COLBY IS THE MLB MASTER

Our trip to Cincinnati Children's for Colby's MLB went just fine. It was my favorite word – uneventful. The whole adventure was over in 32 hours. Left at 11am Thursday, got home Friday night around 7pm. Actually everything went as smoothly as it could. For some reason, it seemed to take me forever to get us ready to leave Thursday morning. Just couldn't get my duckies all in a row. They had a bed available and waiting for Colby. We got settled into the TCC. Stayed really busy with admitting; going over meds, Colby's schedule, the procedure; meeting with nurse practitioners and doctors; actually keeping Colby's schedule halfway normal. We had one of our all-time favorite nurses, Shauna. She has been on the TCC for years now, and she's just really good at her job. I didn't have to worry about Colby as much with her taking care of him (insert big smiley face.) We even had a visitor! One of Colby's St. X buddies now goes to college at Xavier here in Cincy. I told him we were at Cincy Children's and he came to see us. So nice of him. That boy is going to go far. While other kids were doing beer bongs and getting stupid in Florida over spring break, he went to Mississippi to be a counselor at a special needs camp. Good for him! He's definitely going to make a difference in this world (he already does.) One day we'll be able to say, we knew him when he was just a goofy high schooler!

We had a super-weird respiratory therapist Friday night. I'm sorry, the man was just strange. It makes me very uncomfortable when, after meeting someone new, he/she immediately start telling me his/her life story. TMI, dude! He started telling me where he grew up, all the states and hospitals he was worked, his dad passed away 7 years ago, his grandkids, and on, and on. I'd give anything if some people had a freakin' mute button. Anybody else find that odd? But I was nice. Or as nice as I can get when I'm tired, stressed and somebody starts really getting on my nerves. I was so glad when he finally left our room! Colby was started on his TPN at midnight. Leave it to Colby to make a liar out of me! He had a super great night of sleep. His HR even dropped down below 70 a couple of times. Shaking my head. I was telling anybody that would listen that he's been having sleeping problems. More on that later. I think I've figured out something else about our home vents.

Let me tell you something – my sweet boy is amazing! He's such a trooper, such a go with the flow kind of kid. He did have some increased blood pressures while we were at the TCC, but hey, I probably did too! We were in surgery holding and my dad came over to say bye to Colby. He asked if they already gave Colby some med like Versed to calm him down. I started laughing and said uh, no, Colby is just that relaxed right now. Not me. I was a jumble of nerves. I don't care how “short” or “routine” his procedure was, when they take him back to surgery and his care of completely out of my hands, it's nerve-wracking. I tried not to let it show. Don't know how good of a job I did. The pulmonologist said Colby's airway looked “pristine.” Did you hear me?! Pristine! Take that, SMA! Airways looked good, trach stoma looked good. No need to make any changes in the size of Colby's trach. Easy peasy and so glad it's done for another couple of years.

Today was spent resting and unpacking from Cincy. The nurse and I also gave Colby a bath to get all the hospitalness off him. And yes, I watched Purple Rain every time I saw it on TV today. Colby has learned more about Prince in the last 4 days than he probably ever needed to know. The nurse today was trying to tell me stuff about Prince. That's extremely funny. I kept finishing his sentences for him or correcting him. Don't even go there, dude. I'm a huge Prince fan and I guarantee you're not going to tell me anything about him I don't already know. Just sayin'.

Time for bed. Even though our Cincinnati trip went well, it's always stressful. I woke up with a migraine and it took me most of the day to shake it. All better now, though. Nitey nite, blog readers.

ONE APPT DOWN THIS WEEK, ONE TO GO

Our trip to see Endocrinology at Cincinnati Children's yesterday was, in fact, uneventful. Yay! We got in a little traffic going up. Got caught in some post-wreck traffic right before the bridge coming out of Cincy. It looked like a really bad wreck. Hope everyone was ok. Overall everything went fine. Left at 11AM and got home around 7PM. Like I said earlier, that's a long damn day for one stinking appointment. Colby is such a trooper! He never whined or cried once. Just went with the flow like the sweet boy he is. Hopefully we can spread out the next endocrinology appt to a year instead of 6 months. The endocrinologist and I discussed if the infusions were working and should Colby stay on them. The answer is yes. His bone density has improved slightly over the years. We'll take any improvement we can get! Colby is scheduled to have a DEXA scan in July and his next infusion will be in October, so we're done with Endocrinology for a while.

