PROGRESS FORWARD, I THINK

We busted out of here right on time Tuesday evening - 6PM - headed to our hotel in Covington. Kinda sorta drove right past the turn for the hotel. Had to take the bridge over into Cincy, loop around, then found the hotel. You know, the scenic route! We also hit a thunderstorm on the way home around LaGrange. Other than that, no troubles with traveling. No traffic jams, no Colby choking, etc.

Once we got checked into the hotel, got everything unpacked and Colby settled in, we ordered some LaRosa's pizza. Mom and Kenny wanted to watch the DWTS finale. Huh, you're kidding me, right? But they were kind enough to take us to these appointments, so I was kind enough to stomach through that crappy show. Got to bed around 11PM, then Colby proceeded to jabber, and jabber, and jabber loudly for another half hour or so. That kid wears me out sometimes.

Got up, busted ass, checked out of the Hampton Inn and headed for Cincy Children's. We arrived right on time for Colby's hematology appointment, 15 minutes early even, which is unheard of in our little world. Then we waited. And waited, and waited. I was told they wouldn't take the blood for Colby's platelet aggregation study from his port because it gets heparinized. They would have to do a peripheral stick. Fan-freakin-tastic. I said okay then, only the Vascular Access Team can do it. Sometimes I wonder if they only have 2 people on the VAT in the whole hospital because it took them 2.5 hours to come do Colby's labs. Not that it mattered. We also had an appointment with the hematologist at 2:00, so we were pretty much stuck there all day. Everyone else in the room was so calm while we waited. Colby was watching Spongebob on his portable DVD. Mom was reading Reader's Digest. Kenny was working a Sudoku. I was pacing, cussing, poking my head out the door going where is that damn VAT?! Can you picture it? Once the VAT came to do the labs, the nurse was super, super nice and cool, so I couldn't be mad at her. Most of all, she was able to access Colby on the first stick. Heck, now she's my new BFF! They took 11 vials of blood from Colby. E-le-ven, holy crap I couldn't believe it.

Then came the waiting game. I said if there was any way the hematologist could see us early, it would be much appreciated, since that was the only other appointment we had for the day. And he did, wow! Showed up at 1:15 instead of 2:00. Actually now he's my new BFF. I had just finished my Gold Star Chili 3-way and here comes Dr. Gruppo. Awesome! He asks me a ton of questions, gets the lowdown on Colby's medical history. Gives Colby the once over. Then he looks at me and says well, I don’t think this blood work is going to show anything, so you need to go ahead and get his surgery back on the schedule. I didn't know whether to kiss him on the mouth or punch him. Good that probably Colby has absolutely nothing wrong with his blood, it clotting, etc. Bad in that surgery has been postponed, we've gone to Cincy 3 extra times to get told, yeah, nothing is wrong, and it's been mentally taxing for us. But what do you do? Then the doctor wanted one more blood sample. Luckily they had left Colby accessed just in case, so I let them go ahead and do it. They will call next week with the results of his platelet tests.  

So, first phone call of the day will be to Cincy Ortho to get this damn VEPTR surgery rescheduled. Also need to call Colby's school and let them know he will be back in school until the end of the school year. Also need to unpack from the hospital, call in some prescriptions, etc. So I better get going. Just wanted to give a Colby update.

HEADING TO CINCY? YES! FOR SURGERY? NO!

So I'll pick up from where I left off from my last blog entry. My massage was fabulous, not to mention much needed. I was sore as all get out afterward, but I've always heard that's good. The massage therapist said wow, you really had a lot of knots in your neck and shoulders. Really, gee, I can't imagine why.

The rest of our weekend was peaceful and uneventful, which was exactly what we needed. I continued training a new nurse on Saturday afternoon. She's doing a good job with Colby. I was even comfortable enough to run down to the store (gone 35 minutes total). Colby drove his power chair for a while later in the evening, once the freakin' heat and humidity died down a bit. Seriously, no spring, 90 degrees? He was doing so well. Got out my phone to record him. Then sure enough, before I could stop him, he ran smack into the back of a neighbor's Ford Escape. Dammit Colby!! I couldn't get to his hand fast enough to get it off his switch. He didn't bump into it, he hit it full speed. Dammit Colby. Yep, he got a timeout. I tell him every single time before we go outside to practice driving, with a very stern voice, Colby, do NOT run into cars. You will get into trouble and put in timeout if you do. Apparently he doesn't give 2 flying farts if he gets timeout or not.

