04 June 2009

Left Field

Had I of attempted this blog post on Tuesday, it wouldn't have made any sense. It's apparently really difficult to compose a complete thought when your mind is racing 1,000 mph towards No Where Land.

But, I didn't want to leave you guys in the dark, dearest Internet Family. I conferred with a good friend, as she agreed that although blogging would help me deal with the problem at hand, I was still concerned with sounding alarmist - and it would be best to wait for more information.

I did, and I am glad. Again, it would've just been a crossword puzzle of "what?", and now I have a tiny bit of perspective and a grasp of what's going on. I knew my family needed the power of prayer, and that is why I choose to publish the elusive "Pray for Conner" post. Thank you guys sooooo much for obliging. We have ONCE AGAIN felt your prayers and thoughts. 

Let's start from the beginning, shall we?

Conner came down with what appeared to be the exact same thing Chase had last week. On Monday night, he spiked a 104.5 fever (auxiliary = 105.5+) after being on 2 doses of antibiotics. Classic Chase problem. I knew that had I of brought Conner in before we had antibiotics called-in by my Dr.-in-law, they would have simply prescribed him the antibiotics anyways, so I opted to forgo an unnecessary extra Peds appointment.

After his fever spiked like it did, I knew it was time to call the Pediatrician and get the same Rocephin shot that Chase had. So, by lunch on Tuesday, there we were sitting in Dr. McWooHoo's (my new pediatrician at the same practice - SAH-woon over this man. He's simply amazing.) office waiting on the strep test - Positive. 

Duh, Amanda.

But... Conner's breath sounds aren't Kosher and although we already had a Culprit for the fever and swollen glands, Dr. McWooHoo decides he thinks Conner needs a chest x-ray.

"Greeeat. Another chest x-ray... sheesh.." I think to myself...

Conner gets one EVERY SINGLE TIME he gets sick and we actually make it to the Peds office (noteworthy: having a doctor in the family, we don't go every time Conner gets sick OR I WOULD LIVE THERE). And every time? It comes back with something.

So, we x-ray and wait.

By the time Dr. McWooHoo is ready to see Conner again to look at the x-ray, Conner's fever is starting to climb again. He's coughing, he is marbled and shaking. I hold him as the doctor comes in and starts explaining what he's found.

"He also has pneumonia," he explains.

"Really? Wow," I look at him and then to Conner and say "Ge'ez kid, again?? What's with you and the pneumonia?" rhetorical question, obviously as Conner is shaking so badly I don't think it's physically possible for the sound waves to have a fighting chance at making it to his tiny ear drums.

The doctor looks at me, puzzled and a little surprised. "Again? How many times has he...." it is then that Dr. McWooHoo starts combing through Conner's tiny little medical records, a far cry from his younger brother's phonebook....

Dr. McWooHoo is counting on his fingers as lung-related diseases are mounting on his hands....

He turns to me, and starts explaining to me a whole slew of things that I begin to jumble up after he says "I'm referring you to Children's Hospital in Birmingham" and the words "Cystic Fibrosis testing".

He mentions "low weight/height percentiles" and how Conner has never had a clean chest x-ray. I'm in my head going over how Conner always has a cough, like ALWAYS, and how he snores and is gets tired easilyoften . He'll go to the playground and tell Michael and I after 5 minutes "I'm tired, can we go home?"

 I hold it together, nod and pull Conner a little closer. It's like a nightmare is starting over again, but with a different child.

The doctor is writing very quickly and leaves after playing with Chase - which was a great little distraction. We have to wait 15 minutes after the Rocephin shot to make sure Conner doesn't have any adverse reactions. During that 15-minutes, Conner's fever gets back up to 104 auxiliary; he is shaking even more and vomitting. A wonderful nurse comes in to stay with us, gives us Tylenol and helps me with Conner (she kept asking him to look at her, and she was checking for seizures). I got him and Chase to the car soon thereafter.