So Colby totally doesn't want me sharing this, I'm sure, but he has been very constipated lately. Non-pooping is common in SMA kiddos. We include prune juice in Colby's diet daily and this usually helps him go just fine. We noticed he was having some trouble, i.e. pitiful little excuses for poops. Started giving him MiraLax and extra prune juice, but those didn't helped. Moved to the next help-Colby-go step, suppositories. Gave him 3 suppositories over 3 days, that didn't work either. I told him yesterday, I'm sorry buddy, but if you don't go today we're going to have to stop on the way home and I'll get you an enema for tonight. I think that literally scared the poop out of him! He went once while we were at Cincy. Had another extra-extra large BM last night, and another good sized one today. Constipation problem solved. Guess next time I'll make mention of an enema much sooner!

While Colby was at school today I got the yard work done. I have a little experience with mowing but none with weedeating. Honestly I'd never even held a weedeater before until my dad gave me one at Easter. Most parents give their child a chocolate bunny, but I got a weedeater. Hey, it's a great present if you ask me. Runs on lithium batteries because as we all know, I would surely cut right through a cord if I had that kind of weedeater. My novice skills were evident today when I chopped right through my peony in the back yard. Woopsie! Hate when that happens!

We just got done giving stinky Colby a bath. Usually that's a Tuesday chore, but we got home too late last night. Next I need to do some packing for our Cincinnati Children's appt. Time to print out the don't-leave-home-without-it list and get busy. We drive up tomorrow. Fingers crossed no traffic problems tomorrow. Check into TCC, stay overnight. Then Colby is scheduled for an MLB procedure at 11AM on Friday. That's seems late to me, so who knows what time we'll get home Friday afternoon/evening. Colby's dad comes to visit him on Wednesday nights. We're not exactly on speaking terms, so I'll make like a log and split while he's here. Need to take back some rugs I didn't use and return Crock Pots I borrowed for open house. Saturday I'm giving myself permission to have a big, fat, do-nothing day! After this week, I think I'm going to need it! Have to DVR “60 Days In” in case they don't have that channel at the hospital. Can't miss it. I'm mesmerized by what might happen next. It's such a good show!

Wrapping up for now. Just wanted to let everyone know how Colby's Endo appt went. Once we get through this scope procedure, we don't have to be back at Cincy until May 26. Hallelujah. I'll blog when there's more to blog about, like how our next Cincinnati Children's adventure goes.

OPEN HOUSE, SUCCESSFUL. UPCOMING CINCY APPTS, HOPING FOR MORE OF THE SAME

We would like to say THANK YOU to all who were able to attend our open house over the weekend. We all worked really hard to make the house and yard pretty-pretty for the event, and I think it showed. If my count is correct, we had 63 guests. I know it's a busy time of year, so if you were here, we truly enjoyed your company. I loved sharing our new home with those who have donated generously to make it all a reality. I could never say THANK YOU enough times over to everyone who helped over the last 15 months to get us in this beautiful house. There are still a few to-do items on the house list. There always is, right? But for now I'm going to just worry about general upkeep and not focus on the extras. Our house is gorgeous just the way it is, and I should enjoy it to the fullest.

However, we have noticed some ants in the kitchen! Oh my gosh, big, black ants! No, no, no, no, no. Can't have that. So I've set out a couple of ant baits hoping that solves the problem. If not, I will be calling an exterminator because I just can't have those pests crawling over the kitchen. No way, no how, ain't happening.

I would love to say oh, after the open house we can kick back and relax this week. Nope, that ain't happening either. Colby has a busy week at Cincinnati Children's. Tomorrow we go up and back for an Endocrinology appt. Walgreens Infusion is coming to the house first thing in the morning to get Colby's 7-day post infusion labs. Then around 11:00 we'll head to Cincy for one stinking appointment. Ugh, I hate when we go up to see only one doctor! But it has to be done. I've put this off for as long as possible, so we better get Colby's little butt up there to see Dr. Stenger. I kept Colby home from school today. His class went on a field trip to Camp Crooked Creek. Colby has already been there twice and has done everything the camp has to offer. So considering we have such a busy day tomorrow, I let him play hooky today.