Colby was able to go to school yesterday. I got a text message Sunday at 6P that the nurse we really like was available. So I took them and hung out in the classroom one more time to make sure she was sufficiently Colby trained. She did an awesome job. But that's the last day Colby will go to school this week. The nursing agency had her booked for other students the rest of the week. Fantastic. Actually it's not a big deal. If he had gone to school today, we would have been rushing around later this afternoon to get to Cincinnati. So this way we can take our time and Colby won't get too tired. Tomorrow we'll be in Cincy for appointments. So starting next Tuesday (as Monday is a holiday) this nurse will be with Colby until the end of school. Like 6 or 7 days. But it's better than nothing. He has spent enough time not going to school for various reasons lately.

So here's our plan for the rest of the week. Tonight at 6ish Mom, Kenny, Colby and I will go to Covington, spend the night at a hotel. Colby has an appointment at 9:30 tomorrow morning and also 2:00 tomorrow afternoon (Hematology). Come home. Rest up on Thursday. Out with my BFF for dinner Thursday night. Work Friday and Saturday. That's as far as I've gotten.

Sometimes, not all the time trust me, it's nice having a nurse around here. Nice to have another adult to BS with. So last night the nurse and I got to talking about when Colby's VEPTR surgery may or may not be. Honestly, I just don't have a clue right now. I jokingly said yeah, we should start taking bets. She laughed and said, yeah you should. So I looked and her and she looked at me and we said yep, let's do it. So we now have 30 scraps of paper in a Spongebob hat, each one labeled for a day in June. For $1 per chance, you can draw a date. If surgery is on that date, you're the winna winna chicken dinna. If he doesn't have surgery in June, we'll do another pot for July and the money will roll over. You may call it sick and twisted to take bets on when my son is going to have major spine surgery. I just call it some silly way to keep my sanity and find some small bit of humor in this jacked up mess.  

Time to start getting Colby up for the day and start packing up the van for yet another fabulous Cincinnati adventure. Bye for now. 

TGIF - WHAT'S THAT?

Once upon a time there was a stressed out single mama. She spent much of her time and effort planning and making arrangements for the wonderfully sweet, handsome boy, only to have to re-plan and rearrange on an almost daily basis. Then she went crazy. The end.

This is pretty much how I feel at the moment. Colby did not test positive for von Willebrand's, meaning his surgery has been POSTPONED until further notice. Don't ask me when he'll have surgery, I don't know. Don't ask me how many further labs/tests he needs, I don't know. Don't ask me what I'm going to do about getting him back in school, nursing, going back to work, etc. I don't know. See a repeating theme here?

This is what I do know. We're taking Colby up to Cincy next week. Spending the night Tuesday night because he has an early morning appointment on Wednesday morning. He's having a platelet aggregation study done. Then we wait around (that's always a great time, NOT) and see a hematologist later that day.

Other than that, I'm trying to figure out the rest of it. Of course Colby has been out of school for weeks to keep him healthy pre-surgery. I called the nursing agency that the school system uses to see if they can provide nursing from now until the end of school for him. Waiting to hear from them. Going to call my boss today and see if there are some days I can pick up to work in the next couple weeks, since it's highly unlikely Colby's surgery will be rescheduled that quickly. Also working on getting the nurses around here lined up. One is still on medical leave. One is having various medical issues, going to several doctor appointments and being told to cut back on her hours. One has scheduled vaca for when Colby was supposed to be in the hospital. One was supposed to be here this morning for training at 8AM. It's now 8:22. Sigh. Where's that Bailey's?!

Thank God for my family and friends. My parents have been wonderful in offering to come over and help with Colby. I've been out to lunch or dinner with 3 different friends in the last few days. Just trying to do what it takes to keep my sanity. Been trying to exercise some. Did an aerobics tape yesterday called "Burn and Shape." Yeah well, I don't know how much I'm shaped now, but I sure am burning. Abs, triceps, shoulders and hamstrings all are killing me today.

I've been following the boy who changed surgery dates with Colby. His mama has been updating regularly. He's doing well. Very well. Already out of PICU and down to the TCC. Yay! So glad to hear. We're sending him continued get well vibes and prayers.

Time to start getting kid up. And call Hematology because I have questions about our appointment next week. And call and reorder 3 of Colby's prescriptions. And call my boss to line up a work schedule. And call nursing agencies to line up nurses. Oh goodie. TGIF my big toe! I'm just waiting for 2:00 to get here. My mom bought me a massage for Mother's Day and it's scheduled for today. Can't wait! More later, peeps. 

POST MOM'S DAY/CINCY LABS UPDATE

Started Sunday with some yummy Bailey's in my coffee. I thought what the heck, it's Mother's Day, I get what I want. Don't judge me. Gave Colby his morning meds, then decided to go ahead and get my shower. Heard this noise and I was like, what the crap is that? It was Colby's feeding pump, but of course I had turned that off and disconnected it to give him his meds. Right? Jump out of the shower, wrap up in a towel to go check it out. Sure enough I had disconnected the feeding bag from Colby's extension, but did NOT turn the pump off. So there was icky, stinky, thick, nastyass foodstuff oozing on Colby's blanket, arm and Dream Pillow. I was tempted to ditch the coffee and just stick with the Bailey's, but I didn't. Wiped up the mess in Colby's bed, got back in the shower, and moved on with our morning.

