Discharge Day

I am happy and AJ is really happy!  We are going home today.  We removed his G-tube last night and left it out for four hours in the hope that it would close up a bit.  It did close some but we are still left with one open area that should not be there.  We have a few more ideas in mind and we will be back to the clinic on Friday to see how it is progressing or should I say digressing?

AJ started an oral antibiotic this morning and so far he has not had any negative side effects.  We hope it will continue to fight the infection.  The IV medication is not available in an oral so we had to switch to a new one.  We are so thankful for the medical advances that God has blessed us with.  Just a few years ago AJ would not have survived the same infection.  God is so good to us.  AJ has continued to feel great through this entire infection.

Last night God allowed me to meet with an old friend.  She needed some encouragement and it was so great to spend time with her.  Please pray for K as God is moving in her life and she is looking for Him.

2 Corinthians 2:14

Thanks be to God, who in Christ always leads us 

in triumphal procession, and through us spreads 

the fragrance of the knowledge of him everywhere.

What a blessing it has been to share the goodness of our God while here in the hospital.  He opened multiple doors to testify of his goodness.

Thanks again for all your prayers along this journey.  We are looking forward to "resting" at home.

Love,

Barbara

 

Staying longer

AJ is responding well to the antibiotics.  So well that we are going to stay another day to keep them running through his IV. The struggle now is what to do about his G-tube site.  It should be one, nice, small hole that the G-tube slides into. Unfortunately, It is more like two holes next to each other. This isn't going to work as his feeds will run out the hole and he will not be able to bathe as the bath water (that is mixed with vinegar, bleach and salt) will run into his stomach.  They are trying to come up with a plan.  AJ is hyper, bored and begging to go home.  I am tired with only 4 1/2 hours sleep last night.  I expect to go home tomorrow if the infection is the only issue - the problem with the site still needs to be addressed.

I made AJ go out for a walk today.  For some reason he was determined not to leave the room.  I took him to the chapel here.  It is beautiful.  I enjoyed the walk and the chance to pray in a beautiful setting.  Now I'm hoping he will nap.

KM is really sad as she is at home with the dog.  She hates to be alone but she is home educated and it helps that she can care for the dog.  I keep telling her it will be over soon.  She struggles the most with me gone.  KJ says they can only make it a short time with me gone.  I laugh - they really get stressed out but Scott still does a good job of taking care of them.  JR has a job now so that will help occupy her extra time.

I'll update again when I know more.  Thanks for your prayers and your messages.

Love,

Barbara and AJ

In The Hospital

We are back at St Mary's Hospital.  AJ is feeling great but the area around his G tube site is swollen, red and very hot - clearly an infection.  He had the same type of infection in 2008 and it was a bit hard to get rid of.  My hope is that we will go home tomorrow.  He is on IV antibiotics and so far the swelling is worse.  AJ feels great.  We are stuck in isolation due to the MRSA infection.  Entertaining a three year old in a hospital bed attached to a short IV line is tough. (Caroline and Raul, I thought of you)

While we were waiting to get admitted, I asked AJ if there was anything I could get him.  I was reading books to him and I thought maybe he wanted another.  Instead he said, I want "gog".  This usually means "dog" and I told him that Jackie can not come to the hospital.  He said no, I want "gog".  So I said, you want God?  He said, Yes, I want God to come and make my tummy better.  It was so sweet.  It must bless God. So we prayed together that God help his tummy heal.

At this point AJ has the hang of the hospital bed.  Head up and down, foot up and down.  It reminds me of those comedies where someone gets closed up in the bed. The nurse promised me the bed will not go that far (she also showed me where the over-ride switch is but that would take away all of his fun).

Tomorrow they might do a CT scan to try to find where the source of the infection is.  Last time it was a fissure that went from his stomach, through the skin, and out.  Eventually everything that went into his stomach leaked out the hole.  Hopefully it will heal before it reaches the point of rupturing.  (sorry if that is a bit gross)

I'll try to update again tomorrow.  Thanks for all of your prayers.  God is good and we are so thankful that AJ is feeling so great.

Love,

Barbara and AJ

EB Awareness Week

This last week of October is officially EB awareness week. Many of our EB friends have posted so many moving posts in their blogs and on Facebook that it leaves me speechless
(enjoy it - it doesn't happen often).

We have so many EB friends, each has their own personal story and they are all important to us.  I really didn't want to pick one story in particular but decided to share Courtney and Tripp's story.

Tripp has a different form of EB than AJ and he has suffered so much in his short life.  Tripp's story can be found Here. Please take the time to check it out and learn more about Epidermolysis Bullosa. After reading their story, you will not only understand EB but you will be compelled to pray for he and his Mom.

Thanks for caring,

Barbara

Welcome Home Jackie

Today was a big day at our house.  Our newest family member joined our household.  AJ's new service dog "in training" arrived today.

 Her name is Jackie!

Our hope is that Jackie will eventually be trained to carry AJ's feeding pump so that he does not have to carry it all the time. Jackie is part Australian Shepard and Catahoula.  Both are breeds that are used for service and rescue animals.  We will be taking classes locally for her training.  She is seven months old and very friendly.

We arrived home tonight to AJ at the front door.  "Where is my doggy (pronounced goggy by him)?"  He was so excited - I think mostly to boss her around.  As soon as she got in the door, AJ says to her (in his most assertive voice), "Here is my pump, Carry It"  We laughed.  We told him a few weeks ago that we were looking for a dog to help carry his pump.  I think AJ will wear out Jackie before she does.  He walks around the house yelling, "wo, who".  Then we hear, "what's her name again?"