Thursday we check into Cincy Children's TCC and stay overnight. Colby is scheduled for an MLB on Friday morning, which stands for microlaryngoscopy and bronchoscopy. These are routine checkups for Colby. Basically they put Colby to sleep, then ENT goes in with a scope to look at Colby's airway and trach. Then when they are done, Pulmonary steps in to scope and look around in his lungs. This will be Colby's 3^rd MLB, I believe, since being trached. My dad will drive us up. Trying to get him a room across the street at the Ronald McDonald House. If not, I've made him a reservation at a local hotel. I will be staying in the TCC with kiddo, of course. Should be able to come home Friday afternoon.

So I called TCC to make sure Colby was on the admission list for Thursday and ask what time to be there Thursday. Talked to the unit charge nurse who says yes, Colby is on the list for Thursday. Cool. She tells me to call Pulmonary to find out what time they want us there. Ok, sure. I call and talk to the Pulmonary nurse, who tells me to call the TCC. This is the kind of stuff that drives me absolutely batshit crazy. So as of now, I don't have an answer. Pulmonary says I need to call TCC the day of Colby's appt to see how the admissions and discharges are going for the day. I get that, I really do. But my dad drives from southern Indiana to here. Picks us up, we load up Colby and then head to Cincy. He would probably like an accurate time of when to be here so he can plan for morning traffic and such. Once we get home on Friday, I plan on collapsing for an hour or two. Hoping Colby will be loopy still from the anesthetic so we can take a nap. Or go to bed really early, whichever the case might be.

Again, thank you, THANK YOU, to our family and friends for coming to the open house. Hope a good time was had by all. We had perfect weather, delicious food, and cold beverages. Sounds like the makings of a fun time if you ask me! We have lots of leftover beer so maybe I'll be having another party soon to serve the “leftovers” wink-wink.

Time to get my duckies in a row for the Cincy trip tomorrow. Already got the van gassed up and need to pull together a few things now to make tomorrow morning go more smoothly. Fingers crossed for an “uneventful” trip tomorrow. Our favorite word, you know. When you live with SMA, uneventful is a wonderful, glorious thing.

CAN IT REALLY BE THAT SIMPLE?! SURE HOPE SO

So happy to share that last night was the first night in several weeks Colby and I got a full night's sleep. Oh how sweet it is! I put him to bed last night, no 2^nd shift nurse. Kept him up until about 10:45. He went right to sleep. I checked on him a couple times, then I went to bed around 11:30. The next alarm I heard was his feeding pump going off at 6AM this morning. Sleep. Oh glorious, wonderful slumber, how we have missed you!

We finally figured out Colby's sleeping issue, I hope so. Oh wait, no, “we” didn't. I did. Four nurses working here, two of which are RN's, and I'm the one who figures out what's up with sweet boy. Shaking my head and rolling my eyes and letting out a big, frustrating sigh. One nurse only works here a couple shifts per month, so I'll cut her some slack. I love it when the nursing agency sends nurses that have “significant trach, vent and pediatric experience.” Yeah, what the fuck ever. They don't have significant Colby experience, which is rather obvious at times. I think it's safe to say when it comes to Colby's overall care, ultimately it's me, myself and I. Anyways, the problem was a clogged vent filter again. Colby had a bad day Saturday. His oxygen was a few points lower than normal, and his heart rate was high pretty much all day. Saturday overnight was miserable. He never did fall asleep, then around 2:30am his oxygen dipped to 87 and his HR was 130. I was thinking he had a trach plug and that I was going to have to do an emergency trach change, by myself, in the middle of the night. Good times, good times. I kept thinking, what am I missing? Why has he been struggling? Then I thought well, what the heck, we haven't changed his vent filter in a couple weeks. So I changed it and ta-da, instantly Colby was better. As soon as I removed the old filter, a puff of white smoke/powder came out. Reminded me of chalk dust or drywall dust. So maybe it's the vent pulling in construction dust and debris still?! As soon as I changed the filter and hooked everything back up, Colby was just fine. Oxygen returned to 98. Heart rate went back down into the 80's. Tidal volumes improved and overall I could tell Colby felt better.

