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

 

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!!!  :)

A lot has happened and a new title

I have been away from here for awhile.  Been sick again.  Feel like I’ve been sick for about 6 months now.  And really I have.  I’m going to go back and fill in some entries in between this one and the last on about the trip to the ER and them rulling out meningitis so please come back and check in if you are interested.

You’ll see that I changed the title from My Chaotic Life to Coming Up to Breathe.  Not that life isn’t chaotic anymore….it is.  But I’ve been listening to Mercy Me a lot and my favorite song by them currently is Bring the Rain.  But that is taken for a blog so the next best I could come up with is Coming Up to Breathe.  And I really feel like I’m doing that and have been doing that all along since I started this blog.  It just seems a bit more appropriate for me.  My life is full of rain and sucking wind but I do keep coming up to breathe.  I have tons of positives too and that’s most of what helps me to keep coming up!!

I miss my bloggy friends so I’m going to do my best to get back here and keep this more up to date from here on.  I’ll even try and get a post on that updates my 101 in 1001 list.  Till then….may the Lord’s peace be with you.

Neurologist appointment update

I don’t think I ever updated about my most recent appointment with my neuro.  It was on Sept 30.  I had a sick kiddo at home and almost forgot the appt!!  Luckily I had programmed it into my phone for an hour before to alarm or I would have been a no show!!

Anyway, we went over all my results and he is pretty adamant that I don’t have MG.  They have all said that negative antibodies, negative RNS/EMG/SFEMG = a 95% chance that you don’t have MG.  

He was willing to go along with it being some kind of “viral syndrome” like the other docs have said.  They just love to blame things they don’t know on a virus.  Grrr!  I’d love for it to be that too but really I just want to feel better.

About how I’m feeling:  I was starting to feel better and I’m still better than I was at my most low with this but I’m not myself at all.  I’m still wanting to sleep as much as possible, I’ve had to wear my glasses the past few nights I’ve been working to shave off the double vision and the muscle weakness is still there just not as bad.  I get worn out so easily.  At least at this point it’s not so bad that I cannot do things with my kids like before so I guess I can live with it where it is.  It just would be nice to feel like myself again.  The SOB is also better but still there.  The inhalers the pulm gave me aren’t doing anything positive.  I used the rescue inhaler the other day when I was SOB and it helped a tad but then for the next 4 hours I felt horrible.  Jittery and anxious.  

I’m taking comfort in my Lord, who I know has me on this path for a reason.  I just wish He would show me why soon.  I got an email the other day with Saint Theresa’s prayer on it and it gives me comfort in this trying time.  This is it:  

Saint Theresa’s Prayer 

May today there be peace within. 

May you trust God that you are exactly where you 

are meant to be. 

May you not forget the infinite 

possibilities that are born of faith. 

May you use those gifts that you have received, 

and pass on the love that has been given to you. 

May you be content knowing you are a child of God.   

Let this presence settle into your bones, 

and allow your soul the freedom to sing, 

dance, praise and love. 

It is there for each and every one of us.

Results are in

The latest battery of testing is done and I have results:  

The single fiber EMG was completely normal.  According to the neurophysiologist that did it this definatively rules out MG along with the fact that my blood work for MG was normal and so was my regular EMG.  He had no other suggestions for what this could be either.  The only things he did have to say that was good was that a lot of “really bad things” have been ruled out so this should reassure me.  And that in his 20+ years of doing this he has seen quite few people come in with similar symptoms and have a totally negative work up like me.  And then one day the symptoms disappear as mysteriously as they appeared and they never do find out what it was.  

The CT scan of my chest thankfully showed that I have normal lung anatomy: no tumors, abnormal fluid, or inflammation, etc.  Wonderful, wonderful news!!  The only abnormality on the scan was that my thymus glad is larger than it should be.  This is a common finding in autoimmune disorders.  So, it may be related to my Grave’s or it may be related to all this that is going on.  My Grave’s is in remission so not sure if my thymus should still be enlarged from it or not.  Will have to ask my endocrinologist.