It took me all of 4 seconds to break down in tears. Loading his limp, burning body into the car did me in, and I started the car and cried. I called Michael and explained we'd be going back to Children's Hospital and tried to recollect any information Dr. McWooHoo gave me.

We get home, I put Conner down for a nap and then Chase. He sleeps off his fever, runs a small one that night and by the next day (yesterday - Wednesday), his fever is gone as was expected. His breathing was the same and possibly a little worse. The pediatrician and I debate a comparison chest x-ray, but decide to change his antibiotics (again...) instead. 

On Tuesday night, I wrote the prayer request post and told a few close (mostly on FB) friends some of what was happening. Donya, a good friend from UA, just happened to be online and I shared our story with her. I can not tell you how amazing she is, and how awesome God's hand was in this, but she just so happened to be the perfect person to tell Conner's story to. She knew a pulmonology (lung disorders specialist) nurse at Children's.

Um, wow.

Then, she tells me last night that she has the nurse of a Pulmonologist's name and direct line number and is expecting our call (FYI - in specialities... at least pediatric specialities, the doctor has a Head Nurse. She is your lifeline, your go-to gal, your window to the All Mighty Specialist. She/He is the person to know).

Double wow.

We were just told yesterday that Conner's appointment had been arranged for August 5th. After hearing it would be soooooo far off, I almost asked if that would be of 2009 or 2010...Dudes. My hair might fall out WAY before then. So this blessing is nothing short of awesome.

So, yes... the Waiting Game. Haven't I done this before?

Keep Conner in your thoughts and prayers, please. Obviously, we want a negative CF test and some answers as to why he keeps developing pneumonia. Every doctor we've spoken with over the last 2 days agrees that no child should be getting sick like he does. If Chase gets sick, Conner gets it, but a lot of times... Conner gets sick and Chase is fine. Red. Flag.

They will be doing some diagnostics to exhaust all lung-related disorders and possibly gene testing for us all. Gene testing was something suggested to us after Chase's ordeal, but we opted not to since it wouldn't provide treatment options, nor answers - real answers. But, since it seems gene testing has reared it's ugly head, we might take the plunge.

Love you ALL and thank you again for the prayers, thoughts, comments, e-mails, phone calls, FB messages, etc. 

Thank you, Donya. My sanity, for now, has been saved.


6 comments:

  1. Joanna Cox-Adcock04 June, 2009

    I will keep you in my prayers. My cousin who lives in Chicago has CF. He is 20 now and is doing ok.
    Keep your head up!!

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  2. ugh.. August?!? I'LL be pulling MY hair out, you'll already be bald. No one ever told us Mommy-hood is filled with these kinds of left field knock outs. (at least, no one ever filled me in)
    I'll be praying for the whole family, and for a peaceful, uneventful rest of the year!
    Love to you all...

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  3. I agree with Bonnie...August really? I would be going crazy too. I will keep Conner and your family in my thoughts and prayers. (((((Hugs))))) to you and your family.

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  4. My thoughts and prayers are with you and your family, especially Conner.

    My nephews (9 and 7) both have CF. They have lived the last 7 years in Sweden which happens to be the world-leader in CF research. It was a God-thing that they ended up there when the boys were diagnosed. But they are both very happy, healthy little boys. Extremely active, etc. IF that is Conner's diagnosis (and I pray it is not) he can live a very normal, happy life, so don't despair. God is in control.

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  5. *hugs* and prayers for all of you!

    WOW - I spent yesterday afternoon catching up on Chase's medical saga. Bless your heart!! (Yes, I am southern, I can't help myself.)

    As Joanna and Mama Fuss said, children can have normal lives with CF now - the treatment options are tremendous now!

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  6. Just started following you on twitter and found your blog. Hang in there. Sounds like you are getting excellent care but I can only imagine how scary it is. Sending you all good thoughts from NYC!

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