Medical Updates ~ Gavin

I saved Gavin's medical update for last because he has the most to talk about!

• Since my last update, Gavin has had two GI procedures and he has another one scheduled for this coming Monday.  The lesions in his bowel are growing and the injections are not really helping.  The last procedure was kind of scary because blood was pooling and the doc had to sit and stare at it for five minutes to make sure that it didn't get out of control. We are going to do these procedures to make sure that we keep an eye on everything.  He continues to have daily GI bleeds and lately, it's been more than once a day.
• We met with Dr. Hegge (oncologist) back on July 1st and decided to go ahead with the treatment plan.  She did a great job answering all of my questions.  While she did agree that it is on the more aggressive end of treatment, he is to that point already.  This makes me sad.  We are able to give him the medicine twice a day mixed with orange juice.  He also takes an extra medicine on weekends to help prevent a pneumonia he is now more susceptible to.  We've been increasing the amounts slowly and he is now in the therapeutic range. 
• Gavin has to do weekly blood labs.  He is a hard stick and being on a diarhettic does not help. Thankfully, they've agreed to allow him to go every two weeks for now.
• He is now on five medications: diamox (excess spinal fluid), gabapentin (numbness and pain in legs), septra (pneumonia preventative), intuniv (ADD), and sirolimus (chemo treatment).
• He is continuing his OT and PT past summer because both therapists thought that there was still plenty to work with him on.  I am thankful because I see the gaps but that does mean two extra trips/appointments each week.
• We were able to get a handicap tag for our car.  This will really come in handy when we use the wheelchair and when he is in more pain.
• Upcoming Riley Trips: GI Procedure 8/15, Kidney Ultrasound and Dr. Walsh 8/24, Dr. Neely 9/20 and Dr. Haggstrom 9/21