Update on Gavin

Please continue the prayers for sweet Gavin.  Here is the latest email from his Mom:

 

Hi Everyone,  

 

We saw the GI today and things went well.  The news is as follows:

• The pathology report on the current biopsy report show that Gavin has 20 gastrin producing cells per high power field in his stomach, and 3-4 is normal.    
  

• The GI ordered labs to be done later today and he also wants stool samples to ensure that there is no active bleeding.
  

• He wrote the order for the upcoming endoscopy (number 4) and we wait to hear back from the scheduler.  
  

• He chose a surgeon to do the gastrectomy and vagotomy.  He is a pediatric surgeon at both Miller Children’s Hospital and Children’s Hospital of Los Angeles, and has prior experience with performing this surgery on adults.  There are no pediatric surgeons in the area that have experience performing this surgery on children, and our GI thinks this surgeon is the best man for the job. 
  

• All his doctors agree that it is in his best interest to do surgery at Miller Children’s Hospital because all his current doctors are on staff there.  
  

• Surgery is the next step regardless of whether we know the cause or not, and whether we can prove it again or not because medical management has failed Gavin.  While we don’t have to rush into surgery now because of recent medication additions, these medications are short term fixes–it may give us a few months before we find Gavin in a potentially fatal emergency situation.  Therefore, we are working quickly so that we get to surgery day without any emergencies, but aim to not have to rush so that everything will be well planned and thought out.
  

• If everything goes smoothly, we are looking at surgery in maybe 2-3 months.    
  

We praise God for making our path really clear, and that so far, all his doctors and us agree with each other completely.  Gavin continues to complain of stomach discomfort, but we are thankful that it is intermittent instead of non-stop.  He continues to take in the bare mimimum amount of calories to get by, but is maintaining the two pounds he gained back since starting an additional medication in the past month, because this new medication temporarily allows him to absorb all the nutrients in his food. 

 

And just in case you are all wondering why he looks so good, it is because he takes 28 doses of medication a day (with an additional 12 doses when needed) to maintain what you all see.  Again, the problem is that these meds will eventually stop working–they are short term fixes.  Therefore, we hope that surgery will be a long-term fix for our son, and that ultimately the Lord will allow it to heal him. 

 

Please keep our little man in your prayers while we wait and prepare for another endoscopy with anesthesia, and then surgery.  Please pray that the Lord will continue to guide us through each step he wants us to take and that He will continue to make our path clear.  Above all, please pray for protection over our son–protection before, during, and after surgery and that the Lord will allow this surgery to heal our son on this side of heaven.

 

Thank you so much for the prayers and offers to help.  We will let you all know when more help (beside prayers) are needed.

 

In Christ,

Carla (and Tim) Gorecki 

Please pray for Gavin

Please find it in your loving hearts to pray for my dear friend’s son Gavin.  He is just 3 and has suffered so much in his short life.  Now his parents have gotten some more bad news regarding his health.  The following is an email I received from his mother.  I ask that you put him on your prayer lists and forward this in any way you’d like.  The more prayers the better.  More on his story can be found on his mom’s blog:  Mastomama

 

Hi Everyone,

We spoke to our son’s gastroenterologist today, and got some huge news.  A few weeks ago, he pulled Gavin’s old endoscopy biopsy slides from the hospital.  He had the slides re-stained with a different stain than previously used, so he could see if he had hyperplastic gastrin producing cells in his stomach.

 

What they saw astonished them.  Because of the stain used, the abnormal cells turn brown to alert the pathologist of the abnormality.  The whole slide turned brown.   

 

So we finally have our diagnosis for his severe gastrointestinal issues–he has a disease called Antral G-Cell Hyperplasia…..FOR SURE. 

 

So many of you may know that the past two years Gavin has had several whole body scans because they thought he had a tumor that was producing the severe symptoms.  We were all stumped when scan after scan revealed no tumor.