So there you have it. All the worry and stress. All the sleepless nights. All the calls to Cincy and consulting with other SMA moms. It came down to a clogged vent filter that I guess was just getting worse over time. Needless to say we'll be changing out Colby's home vent filter more often, starting immediately. I'm so thankful Colby is feeling and sleeping better. Honestly, I only needed 1-2 more bad nights before a visit to the funny farm was going to prove necessary. Let's keep our fingers crossed for another restful night. Thank you to everyone who checked on us lately. I appreciate the calls and texts to see if Colby's sleeping was getting any better. I'm not sure the dirty/clogged vent filter is totally the answer, but it's a start. We're also giving Colby 5 mg of melatonin at night, per Cincy, to see if that helps him sleep. Just wanted to give a quick update. Now I'm off to do more open house prep work. Only 5 days away now! Wow, time flies when you're a stressed out, sleep deprived, zombie-like mama.

NO SLEEP = TIME FOR BLOGGING

One word describes us lately: cra-cra. It's absolutely freakin' crazy around here lately. Or should I say, crazier than normal. Here's why:

Lots going on with Colby. He's on spring break this week. We didn't really plan anything special. He had speech therapy yesterday and got to try a newer/faster version of eye gaze. Tuesday we did our normal swimming day. We're trying to arrange for his former babysitter to come over for a visit. We also have planned to go pick out a new fish and get a haircut this week. Just a little something each day to keep him busy/happy. He's scheduled for his zoledronic acid infusion next week. He does these 2x a year to help with bone density issues. He'll be missing school at least 2 days next week for pre-infusion labs, the actual infusion, and a day of rest. Not good timing on my part. I wasn't aware he was due for the infusion or I would've scheduled it over spring break. I'm sure it doesn't hurt Colby's feelings one bit to miss some extra school. Plus the week after that we have 2 visits to Cincinnati Childrens, Endocrinology and then a couple days later go up for a routine MLB and bronch. Oh, and while we're at it, his new AFO's are done so we need to schedule a fitting for those. AND, somehow Byrum Healthcare started sending the wrong amount of feeding supplies (too much Vivonex and not enough Neocate) so I've been on the phone trying to get that worked out. Furthermore, the company that supplies Colby's briefs no longer has a contract with Ky Medicaid, so I've been finding another supplier for that. Never a dull moment with that sweet boy's needs.

Colby's sleep pattern continues to be horrible. Worse, as a matter of fact. Today, for example, we've been up since 3AM-ish. I've called Cincy and talked to Pulmonary, Cardiology and Endocrinology. Of course nobody can give me definite answers as to what's going on with Colby until they see him, run some tests, etc. I'm convinced it's more of a puberty/anxiety/sleep problem more than it is a cardiac problem. Because he's fine during the day. Sleepy, of course, trying to take naps during the day. But he's able to sit up in his chair, go to school, etc, no heart rate issues at all. As a matter of fact, his heart rate is way better when he's wide awake than when he's supposed to be sleeping! Uggggh! We had a sleep study scheduled for him at Cincy, but the earliest appointment we could get is the end of July. Boogers! We're on the cancellation list, so maybe we'll get lucky and get up there sooner to get that testing done. I'm going to call Pulmonary today and see if they will prescribe something to help Colby sleep. Just a little somethin-somethin to try for a few days so we can at least get caught up on some sleep.

The other cra-cra part of life as we know it right now is getting ready for our open house. It's a mere 10 days away and there are so many little things I would like to get done between now and then! We've all been working our fannies off trying to get the house prettied up for visitors. Dad and I have worked on the yard – mowing, weed eating and edging, putting a circle of stones around the tree in the front yard. Charlie, world's most fantastic carpenter, made sure the new garage doors got installed, along with several other to-do items we asked him to help us get done. Nancy finished up the stepping stones and pea gravel outside while Darrell and I painted the garage and columns on the back deck. Nancy and I have also been cleaning out flower beds and putting down mulch. Saturday my friend Christina and her daughters are coming over to help me get the basement back in order and cleaned a little. How did it get so darn junky so darn fast?! My friends Jimmy and Joni came and helped me finish up hanging pics on the walls. My mom is on the schedule to come over Monday so we can start doing some serious cleaning. Not to brag, but this house is going to look sparkly clean, wonderful, beautiful, super cute to show everyone at open house! If it doesn't look fabulous, it's certainly not because of lack of effort!

