Jessica (xbratx99) wrote in jacksonsheart,
Jessica
xbratx99
jacksonsheart

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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.

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