Tuesday, April 29, 2014

Nickel Testing

CJ began his nickel allergy testing today.  It was quick and painless.  The doctor asked a few questions, then he placed a set of 3 patches on CJ's back.  Each patch is divided into 12 squares.  Each square had a different substance that was being tested.  The first square is nickel, but the patches also test for cobalt, latex, and several other substances (see the complete list below).

CJ must remain dry while the patches are on.  He cannot shower or participate in activities that will make him sweat.  He finds the patches uncomfortable from a movement standpoint, but they aren't painful.

We will return to the doctor on Thursday afternoon.  The doctor will remove the patches and look for reactions.

Here is a picture of CJ's back:

Here are the allergens tested on the patches (I have no idea what most of these are):
1. Nickel sulfate
2. Wool alcohols
3. Neomycin sulfate
4. Potassium dichromate
5. Caine mix
6. Fragrance mix
7. Colophony
8. Paraben mix
9. (Negative control)
10. Balsam of Peru
11. Ethylenediamine Dihydrochloride
12. Cobalt dichloride
13. p-tert-Butylphenol Formaldehyde resin
14. Epoxy resin
15. Carba resin
16. Black rubber mix
17. CI+Me- Isothiazolinone (MCI/MI)
18. Quaternium-15
19. Methyldibromo Glutaronitrile (MDBGN)
20. p-Phenylenediamine
21. Formaldehyde
22. Mercapto mix
23. Thimerosal
24. Thiuram mix
25. Diazolidinyl Urea
26. Quinoline mix
27. Tixocortol-21-Privalate
28. Gold Sodium Thiosulfate (GST)
29. Imidazolidinyl Urea
30. Budesonide
31. Hydrocortisone-17-Butyrate
32. Mercaptobenzothiazole
33. Bacitracin
34. Parthenolide
35. Disperse Blue 106
36. 2-Bromo-2-Nitropropane-1, 3-diol (Bronopol)

Wednesday, April 23, 2014

It's Official!

So, here's a recap of the day.

We left our house and dropped our sweet dog off at the vet for his surgery.  Then we headed straight to the hospital.  We checked in a few minutes early, and CJ got that wonderful souvenir bracelet hospitals love giving out!

The day went really well.  The staff at the hospital in every department were wonderful!  Everything went smoothly and on time, if not early.  It turns out we didn't need a chest X-ray, so that wasn't done.  We started with the CT, moved to the Heart Station for the echocardiogram, then went to the Pulmonary Lab for the Pulmonary Function Test.  (It's amazing how much like a maze hospitals can be!  I actually got lost at one point!)

We were done with everything by noon, so we went to the cafeteria for some lunch.  This made CJ very happy, since he had chosen not to eat breakfast.  Even though our appointment with the surgeon wasn't until 2:30PM, we were told we could check in as early as 12:45PM, and they would work us in early.

Unfortunately, as I mentioned in the previous post, being early for that appointment didn't give the radiologist enough time to review the CT and determine the Haller index.  We still discussed the surgery, making sure we understood all that was involved, and when we would want to schedule it.  We have a busy few weeks ahead of us, so we are looking at May 20.  This would give him time to heal before summer and would let him enjoy his break and summer camp more.  We left with a tentative date, and the doctor said he would call us when he had the report from the radiologist.

Shortly after my previous post, we heard from the surgeon's office.  CJ's Haller index was 3.3.  It needed to be at least 3.25, so his PE is severe enough to warrant the surgery.  We confirmed the date we wanted for the surgery, and the nurse gave us the names of some allergists/dermatologists that do nickel allergy testing.  This is not a test every allergist or dermatologist does, apparently. 

With the surgery in just under a month, it's important to get the testing done within the next week-and-a-half, so the hospital can order the correct bar for the Nuss procedure, for which they need about 2 weeks.  As I mentioned in the first post, if CJ has an allergy to nickel, a titanium bar will be used.