For now I’M DONE!!!!  No more tests.  I’ll just live with this for a little while longer and see what happens.  Maybe I’ll be one of those that it just mysteriously disappears for too.  I do see the pulm on Sept 26 and neuro on Sept 30 so I’ll ask them what they think and then go from there I guess.

Oh and not sure if I ever posted about my brain MRI but it was normal too.  So no MS!!!  Whoo hoo!

It’s all just so frustrating in the end.  I just want to know what’s wrong with me.  I can live with whatever it is but the not knowing is torture.  I was driving the other day on my way to the SFEMG listening to Alicia Keys and this short song came on and I about lost it as it so nicely describes where I am sometimes now.  It’s titled Prelude to a Kiss and here are the words:

Sometimes I feel like I don’t belong anywhere.

And it’s gonna take so long for me to get somewhere.

Sometimes I feel so heavy hearted but I can’t explain.

Because I’m so guarded

But that’s a lonely road to travel and a heavy load to bear.

And it’s a long long way to heaven but I gotta get there.

Can you send an angel?  Can you send me an angel to guide me?

Now don’t get me wrong….I’m nowhere near ready for heaven!!!  But I could use the angel’s guidance at this point!

A sign sent

After reading some of the heavy topics on Without Wax, a blog I read daily, I knew I needed to go and visit the “God store” as I call it.  It is really just Cornerstone Bookstore, a Christian bookstore.  I was feeling the call to learn to be better at prayer so off I went to get a book on how to be better at it.  

In a previous post I had talked about God sending signs and about how I thought that was silly before I really gave my life over to Him.  Then once I did hand my life over, I really saw what people meant and really started noticing the signs He does send me.  Today He sent me another one.  

I had gone to the store just to get a book on praying like I had said but then went over to the section on topic prayer books.  Not intending to buy one (figuring why overwhelm myself with too much at one) I was just thumbing through one.  It is titled the Jesus Person Pocket Promise Book.  It is broken into 3 sections on God’s promises:  1. for your spiritual needs, 2. for your personal needs, and 3. for your future needs.  I didn’t really look too much at the chapters but was really just flipping through it and it opened to the page titled Is sickness a problem?  and gives 17 verses where God talks about being sick in the Bible.  The key verse says: The prayer of faith shall save the sick, and the Lord shall raise him up.  James 5:15

But the one that really affected me was:   Each time he said, “No. But I am with you; that is all you need. My power shows up best in weak people.”  Now I am glad to boast about how weak I am; I am glad to be a living demonstration of Christ’s power, instead of showing off my own power and abilities.  II Corinthians 12:9 

Wow. How powerful is it that I turned right to that page?  I bought that book too figuring I’d read it more when I got home.  When I did get home I tried to find that page again by looking in the table of contents.   I couldn’t find it.  So, I start flipping pages and I immediately open the book to it again!

Having just given this journey of sickness up to Him it was pretty neat to have been given this sign from Him.  Obviously it was the right thing to do.  I keep saying that He has me on this path for a reason and I still know He does.  I still don’t know what that reason is but there is one there.

Blessings and Peace

Without wax and feeling some peace…finally

I wanted to introduce those that read my blog to my newest friend that I have met on the blogosphere.  His name is Pete Wilson and he’s the pastor at Cross Point Church in Nashville.  I’ve been following his blog for some time now and I wanted to introduce it to others.  It has quickly become a daily required read for me.  

The thing I like a lot about Pete and his blog titled Without Wax is that it really makes me think.  He asks a question daily at the end of his posts.  And he gets TONS of comments.  I’m lucky to get a few here and there but he gets anywhere from 30-90 a day!!!  And reading the comments is as fun as reading his posts as his commenters make you think too.  

I think my favorite part though is that Pete is quite down to earth.  Even though he is a pastor and is in charge of this huge church and of spreading His word at the same time Pete never hides the fact that he is a human just like the rest of us with human struggles and human sufferings.  He even asks for advice on how to get through his own hard times.  And with as huge as his church and blog community are he takes the time to make personal connections that are always well appreciated.