It's 7:45. Time to get our day going. Colby gets his meds at 8:00. I need a shower. Nurse here at 9:00. He'll start getting Colby up while I run to the bank and store. I think later today we're painting my hand-me-down patio furniture. Not sure, it might be too cold. If that's the case, there's plenty to do inside like unpack a few last remaining boxes upstairs, make a grocery list for open house, paint a shelf for Colby's room and the general everyday stuff of dishes, laundry, hang out with kid. And I think my dad is coming over for a visit, too. Hope the next time I blog I can report good sleep for Colby and me. Because honestly, this mama is pooped out. Something has to give soon with Colby's sleep or I'll be getting in naps at the funny farm.

TGIF AND HAPPY MARCH MADNESS

Trying to play catch-up today. I'd been doing so good on exercising regularly, then starting a couple weeks ago that changed. Trying to get back on track. Walked 40 minutes this morning. Not exactly marathon training but hey, 40 minutes is better than 0 minutes. Laundry, it never ends! There are only 2 of us in this house. How can we have so---much---laundry! Did a load yesterday, on my 2^nd load today, and have a load waiting. Bleh to sorting, pretreating, washing, drying, folding and putting away clothes. I swear if they made disposable clothes I would buy them! Now for blogging! Haven't blogged in a while and feel it's much overdue. So here's what's new in our little corner of the planet.

Colby was having some high heart rate issues. I don't mean off-the-charts high, but rather, he was not sleeping well. When he is sleeping, his HR should be in the 70's, sometimes even the 60's. For several nights in a row, Colby's HR was averaging 115 throughout the night. I know many SMA kiddos wake up through the night needing to be turned, suctioned, etc. Luckily that just has never been Colby. He usually sleeps through the night. But recently, he would sleep fine, then at various times of the night set off his HR alarm. Sometimes it would beep a few times and be done. Other times his HR was up and would stay up for well over an hour, despite me trying all my mama tricks to settle him down. This high HR stuff was freaking me the freak out! I mean I hit total panic mode. We went through several nights where either of us got much sleep at all. With SMA and Colby being nonverbal, you just never know what to do. I didn't want to overreact but then again, I certainly didn't want to under-react. I was at my wit's end. Long story short, he seems to be fine now. He has slept well the last few nights. We have started setting his high HR alarm at 100. That way I'll know right away if he's waking up and/or having issues. Hoping that mess is over and done!

So, with interrupted sleep and added stress and worry, my migraines paid me a visit. With a vengeance. I felt like absolute hell for a couple of days. A frazzled zombie with a screaming headache, that was me! Once I realized Colby's HR was high only at night, that took away a lot of worry. I can deal with sleep issues, but not cardiac issues. You just NEVER KNOW with SMA. You can't ignore any symptom or change in behavior with our kiddos. They are simply just too medically fragile. I've been watching and hovering over that kid more than usual! If he could reach up and throat punch me, I'm sure he would! Now that he seems to be over whatever it was he had going on, and we've been able to get more solid sleep, my migraines have gone bye-bye.

Funny eye gaze story. The principal at Colby's school paid his classroom a visit. So what does Colby do? Looks at his eye gaze and says, “shut the front door.” Yes, I put that saying on there trying to encourage Colby to use his eye gaze more. But Colby, really, did you have to wait and say that when the principal is in your classroom?! He said it not once, but 3 times. Yes, that child is mine. No doubt. Good thing I've never programmed cuss words on that thing!

