Tuesday, November 6, 2012

Another round of Pamidronate Infusions

2 down (the ones we did several years ago don't count :( ) and 6 to go.  After the 2 year mark we will re-evaluate.  FYI, Pamidronate is in the bisphosphonate family and is used as prevention and treatment of osteoporosis.  It's in the same family as Boniva that is touted on daytime TV by Sally Fields.

We were all pooped out by the time we got back home but things went pretty smoothly, it's just a lot of stress and I'm sure it's not a picnic for the boys to have an IV in with medicine going in...

Colin was the first to have the IV nurse work on him.  It took some hot packs and a lot of looking, looking, looking before she found a tiny vein.  She got it on the first try and was able to draw what they need to check before the infusions are given, as well as the Quantitative Amino Acid profile that we needed for nutrition.  We were very careful with his arm and hoped that the vein would last through the treatment, and it did! The IVs nurses name was Sue/Susan and had a lot of experience--will remember her for next time.  She was successful getting Colin's in on the top of his left hand. 

Colin half-hardheartedly would "ow, ow" and want me to put the hot pack over his IV but really he did great.  He picked National Treasure to watch and was transfixed the whole time.  He wants Aunt Chris to buy him the sequel.  He watched part of one of the Pirates of the Caribbean movies but we were out of there before it was over.

The IV nurse had a time finding a vein on Casey, too.  She ended up getting it in his left wrist.  Julie said that's where he had it last time.  His lasted the entire infusion as well.

Casey watched Drumline and some sports and was pretty quiet the whole time.  Julie got him out of his chair and all comfy on the hospital bed.  

Dr Zimacas (endo) came in and went over a few things.  He'll skip seeing us next infusion and see us at the one after that.

Dr. Lahiri (pulmonary) came in and I asked him to up Colin's settings on his vents/bipaps.  He was fine with it.  Colin's daytime settings went from 19/4 to 21/5.  His AVAPs, nighttime setting will stay the same.  It's set to give him a tidal volume of 200cc so his pressures will go anywhere from 19-25.

Candy came in to schedule next infusion which will be February 5th.  I really hate going to the hospital during the flu season but it's got to be done.  We have to keep on track so we can get these infusions DONE.

Found out we're due for MDA clinic on November 27th.  We'll see Dr. Lahiri, Dr. Benjamin (rehab) and Dr. Bingham (neuro) and Linda LaShure the dietician.  We had labs drawn for D3 so we'll see if the 800units we're currently supplementing with is enough.  Have to look at calcium, too.

Oh, and we weighed the boys this morning.  Colin is 49 pounds and Casey is 70 pounds.  No changes from last time they were weighed about 3 months ago, but that's okay.

All in all we were there from 10:00 and were done at 2:30.  I think that's pretty darn good.

Stopped by the gift shop.

Ordered a pizza from NY Pizza oven so we drove home through the bay.

Gave the boys some Tylenol when we got home.  Casey wanted to hang in his 'old' room so Julie set him up with his e-reader listening to Marcello in the Real World.  She had a bunch of his fish/dolphin lights on so he was happy.  He was very quiet and pale and sleepy looking.  Colin seemed pretty normal.  He watched his shows in the living room.

Headed to bed early.  Boys were out quickly.  I slept in bed with them so they would feel extra safe and comfy.  They slept really, really well.

I got up around 1:30 to check out the election results and was happy :)  Went back to bed and slept like a baby. 

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