Saturday, January 30, 2010

Shunt Revision

We took Nicholas to the ER yesterday morning. Thursday night he was up all night screaming and threw up Tylenol. I had been worried about his shunt for over a week because of a little swelling but he didn't show signs of a malfunction until Thursday night. The shunt in his lateral ventricle wasn't working and they were able to get him into surgery yesterday afternoon. His neurosurgeon was out of town so a different doctor did it. She said that the valve and the catheter weren't working. She also said that the valve not working is very rare- only our child. She said that when she got down the burr hole there was some scar tissue and under the scar tissue there was a pool of CSF that just kept pouring out because it couldn't drain into his body. She replace the valve and catheter and said if all goes well he could go home on Sunday after 48 hours of antibiotics.

He slept all day and night yesterday. He lost both his IV's and they had 4 people try to get a new one in and after sticking him about 10 times they gave up. One nurse mentioned that he might need a central line. I said he isn't getting a central line for antibiotics and there has to be something he can take orally. He also vomited twice last night after drinking Pedilayte. They called a doctor and he consulted with neurosurgey. The decided to give him some medicine to stop the vomiting and to do oral antibiotics. This all took about 3 hours to do and he was finally left alone by 3am.

Today he is still sleeping- which isn't a good sign because that could mean something is wrong with a shunt along with the vomiting. He vomited again this morning and they did another CT. They gave him a shot of antibiotics and won't do an IV unless it is needed for something besides the antibiotics. He still isn't peeing well and is little swollen. We are waiting for neurosurgery to do their rounds and tell us the results of the CT.


  1. Dear Corinne and Mark,

    God Bless You ALL!

    I was reading a story on AOL this evening about a boy who had an in-utero stroke. They talked about him using 'Theratogs' and while googling Theratogs I happened onto your site.

    I just want to let you know that I will be praying for Nicholas from now on. The three of you have been through so much, it brought tears to my eyes. From your emotional and beautifully written blog, I can see how incredibly much you love him!! I can see how stressful life your lives are at times, and I hope that as Mark wrote in his section, that you guys don't ever give up on Nicholas, nor on yourselves.

    Perhaps you already are, but do you(C & M) belong to a "Parents of special needs Kids" group? One of the ladies at my old job had a child with cerebral palsy and she and her husband were in a group based out of their local Children's Hospital where they had a lot of services done for their daughter. She said it saved their sanity.

    Originally they met once a month at the hospital, but after a while they got to be such good friends with the other parents in the group that they started taking turns having dinners (with all the kids) at each other's homes. She said it was such a blessing that they were surrounded by other parents who knew what they were going through, who had advice about procedures that their child was going to go through, who knew what to do if another child had a seizure or fell or whatever while his/her parents were in the other room (during the get-together) getting a drink or whatever.

    Likewise, when they were going through a particularly difficult time, there was someone there that said, "you can drop (their older non-special needs daughter) at our house" while they took their younger daughter to the ER.

    It sounds like you have wonderful back up with your parents there, but it is nice to have someone too, who has been through what you're going through -- whether it's tests or surgeries or the unknown -- and can give you the support you need during this time.

    I will close, wishing you good news in the morning tomorrow and I will be praying for Nicholas.

    I will also be praying for those premies who don't have anyone either.

    God bless you and may He continue to give you strength,
    Susie Thomas
    Dallas, Texas

  2. I have been lurking on this blog for over a year now. I just want you to know I'm praying for you and your son, from Germany. I can't imagine what you are going through, all three of you. May God give you strength and put his loving arms around Nicholas.

  3. I check your blog regularly and also have a son with a shunt. He is 22 months. The first year my lil one had 10+ surgeries that included revisions, infections, externalizations, fenestrations, and finally a craniotomy. It was tough. This second year of life he has only had two. I am praying for none the third year and beyond.

    I say all this to say I understand your struggle and pray that it gets better.