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! 

ROAD TRIP

Hi-ho, hi-ho, it's off to Cincy we go. We'll be leaving in a couple of hours for Colby's surgery pre-op appointments. Today will be an "easy" day. Easy being in quotes because getting/taking Colby anywhere really isn't that easy. We'll drive to Cincinnati Children's northern campus, on the other side of the city, for his endocrinology appointment. Drive to a hotel near the hospital. Get up at the butt crack of dawn tomorrow. Then tomorrow it's boom, boom, boom. Appointments straight through from 9AM to 3PM. That's ok, I'd rather do it this way than have to make multiple trips up there.

Saturday I worked and when I got home, my sweet mama came over and helped me get the packing process started. We got together what we could. Some things we have to pack last minute because we needed to use them this morning. We were on it! Printed out the Colby-is-going-out-of-town list, and started getting it together. A pile for respiratory. A pile of feeding supplies. A pile for meds. This morning has been a breeze really. Obviously it's going well, or I wouldn't be here blogging 2 hours before our departure time!

I watched a lot of basketball over the weekend. Have to get it while I can, the season will soon be over. Seriously, if you don't like March Madness, there is something wrong with you. I urge you to seek therapy immediately. Basketball tournament time has everything - action, drama, emotion, surprise, upset, victory. It's reality TV in it's purest form, and I love it. How could you not?! Even though none of the teams I wanted to win actually won over the weekend, I still love watching. I try to keep in mind it's "just" a game. However, if UK ends up winning it all, someone is going to have to talk me down off the ledge. Just sayin'.    

Colby's nurse is back there getting him up. So nice having her help today. She'll also be driving up and helping us at the hospital all day tomorrow. I'm so thankful for that. Not that I can't take care of Colby by myself, because I certainly still can. But she will be such a huge help for feeding, changing, cough treatments, and overall being another set of ears for me. My dad is taking us up. God love him. He wants to leave 3.5 hours for a drive that should take about 2 hours. But that's ok. He's driving. His decision. I'll be in the back taking care of sweet boy. Seriously, where would I be without my parents?!  

Time to get the last minute packing done, eat some breakfast and away we go. The next blog will be after we're home Wednesday. Hoping I'll be typing words such as uneventful, went smoothly, no surprises, etc. Keep your fingers crossed for that!

IT'S FINALLY FRIDAY - AND THE BIG GAME IS APPROACHING - I'M GIDDY

We had an interesting morning around here today. Colby's bus driver backed into a rack that was sticking out the back of a minivan. I assume it was a bike rack, although it didn't look like any bike rack I have ever seen. Well anyways, there was absolutely no damage done to the bus or to the minivan, and the rack appeared to be in working order. But of course we couldn't just let it go. The bus driver had to call the bus compound, those are the rules. Then they sent a police officer. Then the owner of the minivan came out. Oh boy. Turns out she hit a rack that belongs to the Church of Latter Day Saints! We have some elders that live here in the apartment complex, and they must use the minivan when they're out spreading the Word. Now, I'm not trying to be mean, and I'm certainly not prejudiced against anyone's religious beliefs. Really I'm not, everyone has the freedom to believe and worship as they wish as far as I'm concerned. However, these young men were just down right weird. Very socially awkward. They were out taking pictures of the van. On their cell phones. Writing down information. She hit you're freakin' bike rack, dudes, calm down. Not to mention there was a policeman there to take down all the information. Finally the ordeal was over. So Colby was late for school, and I was late for work. Luckily I don't have to punch a timecard at work, and can make up the time I missed when I go to work tomorrow. Happy Friday!

But we also got some good news today. Colby has pre-op appointments in Cincinnati next Monday and Tuesday. We have a lot to get done in those 24 hours! I've been working with the ortho spine nurse to make sure everyone is on the same page. I want to know exactly what specialists we're seeing and exactly what blood labs need to be drawn. Remember the fiasco we had with Hematology last year at this time?! NOT going through that crap again. I really like this nurse so far. She seems to be on top of things, and returns phone calls. She checked with all those involved who wanted labs, and she told me that all of Colby's blood work can be drawn from his port. Now that is darn good news. Great news, really. She made my whole day. I'm very, very pleased to hear this, since Colby is such a horrible stick to try and get a peripheral draw. I'm pissed that Colby had to go through what he went through last year to get the blood work, but sooooo happy we're not going through that crap next week. Happy dance time.

