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Sunday, November 6, 2011

Yay for Lymphadentitis staphylococcus aureus!!

Weird title...but as you read on you will understand.  I wanted to let everyone know what has been going on as I am sure some of you may have questions and so I don't have to tell the story over and over.

The last couple weeks have been an emotional roller coaster that we are still on but it is finally slowing down.  I will start with the beginning of October.  On Tuesday October 4th Emma came down with a fever of 103.  Her fontanel (the soft spot) was a little enlarged so we did some blood work and everything came back normal so there was no reason to worry too much and we believed she just had a virus.  She ran a high fever for 3 days and then on Saturday the 8th the fever went away and she presented with a rash.  (Typically a clear sign it was a virus). 

She was then completely fine and we even had her 6 month well check on October 14th where she received a glowing healthy report.  Everything continued to be fine until Wednesday October 26th.  Emma awoke to a large mass on the right side of her neck.  Panic set in and I got her into the pediatrician right away.  The mass measured 3cm by 4cm.  Initially the doctor thought it was an enlarged lymph node but those are ususally only the size of a pea, Emma's was the size of a golf ball.  The thought at the time was a bacterial infection.  Emma is completely fine otherwise except when you touch the mass.  There is no fever or other symptoms.  The doctor did briefly mention tumor but said the chances of that were so slim she just wanted to calm my fears.

That day we proceeded to do lots of blood work, a chest xray and an ultrasound of the mass.  Everything came back normal except she tested positive for Roseola (we assume was what she had at the beginning of the month and was still in her system).  The doctor went ahead and prescribed an antibiotic just in case and said that it should go down but I was to follow up on Friday.  On Friday the mass had not changed so we were then prescribed yet another round of antibiotics. Emma is now on 3 doses of anitbiotics a day. 

We go through the weekend with no change and then Monday the 31st we are in the doctor's office first thing.  The Pediatrician decides this has gone on long enough and we need a CT Scan and to see an ENT.  She asks if I have a preference on ENT's and it was decided that we would go to the person who could see us the soonest.  The way it worked out best was for us to go through the ER @ St. John's Mercy and proceed from there.  It took us quite a while to do the CAT scan as you can't ask a 6 month old to sit still so they needed to sedate her and Emma is just as stubborn as I am so she fought it for quite a while. 

Finally around 12:00 she fell asleep and we were able to do the scan.  A few minutes later the doctor came in and said it looks like an abscess and they will have to go in and drain it.  Not the best diagnosis but not the worst.  Ten minutes later our world came crashing down on us.  The doctor came in again and told us they got the radiology report back and it looked more serious then they had thought.  It looked to be a tumor and due to the size and location it could not be removed but they would schedule her for a biopsy.  Within minutes we had ENT's, oncologists and a chaplain in our room.  Mike and I had no time to even digest the information before they were talking about how fierce this tumor looked and how when they do the biopsy they would like to go ahead and put in a shunt to administer future medicines. 

My thoughts were how in the world did we go from an abscess to a possible tumor to assuming this tumor is cancer.  Mike and I were devastated and didn't quite no what to do.  We were scheduled for biopsy Tuesday morning at 11:00 and because Emma was having no other symptoms they gave us the option of admitting us overnight or going home.  We chose to go home.  Best decision in the world. 

As we were getting ready to leave the hospital we got a call from our pediatrician who had been briefed on everything and was not liking the direction things were going.  She actually was encouaging us to start over at another hospital first thing in the morning (even though she was the one who sent us to the first hospital).  Initially I didn't like the idea of starting over worried that we may be wasting precious time but after speaking with her several times and going over things she was easing our fears saying that with all her experience it is very rare for a tumor to present this way and she is leaning more towards an infection of some sort.  She said that she would have us directly admitted to St. Louis Children's Hospital and would have everyone come and see us that needed to.

We were admitted and in a room by 9:30 Tuesday morning.  We were admitted to the Oncology wing which wasn't very reassuring but I knew that we were at one of the best Children's Hospitals in the United States.  All I could do was pray.  We had several doctors come and evaluate Emma and at about 2:00 we got the word that they did NOT think it was a tumor!!  Praise the Lord!!  It was an abscess and they would have to go in and drain it.  By 3:00 Emma was in the OR and she did just fine.  The went in and drained it and did do a biopsy just in case.  She had a drain in for 2 days to drain out the rest of the infection.  The infection did test positive for staphylococcus aureus in the lymph nodes.  This is not anything to mess around with but compared to what we were looking at earlier we were estatic.

We are now home and just enjoying our family and thanking our lucky stars because this could have gone very differently.  We are thankful that our pediatrician was watching out for us and trying to advise us as best she could.  We are thankful for Mike's parents who kept Will while we were with Emma.  We are thankful for my parents who were there offering support.  We are thankful for the Doctor's who took great care of our little baby.

We still have follow up appointments both Monday and Tuesday and we don't have the biopsy results back but we are confident that nothing will come of it.  What caused this whole thing we may never know.  It was kind of a perfect storm of events.

This just goes to show you how quickly your world can change forever and how you have to be thankful and enjoy every minute God gives us on Earth.  We ask that everyone continues to keep Emma in their prayers.

Lesson #2: when you are not comfortable with what doctor's are telling you, you can get a second opinion.  Thank God we followed our Pediatrician's advice.  I cringe just thinking about where we would be had we continued to move forward with the initial diagnosis.


Even with everything she has been through she is still smiling.





Here are us girls modeling our St. Louis Children's Hospital shirts!!


This is after the fact.  You can see the lump (it is half the size of what is was).  The incision is about 1 inch long and we are to leave it open to the air as much as possible to allow for continued drainage.






Hug your babies.  Life is so precious!!

2 comments:

Laura said...

Wow Lisa, I am so happy to hear it all turned out for the best!! I can't imagine how scared you must have been!!! I hope Emma recovers well, but sounds like she already is!! Take care!

Megan said...

Oh my Lisa... I am sending you a HUGE *hug* Very scarey. High five to your ped doctor!