Tuesday, June 19, 2012

I'm off and running!

Thank you for all of your prayers and offers of help.  I am home and feeling really good. The cardiologist said I had a 90% blockage in my left anterior descending artery.  I now have a stent and should feel like I have a lot of energy.  I'm so thankful for a good doctor that followed her instinct and thankful for a mighty God that made a way for me when I really had no idea that there was a problem.

AJ continues to do well.  There are no signs of infection and his wound site continues to fill in.  Please keep praying that it heals up completely.

Psalm 100:3-5

Know that the Lord, he is God!
It is he who made us, and we are his;
we are his people, and the sheep of his pasture.

Enter his gates with thanksgiving,
and his courts with praise!
Give thanks to him; bless his name!

For the Lord is good;
his steadfast love endures forever,
and his faithfulness to all generations.


Sunday, June 17, 2012

Happy Father's Day Scott

My camera crashed on me so I lost the other pictures but  
we enjoyed worshiping together at church 
and then had a picnic in the rain (under a nice shelter)

We have set this day aside to honor you, Scott.  
You can rejoice in the godliness of your children

Proverbs 23:24

The father of a godly child is very happy.  
Anyone who has a wise child is glad.

Friday, June 15, 2012

Worthy of mention

I don't usually post about my own health issues on my blog but today I will make an exception.  For much of the past six months I have been very tired and often sick to my stomach. When I exerted myself I would experience nausea and have pain in my lower left shoulder blade.  I have fibromyalgia and that seemed to be the easy reason.  My doctor works very hard at covering every possible angle and last week she mentioned that women often experience heart problems in a very different manner then men.  She asked if I would be willing to under go testing.  I agreed and that led to a failed stress test.  That in turn led to a CT angiography that showed a 80% blockage of a main artery in my heart.  The cardiologist was very surprised as he said he had never seen a heart problem present this way.  Long story short; on Monday I am scheduled for a coronary artery angioplasty.  It is expected that I will have a stent placed and go home on Tuesday.

Life is always an adventure isn't it!  I'm so glad we never have to go it alone.  God is always with us and he holds the future in his hands.  I appreciate your prayers for a successful procedure on Monday and that AJ's abdomen will continue to heal and stay free of infection.  What I really don't want is both of us hospitalized at the same time.

God is good; All the time.


Thursday, June 14, 2012

One week and no infection

Today marks one week from AJ's surgery.  So far no infection and I am so thankful.  The doctor said that for a healthy child the open wound would take a week to heal up.  We are not sure what that means for AJ.  Today his wound does not visually look as deep but it still needs to be packed.  I also don't know what it will look like when the wound is filled because I am not sure how the skin will grow over it.  It's a wait and see.  We have plans to attend Bible camp in a few more weeks and I am hoping that AJ's wound will be closed. It will allow him to swim in a little pool and stay cool while we are outside.

We had some really good news.  AJ will be getting a cooling vest.  You can look at the vest here:  Cooling Vest.  It will allow AJ to be outside more in the summer time heat.  When the temperature is over 76 degrees, he blisters, his skin acts like wet tissue paper and he is pretty uncomfortable.  The cooling vest hold a temperature of 59 degrees for about 2 1/2 hours.  We will have an extra set of cooling packs so that it will last even longer.  AJ's dermotologist prescribed the cooling vest but his insurance rejected the request and denied our appeal.  Thankfully we were able to order the vest through the Butterfly Fund.  They are a non- profit organization that is set up to assist children and families that live with EB.  What a great organization and we are so blessed to be helped by them.  If anyone is looking for a way to assist those with EB, this would be a great place to start. Just click on the link above.  As soon as AJ's receives the vest, we will take some pictures and show it to you.

We have really appreciated your prayers and we rejoice in God's goodness to AJ.  We are praying that his wound will continue to heal without any problems.

Psalm 17:6-8

I call upon you, for you will answer me, O God;
incline your ear to me; hear my words.
Wondrously show your steadfast love,
O Savior of those who seek refuge 
from their adversaries at your right hand.
Keep me as the apple of your eye;
hide me in the shadow of your wings.

