Questions and Answers (Oct. 7th 2008)

McKenna Update . . .10/7/08

So we met with the Radiologist today. We were in a conference room with Mckenna’s scans up so we could look at them while we talked. I insisted on this appointment as they had originally just had us going in for the procedure without any consultation. Dr. Rivard was great and seemed happy to meet with us.

My questions:

1. Question- What sclerosing agent will you be using?

Answer- Sotradecol

This is exactly what I wanted to hear! It is much milder and safer than straight alcohol. Yeah-- no battle here…

2. Question- What are the possible side affects?

Answer- whenever you break the skin-- infection and bleeding. Also sometimes there is some mild necrosis (tissue death) of the overlying skin. Generally mild and requires some antibiotics. Worse case scenario-- plastic surgery .

3. Question- Will this be a one time injection or will she require this procedure again?

Answer- She has one large (Macrocystic mass) that connects too a small area of some smaller ones. We are going to inject the larger mass and hope the agent travels into the smaller ones as well. If it does not it may require another injection at a different time.

4. Question- Will she require a drain?

Answer- yes-- for a couple of days. He showed me the drain and how it was going to work. Interestingly this one won’t require stitches.

5. Question- will she need pain meds?

Answer-- We will send you home with a prescription you can use at your discretion. (I’m happy about this!)

6. Question-- will she be receiving precautionary antibiotics?

Answer- No! ( I’m happy about this!)

7. Question- will she be kept for 24 hours?

Answer- No. It is an outpatient procedure. (I’m happy about this!)

8. Question- Dr. Snyder feels we should have a CT Scan to make sure she does not have a more diffuse condition. Do you agree?

Answer- it’s very unlikely she has this condition, but yes-- I agree. Information is always a good thing.

9. Question - why a CT Scan over an MRI?

Answer- to be honest- ease and availability. (WOW-- thank you for your honesty!)

He went on to acknowledge that there was radiation exposure but it’s effects are undetermined and likely mild however he did not think negligible and completely respected concern about it.

I told him how I had been in contact with the Vascular clinic At Children’s Hospital of Boston and that they always do MRI’S he acknowledged that was true-- (they sometimes consult with them-- YEAH!) and he intimated it was probably because of the possible radiation exposure that they use MRI on the kids instead if CT. I am currently awaiting an answer from Boston on their reasons for choosing MRI.

He said it was my decision and he would respect either way.

CT is much faster and it’ll happen October 24th if we do that. MRI takes an hour and I’ll have to reschedule everything. It could be possibly 6 to 8 weeks later. I asked him if there was any harm in waiting that long and he said , “No.” That amount of time in her case would not make any difference.

So I’m in the process of rescheduling everything. I want the sclerotherapy to be piggy backed with an MRI and I am willing to wait for that. I can’t help thinking if Mckenna’s lymphatics/immune system is in anyway abnormal or impaired why would I take the chance of exposing her to radiation. What if the CT Scan was clean that day and then the radiation caused her to blow up more LM’s(Lymphatic Malformations). I know that’s not entirely scientific, but it’s just an intuition.

10. Question- will their be contrast used in the scan?

Answer -- yes-- they’ll administer it I.V.

11. Final Question: Her LM’s blow up suddenly when there has been no prior indication anything is wrong. She is exhibiting no symptoms indicating she has a terrible problem with her insides. Is this scan not just a picture of the day? If it’s negative will that really give us any final answers?

Answer-- You are right-- it is just a picture of the day, but it will go a long way to ruling out any kind of severe systemic condition. And gathering information is always a good thing. (I am satisfied with this answer.)

All in all I'm very pleased with this doctor and how this consultation went. We did get approved for medicaid so finances shouldn't be an issue-- thank God. Pray for all of the re-scheduling to go smoothly and that Dr. Snyder is cool with signing off on the MRI instead of the CT. And of course we appreciate your prayers for healing and good health for McKenna.

Love,

Amber