Decided I would go to noon Mass while Colby's dad was here with for his weekly 3-hour visitation. Put on a cute denim dress I had bought (love, love Burlington Coat Factory). Then I realized it had teeny, tiny belt loops on it, but when I bought it, no belt. Perfect. No problem I thought. I'll just dash into K-Mart, find a cute little belt to go with the dress/the rest of my outfit, and bing bang boom, I'll be off to Mass. They had 12,000 belts there, but not one was what I needed. They were either too big for the belt loops, or were just flat out ugly. New plan. Buy a $2.79 pair of scissors, cut the belt loops off while sitting in the van in K-Mart parking lot, proceed to Mass. Problem solved. Ate a candy bar for brunch on the way to Mass. Do NOT judge me. It was Mother's Day, I got to do some things I wanted to do.

Colby and I hung out the rest of the afternoon. Just kickin' it on the couch. Watched a little Spongebob, watched a little Reds baseball. Then we headed to Dairy Queen to see my mom for Mother's Day. My mom is a tiny, petite woman, but she can inhale a banana split like nobody you've ever seen! Maybe that's where I get my adoration for ice cream, it's genetic? So my Mother's Day was pretty much darn perfect. Nothing fancy or over the top. Just a laid back "uneventful" day. Got to spend some time with the world's most loving, sweet, generous, supportive mama, MINE. Every day I have with my sweet boy is Mother's Day as far as I'm concerned. I know that spending 10 Mother's Days with Colby is nothing short of a miracle, and I'm incredibly lucky and thankful for that.

Went to work yesterday. While I was gone Colby had PT and home/hospital schooling. Those 2 things wore him out. By the time I got home, he was practically asleep on the couch. The night nurse and I gave him a bath. Same old, same old around here for the most part. The ortho nurse called me at work. Colby's PFA levels are back within normal range, so that's good news. However, the lab result we're waiting on, the vonWillenbrand's, is not back yet. Sugar. Of course it's not. So I'm giving Cincy until 2:00 today to call and let me know the results, or I'll call them. Here's the new plan. If Colby does have vonWillenbrand's, we go to Cincy tomorrow. We'll see Hematology and the doc will give Colby a prescription for some medication to treat the VW. Then we go up this Sunday with VEPTR surgery on Monday the 20th. If Colby doesn't have VW, we have an appointment to see Hematology next week, although I'm going to reschedule that. I didn't realize they scheduled us to be there at 8:30 a.m., and that's just crazy talk. Not gonna happen. Colby will have a platelet aggregation study done. Not really sure what that involves. Will cross that bridge when we come to it. Hoping it doesn't come to that. Really, really hoping it doesn't come to that, so we can get this surgery over with as planned. Please hope and send good blood-clotting vibes along with us. Off to give Colby his morning medications. Don't worry, I'll double/triple check that the feeding pump is off! 

THIS IS SO NOT COOL

Okay people, listen up. There's a lot going on around here. Some changes to our plans. Can you imagine? Something we planned, not going as planned. I swear, there are days I wonder why I even bother.

Got a call Thursday at 4:30 from the ortho nurse at Cincinnati. I could tell immediately by the sound of her voice this wasn't no social call. Colby's labs were abnormal. More specifically, his clotting and coagulation labs. Most specifically, they wanted to redo labs for PFA epi, PFA/ADP, a TEG, and do a vonWillenbrand's profile. For some unknown reason, she insisted that we drive all the way up there to have these labs drawn. I guess doing it there would guarantee the fastest results. I won't go into all the details, but the day was a total clusterfuck mess. It was awful. What should have taken less than an hour to accomplish, well, we were there for 4 hours. By the end of the day, I was so mad I was shaking. I didn't know whether to cry, scream, throw something, or all the above. The ride home wasn't any picnic either. Got stuck in freakin' traffic because of a freakin overturned semi. I was never so glad for a day to be over in my life.

