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Jackson's Heart
jacksonsheart
.:::..:...... .::::
Jessica [userpic]
the next step

Hello,
 
Some of you may already know this news already, now you will be able to know what exactly is going on with Jackson. 
 
A couple weeks ago we were informed that they were not able to do anything for him any more.  Then we had that ray of hope with the trach.  That never took place.  We needed him to get all of that fluid out of him in order for the trach to be possible, which happened last week.  This past weekend he started to retain the fluid again and started to present some other issues which prompted some blood work.  The blood tests revealed some bacteria, which meant he was septic and had some bad blood. 
 
Also about 4 weeks they did some genetic testing on him and we finally were able to get some of these tests back.  Something else to add to the HLHS that he has is a thing called CHARGE syndrome.  Its pretty complicated to explain, but here is something I copied from a website
 
 Children diagnosed with CHARGE most commonly have:
  • Coloboma of the eye (a cleft or keyhole-shaped defect occurring in one or more areas of the eye including the iris, retina, or disc)
  • Heart defect
  • Atresia of the choanae (closure of the passages from the back of the nose to the throat which allow breathing through the nose)
  • Retardation of growth and/or development
  • Genital Hypoplasia (this can include in boys a small penis, undescended testicles, no urethral opening at the end of the penis and in girls in can include a small or absent labia)
  • Ear malformations

The name "CHARGE" comes from the first letter of each of these defects or anomalies. Children with CHARGE may have additional problems.

Jackson has the first two.  He doesn't seem to have any other problems.  The presence of the first two symptoms prompted the DNA testing.  I really don't understand DNA stuff, but they found a trace of the this chromosome meaning he has a variant of this.  They won't be able to know more unless testing is done on one of us.

Yesterday Sara went to visit Jackson.  Dr. Ghanayem (Nancy) said she needed to talk with the both of us.  I left work and we talked with her.  Nancy has been the backbone for us this entire ordeal.  She suggested the trach as the last hope.  She informed us of the CHARGE syndrome and all the other things that have happened with Jackson over the last couple days.  Then she told us that she is never one to give up and that she to now felt that there wasn't anything else that could be done for Jackson right now.  None of his organs are working properly and with him being septic, the antibiotics we would need to give him would damage his kidneys more than they are.  Throw in the CHARGE thing and its not in his favor.

We have decided to make Jackson No CPR.  We don't want any other medicines added nor to we want any of the ones he has to be increased.  We have decided to let things run there course.  Should something change, we will be able to reverse that decision, and as we all have learned with Jackson, if there is a slim chance for anything he likes to find it.  The breathing tube he has is still in place.  If that happens to come out, we will not have it put back in.

We were hoping to bring him home, but that won't be possible.  In order to keep him as comfortable as possible, he needs to stay there.  They plan on moving him to a bit bigger room.

This has been something that Sara and I have talked about already.  You have to have that conversation just to be prepared.  We always knew in the back of our mind we might have to make a decision like this, just not this soon.  Knowing what we knew before he was born, we knew at some point he would need a heart transplant.  We knew we might have to make a decision on his life....again not this soon. 

His road hasn't been easy.  It's been one bump in the road after another.  As unfair as this is to us...really unfair...this is fair to him.  It's hard to constantly see him struggle and although he doesn't show any discomfort, there has to be alot of pain going on inside.

We will continue with the updates the best we can.  We plan on taking a room at the Ronald McDonald House so that one of us will be down there at all times.  Feel free to visit him anytime you can.  I'm going to try to work as much as I can handle. 

Thank you all very much.

Jake and Sara

*I have also included some of my thoughts, and I visited with Jackson tonight.  Please read my blog also.

Current Mood: crushedcrushed
Comments
(Anonymous)
Prayers

I'm sending you TONS AND TONS OF PRAYERS. you're right this is unfair. i'm so sorry hun. if only there was something i can do other than just praying. i'm in tears. may god hold him in his arms and take away all his pains. what a lil fighter Jackson is.

(Anonymous)

I am so sorry to hear this! You are making the best decisions for Jackson though. You are all in my prayers, especially little Jackson.

(Anonymous)
Praying for you

My heart goes out to you both. I have been following your story thru friends on myspace. I am sitting at my computer with tears in my eyes. I had to make this decision in January of 2006, but it was with my dad. He had a DNR and it was hard to stand by and not do all that I could to save him. But he went peacefully in his sleep one night in ICU. And now he Flies with the Angels in Heaven. I will pray that if and when the time comes he will be there to welcome your little one and fly him around and show how beautiful Heaven is. I know it's hard and people will tell you that it gets easier as time goes by, I heard all of the saying. But hang in there God is still the Almighty! and he can make miracles happen! Just have faith and trust him.

Penny
Vicksburg, MS

(Anonymous)
Prayers and Heart Hugs to you all

My heart goes out to you and your family. Im praying for you all everyday, I pray God reaches out and Holds your family close to His heart and gives you peace and comfort. Jackson is loved by many people. Love and Prayers to you all Love, Kim from Williamsburg Ky
www.myspace.com/angel40769 if you ever need a friend to talk to, I'm here for you guys..

(Anonymous)

I agree with you - this just isn't fair. Parents should never be in this position! It must be so hard seeing your little guy struggling everyday. you and Jackson are in my thoughts! I went to see him last night when I was at work. He was wiggling around and holding onto fingers - so cute! Let me know if u need anything. I'll be thinking of you all, and I'm sure I'll be back down to see Jackson again tonight!

Amanda

(Anonymous)

I don't know you guys but I will keep Jackson and all of his family in my prayers. I can not say I know how they feel, but I do know all too well what it is to love your child. I know this has probably been the hardest decision they have made thus far, and I as a parent, give you props for that. I don't know that I would be able to do the same if, God forbid, I was in your situation. I tip my hat off to both Jake and Sara. Keep your head up and always know that you did all that you could and if there was more, you would do it.

Lolita (Houston, TX)

(Anonymous)
Prayers

I will be keeping Jackson in my thoughts and prayers I am praying that since god created this beautiful miracle to begin with that he will send a miracle to help him to stay here with Molly and his parents

(Anonymous)
love to you all

Sara, Jake, and family,

Jackson's heart is breaking mine! Words can't let you know enough how often I think of you all! You remain in our prayers daily. You have many people praying for you and Jackson! I am just speechless, I know that there is nothing that I can say that can take your pain away, but please find comfort in knowing that our love surrounds you!

Love, Becky

(Anonymous)

Going down to see Jackson today...You are in my heart and prayers. Love, Hope

(Anonymous)

Dear Sara,Jake, Molly, and Baby Jackson,
I too am crying as I write this. You all are still in my prayers and will remain there no matter what happens. I agree that as difficult as it must have been that you are doing the right thing. The little guy has been through so much and so have you. I just really believe that God is going to bless you in a great way...I know He can give you peace and cause you to grow in all situations. Those of us who have just kept in touch with your journey have been touched in a special way, even though we haven't met....but even though we haven't met...you feel like family, and I believe that is one thing God wants....for us all to feel connected, with love and compassion.Keep looking up! And keep the faith!
Love, Cathy (from CAST-UP)

(Anonymous)

I'm so sorry to hear about this news; I recently found you via a friend of mine's site. I am a parent to a nine year old girl with CHARGE syndrome who is the light of my life. I cannot even begin to imagine what you are going through right now. We had a horrific first year of life in hospitals, surgeries, etc but she made out okay eventually and is getting ready for grade four now.

Jackson is just adorable, thank you for sharing your story. I wish you much strength and love.

Lisa Weir
Mom to Kennedy - http://chargesyndrome.blogspot.com