Sam vs. VWM

Sam had his 6 week check up on Monday and he is doing amazingly well. He has 2 rods and 33 screws in his back that took him from a 160 degree curve to an 80 degree curve (we knew his back would never be completely straight). He has not taken any pain meds in 2 weeks and is feeling fantastic, On Monday he was in his wheelchair for 12 hours and was completely comfortable. Before surgery, we did not leave the house without giving him painkillers, and were having to adjust him every 10-15 minutes while out. We avoided leaving the house because it was too much work for us and too painful for Sam. This surgery has been life changing for all of us.  

We want to thank everyone for the overwhelming support during this surgery and over the last year.

The last year has been the craziest of our lives, between driving to Boston, sometimes multiple times a week, to participate in the clinical trial,  all the testing we needed to do to prepare for the surgery, the surgery itself, and having a senior and going through the college application process (including in person auditions), and both working full time, it has been hectic and exhausting and stressful and we would do it again in a heartbeat. The Sam we have today versus a year ago is unrecognizable, between the clinical trial and the surgery, he is so much improved from a year ago and his life and our lives are so much better for it.

Now, for the first time in 13 years, we can relax a little, Sam's back is fixed, he's on the trial med for 3 more years or until FDA approval, and he will presumably remain stable during that time. We can actually make plans for the future, which is something we have not been able to do since Sam was diagnosed with VWM at age 2. 

Thank you to all the amazing medical professionals who made what we thought was impossible, possible. 13 years ago we never in a million years would have thought we would be where we are today, and we are so grateful for it.

Sam had a doctor's appointment in Philly, so rather than heading home right away, we decided to spend the rest of the day at the Fifa fan fest. Sam had a great time and even got to watch the Germany-Paraguay game with Santa.....

Yesterday Sam spent a second day in the ICU, he had a very high heart rate and low hemoglobin levels (and was very pale and lethargic), so he ended up getting a blood transfusion late afternoon. After the transfusion, everything stabilized quickly, so his central line and catheter came out and we were able to leave the ICU and transfer to the regular recovery room late last night!

Sam did great today, he is much more alert, pain is being managed well and we even managed to get him out of bed and into his wheelchair a few times!