Saturday, October 1, 2016

Medical Madness ~ Gavin

Since I DARED myself to write a medical update on Gavin this week, I thought I would take the time to sit down and do it.  The problem is, there is so much to write. I'll do my best to remember it all and keep this post under a million words!

  • GI Bleeding: Gavin's GI bleeding is still a daily struggle for us.  He's had procedures on August 15th, September 26th, and will have his next one on October 17th.  Dr. Hon did 5 or 6 injections on the last round and seems to think it is looking better.  I'm not sure how I feel about it because he is still bleeding often, we are doing procedures every few weeks, and the lesions are growing up further and further in his bowel.
  • Bowel Prep: Gavin is no longer tolerating bowel prep well and it has been quite an unpleasant experience with lots of vomiting.  Next time, we are going to try a different version so fingers crossed it helps!
  • Sleep Study: For about 6 weeks, Gavin was overall very sleepy and lethargic.  Dr. Walsh ordered a sleep study.  They didn't find anything.  While that is a good thing, it is also frustrating.
  • Lab Work:  Poor Gavin has had lab work so many times.  He is a really hard stick and this often involves multiple sticks.  After a house call, we finally found someone who is great with him and can get him on the first try every time.  Now we just have to hope and pray she is there every time we go!  
  • Triglyceride Scare: A few weeks back, I got a scary phone call on a Friday afternoon that Gavin's triglycerides were high and that he needed to be seen Monday.  He was at a higher risk for stroke and pancreatitis.  He had to stop his sirolimus for the weekend and lay low.  If anything changed and he acted weird at all, we were to take him straight to the ER.  It was a stressful weekend.  When we got there on Monday, they told me that his levels should be under 150 and were in the 800s!  CRAZY!  His levels had dropped since we stopped the medicine.  However, she wanted to start it back up again so added another medicine to counteract that triglycerides.
  • ADHD Meds: Gavin had three medicine changes last week.  With that, he came out of the sleepy state and now is bouncing off of the walls!  We met with Dr. Voyles yesterday to adjust his meds again.  We are experimenting with different doses every other day so we shall see.
  • OT and PT: Gavin is still doing OT and PT weekly.  His handwriting has greatly improved with OT, but we still have a few things to work on.  She is doing an evaluation on him in PT to see where he's at.  We've noticed that he is very inconsistent, awkward in his movements, and has difficulty with actions crossing the midline or requiring both hands to work together.  
  • Eyes: Gavin's swelling in his eye nerves was the same last week as it was three months ago, but it's greatly improved from a year ago.  We still do not know the cause and may never know.
  • Brain MRI: Because of all of the sleepiness and craziness going on, another Brain MRI has been ordered and is scheduled for November 10th.
  • Limp: Gavin has been limping a lot lately.  He says that nothing hurts, but I'm worried about it.  We may be going back for leg xrays sooner we'd hoped.
  • Weight Gain: Gavin's gained 6 pounds in about 2 months.  He's eating less and healthier, so this doesn't make much sense.  We aren't sure what's going on, but are keeping an eye on it.
I'm sure I've forgotten something...but as you can see...Medical Madness RULES our life!

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