Go and check him out.  You can find him here.

On a more personal note…..I had my brain MRI yesterday.  It is to rule out multiple sclerosis (MS).  Have no idea how it went.  I do know it took longer than they said it would but you can read anything into that.  I should hear something next week.  

While in that loud clanking and banging machine I didn’t have much to do though so I had a nice conversation with God Himself.  And I gave all this up to Him.  This dreadful illness whatever it may be, and all the symptoms that go with it.  I told Him that He gave it to me and I knew that only He could either take it away or lead the doctors down the right path of discovery.  

I wish I could say that when I got up I had no further symptoms but, of course, that wasn’t the case!!  However, I can say that I’m finally feeling more at peace with things.  All the symptoms are the same but I’m at least less frustrated that they cannot come up with an answer yet.  I know that in time they will.  God has me on this path for His reasons and I’m going to try my hardest to no longer question them.  Not to say that I won’t have my moments of frustration but I’m trying at least!!!

Mystery diagnosis

I feel like I’m living in an episode of mystery diagnosis.  You know, that show on the discovery health channel?  My life is really beginning to resemble it in a big way.

I had my appt with my neuro yesterday.  He is great.  He had lots of good info but no real answers unfortunately.  He says with negative acetycholine antibodies and negative anti MUSK antibodies along with a negative EMG the likelihood of me having myasthenia gravis is pretty low.  I could still have it but it’s becoming more unlikely with each test.  I am to still go for the single fiber EMG in Sept though, if for no other reason than to met with that doctor and get his prospective. 

He asked what my biggest complaints were and I answered the shortness of breath and the muscle weakness that is so bad that I cannot do certain things anymore.  I can live with the double vision and swallowing difficulty and droopy eyelid but the other two are quite debilitating at times.  I mean I was SOB just walking from his waiting room to his exam room!!

He wants me to meet with a lung doctor (which I was already in the process of setting up) and aggressively pursue that avenue.  We had been looking at this as a primary muscle disorder that where the weakened muscles were causing the SOB.  But his theory is that this could be a primary lung issues that is causing me to chronically be low on available oxygen throughout my body which would make my large muscles weak.  It makes sense and is entirely plausible.  Heck, at this point anything is plausible!!!

We are also going to do an MRI of my brain to rule out MS.  He doesn’t think it could be this but just in case we will do that.  He also said that there is NO WAY this is ALS.  I was being asked if it could be that and he reassured me that it is not and that if it was it would have been found on the EMG.  Hopefully he’s right about that one.

I’m not sure what God is testing me for on all this and I’ll admit that my faith is really being tested at this point.  My usually upbeat spirit is wavering.  I’m doing my best but this is all getting so frustrating.  I know this journey He is putting me on is for a reason.  I’m so trying to keep the faith.  I just wish He’d ease the burden somewhat though.  An answer and/or effective treatment would be enough at this point.  Please Lord…………………………

My babies are 3 today!!!

My twins are 3 today!!  I still call them my babies though it’s probably time to start dropping that line huh!!

I can hardly believe they are 3.  It seems like yesterday that I was being wheeled into my room after my c-section and seeing my hubby holding them and reality that I actually had TWO babies to take home setting in.  And then it seems like the day before that I was getting my older one out of bed and some voice inside my head told me to do a pregnancy test that morning even though we had been unsuccessfully trying for about 9 months at that point and I had all but given up on getting pregnant on my own again.

My life is so blessed.  I have a wonderful hubby and 3 wonderful children.  I only wanted 2 children.  You know, the whole I have 2 hands for 2 kids etc line…….  But then God blessed me with an extra and though it gets hectic at times (well most of the time!!!) I wouldn’t change it for the world. 

We are having a big BBQ for the 3 of them today as Benjamin’s b-day is this coming Wednesday.  Quite the busy week for us!

Here are some pics down memory lane………..

Now:

Jen at birth:

Sam at birth: