17 June 2009

It's Not CF, Thank You, Lord

It's not Cystic Fibrosis (CF).

Thank God.

I just wanted to get that out of the way before I get into our full (and long) day at Children's Hospital in Birmingham (this is me telling you that it's a long post) (and you can ditch at any time) (I won't judge you) (or know, really) (but God is watching) (just so you know) ...

Getting ready this morning wasn't odd, but loading Conner in the car felt like I was doing it with a pair of donor limbs. I was, surely, loading the wrong child. I started driving towards Children's just as I did so very early every morning after Chase was born and transported there. The same road, Michael and I in the front seat, but this time, there sat Conner - as the patient.

We were quiet for the first 20 minutes or so, when I finally let the elephant in the car get some fresh air. "We have the wrong kid with us," with a tinge of The Sad in my voice.

Michael agreed whole-heartily and touched my hand.

We parked on the 2nd floor, and got The Money Spot a few down from the walkway. I remembered to bring my parking ticket with me, but reminded myself that the green NICU bracelet was still in the pocket of the diaper bag, just in case I forgot to get the ticket validated. Both get you out of the deck free.

We made small talk in the breezeway and into the hospital. The hardest part is the smell - the memories and fears attached to that smell remind me with such intensity that I almost lost my son in that very building.

It's really an amazing place - full of helpful people, smiling faces, cheerful colors and decorations to make any child beam. Conner picked out his wagon for the day, and we headed for the elevators to the right of the main ones, those are fastest.


(on this episode of Pimp Your Ride: Wagon Edition...)


Downstairs, in Clinic 6, I signed in with all my cards ready, initialed the HIPA in record time and cut corners by having the receptionist pull Chase's contact information and copying it to start Conner's file.

We then were directed to X-rays and Main Lab and chose radiology first because there's a small elevator close to the clinics that is super fast. Conner, at this point, is very busy with his fruit snacks and apple juice and seems to be completely enjoying being dragged around in a red wagon. I checked to see if there was room for me, sadly no.

After signing in, we are called back quickly, but Michael left me in the waiting room. He is a little funny about me being exposed to anything "radiology" related because of the whole "I am carrying viable eggs" thing - isn't that just adorable? Hm. Yes, adorable is what I will call it....

Conner gets "pictures taken of his insides", as he puts it, and it rewarded with 2 stickers - an Elmo and Iron Man. We roll down the hallway, around the EEG clinic and into the Main Lab. Conner is still in the wagon and complaining that he is tired, so I pull out he laptop and load "MickeyMouse.com" (his words). After a 10 minute wait (actually, our longest of the day), we are called back.

Now, I googled CF a few times before this appointment, and knew that the standard test included a "SWEC" or "SWAC" test (can't figure out which of those it is), but I knew it meant they were going to somehow make Conner's arm sweat and measure how salty his sweat was.

What Dr. Google failed to tell me was exactly how they were going to make him sweat....

On one arm, the nurse rolled up Conner's short-sleeved tee to his shoulder blade and cleaned off his arm. Then, she placed a water-soaked, 1-inch square gauze above the bend of his arm on his bicep, placed a metal charger on top, and wrapped a velcro bracelet around that to secure the metal piece. Then, below his elbow, the nurse did the same thing, leaving the piece of metal above the bracelet.

Next, the fun part - she took out one black cable charger, just like what you'd use to jump your car (only much more tiny) and clamped it on top of the metal receiver. Then, she clamped a red cable charger to the red receiver on the bottom part of his arm and turned on the machine. It read "2 v" (2 volts, I suppose). He immediately began screaming, and the open skin between the two bound areas became visibly red and bumpy. He tried to rip off the bottom bracelet, only to restart the test.

For five minutes, he screamed. We promised him everything from ice cream to Neptune. I held his hand, blew cold air on his face and Michael rocked him. We counted down the final 30 seconds of the 5 minutes together.

The nurse took off the chargers and bracelets, wrapped each in a newborn diaper, plastic wrap, cotton and bright blue bandages.

And then.... she rolled up the sleeve on his left arm. I think I saw his soul jump through the second floor's ceiling. In a struggle, she cleaned and wrapped this arm the same as the right. She started the charge and I asked Conner if he wanted chocolate or vanilla ice cream. I even promised to top it with M&Ms and serve it to him during an African Safari while cruising the terrain in a Jeep made of gold.

In the middle of one long run-on wail, he managed to mutter "I want you to count with me again".

We counted, slowly, number by number. I would say "32" and he'd repeat me. I'm close to certain he's never counted this high, but it didn't matter and we made it to 70 before the 5 minutes were up. He earned 1 more sticker - The Incredibles.

During our 30 minute wait, we purchased a chocolate pudding parfait topped with brownies and whipped cream. He downed half of it in between post-cry air-gasps.



(Hey Look! A painted COW!)


At 11:10 we returned to have the bandages removed, the gauze carefully placed in a container for the lab, and obtained our second Incredibles sticker. We were really racking up today.

It was then that we headed back to Clinic 6 - Pulmonology, waiting no longer than 3 minutes.

The nurse came in, and we covered Conner's slightly-sorted medical history. RSV at 18 months that wasn't caught till way too late, a full month in before a doctor actually tested him. That doctor was our first experience with the medical community in Montgomery, a pediatrician who wouldn't take blood work from a child with a 104 fever for over 3 weeks. A pediatrician that should be counting her lucky stars that I am not currently writing my lawyer instead of a blog. A pediatrician that still just might receive a nasty, nasty letter and a little bad mouthing. As a matter of fact, it's this pediatrician:

Dr. Catherine Wood

and her practice is located here:

Partners in Pediatrics
8160 Seaton Pl
Montgomery, AL 36116
(334) 272-1799

DO NOT TAKE YOUR CHILDREN TO THIS PRACTICE.

If she had taken ANY time to diagnose my son, after we'd come to her every few days for 3 weeks with a lethargic 18-month-old running a high fever, my son might have avoided nearly 20 rounds of antibiotics.

He could have avoided 3 cases of pneumonia.

Conner might have never had the Flu.

Conner wouldn't even BE at Children's today, and wouldn't have had to cry through a shock-test.

Conner wouldn't have Asthma.

This is our treatment path for now. It is believed that the damage caused by RSV weakened Conner's lungs and airways, leaving him prone to infection after infection. Most Asthma patients have "triggers" and we are under the hypothesis that any type of cold or respiratory virus/illness is his. Under this theory, Conner comes in contact with a common cold, his airways constrict, fluid builds in his lungs (causing fluid to show up on his chest x-rays) and he stays sick for 3 weeks rather than 3 days. His constant cough is his body fighting for a little "breathing room". His lack of growth is related to the lack of oxygen.

For now, we are on a "litmus test" if you will, using a twice-a-day inhaler along with a rescue inhaler in case he does contract any type of cold or virus. We will know that Asthma is his diagnosis if:
  1. His frequent dry cough lessens
  2. His energy level increases
  3. If he gets sick, he gets better within a week (instead of his usual 3-4 week colds...)

We have a follow-up appointment in 3 months and it is hopeful that this diagnosis is correct, and will allow Conner to be healthier, happier and maybe even taller and thicker!

If not, the other hypothesis on the table would be an auto-immune disorder, so of the two - we will take the Asthma.

(Oh, and Conner scored two MORE stickers after his diagnosis - Thomas the Train!)

**Edited to add: Erin asked a funny question in the comments section, saying "Where did he put the stickers when he got home?"
Answer: With every sticker obtained, Conner placed them on Michael's shirt - Elmo was first and got center stage on Michael's yellow polo. The rest soon joined Elmo and by the end of the day, Michael looked as if a sticker factory had attacked him. He wore them for Conner all day and it was absolutely precious.

