1 in to talk to us (in our family expereince, this usually doesnt turn out to be a good thing). Doctor #1 came in and told us that his white cell's were really high and his liver function was high, and his chemical panal showed lots of high enzymes and that they suspected Kowasaki's disease. Doctor #2 then joined her to help explain that it was an autoimmune issue in which the body becomes inflamed and it usually affects all major organs. Thus his stomach hurt becasue his gall balddar was inflammed. His body was taking in enough oxygen but not releasing enough Carbon Dioxide so he was very acidic (which the fluids would help). The biggest issue with Kowasaki's Disease is that the heart is one of the organs that gets inflammed espicially if it has continued more than 7-10 days before diagnosis. Fortunatley, we had not gotten that far. So, they did an EKG and an echo and fortunately his heart looked okay. The cardiologist (doc #3) then came in and told us that the inflamation would go down eventually even without treatment, but that not treating it carried a risk of scar tissue forming on the organs. If scar tissue formed then an otherwise transient thing would have long term reprecussions espicially for the heart. So they recommended IVIG (which Drew gets for his chronic ITP) and large doses of Asprin.
We ran the IVIG overnight and Jackson's body didn't really seem to like it. It was a pretty rough night and his heart rate remained fairly high and his blood pressure sometimes low but mostly okay. Over Saturday he got even better and so we were able to go home this morning (Sunday). All he needs at home is Asprin each day. He was feeling a little rough this morning and last night as an after effect of the IVIG (this happens to Drew each time too). But overall, he's much better and its' so nice to be home.
The funny thing is this. I explained to all the doctors that we had two other kids that have autoimmune diseases (although much more serious that this) and AGAIN we got the speech that none of them are connected. Okay, I'm really starting not to beleive that. Saturday morning I called our hematologist (who belives there may be merit to my theory) and he is going to look for a study to place us in so that we can try to get to the bottom of it).
Meanwhile, we have to take Jackson back to the Cardiologist in a week and a half for a follow up.
Seriously, this is crazy. There is obvious to me that there is a faulty auto immune gene somewhere between me, Albert or the combination of us both that some of our kids are inherriting. I hope we can discover what it is. I'll keep you posted.


Shannon said...

Ang - I just can't believe all that you deal with on a daily basis and are still so strong! I am so glad that everyone is back to feeling better and praying that you will have some sickness free time in your future! Talk to you soon.

Terri said...

I would have to agree that there HAS to be some sort of connection somewhere!

Glad to hear that he is doing better!

The Collins Family said...

UN.BE.LIEV.ABLE seriously ... I'm so sorry you have had to spend the weekend this way...and poor Jackson...I'll be praying that the cardiologist gives him a clean bill of health.

Lynn said...

Well I vote for not having to update anymore because there's nothing going wrong there! Think you could handle that? Wow! Hope you can figure out what's going on there!
Actually found a passage I haven't shared yet! Lifting up prayers right now!
Psalms 17:7-8 Shew thy marvellous lovingkindness, O thou that savest by thy right hand them which put their trust in thee from those that rise up against them. Keep me as the apple of the eye, hide me under the shadow of thy wings.
Prayer Bears

Jennifer said...

Oh my goodness how scary!! Glad to hear he's on the mend, poor little guy!

Cassandra-ann said...

I am so glad to hear he is okay,how awful for the poor little fellow...and you guys, how scary, i too hope you are all sick free soon

Jenn H said...

WOW, I mean, maybe there is absolutely no connection at all but honestly, what are the odds of that! I really hope they can figure it out! Glad Jackson is doing better!

The Romero-Schroeder said...

OMG Angela, thank GOD you caugth this in time, one of my Best Friends son´s my Godson had Kawasaki and was diagnosed on day 11 of the illness and has seriousproblems with his heart now.

Sharlene said...

OMG Angela. I don't know how you do it. Your family should be studied for sure by geneticists. I am so sorry you have to go through this and I will definitely keep poor Jackson in my prayers. You are so unbelievably strong. Thank God you stuck to your guns and got him in for the help he needs. Still my hero!

lisa said...

OMG Ang, I'm sorry you had a rough weekend. Poor Jackson! The medical profession should start taking the parents more seriously. Afterall, you have to a certain degree, more experience. I really hope they find a study you can join.

Thinking and praying for you and your family.


Debbie Moore said...

Oh gosh Ang, I agree it seems like there has to be some connection! You are amazing, all you go through and so strong. Glad to hear he is feeling better and I hope he only improves from here!

Jen said...

This is why you are going to be an amazing medical professional - you know more than they do. Thinking of you and hoping Jackson feels well soon.

melinda said...

Angela, I'm so sorry to hear about Jackson and glad to hear he is feeling better and that it is temporary. Way to go following your gut! Take care, we admire and care about you so much,

Jessica Kate said...

I wish I could give you a hug. I've thought of you often over the past coupe of weeks and my heart breaks for you and Albert. I'm praying for you all.

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