Monday, December 7, 2009

Back...& better than ever

We are so glad that we have our support group. We never would have found out about the OI Clinic in Omaha, NE. The dr's & nurses treated us & Bennett with such care & respect it was great.

We drove...of course, the drive up wasn't bad, it only took 6 hours & Bennett was great the whole way. We stayed at the Hilton & they really took care of us too. So, the first day we checked into the hospital we saw Dr. Azzrow, he check on Bennetts hernia. Fortunately the opening is large, that means that it cannot become incarcerated YAY!!! He also said that he doesn't need surgery right away, they are going to wait till he has a couple more PAM infusions before going that route. He also had his DEXA Scan & X-Rays. They revealed that his hips & legs are very low in density & aren't even close to being ready for rodding...oh well for now.

The second day was when he saw EVERYBODY, Dr. Esposito (Pediatric Surgeon), Dr. Lutz (Genetisist), Carolyn (Dietitian), Carrie & Katie (Physical Therapists), & Rose Kreickmeyer (Nurse Practitioner).

The day finally arrived, Dr. E talked to us for about an hour. He said that Bennett isn't ready yet for rods, we just need to give the PAM time to help strenghten his little bones. He told us about the rodding procedure, he really knows his stuff. Dr. Rose came in & asked us ALOT of questions, it was to help make his stay in the clinic as comfortable as possible, she's the person in charge of PAM treatments. The therapists asked us what we were doing for Bennett, if anything to strenthen his legs, arms, or neck?? We said nothing, because we were told he wouldn't make it 2 month's. They were very understanding & told us there are some very easy exercises we can help him with to make him stronger. The dietitian told us something suprising, Bennett is getting alot more calories than normal, so his lack of weight gain is just because he has a very fast metabolism.

Dr. Lutz had very good news for us, I asked him straight out " has Bennett made it past his first major hurdle??" He said yes, without question, he's 7 months old, no vaccinations, been out in public exposed to who knows what??? He has years to go!...well thank you very mmuch Dr. Lutz. That news made his mother & I the happiest parents that could ever be.

Bennett was then checked into the OI Clinic to start recieving his PAM treatment. The nurses there were fantastic Jamie, Sherlae, & Kim. Dr. Snow is the hospitalist who administers the PAM. The bad thing about being so small like Bennett is the only vein they could find was in his HEAD!! The IV was in the top of his skull, I just about passed out when I saw it. They started his treatment that afternoon, it made his bones hurt at first & then he was happy as a clam as it started to work, I stayed the night in the room with him. The next morning he got another dose, 2 doses is 1 treatment. He thought he was done, oh no...he recieved 5 vaccinations. He was one sad boy. They checked us out after that & we drove home. It took us 9 hours going home, not because of weather or anything, we just had issues with Mr. Man. We made it home safely & in one piece. Bennett has been sleeping great, he hates the new pain meds they prescribed, they must taste aweful. He closes his mouth tight, shakes his head back & forth. I have to say though he is like a different boy, much happier, as for us?? We are able to sleep more & more soundly knowing he feels so much better. Talk to you soon. Mark.


  1. Yikes! I can imagine how easy it would be to just pass out watching the IV get placed in your childs noggin! Sonya just had hers placed in her foot today for her PAM. We will be getting a port soon though as she has run out of good veins. I can tell you the PAM makes a world of a difference! Sonya is only on her 3rd round of PAM, but she has become so much more happy and more mobile! So glad you had a great trip to Omaha!

  2. I'm glad everything went smoothly :) Bennett is one sweet boy.
    I think the problem with veins is universal in people with OI. I remember that as a little girl I used to have blue arms and legs from all the poking and prodding as they were trying to find a good vein. Definitelly not happy memories.
    The PAM treatment really helps. It just requires some time.
    All the best,