Tuesday, June 24, 2014

Checking those Bad Bones

A long morning to check his bones.  Headed into DC for the Children's bone health clinic.

Traffic was miserable and there is still that awful detour to get to the hospital.

Before meeting the doctors and having tests, it was time for height and weight, just like any other time.  For quite awhile Brayden has been at 42 and 42.  42 pounds and 42 inches long.  I was expecting some growth but when the nurse said his weight, I asked her to repeat it.  He weighed in at 54 pounds...that is one chunk of love.  He also grew 3 inches.

After that, came the waiting for Brayden's turn with the dexascan to check his bone density.  Then off to take x-rays to get another look and make sure there were no new breaks or fractures.  It was finally his turn for the scans and x-rays, Brayden did a pretty good job cooperating with the awkward positions and being completely still (with the nurse and I holding him still...he is one strong little thing) for the dexascan.  Then to x-rays, and had to sit him up against the board...talk about a workout for all.

Back to the room and we wait for the doctors.  They finally arrived and came in to tell us the first round of dexascans and x-rays did not give them the best pictures so we had to go back for another try.  Thankfully the second round provided better pictures/view (cause there was no way Brayden was going to do those again in those awful awkward positions).  But he was wiped out and ready to be done with everyone.
Hours since we arrived, the team of doctors reviewed the results and Brayden's bone health is still extremely poor, still not-the-chart poor.  Thankfully there has been some improvement
since coming off the keto diet but more needs to be done.  And thankfully no new breaks.

In a few weeks, the team wants to admit Brayden for the day (should not need overnight) to start an infusion, Pamidronate.  After the initial infusion, he will go back every few months for another infusion...which is outpatient after the first infusion.  They do not know how long he will need the infusions, he still has many more years to grow and a long way to improve his bone health.  Each time he gets the infusion, the actual infusion takes 4 hours.

In addition to the infusion, it looks like they will be adding a couple of medications as well, but they haven't prescribed those yet.

We go back to the bone health clinic every 6 six months for repeat dexascans and x-rays.

After meeting with the doctors, we were still not done (while I am frantically trying to find people to pick up Carter and Luke at their camps because I did not think we would be at the hospital for the entire day).  The doctor handed us a lab sheet, we needed to go get labs...as if Brayden has not been tortured enough, lets add a blood draw.

The lab in the hospital was packed, standing room only.  Brayden was finally called and the tech got him in one stick (so thankful for the one stick).

On our way out, we ran into a sweet little girl from Brayden's school (adorable thing that I just want to squeeze).  And would you believe she is starting the exact same infusion process in a few weeks as well.  I know that mom and I will be talking...

But in the meantime, we just wanted to head home. 

1 comment:

kirstenpetree said...

Layne has bad bones too!! They have never mentioned infusions though. I hope it helps!