Aliens or Angels

We are home.  AJ is happy but tired.  

Today at the hospital, the operating rooms were super busy as they had a large number of serious trauma patients.  AJ's doctor finally decided to use a procedure room in the pediatric intensive care unit.  They would not be able to use gas to put him to sleep but instead would use conscious sedation.  The medication would take care of the pain, cause AJ to be very relaxed and would also leave him with no memory of the event as it causes amnesia.  They took him in and tried to get an IV and were unsuccessful.  Then they used a medication to relax him and followed up with two injections to really knock him out.  The doctor said it may cause hallucinations.  We waited...waited and AJ just kept looking at us.  So they doubled all of the meds.  Then AJ began staring at me with huge eyes and kept repeating over and over, "Mama?  Mama?  He must have said my name a hundred times.  When they did the procedure to open his stoma he screamed in terrible pain and shouted at the doctors to leave him alone and that he wanted to go home.  Poor guy.  When it was over he continued to look at me, repeating, "Mama?  Mama?  Then he fell asleep.

I was so thankful that he would not remember it.  When he woke up he asked where we were and why.  I told him that he had to have his g-tube replaced and that we were in the hospital.  He was good with that and was even more excited when he heard we were going home.

On the way home AJ asked where I was when he told the doctors to leave him alone and that he wanted to go home. (Clearly he remembered some of this)  I told him I stayed with him the entire time.  He said, "No, I didn't see you but I saw an alien and it had five eyes and two mouths"  He said he watched the doctors working on his tube and it hurt really bad.  The Alien stayed the whole time watching him.  AJ thought that was pretty cool because the Alien looked like me.  He had an alien for a Mom!

Now you have to realize that some kids see angels when they are sick.  Maybe they are real sometimes and maybe other times they are hallucinations.  AJ loves aliens.  An angel would not have been a big deal.  So...God is good all the time...either he made me into an Alien creature just long enough to get AJ through his procedure or he provided some great medications so that AJ could have a great hallucination.  Either way; AJ loved it.  All is good.

Barbara

Peacefully Sleeping

AJ's tube is in place and he is sleeping so peacefully.  It was not an easy procedure and it involved more than double the medication it normally took to sedate him.  It will take him a while to sleep this off.  They want us to stay another night but I am hoping we can go home.

 He kept asking me, "Please Momma, I want to go home"  Soon we will little man, soon we will!

Thanks for praying,

Barbara and AJ

In the hospital

Sorry for the long delay.  We have been very busy in fun ways but right now AJ is in the hospital.  He was having a great time with his sister, Katie, when he fell and pulled out his G-tube.  His tube is very difficult to replace and we could not get it in.  We went to a local hospital in Minneapolis since we were not near our home.  The doctors were unwilling to do anything and they made AJ wait four hours before agreeing to help put his tube back in.  As expected and as I had warned them many times, his tube site had closed.  We are back down at Mayo as he spent the night waiting to go to the OR this morning.  Due to the lack of fluids he is constipated (also not a surprise) and is vomiting (happens with constipation).  Hopefully he will get to the OR soon so that he can get his medication to get his intestines moving.  Patience is the key.  He is watching movies but not feeling well at all.  Thanks for your prayers for AJ.  Hopefully I can update soon with some good news.  AJ is much happier to be back at Mayo and so am I!

EB Conference

We had a wonderful time at the EB conference in Florida and we would like to share with you our adventures.  

Please ignore all the formatting errors in this post.  I am trying to post a lot of pictures and the site doesn't want to work correctly.  It's late and I'm not going to fight it.  

We were able to fly to Orlando, thanks to the fact that airline prices dropped to the point that it was very close to the cost of driving.  AJ loves to fly and loves turbulence even more (me not so much).

The conference was held at the 

Gaylord Palms Convention Center.

We had a very nice room overlooking one of the large interior

 climate controlled areas.

This is the daytime view from our balcony. 

This is the evening view

AJ can show you that they even had live alligators!

The conference went beyond our expectations.  DEBRA had top researchers and medical specialists.  We heard about protein and gene replacement therapies that will soon begin human trials.  They had sessions on EB related surgeries, eye involvement, bone and anemia problems.  We had the opportunity to talk with a Ear, Nose, Throat specialist that recommended that AJ have his tonsils out.  We really didn’t want to have that information, but in the long range picture we understand why it would be a good idea.  We also came home with the much needed information on new bandage technology to help with healing AJ’s wounds that he has had since birth.  Debra provided some of our meals and allowed us time to talk with and encourage other families living with EB.This is Katie at the conference table.  She and Kim were a great help in allowing me to attend the conference while they entertained  AJ.

AJ was able to spend time with other children with EB.  

His first comment that he made when seeing another child in bandages was,

 “Hey, he looks like me!”

The hotel brought in Disney Characters to meet the families.  

Here is AJ and Kim with Shrek and Fiona.

Each night AJ loved to swim in the splash pool.  It started with a Disney splash party with the Madagascar characters.  The pool had a huge media screen and after the party they played a Disney Movie.  AJ loved sitting in the water while watching a movie.  

     

                                                                                           

One of the conference sponsors provided us with an evening trip to Planet Hollywood for dinner.  

After dinner we were treated to, “ La Nouba”  with Cirque du Soleil.  It was an incredible show and a great ending to the conference.