14 comments:

  1. Bless his heart! I'm glad things worked out somewhat better than expected! Still in my prayers...

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  2. Praise Jesus it's not CF!! :o) I had tears almost pouring down my face. (I say almost b-c I am @ work and dont want anyone to be concerned with why I am crying. If I were at home I would've been balling my eyes out!) You describe that hospital SOO well! The feelings you got whne you stepped into that building..the smells, everything about it just brings back aweful memories. Evertime I go in there I start crying. I honestly cant believe that it took you NO TIME to get back to see the Dr.! I was very schocked! haha

    2nd:: Dr. Wood....:( This makes me sad to see you say all that stuff about her. She was my pediatrician when I was little and now she is Reagan's...I have never had a bad experience with her yet. But I will definitley be watching more closely. (& looking for another pedi.)

    I am soo happy to hear the good news that it's just asthma and nothing extremely serious such as CF. I hope he does well.

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  3. You have no idea how relieved I was yesterday to hear that it's asthma & not CF! I'm still a little peeved (as I'm sure you are) that no one on their staff warned you about the electric shock aspect of the sweat test (maybe they thought you knew?), but I gotta say that I think it's awesome that Conner wanted to count his way through it. You describe the whole awful experience beautifully, even if that seems inappropriate to say. (What can I say? I appreciate writing talents.)(I also love parenthesis.)

    I really hate that this whole experience possibly could've been avoided by a more attentive pediatrician. Normally they're a little more alarmist about such excessive fever... but maybe that's logic talking, I dunno.

    P.S. You really need to look into adult-sized wagons for people to haul us around in. THAT's the way to travel!

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  4. I am torn between being so very happy it is not CF and crying for you 3 for having to go through that. Poor little guy, we will keep you all in our prayers.

    xoxoxoxoxo

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  5. Ok, I got really behind in the blogosphere & didn't realize what was going on with Conner. I'm glad it's not CF!! We have a friend who has CF and he is now 26 and doing well, but it is a tough disease to live with. I hope Conner does well with this treatment!

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  6. I am very glad it's not CF. I am also very sorry about the swet test - that is awful!!! I feel so sorry for the poor boy!

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  7. What a scary, hard time! For Conner and you! I am so glad it's not CF. Where did he put the stickers when he got home?

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  8. @Rachel - RUN! Seriously. If you EVER doubt her, please... RUN. GET ANOTHER OPINION. Oh, and please slap her for me.


    @Everyone - Thanks for all the thoughts and prayers!! Conner started his medication today and is a pro

    @Erin - I had to edit the post to add the answer to your question. It's actually a funny point...

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  9. Oh MAN Amanda. All of that would have killed me. SO THANKFUL it's "just" asthma!

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  10. I, too, am glad that it is not CF! It also distresses me that you were not forewarned about the way the test is conducted (and you would think that in the South, in the SUMMER, there would be a better way to get sweat - just sayin').

    Good for you for speaking out about the former pediatrician. It was something similar that caused us to leave pediatricians and head to a family doctor. It was the best decision (for us)!

    I'm glad that all of the stickers were enough for him! Had it been Andrew, I would have been shelling out some dough at Target afterward!!

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  11. Amanda- try Dr. Morrison or Trumbell at Pediatric Healthcare. I hope you have a better experience with your new pediatrician and I am so sorry all this happened.

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  12. I'm glad to hear it wasn't CF. I almost started crying read about the shock test. (((((Hugs))))) to Conner. I know that was hard on him and Mommy & Daddy.

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  13. Just want to give you some support. You don't know me, up to now I've just been a "lurker." You did such a wonderful job supporting your son through an awful test. I'm so sorry you had a rough day -- and for all of Conner's sicknesses. I hope this is the beginning of the end to all that. Take good care.

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  14. @Spin Mama - Are you sure you haven't de-lurked before? Your profile seems familiar... Thanks for commenting and for the well wishes!

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