Sunday, November 29, 2009

WE FOUND IT, I think!

On the way home tonight I made the rounds of calls I have not made since we checked into the hospital. I had Emily in the back seat, and we went to Tom Thumb to get the cat some food. I thought how unfair it was that I could walk around the store, while the boys were stuck at the hospital. A hospital room can quickly resemble a jail cell, and you can feel very closed in. In fact, at one point, Emily said "I really need a smile box", and she suddenly remembered the importance of her charity. I told her it was vital we someday get her boxes Nationwide so no child feels so closed in.

Once at home I poured myself a nice big glass of wine, and chilled out in a hot bath. Then I got out.....and my text went off, and per Mike Jude had 101 degree fever. I burst into tears, I had had enough. I am not medically naive, and I have been with ill family members before. I know that elevated liver enzymes, decreased urine output, increased respiratory rates, and a fever, is not a good combination. For the first time I uttered the words via text and I told Mike "I cannot lose my son, I am scared". Mike just text back "I am scared too". I cried my eyes out. Soon Mike called and gave me some reassuring words and I said "there is something else there it's just like Em, there is something they are not finding". (Em had a water born parasite at age 5 that landed her in the hospital for weeks with a very delayed diagnosis).

I didn't know whether to get dressed and run to Dallas, or chill out, and quit panicking. So I settled for calming down, and reflected on the past year. I went into possible reasons for Jude's stroke, but of course there isn't an answer. I did however, this weekend, have a nurse tell me in the ER "I didn't know babies could have strokes in utero?" SIGH!!! I told Dr Riela (the neurologist) about that conversation, and he seemed a bit amused. He said there is a huge controversy within the medical community with "some people" whether kids can suffer strokes. I said "Well then how can they explain the blood shown on Jude's MRI" He said "Exactly, I could write a book and in Jude's situation Schizencephaly often presents with a stroke because the stroke caused the clefts."

So I digress, Mike then called tonight and said "They got the stool sample back, it's CDIF". I had no idea what that meant so I did some research.

What is C. Difficile. It causes diarrhea and can cause more serious medical conditions such as inflammation or injury to the large intestine which can lead to a blood infection, or death.

I read off the symptoms to myself, and thought "Jude has had every one of these, and even the severe symptoms!!! THIS IS IT, they finally found what is wrong!! Now what causes it?" Fecal matter, or antibiotics??? WHAT? How? We are so careful, and he has not been on antibiotics prior to yesterday. After further reading another cause of this is the continuous use of antacids like.....Prevacid, Zantac, and Prilosec, BINGO. So we have been blaming the Depakote, and it seems the culprit (in my opinion) was the seemingly innocent medication that reduces Jude's terrible reflux. I researched on and learned that the disease has a 17% mortality rate, but I choose to believe it's been caught in time. I am sure the doctors will want to do further testing, but I believe we have found our criminal lukring in the corner, and I just want my baby boy to be better now!!! They have started antibiotics, and Mike has taken over as far as demanding parent in resident and is asking for tests, vital signs, and research. The nurse told Mike that Zanatc won't cause additional problems, but we researched and it can, so Mike put a quick stop to it. No more antiacids period, until we know more!

I love you baby Jude, mommy doesn't think the house is the same without you here!!!

Even though I try to hold up well I have been scared out of my mind, and stressed. Thanks to my friends and family that recognized this, and have been there.


Lisa said...

First, I'm sorry for all you are going through and Jude has been in my thoughts and prayers. I'm glad they figured out what the problem is. Secong, our daughter is on Prevacid and has been for over a year so I think I need to research this. Thanks. Hang in there girl.

~Amy Rose said...

Jenn...I can't even to begin to imagine the stress and fear you must be going through. I am glad to hear they found out what is causing this in Jude...and we will pray for Jude to heal and get better! You are in my thoughts daily. We will pray for you all! HUGS!

Anonymous said...

I so hope Jude will be getting better now. Sending you lots of positive thoughts from Norway. Stay strong.

chuzzlewit said...

Thinking about you guys. You are an amazing family.


from Columbia, South Carolina

Judi Music said...

Baby Jude has prayers being sent..... I pray that ya'll find what's causing his pain and he finds relief!

Bring on his smiles again!!

A Girl Named Me said...

Now that they know the cause of the problems, everyone can focus on the fix. I'm hoping he'll bounce back quickly and your family be able to enjoy the holidays.

Joslynn said...

Hi Jenn,

I'm praying for you and your sweet family, I know you don't know me, but I follow your blog and have grown to love baby Jude and Emily. I love hearing all about your life and I thank you for sharing it with us. I know this is a hard time you are going through right now but you and Mike are doing the best you can and I love how you've done the research and you are taking a stand with the nurses and doctors...sometimes it truly is the parents that know best! Hang in there and know that God is in control and He is the ultimate healer!!!

Anonymous said...

Sending warm wishes and prayers your way!

The Hendrixes

Katy said...

Well, I'm so glad they found out what was going on. Saying a prayer for you right now!

Rich said...

Thinking of you Jude...