I love this shirt because it say's Big RIG Kid (Riggs is our last name)
Karson, Santa and Hadley the week before christmas
Karson and Cookie sleeping.
Look how amazing this little boy is he was very sick on his way to the hospital
Karson and Daddy snuggling
Karen (Physical Therapist) and Margaret (Eye Therapist) Karson loves when they come and play.
This is how Hadley & Karson hug. We wrap his arms around her neck and she sqeezes tight. If Hadley's sad all she want's is for her brother to give her hugs.
Hadley love's to hold her brother the problem is that he's almost as big as she is.
Our Beautiful Girl
This is a little example of what it's like in the hosp.
Karson talking with Hadley
Sorry that's it's taken so long to get this updated. I know alot of people have been wondering what's going on with Karson so here you go. We went in on Christmas evening and came home Dec. 31 . From the last post I had mentioned Karson went septic from his PIC line so in my mind we were going to have to pull the line which is really bad because that's his main source of nutrition. His veins are really bad so we don't have many places for his lines to go in . They put him on 3 Heavy Duty antiobiotics to try to treat the line instead of pulling it. Thank Heavens the infectious disease docs convinced the other doctor's to not pull it. They said it probably will happen again and we'll just have to do the same thing. The problem with this line is that the bacteria goes throughout his body and the line goes in to the top of his heart. That is why it's NOT good. The last stay Dr Swoboda talked to us about
putting an permanent line in called a Broviac in the chest but they would have to intubate and then came the talk of ( DNR)DO Not Resusitate. No one should ever have to have that talk about their child! If his heart stopped he could get brain damage very quickly so how long do you want us to try to revive him or do you just want chest compressions or do you just want us to let him go? They just don't want him to be a vegetable well either do we. Darren said ofcourse we want what's best for Karson we wouldn't let him suffer like that. So I told them if we happen not to be here you do everything you can to save him until we get here to say enough is enough just keep him alive long enough for us to be there when he goes. The reason I am talking about this is that it help's me to talk about it. During that stay, every time the PICU Dr would walk in, I would cring. She thought she needed to tell me that he wouldn't make it if they have to do anything to him. Well, I told her that not many of you thought he would make it out of here over a year ago and he did . I also told her about his Respiratory Arrest he had at 5 months old and he made it without any brain damage (that was a miracle ) . So, she stopped giving me the doom and gloom talks after that. This last stay, Karson was really puffy from all the fluids (TPN and antiobiotics ). It got so bad his hands were purple. Dr. Moloni, the attending that I've never really been crazy about, told me that they were concerned. He told me that they were going to cut his fluids inhalf and see what happens . Then I said "what if that doesn't work ?" Then he said "He's not going to die now . You've at least got a couple a weeks." Thanks alot JERK! I'm so sick of talking with all these different teams of doctors . I'm sick of 10 million people coming in his room and asking me how I feel? Sometimes it's nice to talk, but most of the time I would rather not. Darren and I feel we get our therapy by talking to each other and talking to other families with SMA kids, that's what truly helps me , knowing that their are others that know exactly how we feel.
Ever since Karson was diagnosed at 7 wks I've dreaded having to tell my little, sweet girl that her brother is going to pass away. Dr. Swoboda mentioned to us that she thought now would be a good time because he could go tomorrow or in a year . Hadley has always said things like " when Karson goes back to Heavenly Father, can he eat chicken nuggets "or " will karson be able to play with toys in heaven.?" For christmas , she wrapped her picture up and said that she wanted karson to have it so when he goes to heaven he will remember how much she loves him . So we've always known she had an idea. Darren and I were talking , I don't know what we said but she just flat out asked if karson was going to die. Darren just explained that Karson's body isn't like ours and he's not going to live as long as we are. We told her we wouldn't be able to see him but he could see us and be with us. We also said he would be her angel . Thank goodness for the gospel!! I don't know what we would do without it. Since then, Hadley and I have talked about him passing and I'm thankful it wasn't as bad as I thought it would be. I am so proud of her, she has had to deal with so much for how little she is.
This last month, with the help of my husband and Heavenly Father I feel like I've been able to come to grips more with our reality. I have to believe that I would be OK. I know that I have to live in the now and so when I hold Karson I hold him tight and I give him a million kisses each day ( Hadley too ofcourse). That's how everyone should treat everyone in their lives because you never know what the future holds.
