NO! NO! NO! THIS WAS NOT IN THE PLANS!

Colby has been sick. Enough said. Blog readers, that's why I haven't posted much lately. Family and friends, that's why I haven't called or texted much lately. Here's the recap:

Last week they sent a new nurse to go to school with Colby. She is freakin' fabulous! Day 1 she showed up 10 minutes early. Day 2 she showed up 15 minutes early. Love her! She was also professional, bubbly, interactive with Colby (that's a biggie), and a very fast learner. I took the 3 of us to school Tuesday and Wednesday so I could train her on Colby care. Wednesday Colby was crying in class, was trying to fall asleep in class. I was hoping it was just him trying to get back in the school groove, but no such luck. By Wednesday night, Colby's nose was streaming a river of snot. Sorry, no way to sugarcoat it. By Thursday morning his secretions were thick and difficult to suction, not thin. They were also a lovely color, somewhere between lemon tart yellow and chartreuse green. Dammit. Then his heart rate started creeping up, yep, a fever. Called the pulmonologist, got Colby started on an antibiotic. And you know the rest of the story. Increase cough treatments to every 4 to 5 hours, including overnight. Hover over Colby. Pray. Stress. Friday was a bad day. I called Cincinnati and said we needed to come up. The nurse was going to ride up with me to take Colby. We decided to give it 1 more hour. We went old school. Put cold rags and ice packs on Colby to get down his fever. Suctioned out his nose, mouth and trach, then left him alone for 20 minutes! The poor kid was irritated. We finally got his oxygen back to normal and slowly but surely, his fever broke and his heart rate started coming down. Called Cincy and said we weren't coming up, YET. Rough day for everyone.

Now I would say Colby is 80% well. No fever since Friday. His numbers (oxygen saturation and heart rate) are more stable. He's still having some trouble with his cough treatments. Once those secretions start moving around, his heart rate sometimes goes whacko and his oxygen drops into the high 80's. But it's progress from where we were, that's for sure. I'm a little freaked, okay a lot freaked, because Colby has appointments in Cincy on Thursday. That's just 2 more days! He needs to do a lot of improving between now and then. But if anyone can do it, it's my sweet boy. He's a tough little dude, for sure.

I've decided to go ahead and put Colby on Home/Hospital. Originally I wanted him to go to school until May 13. But now, not so much. We have to not only get him well from this illness, but also keep him well so he's ready for VEPTR surgery. I hate that he's missing riding the bus, getting a little freedom from his mama, attending his school. But it really is in his best interest. And no, we can't get the freakin' fabulous nurse to watch him here at home. She doesn't work for the agency we use for our home nursing. And that's a shame, because I would have loved to have her work with Colby.

Very little else is going on around here. It's been Colby got sick, let's get Colby well. It's Derby week around here. Yeah, okay, whatever. I'm lucky if I get to bathe daily, certainly not worried about getting out and participating in Derby activities. Maybe next year. Wait, that's what I said last year! Oh well, isn't meant to be I guess.

Colby's IPV treatment is done. Time to cough him, suction the bejeebers out of him, make his food, do his ADL's and maybe, just maybe, I can shower before the nurse gets here at noon. Keep you posted on how it all turns out.

BACK TO SCHOOL FOR YOU, MR. COLBY

Hey, I have a son who went to school today, FINALLY. Nurse #1, the usual one who goes with him to school, out indefinitely for medical reasons. Nurse #2, the fireman dude, wasn't available today. Nurse #3, who was supposed to go to school with Colby yesterday, ended up in the hospital over the weekend. Seriously, friends, I don't make this shit up. This is really how it's going around here. So I called the nursing agency and said look, Colby needs to get back in school. Send me a body. Any body. Any halfway capable, breathing, healthy, non-contagious body with a nursing degree and I'll take it from there. The last thing I want to do right now is train another nurse, but that's just TDB I suppose. So they sent another nurse and guess what, I like her. She's energetic, very nice/interactive to/with Colby, and eager to learn. She came to the apartment, I took the 3 of us to school, and the training began. She did a great job. We were driving home from school and I said well, what do you think? She let out a big sigh and said, it's a lot! I appreciate her honesty. Haven't gotten a phone call saying she won't be back, so I guess we'll all 3 off to school tomorrow for more training.

Colby was an absolute stinker at school today. I guess because he hasn't been in a while. Or it could be because he's just a total stinker sometimes. Wouldn't answer questions on his eye gaze for his teacher. Wouldn't drive properly down the hall in his power chair. Kept trying to make turns, drive in reverse. Didn't want to do what the speech therapist asked of him on the eye gaze, either. She had to bribe him with a little Spongebob. He's worn out tonight, guess all that stubbornness did him in. I ran some errands, got home around 8:30. Caught him already snoozing. But now it's 10:15 and he's still awake back there. I'm very tired, too. Watching the rest of the Reds game, then it's night-night for me.