We're trying a new medication with Colby. He "slobbers" a lot since he doesn't have a swallow and has very limited movement of his mouth and tongue. He's always had lots of oral secretions. I worry that they may drain down his throat and cause aspiration. I also worry about the aesthetics of Colby drooling these days. He's getting older, and I can't help but think it may bother him some. Maybe, maybe not, but I wanted to try something else. We tried Robinol over the summer, but it just didn't work for Colby. Dried out his secretions too much, which caused trach plugs. That's a huge no-no. I'll take slobber over plugs any day! So this time around we're trying scopolamine. It's a transdermal patch you change every 3 days. We started using it last Friday. I'm already having my doubts it's going to work for Colby. It tries up his secretions for sure. He had his normally scheduled trach change tonight and sure enough, there were dried, "cement-like" secretions stuck in his trach. That's not good. That's exactly what happened with the Robinol. We'll see the pulmonologist this coming Tuesday and discuss it then.

Colby took a big, fat nap today. So unlike him. I got home from work at about 3:30, and by 4:00 this kid was zonked out. One eye shut, one half open, heart rate in the 60's. Yep, that's how Colby snoozes. Guess he wanted to be well rested and stay up with me to watch the Cards vs Cats. Although we already, of course, know who's going to win. And that's all I have to say about that. Good night, all. More blogging soon.  

HARD TO FIND THE WORDS

Sometimes SMA sucks so badly I can't begin to put it into words. We in the SMA community deal with it the very best we can. Once we are thrown into this unknown bullshit disorder, we research, talk to and support other SMA families, and learn more about neurology, pulmonology, nutrition, cardiology, physical therapy, endocrinology, etc than we ever wanted. We do it all because we love our kiddos, and like any parents, just want the best for our children. We find joy where we can and celebrate the lives and accomplishments of others with SMA. That's why when a sweet, beautiful, smart SMA child dies, it stabs us all in the heart. Your heart sinks, you're stunned, and really you just want to crawl in a cave and grieve for anyone who has ever had to deal with this awful disorder. This family is very active in the SMA community. So many people that are in my "inner SMA circle" are shocked to hear of her passing. She will be "forever 7" but honestly, this is a term I'm having a hard time accepting right now. We say we cannot imagine what the family is going through, even though in the back of our minds we know that really at any time it could be OUR kid next. So many of us have SMA kids who have far outlived their expectancy. Hard to believe Colby is only 11, yet is considered an "old man" in the SMA Type I world. News like this resonates how precious our children really are, and how every day we have we them is priceless and should be celebrated. Listen to me people, because I'm as guilty of this as anyone else, but please, please don't sweat the small stuff. Get perspective!  

I HATE SMA! That's such an understatement. Really I can't find the words to say how devastating this disorder can be on an individual and family. This is not a pity party. This is reality. The harsh, overwhelming reality of raising a child with SMA. This is where I get my perspective. Yes, it's important for Colby to learn math, how to spell. But I always try to keep my bearings about all of it, because his health is ALL that really matters. Keeping him alive and giving him a good quality of life is my first and only goal in this world, period. Many days I want to shut the whole world out. Lock the doors, pull the blinds, turn off the phones and do nothing but spend time with my sweet boy. Snuggle with him. Listen to him jabber. Have him squeeze my fingers. Look at his adorable, handsome face and take in every precious second. I've gotten to do this for 9 extra years that doctors said I'd never have with Colby. My heart breaks for the families who no longer have their sweet children. I don't use this word often because I don't want to sound like a whiner, but it's UNFAIR.