 

One night, I spent some time researching through journal articles, and came across this disease.  I thought it sounded so much like Gavin that I was 99 percent certain it was it.  I printed the journal articles and brought them to my son’s GI.  He read them and agreed it sounded possible, and it was something he hadn’t thought of.

 

That led him to staining old slides, and that led to the discovery.  After 3 years of test after test, we finally have proof that this diagnosis is the right one.  I praise God for leading me on the path He laid out for us–for answering our prayers, for revealing the truth, and for making it so certain that there is no room for misunderstanding.

 

The treatment is a gastrectomy (surgery to remove the stomach).  It could be partial or total, that hasn’t been decided yet.

 

The next steps are as follows:

• On Monday we will go up to Miller Childrens Hospital to see our GI at his clinic.  While we are there, we will schedule another endoscopy, to be done in the next week or two.

• During the upcoming endoscopy, the GI will take additional tissue samples to biopsy again.  He wants to prove the disease twice before sending him off to such a HUGE surgery

• Assuming the results are the same, we will start interviewing surgeons, and go from there with the best surgeon for the job

If everything goes smoothly, and the answers continue to come so quickly and clearly, we are possibly looking at doing surgery sometime before the beginning of summer.

 

I ask you all to pray for our little man….our GI re-emphasized what a huge surgery this is, but with that comes the potential to completely cure him from this disease (*he would still have mastocytosis, but the surgery could cure the most pressing problem).

 

Please also pray for the Lord’s peace for me and Tim.  We won’t lie, it is scary.  It is a moment by moment, one step at a time decision to choose to trust Him–it’s a choice we have to make over and over throughout the day as fear and doubt creep in.  It is in these vulnerable times that Satan attacks, and we ask for protection against that.

 

I will update when I know more…in the meantime, we appreciate your prayers and support.

 

In Christ,

Carla (and Tim) Gorecki

 

Pulmonologist Visit

           

Yesterday I saw the pulmonologist for this new diagnosis of asthma.  It actually went quite well.  As noted in the last post I have probably had asthma for a long time but yet have also been in denial regarding it for a long time.  The appointment started with pulmonary function tests.  Those are always interesting as you blow into this crazy looking machine!!

Next on to see the doctor.  He and I have had a wonderful working relationship for nearly 9 years now.  He can be difficult to work with but we have always gotten along and had mutual respect for each other.  He was quite thorough in his history starting with any sinus issues and working his way down to my lungs.  I had chronic sinus infections starting when I was a teen.  He says this is probably when my asthma started.  Next we moved on to anything I’m allergic to.  I already know that is dust and dust mites.  Then onto household and environmental exposures.  Smoking history (no!)  Etc, etc.  Like I said very thorough.  (But the nice thing is I’m not allowed to vacuum anymore due to the dust allergy and it’s negative effects on my airway!!!)

The next component that he said was a major issue is reflux.  I used to have MAJOR reflux and had anti-reflux surgery in 2002 called a Nissen fundoplication.  Since then I have not had to take any antacid medications.  But he said that people like me get used to the way a TINY amount of reflux feels since it used to be so bad and that I could still have small amounts that are further irritating my airways.  And that I may still have nighttime reflux when I lay flat that doesn’t awaken me.  For this reason I have to now take antacid medication twice daily along with maalox 30 min before bedtime and not eat for 30 min before bed.  Also NO carbonation or caffeine.  (What the heck kind of way is that to live?????)

Then we talked about my actual lungs and how I’m not feeling any better since starting the advair and albuterol inhalers.  I had a nastly cold recently that ended several weeks ago but yet my lungs are still quite congested.  This is not usual for me.  He listened to them and said they still sound quite junky.  He said this was concerning as I should be better by now with both the congestion and how I’m feeling with what he put me on.  So off I go for a chest xray and some bloodwork.  I’ll find out about those on Friday.

All in all it was a great appointment.