Thanks for following us on our journey.  Aj certainly is a happy guy, hopefully he and Jackie will become a great team.

Barbara

School begins!

AJ is back to school.  He started two days ago and seems to really enjoy it. He had gone last year for two half days a week and this year he will go for three half days. He is really tired and a bit out of sorts but I'm sure he will get used to the new schedule.

Here is a picture of AJ's first day of school. He was not happy that I was not going with him.  Once he saw his bus he was all smiles but this was the best I could do for a picture 

I wonder what he is thinking.  

He certainly is not pleased with Mom!

I'm looking forward to catching up on some projects around the house while he is at school.  I should have done something really constructive (like paying bills - ugh) but instead I organized all of his bandage supplies and then I decided to sew.  I really enjoy sewing and I had some really soft fleece left over from another project and there was enough fabric to make a vest for AJ.  It turned out really cute and when AJ got home I showed him the vest and he hated it. He cried when I put it on him and he cried for me to take it off. I told him he could wear it in the winter when the snow falls and he cried some more. He really doesn't like it.  So...I guess I'll hang it in the closet and see how he feels about it on a different day.

Isn't it cute?

On the medical front; AJ had a new G tube put in last week. He needed a smaller one because it was leaking so badly. They didn't have the correct size in stock so we tried a little larger one. It too is not going to work as it continues to leak. Maybe next week the new one will be in.

For those that have been praying for Brian.  He had a tracheotomy done last week and will hopefully be stable enough to return to Florida (they are in the hospital in Ohio) where his Mom and Dad live.  We are also praying for Nicholas's family. He had a bone marrow transplant done to improve his EB but he passed away this past weekend.  He lived with EB for ten years. He leaves behind a Mom and Dad and brother.

We have things to rejoice in and things to be sorrowful over. In all things we want to thank our heavenly father for his goodness towards us.

Psalm 86:5

For you, O Lord, are good and forgiving, 

abounding in steadfast love to all who call upon you.  

Barbara

Summer is over; I can start blogging again!

Hello Everyone,

I've had lots of emails and messages wondering if we are Ok. Yes, we are doing really well; we are adjusting to our new routine and I hope to find the time to blog again.  Summer and blogging just don't seem compatible for me.

AJ had a really great summer.  We were able to camp a lot and we all really enjoyed it.  It was also great to have KJF and AWF home.  Now they are off to college and we miss them but we are happy they are pursuing the gifts that God has given them.

Here are a few of our pictures from the summer:

Playing with friends

Visiting the fair

Eating corn on the cob (actually it should be called, "licking")

1st time riding a pony

Lots of time with family

1st time planking (If you don't know what it is,  take a 

look at AWF planking at the light house in Grand Marias)

Then watch KJF teach AJ (at a lower height)

Success!

Throwing rocks into the lake was a favorite of the summer.

Ready to go to school.  

This picture is actually a bit sad as AJ was really ready to go to school and most of his siblings returned to school in September.  Problem is that AJ's school is not ready to accept the medical advice of his dermatologist; in that he is safe to attend school and that he does not have a contagious disease.  So we wait.  It's been over three weeks and he is still waiting but they have requested another meeting so I consider that a good sign.  We are being patient.  We expect to work with this school district for a long time so it is not going to hurt to wait a bit longer.  Now to help AJ understand the wait.

The great news about AJ's bath lift chair!

My back wasn't doing so great this past summer and it was so hard to lift AJ into and out of the bathtub.  He was not willing to help in anyway - not even stand up.  I think he was too afraid of getting hurt.  Our physical therapist found Aj a motarized lift chair that lowers him into the bath water and then lifts him back out when he was done.  We didn't even have to struggle through the insurance process as it was donated.  What a blessing.  God is good!

Medically it was a pretty good summer for AJ.  He was really healthy and only once went on antibiotics and that was to make sure he did not get strep when his siblings had it.  The year before strep really attacked his skin and he still has damage from it.  We didn't want that to happen.

The end of the summer brought one medical problem that ended up being a blessing in disguise.  We were on our way home from a camping trip and AJ's GJ tube was accidentally 

pulled out.  That is not good because it takes a trip to the hospital and AJ going under anesthesia to replace it.  We decided to try a standard G tube to see if his stomach could handle the feeds.  In the past, every time something went into his stomach he vomited it all up.  That's why he was fed directly to his intestines.  Well,  three and a half weeks later and he is still being fed via his stomach.  This is great.  It's one less procedure for him and one less complication from the EB.  

Thank you for following our journey.  We are thankful for everyday we have with AJ.  We know it is a gift from God.  AJ has a little friend, Brian that is not doing so well and he could use your prayers. 

Brian is the same age as AJ and has the same type of EB as AJ.  His Mom is a real sweetheart and she could use your prayers too.  Brian went into surgery a few weeks ago to have his esophagus dilated and some teeth pulled.  Unknown to the doctors, his hemoglobin was as low as 3.  (Kids with EB often have problems with iron absorption).  Once Brian was put under anesthesia, he went into cardiac arrest as his iron was too low for his heart to keep pumping.  The doctors did CPR for 30 minutes before they got his heart working.  Brian suffered serious brain damage and is in a coma.  He is slowly improving and will have a tracheotomy (a permanent breathing tube) soon. Please pray for his Mom, Carmen and Brian too. 

But this I call to mind, and therefore I have hope;

The steadfast love of the Lord never ceases,

his mercies never come to an end;

they are new every morning; great is your faithfulness.

Lamentations 3:21-23 (English Standard Version)

Blessings,

Barbara