Our hope is not in AJ's health, a cure for EB, or in the satisfaction that is sought for in this life.  Rather we can say;

Psalm 17:14-15

O Lord, from men of the world whose portion is in this life.  
You fill their womb with treasure;
they are satisfied with children, 
and they leave their abundance to their infants.  
As for me, I shall behold your face in righteousness;
 when I awake, I shall be satisfied with your likeness.  

Our hope is in God and we daily find our satisfaction in Him.


Sunday, June 10, 2012

Days of Recovery

AJ is in the slow process of recovery.  He is pretty uncomfortable and watching lots of movies to pass the time. His new g-tube is right near his waist so bending at the waist is pretty uncomfortable for him. He looks like a little hunchback, bent over as he walks.  He doesn't get up much unless he needs to use the bathroom.  This afternoon he fell asleep but was tossing around in pain.  Suddenly he called out in his sleep, "I need Jackie".  Jackie is his service dog in training.  We took note that he didn't cry for Mom or Dad but Jackie; that's ok though.  It's one of the reasons why we got Jackie; she provides a lot of pain relief for him.  AJ has a pretty large hole in his abdomen from the last tube.  We have to take out the old packing gauze and replace it twice a day. AJ has done really well with it but it does turn my stomach a bit.  I can handle difficult wounds but this is a pretty deep crater.

Before AJ's surgery, Aaron and his wife Emily spent a week with us.  We all really enjoyed it.  AJ must have asked Emily, hundreds of times, to play with him.  She was a good sport.

Here are some new pictures but taken before his surgery. The pictures make me realize how much I'm looking forward to seeing AJ up and around again.

AJ and his cousin

AJ and Emily playing doctor

Dr AJ getting ready for surgery

Aaron and Emily with AJ and the girls

AJ Cooking with his dog, Jackie

AJ loves technology.  Here he is watching Aaron play a game.

Katie and AJ heading home after swimming.

Thanks again for your prayers.  We are praying that AJ's pain lessens and that his old and new tube site heal up completely.

Barbara and AJ

Friday, June 8, 2012


We are home.  AJ really improved once we arrived home.  At the hospital he cried if we even tried to even sit him up.  Here at home he is moving much better.

It's late, I'm tired so I will update later but I wanted you to know that we are home.

Barbara and AJ

Thursday, June 7, 2012

Lots of good news

So exciting to have good news tonight.

AJ's g-tube surgery went very well.  He is in a lot of pain but handling it well.  Sometimes a bit too well.  He refuses pain medication but we have over ruled him a few times.

We start feeds in two hours and if he does well we "might" go home tomorrow!

Big news.  They have a new procedure for G tubes.  They don't put mickey's in anymore but use an AMT.  The AMT is great and I am so happy to have switched.  It is a much better design than the mickey and won't pull out as easily.  The goal is to keep this tube from coming out for six weeks.  Because it is apple shaped (flat on top) it will not pull out neatly like a regular mickey balloon.  It's much more stable and it is smaller than a mickey.

Bigger news.  With their new G-tube procedure they don't use any internal stitches that could abscess.  There are only two stitches holding the AMT in place.  Tomorrow those two stitches will be removed and it is only the AMT holding the stomach up to the abdominal wall.  It makes me a bit nervous but it means AJ's primary source of infection is gone.

AJ has an open wound where the old g-tube went through his abdominal wall.  We will keep it packed and draining and it will hopefully close up in a week or two.

Thank you for all of your prayers.  The outcome looks great and it won't be long that AJ will be up and around, bubbly as ever.

Gotta Go as AJ is calling.  We are blessed,

Barbara and AJ

Wednesday, June 6, 2012

Surgery tomorrow

Sorry for the long delay.  AJ is doing well but I wanted you to know about his scheduled surgery for tomorrow.
He will have a gtube revision as his stomach lining is retracting through the current opening.  They will open a new site and the old opening will have to be left open until it heals as it would get infected if they close it.  AJ's history shows that he does not tolerate sutures that are meant to dissolve. Instead they become infected fistulas; usually with MRSA. There are no other options to hold his stomach to his muscle wall so we have planned on a long recovery with the expectation of multiple infections.

Thank you for your prayers.  God is so faithful to us and has provided great physicians to meet his physical needs.  AJ is looking forward to a reduction in his pain.  He is especially excited to watch hours of TV; me, not so much.

God is good; all the time,

Barbara and AJ