Monday, February 28, 2011

There's a reason we switched to St.Jude.......

So, to spare you the worry, I will tell you now that Matt is okay.  :)  He is actually feeling quite a bit more like himself and even went to a half day of school today (I think I need to modify his schedule so he only goes 1/2 days everyday, but that's another post.....)

On Thursday he went in for his MRI.  It was a bit of a fiasco.  They accessed his port and it seemed just fine.  I was waiting and waiting and waiting and was beginning to get worried about it taking so long when the tech came out to get me - without Matthew, never a good sign.

Apparently, the tech had injected the contrast through his port, all 16 cc's of it, and then gone back to complete the scan.  However, there was no contrast in his system.......  Somehow, the port had come dislodged and there was only about 1/8" of needle inside Matt.  Instead of the contrast going into the Port and through his system, it had all been injected directly into the muscle right underneath the skin.  Everyone was absolutely shocked that Matt hadn't felt pain when this had happened.  Usually if something misses the Port, it is very painful immediately.  Besides the fact that Matt is the toughest kid I know and has an insanely high pain tolerance, he was also on massive amounts of narcotics to combat the severe headache he had.  Soooooo, they had to have an oncology nurse come down to re-access his port so he could finish the MRI and also so they could flush it with Heparin (otherwise it would clot and be unusable).  Our 3:00, 1 hour long MRI didn't get finished until almost 7:00.

I left PCMC a big bundle of nerves.  I was terrified about what we would hear.  I waited anxiously on Friday.  In fact, I waited and waited and waited - all day long.  My mind was going a million miles per minute.  It was probably good news, so that's why they weren't calling.  It just wasn't a big deal.  Or WAIT, it was probably TERRIBLE news and they were all drawing straws about who would have to tell us our child was dying, or needed a shunt, or needed another surgery, or had developed a secondary cancer, or, or, or, or.....  You get the idea.  I spoke with St.Jude 3 times on Friday.  They hadn't heard anything, either.  In fact, they had called twice and left messages, but had never received a call back.

Finally, towards the end of the day, we heard the GREAT news that Matt's scans looked great.  Our friend was able to look at the scans and read us the report.  He called the scans 'miraculous' in the change caused by the chemo, but also noted that Matt had a tremendous sinus infection.  He said he had rarely seen sinuses so terrible.

So, I got off the phone with him, called St.Jude to get the list of medications that Matt could be on for this infection, called my pediatrician and explained what we needed, and he called in a prescription for the antibiotics.  Matt has now been on the medication for 4 days and he is feeling much much better.

I've spoken with St.Jude several more times.  They are really worried about Matt.

He's been on needed treatment for 4 days.

I STILL haven't heard how Matt's MRI looked from PCMC......  And they are the ones who ordered the MRI!

Does anyone else think that is NOT OKAY???


Kristie said...

Great news!!! No it is not okay, don't they understand you are a parent worried sick about their child, sheesh! :0) I have bad history with PCMC anyways, so I'm biased.
So happy to hear the word "miraculous", that's always good. <3 ya! Kristie

Janet said...

So glad to hear it is /only/ a horrible sinus infection. And, that is so NOT okay to not hear from PCMC. I'm still waiting on oncology notes from December!?!?! Do you have a BT coordinator at PCMC? You should. Call and bug her a lot, this is her job.
With hope and peace, Janet

Reeses Pieces said...

No not okay!!! I've heard a few negative things about PCMC this year. They're not living up to their reputation. Glad to hear it's only sinuses. I hope he didn't pick up the infection in Memphis though. Supposidley we have the worst allergies here because of the Mississipi River being so close. I guess everything runs downstream and ends right here in Memphis. I can't believe the allergies we have now. BLAH!!!

The Huffies said...

I honestly can't believe that! Ugh for you guys, so sorry! We haven't had anything but good experiences with PCMC so I feel bad that you are having such a bad experience. I would be throwing the smack down right about now to get the results! Good luck, we pray for you often.

alligood said...

YOU get reports from Oncology??? Seriously?!? I've never ever received an Oncology visit report. Matt has been a patient there for 4 YEARS!

The only group I EVER receive reports from is Endo.

Janet said...

No, I don't /get/ oncology reports, I have to ask for them, and ask and ask. In gathering records for second and third and fourth opinions I've run into so many holes, so many difficulties. I've started asking the Dr. for a copy of whatever paper he is holding in his hand before we leave. Trying to get it later is a nightmare.

MaryAnn said...

I am glad to here Matt is doing well - but crap, PCMC is slipping. Our last appointment left me feeling like we got half the news so just lacking. I dont know how to explain it, but I just felt unimportant to them. I am glad you have St. Judes.

Cameron VSJ said...


I have a quick question about your blog, would you mind emailing me when you get a chance?