After the conference we took AJ to Disney World to meet Mickey Mouse.  This is something he had been talking about for six months.  What we did not expect was to meet ALL of the Disney Characters.  Shortly after we arrived, the Disney Staff invited AJ to a private, “meet and greet”.  Needless to say, AJ was overwhelmed.  

After the Character meeting AJ went on the rides.  

(Wow did he enjoy them)  

Disney was very kind to AJ.  They shortened his wait for rides so that he did not have to spend a lot of time in the heat.  Between the air conditioned areas and his cooling vest he did very well.  In fact he just kept going and going.  Our last stop at Disney was to say goodbye to Mickey Mouse.

Our next stop was a visit to Rick and Martha’s home.  Their daughter, Emily is married to our son Aaron.  We spent a great day with them.  We visited Tarpoon Springs and we enjoyed some shopping before taking a boat ride into the Gulf of Mexico.  The boat stopped on an island and we went out in search of shells. 

After an evening of swimming, visiting and a good night’s sleep, the time came to say goodbye and head back to Minnesota.  We left Rick and Martha’s home and drove down to Clearwater Beach.  Kim and Katie took a quick walk on the beach while AJ and I visited the pharmacy.  

AJ struggled with extreme car sickness and we went out in search of medication.  It turned out to be a very good decision that we flew to Florida instead of traveling by car.  Especially now that it is apparent that he has a serious skin infection.  I doubt we would have made it home without visiting or staying in a strange hospital.

 Katie wanted to make a quick stop at Chick-fil-A. 
By then AJ was feeling better and he enjoyed some time in the play area.

 Thanks to many of you that donated funds to make our trip possible.  We all enjoyed the conference immensely.  AJ had the opportunity to experience Disney World and thanks to the Glombs we were able to experience another part of Florida.

 

Barbara and AJ  T

Home but sick.

We are back from the EB conference but AJ has another infection. Here is my quick update. No IV Vanco this time. Will try oral and wait for culture. Most likely MRSA again. Swelling around gtube split open skin on abdomen; likely internally also. Switched out to longer tube but damage is done. 


Thanks for your prayers. 


Barbara

Saving the best news for last

It has been a great month.  Sorry it's taken so long to catch up with you but our vacation included a break from blogging (not that I am so great at keeping up).  I have lots of pictures to share but I'm saving the best news for last so make sure you read all the way down.

We spent ten days at Lake Geneva Christian Center family camp.  The kids had a blast and I've never seen AJ enjoy a trip more.  He loved the children's classes and made new friends.  It was great.  The speakers were great and AJ did so well that I was able to leave him in his classroom and actually attend some of the services.

The added bonus was that our son, Sahr, his girlfriend and sweet baby girl (aka..my granddaughter) live in the area and we were able to spend some time with them. 

Grandma and Mara

Our son, Sahr and his beautiful daughter; what a great Daddy!

Katie, Mara and AJ

AJ even thought she was Ok to play with

Katie and Mara; what a blessing

Julia had so much fun with her

She was so comfortable with Andy that she fell asleep 

(probably due to being passed around for everyone to hold but she did so great)

In an earlier post I had promised pictures of AJ in his cooling vest.  Wow the vest helped a lot.  It was really hot and did a great job of keeping AJ cool.  He had very few blisters as a result of the heat and he didn't look sick or exhausted from the time outdoors.  I would highly recommend the vest if you have a child that struggles with heat.  Thanks again to The Butterfly Fund for their gift of the vest to AJ.

We found that the vest worked best if he wore it backwards

 - it didn't rub on his skin or cause blisters.

Our good friends came to visit and stayed a few days with us

  Gabby was our night staff when AJ was a baby. I'm so glad we have been able to stay in contact with them. Unfortunately we didn't get a picture with her little boy - next time. 

AJ fell off of a wagon before we left for camp and tore up his head.There came a point at camp where he really needed to have his head bandaged. He was so embarrassed to have his head in a bandage - he is so used to having his body bandaged but was not happy about his head. Katie came up with the perfect answer - 

We had lots of fun at camp.  

It was sad to say goodbye until next year.

Don't forget I promised you good news at the end of this blog post - the best news yet (no, we are not adopting again for those of you that have a one track mind)

The good news is the gospel that AJ embraced while at camp.  Here is AJ's story, about God's grace in his life while at camp.  We were doing bandages one day and AJ was really afraid of the upcoming pain associated with having his leg wounds exposed.  He kept saying, "I am a scaredy cat!"  I told him that he could ask God to help him with his pain and that God wants to live in his heart and be in charge of his life - he wouldn't be a scaredy cat, alone, anymore - God's power would live in him like a Super Hero and give him strength for everyday and every bandage change.  AJ wanted to know if God was a ghost that would live in him (thank you Scooby Doo).  We talked about God being real and that his spirit could live in him.  We talked about sin, the things we have done wrong, and that the death of Jesus on the cross took away our punishment.  AJ and I prayed together so that he could have forgiveness of sin and be adopted into God's family.  Now when AJ is afraid, I remind him that even if he feels like a scaredy cat; God lives in him and is bigger than any problem or pain that he has.  What a great event and a new beginning for AJ and his personal walk with Jesus.

Thanks for being so patient with my blog posts.  Blessings to each of you today and I pray you too may know the good news of Jesus Christ.  If you have not heard that you can live a new life in Jesus Christ, please ask and I would love to share with you what the Bible teaches about God's love, his death on the cross and what that means for you.  

Barbara and AJ

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.

Barbara