We still absolutely love, love, love our new home. Love it! We moved in back in November. Did the initial unpacking, put stuff on the walls, etc. Now comes the 2^nd wave. We're having an open house soon. We want all those who donated to our home to come see how beautifully it turned out. Our super-fine, world's greatest carpenter is working on a few items. Getting the garage finished is the biggie on the list before open house. We still have the original, broke, uglyass garage doors on the garage. Plan is to remove the concrete support in the middle, take out the 2 old doors and replace it with a single, bigger new door. So of course there's framing and construction that has to be done before the big door can be hung. So Charlie (world's best carpenter ever and my super hero) has been getting the framing ready. The door has been ordered and that project should be done by open house. Also trying to do some further decorating, patching the yard where the grass didn't come up, etc. If we didn't do a single thing, the house is still beautiful and everyone will be amazed at the transformation. But you know, I'm a chick and you know how we can be. Everything needs to be just so for the open house. As long as kid sleeps and the migraines stay away, I should be able to get some stuff done in the next couple of weeks. Around watching basketball games, of course. Nothing is getting in the way of my March Madness.

Speaking of which, time to wrap up this blog and get to watching b-ball. Go my Hoosiers go!!!!

TUESDAY'S TALES

Colby is getting his 9PM IPV and CoughAssist treatment. I'm on the cough watching my Hoosiers, trying not to cuss excessively. Trying, not succeeding. Go my Hoosiers, go!

The past week was pretty darn good for us. We are finally starting to get back to something of a normal schedule. Well, our “normal” schedule. The new school nurse is working out well. I stayed in the school building last Monday, just in case they needed me. Then last Thursday I stayed within one mile of the school in case they needed me. Hey, what can I say, I have to make sure my sweet boy is okay and safe at school. But yesterday I just let it rip. New school nurse and Colby got on the bus and I was like, bye, see you after school. Last Tuesday we took Colby to pick up his new glasses, then we were finally able to take Colby swimming. First time in 4 weeks I think. Of course Colby loved it. It's his thing. Last Wednesday we took Colby for a PT assessment at The Kids Center. We currently don't have a PT for Colby, and with his complex diagnosis, we kind of really need one. I was impressed with the facility and really liked the PT who evaluated Colby. Colby will be casted for new AFO's next Monday. Next step after that will be get his power chair evaluated and fixed. As Colby is driving the chair forward, it gradually starts to veer off. Usually it's not as issue since Colby could care less about driving forward anyways. But lately he has shown interest and has been trying to drive correctly, so we definitely need to get his chair fixed for him. We finished up the week with Colby getting a haircut at Great Clips on Friday afternoon. Then on Sunday we took Colby up to the local pet shop to pick out a couple of fish. Hey, I'm very proud to say we haven't killed a fish in several months! We currently have 8 little fish swimming around in harmony in Colby's tank. Hope our luck holds out. I always feel badly when I have to give a little fishie the big flush.

Yes, we still love our new house. Actually I think I love it more all the time. It really is perfect for us, exactly what we need. We're having an open house in April. We want all the people who donated and worked on the house to come see the finished project. So there are several things to do before the big day. Went shopping over the weekend to choose fabric for Roman shades in the kitchen. Slowly starting to get the garage cleaned out. It's shocking how quickly you can accumulate stuff! Our biggie to get done is the garage doors. We still have the nasty, broken, old doors on the garage. We're waiting to hear from the world's greatest carpenter. He's going to fix the structure so we can remove the concrete from the middle and have one large door instead of 2 smaller garage doors. Just makes sense with the van, getting Colby out from the side, my inability to back the van up. Plus a few other things to do, then we'll have a big old party to celebrate our beautiful new home. Not sure I'm ready to have 100 or so people traipsing through here, but I'm really excited to see everyone who contributed to the house and thank them in person.

Going to watch the rest of the IU game and then go to bed. Just wanted to let everyone in Blogland know we're doing well. Colby is still the sweetest stinker I've ever seen. Last Friday his teacher asked him how he was feeling. Colby looked at his eye gaze and said bored. Yep, that's my kid. Then today the day nurse was giving the night nurse report in Colby's room. I guess he didn't want to hear it because he said out. Then the day nurse was telling the night nurse how Colby was mad because he made him stay up on his left side for almost an hour. Not Colby's favorite side. Colby looked at his eye gaze and said whatever. OMG it was too funny. He's a hot mess for sure. But he's my hot mess, and I sure do love him. More blogging soon. Peace.