Follow up visit with the Pulmonologist

The advair is finally starting to do it’s job and I’m not in panic mode if I don’t have my albuterol inhaler on my person at all times!!  My cough and lung congestion are much better.  Saw the pulm doc in follow up today and he said that my chest xray looked much better than he thought it would based on the way my lungs sounded at my initial appointment.  Also that my blood work  looked fine so my allergy medication (zyrtec) was doing it’s job well. 

So, for now we follow the course.  He would eventually like me off the advair but thinks that this spring I may have to go up in dosage before going off as the pollen count goes up.  We’ll see I guess.

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!