Getting Colby back in school is our highlight of the last few days I suppose. Once we got back from Cincy, I wanted to take a couple of days to chill, let my back get rested. I worked Saturday. Went to Mass Sunday. Other than that, we just did the same ole-same ole around here. Didn't have a nurse Saturday night, plus Colby's dad wasn't able to come for his weekly visit on Sunday. I tell ya, I absolutely love the time that just Colby and I have together, no one else here. He keeps saying "I want to read" on his eye gaze. Guess it's time for Mama to step it up and get him some age-appropriate books.

Okay, Reds game over. They lost, booooo. Going to get these contacts out of my eyes and head to bed. Keep your fingers crossed the nurse comes back tomorrow. We have been known to scare a few away. 

THIS WILL MAKE YOU TIRED JUST READING IT!

Colby, Dad and I hit the road for Cincy Monday afternoon. Mom came over and helped me get Colby up, get the van packed, etc. My goal was to leave at 3:00 and we were pulling out of the parking lot at 3:01, impressive. We drove to the north side of Cincy. Found our hotel. Unpacked, set up Colby's equipment, rested for a bit. I got the bright idea to go down to the hotel restaurant for a bite of supper. Loaded Colby back up in his chair and headed to the bistro. This proved to be a bad idea on my part. There were a few very nasty, very drunk, obnoxious, dirty old men sitting at the bar. Hey, I know drunk and obnoxious when I see it, just sayin. They were making many loud, sexual comments. Hitting on the females who came into the bar. Usually I wouldn't give such behavior a second thought, but it was very uncomfortable considering I was with my dad and son! The bartender was a complete asshat. Her waitressing skills were mediocre at best, took us forever to get a stupid salad and a quesadilla. Plus she didn't have enough gumption to ask the loudmouths to tone it down a little. Pitiful.

But anyway, we all got a good night's sleep. Got up yesterday, checked out of the hotel and headed for Colby's first round of appointments. At this location he had spine x-rays and met again with the ortho surgeon who is doing his VEPTR surgery next month. The x-rays were interesting. Not an easy task to get Colby sitting up against the wall, without his back brace on, to get spine x-rays. Ortho dr says Colby's spine isn't actually "too bad" whatever that means, and this is a really good time to be doing this surgery. That was nice to hear. Loaded Colby in the van again, drove to the main Cincinnati Children's campus for more pre-surgery appointments. Met with the nutritionist, then the neurologist who has been following Colby for several years now. She only had good, positive things to say about Colby, and she has okayed Colby's surgery from a neurological standpoint. Yay I guess?? She was very pleased that we decided to trach Colby. She was impressed about the quality of his skin, no breakdown or sores, and was super duper impressed with our PT efforts, i.e. no severe contractures. She also had only good/great things to say about the ortho surgeon so that put my mind at ease a little, like 5% or so maybe.

Colby was supposed to also get a MRSA screening and labs drawn yesterday. I won't go into the details, let's just say neither happened. The ortho nurse went to great lengths to make sure people in Neurology and the VAT knew what the crap was going on in order to get Colby's port accessed and labs drawn, but yep, somehow, some way, it got jacked up and didn't happen. I was irritated, but believe it or not, I didn't throw one of my usual, you-better-find-someone-who-can-get-this-fixed-and-get-it-fixed-now fits. I was amazingly cool about it, but ONLY because we make another trip to Cincy for pre-surgery appointments in a couple of weeks, and I figured we could get the screening and labs done then. Man, the ortho nurse was hot today when I told her what happened. She gave me a list of the labs needed. So I can guarantee Colby's labs will get drawn next visit, or somebody's butt will get mounted on her/my wall(s).

Left the hospital at 5:freaking:30. Not only did we hit afternoon Cincy traffic, we also ran into storms, bad storms. Thunder, lightening, hail, horrible rain, at 2 different times on the way home. It was awful. I did some major backseat praying. I was like please Lord just let us get our tired butts home safely, which we did thankfully. We got Colby inside and unloaded about 10 minutes before it started storming here at home. Yesterday was a hard, exhausting day of travelling and Colby appointments. I'm glad that one is under our belt finally.

Having nursing issues still, but I guess I'll wrap up for now and blog about that tomorrow. Later, taters. 