Photostory Friday–I have asthma

I have asthma

 

Here is my photostory Friday:  I have asthma.  I probably have had it since I was a teenager and started with chronic sinus infections or longer possibly since I had recurrent ear trouble as a kid.  Either way I’m finally at 32 admitting to it.  Not sure why I needed to be in denial so long.  I just didn’t want to be asthmatic.  2 of my 3 children are but I didn’t want to be.  Why? you may ask?  Again, I’m not sure!  I see asthmatics as a nurse all the time and just didn’t want to be one.  But this great pulmonologist that I work with finally convinced me that a) not only am I but b) it’s ok to be and c) he would help me.  So, here I am.  Those are my inhalers and I’m feeling better!! 

So, happy photostory Friday.
 

Hosted by Cecily and MamaGeek

 

 

Go and visit Cecily’s blog or Mama Geek’s blog for more photostory Friday posts.  And thanks for visiting mine! 

Quick biopsy update and new plans

Just had my 1 month follow from the LEEP and I am currently cervical dysplasia free!!  Yipee!  Next pap smear in 6 months.

At this appointment we also talked more seriously (we have been talking about it before now but the cervical stuff took precidence) about my iron deficiency and it’s symptoms etc (see this post) and how difficult life has gotten since having it.  So the planning has started for me to have a uterine cryoablation done.  I am one of those people who bleed very heavily every month so no matter how much iron I eat or take I just don’t make it up.  I’m in the middle of my 3 months of perscription therapy but not feeling any better yet.  The way this has to be planned I won’t be able to have it done until my 3 months of iron is done and my levels are rechecked anyway but he is confident that I won’t be any higher.  He feels this is my best option to a)get better and b) prevent it from happening again.

I’ll update more as it gets closer.

Not Me Monday

                        

This past week I:

 

Didn’t accept an offer to have a friend at work be my personal trainer and then only take the stairs, as per his suggestion to get into better shape, when he was there and I knew I may run into him and take the elevators when he wasn’t.  Not me, I would always listen to such advice and follow it to a T.

 

I didn’t deny to a pulmonolgist (lung doctor) that was trying to help me that I may have asthma.  He was only trying to help me to feel better and stop coughing all the time which I have done for years.  I didn’t stand there and state that I DO NOT HAVE ASTHMA AND THAT IS ALL THERE IS TO IT to him.  Not me, I would always listen to what the doctor says and make an appointment with him just as he suggests.

 

I didn’t borrow a piece of equipment from a friend and not return it yet.  Not me, I always return things as soon as I am done with them.

 

And I didn’t get to my nap late today (work nights) so that I could get this up on my blog since I didn’t participate last week.  Not me, I always get enough sleep because I know taking care of myself is very important.

 

For more Not Me Monday posts visit McMama’s blog.

Blog award

  I was given this award by my dear blog friend Kirsten and I thank her immensely.  When blogging first started I wondered why anyone would want to read about anyone else’s life and thought it was the  stupidest thing I had ever heard of.  But now that I am blogging myself I understand it and I have found such a support system of blogging friends out there and don’t know where I’d be emotionally without them.  I would give the award back to her as I think she deserves it too for blogging about life as a woman with a neo-bladder but someone already did so I’ll pass it on to 5 others who deserve it too.

First is to my dear friend Carla aka Mastomama.  She and her two children live daily with a disease called mastocytosis.  I will not try and tell you what that is as I couldn’t do nearly the job she does.  Though I have learned so much about it from her.  She is also the one who helped me really find our Lord when I thought I knew him….thanks Carla!

Second is to Pete Wilson at Without Wax.  He preaches weekly in Nashville, TN and yet is not afraid to keep it real.  He constantly inspires me to be a better Christian in profiling his life as a man of Christ. a husband and a father.  To get a taste of what I mean read his post  Let me go first today.

Third is to Braden at 10 out of 20.  He’s a fairly new ER nurse and is still learning the ropes (though I think he’s learned them pretty well by now!!)  He cares about his patients, shows empathy and makes me laugh.  He shows me that I’m not the only one who feels the way I do about patients sometimes and that that is ok.