Okay, I digressed a bit there. Sorry. So what does all this abnormal lab stuff mean? For starters, it means we need more time to get these new results back. The ortho nurse called another family whose son was having the same surgery, same surgeon, on May 20. They were kind enough to change dates with us. He'll take Colby's date of the 15th and Colby will take his spot on the 20th. Best case scenario at this point, Colby will test positive for the vonWillenbrand's. It's a pretty easy fix. They just give Colby some sort of medication before surgery and we can proceed on the 20th. If it turns out he doesn't have VW, then things become even more clusterfucky than I even care to think about. If he doesn't test positive for VW, then they will want to do a platelet aggregation test on Colby. There is only one doctor at Cincy who does this test, and it takes 6 weeks or so to get the results. The ortho nurse looked ahead at the surgeon's calendar. His next availability: September. Yep, I'm not fucking kidding, she told me either Colby has VEPTR surgery on May 20 or it will get pushed back to September. Honestly folks, if that happens, I'm pretty sure I'll have a breakdown/meltdown/conniption fit/visit to the funny farm.

So that's where we are, in a place I totally didn't see coming. In a place I flat out don't want to be. I had to work today, so I haven't had a lot of extra time to research these tests. Any way you slice it, it's a load of crap. They are supposed to call me Monday or Tuesday with preliminary results of the labs Colby had done yesterday. I'll pass along more info as I have it.

COLDS OVER, MOVING FORWARD - 10 MORE DAYS, THEN CINCY OR BUST

I don't know what the heck we've been doing around lately, just that it's been busy, busy. First a Colby update. He's much better. Thank you everyone who checked in on us, prayed or sent get well wishes. It all worked! Well, those things, along with antibiotics, and around-the-clock cough treatments. He'll finish up his antibiotic tomorrow. Sometimes his cough treatments are still a little rough, but nothing like they were a few days ago. Been able to space them out a little more, too. I got up at 2AM and gave him a treatment. I did another one at 9AM. So yes, that's a great improvement, because earlier in this illness he could barely make 3 or 4 hours without struggling. Can you imagine having a stuffy head or a snotty nose and not being able to clear it on your own? I know he has been miserable over the last few days. So thankful he has turned the corner.

Did I mention I've been sick with this crap, too? Oh yeah, taking care of a sick kid when you're sick yourself, good stuff. Last weekend was the worst for me. I was lying on the couch Sunday night and the nurse says, "hey Sniffy, why don't you just get up and go to bed?!" Lol, so I did. By Tuesday afternoon I felt human again. Mucinex-D is da bomb, baby. Took it, along with as much water as I could stand to drink, and let the snot floweth forth. Not to mention it makes you feel like you've had 18 cups of coffee. Sleep? Who needs sleep?

Thursday Colby had pre-surgery appointments in Cincinnati. Grandma and Grandpa Kenny were supposed to take us this time. But guess what, my mama ended up sick. Seriously, who hasn't been sick around here lately? Kenny was still willing to take us up, God love him. I'm not kidding, I was terrified. Colby had spent maybe a total of 2 hours up in his chair over a week's time. And we're going to take him on a 2-hour ride up to Cincy, go through 3 or 4 hours of appointments, then the 2-hour trip home? Yeah, that was a disaster waiting to happen. But guess what? It was one of the easiest trips we've ever taken to Cincy. Everything went off without a hitch. Colby did great on the way up and on the way back. Never saw his oxygen drop below 96, and trust me, I was on high alert. First we went to the lab and got his MRSA screening. Gee, wonder how that will test?! Then we went to Cardiology. Colby had an echo done, which he didn't much care for. Then an EKG. Pulmonary came around to check on things. Then the cardiologist. He said Colby's heart was in great shape, and we didn't need to see Cardiology for 2 years. Yay, giddy up, thank goodness. Then the VAT came in, accessed Colby's port, and drew his labs. She was like a freakin' vampire. I've never seen so much blood drawn at once from that boy! Then the nurse pokes her head in the door and says, "You're free to go." We said, "Later!!" Hit a little bit of traffic getting out of Cincy, but not too bad. Rolled in to home around 7:00. So glad to have these pre-surgery appointments behind us now. As far as I know, everything is still a go for surgery on the 15th. Not sure if that's good or bad, haha.

Colby and I are kicking back and resting today. We had nursing yesterday for a few hours. I went walking and to the grocery while she was here. We got Colby up in his chair. Took him outside to drive a while. He did great until he didn't do great. Ran into the back on the neighbor's car, got put in timeout. He worked on his eye gaze last night and guess what he said. This is so exciting…a whole sentence! I was in the kitchen. Then went to see what he was up to on eye gaze. I was reading through the choices he made, and sure enough, there it was, a complete sentence. You can guess what it said, "I want to watch Spongebob." Of course. So proud of him doing that. Great progress, great job, Colby.

We have no nurse today. Imagine that! Derby Day in Louisville and we don't have nursing. Hmmmmm. But that's okay, we're managing just fine. Both of us got caught up on some much-needed sleep. Been switching back and forth between watching Spongebob and the races. Better run, time for Colby's next feeding. Plus I need some lunch. More Colby and Super Mama news as it develops.