NEED A COUPLE CHUCKLES? CONTINUE READING

There is an awesomely awesome therapy pool here in town. It's equipped with a stretcher lift, entry ramps and is kept at 92 degrees. It's a salt water pool. I was told this provides better buoyancy while in the water, sure, whatev. I've been meaning to take Colby for months now, finally got around to it. Mom and I accepted the challenge and took Colby swimming Thursday. Trust me, getting a 75-pound, 4'6" immobile, trach and vent-dependent child in the pool is no easy task. It was quite the adventure! The lady who works at the pool met us there and showed me the best way to position Colby and exercises to do while in the water. Colby loved it! Absolutely loved it, and I'm so glad. We had to rig up his tubing and had to get creative keeping his trach out of the water, but we all handled it. Colby was able to move his legs and arms, something he is unable to do when out of the water. Mom said her back was aching, and my right shoulder if freakin' killing me because I had Colby's head/neck leaned up against me. However, I can't wait to take him again. Hoping to take him a couple more times before his surgery. Just have to find some poor soul brave enough to go on another swimming adventure.

Colby has done better with his power chair driving lately. Same rules, he has to work for 15 minutes at driving to a target and stopping when he reaches the target. If he does it correctly, he gets a treat/reward/bribe, whatever you wish to call it. We have a bag filled with plastic eggs with appropriate-behavior-seeking items - candy and money. Yesterday he stopped 3 times. That's progress! Once he saves up enough money, I'll take him shopping and he can pick out a new movie or book or something. Then he gets free time to do whatever he wants in his chair - drive, spin in circles, play with the seat functions, etc. The only rule during play time is if he drives toward and almost hits a parked vehicle, he gets a timeout. Yesterday he was hilarious. He was driving toward his grandpa, going straight ahead. He stopped, turned the chair around in a perfect 180, and started driving backwards. Dad and I just shook our heads and laughed. It was classic Colby.     

Colby has been all over his eye gaze, exploring and learning all kinds of new words. He has a medical page that has various body parts, so hopefully one day he could tell us if something hurt, or his feet were cold, etc. He keeps saying "feet" and "nose" although I really don't think he has an ache or problem with either. Lord help us when he discovers the word "penis" on there. The other day he said "ache, ache, terrible." I knew darn good and well he did not have a terrible ache, but I played into him anyway. Hoping he would go to his medical page and pick a body part, I said oh Colby where is your ache? He answered, "there." I said well kid, you're going to have to be a little more specific than that before I can help you. That kid is a crazy nut.

Another funny eye gaze story. On his answer page, his choices are Yes, No, Maybe and Duh. I added duh several weeks ago because I thought it was something a 10-year-old might say, especially a witty, smart aleck 10-year-old of mine. The other night I went to his answer page and said hey Colby, are you done doing eye gaze for now, yes or no. His response? "Duh, yes!" Oh boy, good thing he's cute.  

I've got laundry to fold and Colby needs some intensive mama PT. I've been told by another SMA mom to stretch the crap out of his shoulders and hips before surgery, so that's exactly what I'm doing. That's all for now. More Colby stories in the near future as they develop.   

MELTDOWN PREVENTION = DEEP BREATHS

You know how you have something scheduled way off in the future and you think, ah heck, that's so far away, I don't have to worry about it now. Then it hits you that weeks/months have passed, and now the time has come to start dealing with it? Colby's VEPTR surgery, for example. Yep, it's crunch time, only 36 days until surgery. Unless of course they move his surgery date, again. Colby also has tons of pre-surgery appointments, i.e. trips to Cincinnati, him missing school, making hotel reservations, coordinating all this with the ortho department, etc. Need to reach out and talk to some other SMA families that have been through this surgery so they can give me some tips on what to expect. Working on getting some extra nursing hours for when we come home from the hospital post-surgery, I know we'll need them. Summary: I'm freaking the freak out about it!! Inhale, exhale. Inhale, exhale.

Hey, guess what? This may shock you to hear this, but Colby's supply order for the month is messed up. Whaaaat, really, wow can't believe it!! Ordered 12 items. So far we have received 4 items correctly, 2 items the wrong amount, and are waiting on the others. Same mix-up as last month, instead of sending 4 CoughAssist filters, we got 4 boxes. Congrats, Apria, really. You all must work really hard to be the total fuckups that you continue to be. Words can't explain how much I loathe dealing with this company. Inhale, exhale. Inhale, exhale. Let's move on.

Colby's Monday-Friday day nurse, still sick. She needs off this week also. I tried to get the firefighter/RN dude that has shadowed with Colby several times to go to school with him. His only availability is tomorrow. I took Colby to school yesterday and handled his medical needs. I've been told I can no longer go to school with Colby and be his caregiver, as I could be a "liability." Ironic, when Colby has blood pouring from his mouth unexplainably, or if he's blue and his oxygen is low, the school calls me and wants me to get there as soon as I can to help. Sure as heck not a liability then, am I? I've been told I could raise a big stink and get this changed, but I'm not. I'll save my energy to fight some other battle. Whatev. Inhale, exhale. Inhale, exhale. I just hate it because Colby is already missing so much school with appointments and surgery.