I feel like this blog entry is rambling on, but I'm just trying to express how very sorry I am to hear of Kaitlyn's passing. I will keep the family close in my heart and will be praying they some day find comfort and peace with all this. I started this blog as a way to keep family and friends informed of what all is going on with Colby. But as time goes by, this blog has proved to be very helpful to me, too. It's a way for me to get some of my feelings out, the good, bad and ugly I suppose. So thank you for allowing me to share and to vent. Thanks for celebrating the good times, too, and for staying connected to us through my blog. Your comments and support over the years help me deal with SMA in a somewhat healthy, manageable manner. I'm very grateful for that, because on days like this, I need it in the worst of ways.   

TOP O' THE EVENING TO YA

Finally found my license a few days ago. It was stuck down in a Walgreens bag. Of course, where else would it be?! How did it get there? Not quite sure, don't ask me how or who or why, just very thankful I found them when I did.

During Colby's IEP, we talked about increasing his school day an hour. If we did, he would go to school 5 days a week from 9:45 to 2:15. I'm the one who thought of it, but lately I've been rethinking this idea. Colby has been tuckered out on Thursday and Friday the last couple of weeks. I think it's a combination of going to school more days, swimming on Tuesdays and puberty haha. Last Friday morning he slept through his entire IPV and CoughAssist treatments. Then when he went to school that day, he kept saying "sleep" on his eye gaze. So I'm going to give it some more thought and see how he does over the next couple of weeks.

We have the loaner eye gaze for Colby. We've had to fine tune a few pages so it's more like his old one. Not my cup of tea. Last night the nurse and I, along with Skyping with Colby's speech therapist, were trying to figure out why the wireless wouldn't work on it. Finally got that mystery solved. Today in school he was asked to spell March. He got as far as M-A-. I had him do R-C-H as homework when he first got home from school. He must've really wanted to watch Spongebob, because he had it done in about 20 minutes. Amazing what a little bribery can do.

We were able to go to the St. Patrick's Day parade this past Saturday, and it was pretty much a darn perfect day. The weather was fabulous. We had a nurse to go with us and help. Colby didn't have the first sign or symptoms of a choke. We left home at 2:00 and got home about 5:30. I had all these grandiose ideas that we would get Colby settled, the nurse would leave and I would get on the ball and do a workout tape. Yeah, that did NOT happen. I was exhausted. We had to walk 5-6 blocks from where we parked up to the parade and back, so that was good enough for me.

Okay, listen to me. It's 100 days until Colby's VEPTR surgery. Not that I'm counting. Not that I'm obsessed with it. Not that I'm already worried to the nth degree about it. Not that I think about it every day. I'm sure I'm already driving Colby's nurses crazy. I seem to have a question/worry du jour concerning his upcoming pre-op appointments, the surgery itself, or the recovery. So, friends who are in close contact with me, it's now officially your job from here on out to keep me sane, unfrazzled and somewhat calm over the next 3+ months. Hey, good luck with that, I'm a total freakin' mess you know.

Sleepiness is starting to set in. I made corned beef, fried cabbage and mashed potatoes for supper to celebrate St. Patrick's Day of course. Am I Irish? Nope, not one bit, but it gave me an excuse to make a yummy, fattening, carb-infested, sodium-ridden dinner, and dang it was good. Tomorrow it'll be back to oatmeal and turkey burgers <insert large sigh and eye rolling here>. Time to wrap it up for now. More fabulous blogging soon. Stay tuned.   

NAPS ARE BRILLIANT, THYROIDS ARE STUPID

Three days of blogging so far this week? Can you stand it? We don't really have that much going on around here, but I have some time tonight, so you're getting a blog entry.

Colby and I curled up and took a big, fat nap together today, and I make no apologies for it. After his 3:00 treatment, his heart rate was really low, and he had that sleepy boy look about him. The day nurse left at 4:00 and the night nurse didn't get here until 5:30. So I curled up beside my sweet boy, covered us up with my fuzzy IU blanket, and we took a snooze for about 45 minutes. Do I have laundry that needs to be done? Yes. Do I have a mountain of mail to go through, again? Yes. But sometimes you just have to say screw it, QT with my boy is what really matters.