Forth is to Brandi at Brandi & boys.  She is actually Pete’s wife.  I don’t get to read her blog as often as I’d like to as I just run out of time.  But when I do I leave filled with joy.  She and Pete are such a great couple and are such great parents.  Her entries just put the biggest smile on my face.  I should really make more time for her.

And the fifth and last is to Angie at Bring the Rain.  She has been through so much in her life and yet she reaches out to touch so many.  I cried my eyes out the first time I read her blog & her whole story.  Oh and Angie…….I’m totally jealous that you know Brandi and Pete!!!  :)

My first 26 things project

This is one of my 101 in 1001 list things to do.  It is a photography project for sh1ft.org where they give you 26 things to photograph and then you submit it back to their site.  Here is my submission:

 

Neighbor

Unfamiliar

 

Mess

Information

 

Change

   

everything

Company

Twin

Warning

Odd

Decadent

In the distance

crowded

 

eyes

 

 

Green

Entrance

Cross

Sunset

Leftovers

Different

big things

frozen (fresh frozen plasma)

line up

tube

 

bed

 

 

in season

Wordless Thursday

 

What happens when 3 year old twins are left alone for 5 minutes

LEEP procedure

The biopsy results came back (see this post) and I have CIN 2.  This bought me a LEEP procedure.   It wasn’t  much different from my prospective than the colposcopy really.  Except that the cervical numbing  agent came in the form of a shot in the cervix instead of a spray…..OUCH!!!

The whole thing was pretty funny actually.  My doctor has a pretty dry sense of humor and usually also just tells it like it is.  For this reason we haven’t always gotten along so well.  In the past, he’s pissed me off more than once and now that I’m done having kids I had actually left him to have my primary (who is also women’s health) just do all my annual girlie stuff.  Let me tell you how much ribbing I’ve gotten for that!!  But lately we are getting along quite well.  We have finally come into a place where our personalities are meshing well.

So, here I am on the table for the second time this month awaiting a somewhat unpleasant procedure that could have potentially bad news.  This time anticipating a shot in the cervix so a bit more nervous.  He and I are chatting a little as he is preparing things and then the nurse and I start talking.  I can’t even remember what she and I are talking about just that I am paying particular attention to her.  All the sudden I get this HUGE pinch down there!!  I whip my head around to him and say “what the f? Could you have at least warned me?”  He starts laughing and says “well I figued you were so attentitive to your conversation you wouldn’t even notice.”  As he’s saying that he sticks me again!!!  I yell at him again and ask if that’s all the pain he’s gonna cause me and he says yes but that at anytime I should start feeling tachycardic (my heart would start racing).  It had about 10 seconds before he said it.  So I roll my eyes I tell him that he’s killing me!!  He just laughs.

Then I’m all numb and it’s time for him to do the actual LEEP procedure.  It uses this tiny knife with a loop at the end. Then they pass electric current thru it to cut out the abnormal areas.  They try and get all the abnormal areas out so that your are free of precancerous tissue.  It’s then sent to the lab to be analyzed to make sure they got it all.

Well this is my time for payback!!  I’m totally numb down there but he doesn’t need to know that!!!  Tee hee hee.  He goes in with the knife and starts cutting.   As soon as he does I yell “Ouch”!!  He jumps back and says “What happened” and I innocently say “nothing I’m fine but I got you didn’t I”!!!  The nurse about fell on the floor laughing.  She could barely contain herself.  Neither could I!  He didn’t think it was quite so funny since it was at his expense!  But I then said now we are even for not warning me about the shot.  He agreed and we moved on with the nurse and I still chuckling!!

He cut out my two areas (though made sure to show me that there were 3 pieces of tissue in the jar instead of 2 because of my little joke at which point I laughed again!!) and results should be in in a week.  Though I probably won’t get them until my next appointment in a month when I see him again to make sure all is healing well up there.