So if it seems I'm a little wigged out at the moment, damn skippy I am. I'm not completely jaded, though. I know we have many, many good, wonderful things in our lives. Colby is healthy! Well, as healthy as he can be, he's "Colby healthy". This time last year we were in the middle of an excruciating 37-day hospital stay when Colby had the flu. At least we're not dealing with that, right? God has blessed me with the most wonderful, giving, loving, fantastic, helpful parents on the planet. When I thought I would be taking Colby to school this week, they were like, what do you need, how can I help? They will be right by my side to help with Colby through his surgery. I'm not kidding, they are THE BEST parents anyone could ever hope to have. And if I'm not mistaken, spring is finally here? Good deal.

Okay, off to make phone calls, send e-mails, and get Colby up for the day. It's all going to be fine. Just need to remember to do what I can to move things along, but ultimately you have to turn it over to God, and it's going to be what it's going to be. Dory has just keep swimming, just keep swimming. I have close your eyes. Inhale, exhale. Inhale, exhale.  

DID EASTER UP RIGHT, SPRING BREAK NOT SO MUCH

Colby has been up for a while already today, so I went ahead and gave him his meds. He's back there watching TV. I'm in the living room, chugging coffee, watching CMT videos and now blogging. Here it goes:

This past Saturday we had a busy (and fun) day. Colby and I went to an end-of-chemo party for a friend of ours. His nurse Rhonda accompanied us. Can you think of a better reason to celebrate, after months and months of treatment, you're DONE with chemo, how fantastic! The party was in a big gym. They had the party set up at one end, so Colby was able to do some power chair driving at the other end of the gym. He also had his first gambling experiences, guess now he's a true Catholic? They had pull tabs and Bingo, with proceeds going to the Susan G. Komen Foundation. He seemed to like it all and was perfectly content doing something a different. My little boy is maturing for sure.

Saturday night Colby's dad and stepmom came over and we decorated Easter eggs. Yep, all of us, just one big happy family. Actually it wasn't bad, we all get along, especially if it's something for Colby. He was way into it for a little over half an hour, then he seemed to lose a little interest. That's 10-year-old typical, right? After they left, Colby and I also decorated sugar cookies to give out at church on Easter.

Easter was a great day. Colby looked so handsome in his purple shirt and tie! We were up and out the door right on time. Should have gotten there in plenty of time so church could start on time at 10:30. Key words there, should have. We were all loaded up. I put the van in reverse, looked at Colby, and he just looked and sounded a little "off". So I went ahead and gave him a couple sets of the CoughAssist there in the van. Glad I did because I got a lot of stuff out of his trach. THEN we were heading to church. The congregation was nice enough to wait on us. Now, you have to understand, the congregation on Easter Sunday included 10 individuals. That's not a typo, not 100, but rather 10. And 4 of those were Mom, Kenny, Colby and me! After church we went to Mom and Kenny's for lunch. My stepbrother and his family came down, so Colby was able to see his cousins for a while. And dangit, I forgot to get their picture together. That's the 2nd time they've all been together and I forgot to get a pic, shame on me. We got back home around 3:30, just enough time to get us out of our dress clothes, give Colby his afternoon cough treatment, then it was time to watch the U of L game.

Colby is on spring break this week. Are we going anywhere or doing anything exciting? Heck no. Colby's nurse is still sick, so she took off the whole week. My mom came over Monday to help around here. I went in the kitchen and there she was, standing on a chair, organizing my Tupperware cabinet. Not that I'm complaining, go Mom go! She helped me get Colby in his chair and we went outside for him to practice his driving. And again, he did not follow directions, and that's okay. He's 10 and he's stubborn, I get that. But during his driving free time, he almost ran into another parked car. I won't tolerate that. He has to know better. If he doesn't know better, there's me in the background saying stop, Colby, you need to stop, stop now! He got put in timeout again. Don't judge me, just sayin. This time I brought him inside and sat him in front of the TV and kept the TV off. So he got to look at a blank screen for a few minutes. Some people think it's cute and funny that I put him in timeout. Some people think it's mean on my part. I think it's neither. I have expectations for Colby. If I didn't think the child could do this, I'd let it go. I'm not giving up on him learning to drive that power chair. Yesterday, my BFF Pam came over and we got Colby out for a while. Took him to the mall because I needed to get a bday present. That was our big outing for the week. Yay us, a 1.5 hour trip to the mall, what a fun spring break Colby is having (sarcasm).

Okay, dishwasher is done. Guess I'll throw in a load of laundry and start getting kid up for the day. My mom is coming over to help again today. Wonder what cleaning project she'll find around here today?! Actually I'm looking forward to her scurrying around here, dust rag in hand. Is that bad? If it is, then so be it, I'm bad. I can live with that.