The nickel allergy test actually takes several days.  The doctor will do what's called a "patch test."
According to, "in a patch test, the doctor applies a very small amount of the suspected allergen (in this case, nickel) to a small patch that is then placed on the skin and checked for a reaction."  (  As I understand it, we will go in and get the patch on CJ, then 2 or 3 days later, we return to see if there was a reaction.

As soon as I got off the phone with the nurse, I called one of the allergists and got CJ scheduled for nickel testing next week.  The ball is really rolling now. 

We appreciate your prayers for us today.  We are relieved that the Haller index proved to be enough to get this condition repaired, and we are hopeful that CJ's shortness of breath, pain, and low weight will all be on the mend soon.  OH!  And thanks for the prayers for our dog Louis.  He came through the surgery wonderfully, and he is home recovering (unhappily with a cone on his head).  His prognosis is good.  Between the successful surgery and the successful tests for CJ, we are feeling blessed and thankful.

What's next:
April 29 - Nickel allergy testing
May 20 - Nuss procedure

Here are a couple of pictures from our day...

CJ in the CT machine
CJ getting his echocardiogram

The Waiting Game

Well, we finished all the tests early, so we were able to meet with the surgeon early.  This was great in that we were able to finish our day earlier than expected and get home.  The down side, though, was that the radiologist had not had a chance to review the CT and get the Haller index to the surgeon before we met with him.  So, we are still waiting to find out if we will be having surgery.  Boo.  :(

The surgeon will call us later today with the findings.  His scheduler was out today anyway, so she will call us tomorrow (hopefully) to schedule the surgery.  At this point, we are looking at the end of May.

I'll update as soon as we know more.

Tuesday, April 22, 2014

Big Day tomorrow

Well, tomorrow is the big day.  Actually, I guess the surgery day will be "THE" big day, but tomorrow is the long-awaited day.

As of now, we anticipate being at the hospital at least 6 hours.  Ugh.  Here's the schedule we have, so you can be praying for us and kind of know where we are during the day:

9:30AM -- Chest X-rays
10:00AM -- CT
11:00AM -- Echocardiogram
12:00PM -- Pulmonary Lab
2:30PM -- meet with the doctor
Obviously, we're going to have some down time between the last tests and seeing the doctor.  We'll probably work on schoolwork at that time. 
We are hopeful that by the end of the day, we'll have an acceptable Haller index to continue our journey and a surgery date.  Speaking of which, CJ's schedule is so busy, we really need some guidance on scheduling the surgery.
Please pray for us as we go through our day.  Pray that CJ remains calm.  Pray that everything goes smoothly.  Pray that we can find a date that works well for everyone.
While I'm on the subject of prayer requests, please pray for our dog tomorrow, as well.  He has a large tumor being removed.  He will be in surgery while we are at the hospital.  Because of the size & location, it will be a rather complicated surgery.  We love our sweet dog, and we would greatly appreciate prayers for him and his doctor. 
I'll post again tomorrow after all the procedures.  Hopefully, we'll know a lot more!

Wednesday, April 9, 2014

By the way, I've added a "Follow by email" gadget to the left.  You can put your email address in there and be notified by email when I post again.  :)

Two More Weeks

So, this time, two weeks from now, we will be spending the day getting all the pre-surgery tests done for CJ.  It will be pretty much an all day event.  Our first test is at 10, we have another at 11, we are still waiting for one to get scheduled...I'm not really sure how many we'll have or how long they'll last.  I do know we meet with the doctor at 2:30, so I would assume all the tests would be done by then.

CJ has been complaining more about his chest hurting in the last couple of weeks.  Please be praying for his comfort level.  He's also feeling anxious waiting for all this testing to get done.  I think it's just the unknown.  I'm sure he'll feel better when we have a definite course of action.  So will we!

Thanks for checking in!  I'll post again after all the testing on the 23rd.