GRAB A SNACK - LOOOOOONG POST

I'll tell you about Colby's pre-op appointments and try not to bore you with a bunch of blah-blah medical/SMA talk. Here it goes:

I decided we should weigh and measure Colby before heading to these appointments. That was a good call on my part. Too much trouble weighing him with clothes and splints on, trying to weigh the power chair with him in it, then with him out of it, etc. He weighs 86.4 lbs and has grown another 2 inches. He's 58 inches tall now! Holy smokes, what a big boy.

Endocrinology: had this appointment Monday afternoon. From an endo standpoint, Colby gets the okay for surgery. Colby has low bone density and has been getting infusions at Cincy Children's to help with this. The doc and I discussed Colby getting another infusion before surgery. He has had 3 infusions with no problems and/or side effects, so I think I have her talked into letting him do the infusion here at home. The endo nurse has already called me about getting it set up. Will update with this situation as needed.

Monday night we stayed at a hotel near the hospital. The hotel doesn't have a restaurant, so I sent my dad on a get-us-some-supper quest. He asked what I wanted. I said I didn't care, just bring me back food. He went to a local restaurant and came back with spinach/artichoke dip and chips, along with potato skins. Excellent supper. Good job, Pop.

Tuesday our first appointment of the day was with Anesthesiology. Anyone going under for surgery is scary, but it's particularly scary/worrisome for an SMA patient. But the nurse practitioner and anesthesiologist who talked to us were very thorough. They answered my questions before I even had a chance to ask them, and I felt really good after speaking to them.

Next was Neurology and Nutrition. First the nutritionist came in. We have a nutritionist locally, but keep Cincy in the loop of Colby's diet, calorie count, nutritional intake, etc. KUDOS to Colby's nutritionist here in town. The Cincy nutritionist went on and on about how perfectly Colby has followed his growth chart all these years. She took one look at Colby and said, yep, you must be doing something right. She wants to up Colby's protein intake between now and surgery and also 6 weeks post surgery. She had some suggestions for that. I'll be in touch with Colby's wonderful, fabulous, kickass nutritionist here in town and we'll discuss. The neurologist also commented on how big Colby is getting. How healthy he looks. Complimented me on the care we all give him. Made me feel warm and fuzzy all over. So from a neurologic standpoint, Colby is okay for surgery.

I don't know why in the world getting labs and hematology issues are such a clusterfuck with this kid, but they have been and continue to be. We were told since we would be in Neurology for a long time, the VAT (vascular access team) would come to us and draw all the labs Colby needed. Super duper. So the neuro nurse calls to let VAT know we're there. VAT says nope, we don't have those orders. Fantastic. Time for good ole Plan B. More about blood draw later.

Next was Cardiology where Colby had his Echo and EKG. Easy peasy. We were in and out of there in no time. Don't have the results yet, but not looking for any complications in this area. Never had any before. So I'm assuming Colby should also get the okie dokie for surgery from Cardiology.  

We had some time before Colby's last appointment, which was with the  pulmonologist. So they sent us to the TRC (test referral center) to get the labs done. <sigh> They were all ready for Colby, sort of. We walked in and I noticed she had one of those blue bands, meaning they planned on sticking him and getting the labs peripherally, not through his port. I said, uh nope, not happening. I reiterated, again, that Colby has a port, that he was a horrible stick, and that we were told his port would be accessed and the blood work would be drawn from the port. See what I mean? Another miscommunication on someone's part! We were able to get Colby's MRSA screening while we were there, so I guess that stop wasn't a total loss. Come on people, let's get this figured out, please and thank you.

Last but not least was Pulmonary. I know this update is getting long, stick with me, it's about to get interesting. His appointment was scheduled for 3:00. We got there right at 3:00. Pulmonologist rolled in at 4:20. I was on a mission to get Colby's labs done. They paged someone else from the VAT to come get the blood work. I kept having the pulmonary nurse page the VAT. No way were we leaving that hospital without the labs getting done. So they come in, finally, to get the labs. Colby starts crying. I think he was just done for the day. He is a total stud and did great/fabulous up until this point. I don't blame him, heck, I had only one nerve left and VAT was standing on it. Much more and I would've been crying, too, or at least cussing and throwing my famous Amy hissy fit. So there I am, trying to talk to the pulmonologist, comfort Colby and talk to the VAT all at the same time. They drew 11 vials of blood for Colby's lab. Finally got that done!

But wait, there's more! Here's the shocker. The pulmonologist says maybe Colby doesn't need VEPTR surgery, maybe he needs spinal stabilization/rod surgery. Holy crap on a cracker. ALL we have talked about with Ortho for the last year is VEPTR, now this?! Thank goodness I had recently spoken with another SMA family, and the same pulmonologist told them the same thing for their son. So at least I had heard of this before this appointment. I said look, you all have 85 days to figure this out! Needless to say my near future will involve research and conference calls with the pulmonologist and ortho surgeon at Cincy to figure out the best option for Colby. Nothing like throwing me for a loop after we'd been to appointment after appointment, and my poor little brain was fried. The best way to describe me after that is "mental zombie." Finally got out of that hospital at 5:15.

Went back to the hotel. Sent Dad on a food run. This time he came back with beer (such a good man) and a quesadilla. I didn't have to cook it. I didn't have to think about it, so it was the most delicious quesadilla I've ever had, ever. We slept in until 8AM this morning. Got Colby up, packed up, checked out and got home about 1:30. The rest of the day has included unpacking, checking phone messages, returning phone calls and napping.

And there you have it. Our last 3 days in one very long blog entry. Not exactly a super fun way to spend Spring Break, but I'm ready to move forward with this surgery. I'm glad we got the majority of these pre-op appointments out of the way. Colby did such a great job. He was examined, listened to, talked to, talked about, moved from location to location, taken in and out of his power chair I don't know how many times. And the whole time he was a trooper. The only problem he had was the crying with the blood draw, and who can blame him? People coming at you in gowns and masks poking you and getting your blood. So very glad that day is over. I've been dreading it ever since the appointments were scheduled. More blogging soon, but for now I need to give my fingers and brain a rest!