Thursday, April 24, 2014

Gavin's KTS Updates

Wow!  There has been so much going on with Gavin and his KTS this year!  Here are some of the latest updates:

  • Gavin's vein procedure is scheduled for June 6th with Dr. Marshalleck.  That is a Friday and he will spend at least one night in the hospital.  My mom is planning to be there because we aren't sure if Brian will be able to spend the night or not.  I've been feeling sick about it and felt like I had a bunch of unanswered questions.  Brian and I got our thoughts together and called Donna (his nurse) and asked some questions.  We feel MUCH better after getting the answers.  There are no promises, but I now feel sure this is the best step for us to take. 
    Where on the leg do they cut the vein off at?
    They will make a puncture in the ankle area, go up to the hip all the way up the vein, put coils into the hip area, and foam the full vein back to the ankle
    Will it create more Lymphatic growth from lack of blood flow?
    MRI shows the deep veins are normal so this might actually help prevent lymphatic growth
    Will it create more rectal bleeding?
    He feels the rectal vessel is far enough away that he doesn't foresee it being a problem or an
    increase in bleeding.
    Will he be able to walk around after?
    Gavin will take it easy for a day or two and then slowly begin to increase activity level
  • Dr. Contraras called this week.  She said after consulting with Dr. M, she thinks schlerotherapy is the best form of treatment.  However, she wants to do another colonoscopy in 6 months.  During the scope, they will check for growth and changes of the vascular lesion.  If it grows/changes, it will need to be treated one way, if it doesn't, it will be treated a different way.  I'm not sure if they will be able to treat it during the scope or if we will go back for that.  We will ask next time we see her. The next scope is scheduled for October 6th.  She also wanted us to set up an appointment with her in 5 months to check blood counts.  A few things hit me after that phone call.  First, I was hit hard with the fact that he has to have another scope (although I am grateful that they never just rush into anything).  Second, we are so blessed to have doctors who call us directly and are always willing to answer our questions and concerns.
  • After several phone calls, we were able to arrange an appointment with Dr. Haggstrom and Dr. Contreras on September 9th.
  • As of last week, we are stopping physical therapy.  Carrie did an evaluation on him.  There are a few things for him to work on, but she wasn't sure of his need for her.  I was nervous about it because every time we've stopped in the past, he has regressed.  I was happy to find out that we have a year to get him back in without starting over with an evaluation.  I am going to monitor his progress the next few months and make a decision at the start of next school year.  Some things he definitely needs to work on are: standing on one foot, hopping on one foot, throwing and catching.

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