We didn't mess with any math homework tonight. Actually I didn't set up Colby's eye gaze at all tonight. Bad, bad mama! His speech therapist wants it set up in front of him at all times, and I agree with that. Except for today lol. Again, some days you just have to say screw it. I'll do better tomorrow. Maybe. Probably.  

Hoping the weather hold out this weekend. I want to take Colby to the St. Patrick's Day parade here in town. I have a nurse lined up. We have our green clothes and paraphernalia ready. We've worked out special parking. Can't wait! Rain, rain, stay away.

Hey, guess what? I'm abnormal. That really isn't a surprise, is it? I went to the endocrinologist today and she was like what the heck is going on with your TSH level? Well hell I don't know, lady, you're the one who regulates my medication dosage. It's not the end of the world or life threatening or anything like that. Just frustrating. It's been over 2 years. So we adjusted my medication dosage, again, and I'll go in for blood work, again, in 3 months. I guess the good news is I can still blame my weight gain and fatigue on my thyroid. It couldn't possibly be from my eating habits or lifestyle choices. Nope, no way. Oh, and I can't find my driver's license. I had it Saturday night when I went out. I remember seeing it Sunday morning sitting on the bathroom sink. So it has to be around here somewhere. That'll be my chore for tomorrow while Colby is at school. Locate license.

Colby has about half an hour before his night treatment. I'm going to go back there and we'll do our little bible lesson together. That's what I decided to do for Lent. Spend some time with Colby each day talking about God, being Catholic, praying. It's been very rewarding. Much better than "giving up" something. Seriously, what do I have left to give up? Hope? Haha. Maybe you'll get extremely lucky and I'll blog again tomorrow. We'll see how it goes. Bye for now.

TRYING TO DO BETTER AT BLOGGING

Yesterday Colby didn't get to do Skyping at school, but he did get to evacuate the building quickly! His teacher had been out sick for quite a while, and there wasn't anyone to facilitate the Skyping session. Not that it matters anyway. Here is how Colby answered his questions after Skyping last time. Colby, did you like Skyping today, yes or no? No. Colby, did you learn anything interesting in Skyping today, yes or no? No. Colby, did you enjoy talking with the other students during Skyping today, yes or no? No. There you have it. So at his school they were having an Iron Chef contest. Different classes would go in the Life Skills room, make a recipe, have it judged, etc. Apparently there was a chicken nugget incident that resulted in flames literally shooting out of the oven. Can you imagine getting 100 special needs children out of the building quickly?! Geez. But it was under control easily, and the fire department didn't have to be called. I was glad of that, along with the fact that the kids were outside when it was 60 degrees and not 10. Never a dull moment. We took Colby swimming yesterday. Okay, now that is one thing Colby seems to enjoy. We are all exhausted by the end of the day, though. Getting in the warm water, getting him in and out of the water, giving him a shower afterwards. Lots of effort for Colby to swim and lots of effort for the nurse and me to get it all done. So worth it, though. I love watching Colby move those legs in the water. Go Colby go!

Colby had homework tonight. He has a new math goal. His teacher wants him to be able to use a calculator, which I think is a great idea. He was doing pretty darn good at spelling his name, so we thought we'd switch gears on him. Tonight his homework was to use the calculator on eye gaze (we have the loaner up and running) and say, 2 + 2 =. That's it, just 4 little choices. He calculates about the same as he spells, haha. He wasn't very interested, and after half an hour we decided to call it a night. He did have 2 + 2 at that point. It's a good start.

One of Colby's SMA buddies had his trach surgery yesterday. I've talked to the mom a couple of times. She sounds exactly like me 2 years ago, completely freaked out! I remember the fear of the unknown. I remember feeling that I wasn't in control. I remember thinking just get us out of this hospital as soon as possible. This kid is hilarious, I love him to pieces. Please join me in sending good vibes, prayers and positive mojo their way.  

Well, I guess that's about it. There's really nothing to report on my end. I worked today while Colby was at school. Tomorrow while Colby is at school I have a dr appointment and I hope to sort through some mail and laundry. Woo hoo, I better slow down. Pace myself. I'm going to wrap this up and tuck in my sweet boy. Nighty night, blog readers.