Saturday, October 27, 2012


We are home!  AJ was discharged late Thursday.  He had a hard time adjusting at first but is now pretty happy to be back in his own space.  Thanks to those that brought him surprises.  He was especially excited to see his siblings, Katie and Andy, as they drove down from the cities for a visit.

Last night he started talking more.  He doesn't want to open his mouth often because he lost the skin off of his lips during the procedure.  They keep trying to heal shut so we put lots of Vaseline on them.  I know they hurt when he pulls them apart but he has to keep doing it.  He brought me his pain scale picture and showed me that his pain level had come down significantly.  He had a big smile on his face.  We are still giving pain medication every four hours and he is on an antibiotic.

I am so thankful that he is this far past the actual surgery. Please keep praying that his oral tissues heal without any strictures.  We won't know for a while if he will have any problems with this.  He has started to eat a few things that are very soft and in very small amounts.  This is a time to be especially thankful for his gtube as it allows us to keep him well fed and hydrated.  He can get all of his pain medication without having to force him to swallow anything.  

Thanks again.  Your support is so appreciated.

We give thanks to God always for all of you, constantly mentioning you in our prayers, remembering before our God and Father you work of faith and labor of love and steadfastness of hope in our Lord Jesus Christ.

I Thessalonians 1:2,3 (ESV)

Barbara and AJ

Thursday, October 25, 2012

Star War Legos

The weather is dreary and I read in the news that it may change to snow and 20 degree wind chills.  Ugh.  What a nice morning it is; inside that is.  AJ is talking and feeling better.  We even got a smile.

Last evening Scott came to visit and AJ showed him a little card that said he wanted to play.  (Prior to surgery, we had made up cards with pictures so that he could tell us what he needed/wanted)  Problem was we could not figure out what he wanted to play with.  We guessed and guessed until it looked like a game of charades.  Finally, out of exasperation, AJ spoke.  I did not expect this on his day of surgery.  We had a terrible time making it out and he had to repeat it multiple times.  "Star War Legos, he blurted out!"  We did not expect that request and we didn't have any for him.  I had forgotten that the last time he was in the hospital Scott had surprised him with a small little star wars lego set.  Apparently he had not forgotten and was expecting it again.  The hospital searched for legos and eventually found some but no star wars lego people.  Oh well, it was so good to hear him talk.

AJ's bleeding has completely stopped and the resident doctor thinks we will go home today.  We need his ENT to see him before we can actually leave and that usually means much later in the day.  We are happy for the good news.  His doctor said we will not know, for up to three months, if he avoids the more serious complication of nasopharyngeal stenosis (I'm not even going to bother to explain unless it becomes something we later deal with).  We will take it a day at a time and keep trusting God for the grace he provides new each day.

Thanks so much for praying for AJ and a special thanks to all those that offered to help with the important details of our other family members.

It is a good day!

Sing and make music from your heart to the Lord, always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ.
Ephesians 5-19-20

Barbara and AJ

Wednesday, October 24, 2012

Out of surgery

AJ is out of surgery.  His airway looked good in the scope.  He did have some extra bleeding but she said he had a lot of blood blisters in his mouth and throat before starting the procedure.  We are in the PICU and they will watch to make sure he does not have an airway problem.  He is miserable.  I just want the next 48 hours to fly by.

Thanks for your prayers.


In Surgery

AJ is in surgery now.  I am very much at peace about this.  They have finished the bronchoscopy where they check his airway for EB damage and they are starting the tonsils and adenoids.


Wednesday, October 17, 2012

Surgery Next Week

Hello Everyone,
Sorry for the absence but we have just been enjoying each day with AJ healthy.  It has been a good month with many fun days.  AJ has been free from infection, his gtube site looks great and he is happy.  His feet are pretty sore and he has resorted to wearing large socks instead of shoes but if that makes him comfortable we are fine with it.

Today we met with the ENT doctor.  We love her.  She takes such good care of AJ and she has experience with kids with EB.  After talking with her we have decided to have AJ's tonsils removed.  They are very large and are causing sleep apnea.  Having a small airway to begin with, the tonsils only make breathing more difficult. He has had strep throat and infections that have attacked his skin and caused permanent wounds.  We would likely prevent this from happening again. Having this surgery now will be easier on him than waiting until he is older.

Ok, now you hear what I keep telling myself as to why we have made this decision.  I know we need to do this but I don't want to put AJ through it.  It's very hard and I am dragging myself to this point.  I am praying for a smooth procedure but his doctor has clearly laid out the risks.  Because AJ's body scars so easily and openings want to close (think esophagus, airway, intestines, urethra  etc) his throat closing shut is a major risk.  His ENT said it is the worst problem that could be faced.  When there are raw areas the tendency is for them to adhere together.  She said it would be three months post surgery before we will be assured that the risk has passed.  If the area should scar together, AJ would require a tracheotomy.  That is hard.  We have been to that point before and AJ pulled through.  I don't like that looming over us again.  I know I can handle the cares for a trach but I know how hard it would be on AJ's tender heart and emotions. So...we will lay it at God's feet where it belongs.

As a secondary procedure she may take AJ's adenoids out but she will determine the risk of doing so once she has removed the tonsils.  She will also do an endoscopy of his airway to determine any damage due to his EB.

Next Wednesday, October 24th is the surgery date.  He will stay in the pediatric intensive care unit after the procedure.  I don't know how long he will be in the hospital.  I am hoping for no more than three days but I know to be prepared for more. We so covet your prayers.  I know God is present and working in AJ's life.  I can trust God with his plans for AJ.

On a different note, I am struggling with where to have my other children stay while I am gone.  I have three "almost" teen girls that I home school and I need to find a place for them to go or someone to come to my home.  Please pray that it will all work out without too much of an ordeal.

Thank you again for reading our blog and for caring so much for AJ.