WHAT DAY IS IT? POST OP DAY 5 IS ALL I KNOW

Well, you know Colby. He does his thing on his time. We are STILL in the PICU, with no discussion of leaving anytime soon. It's amazing at how quickly things can turn around. A lot has happened in the last couple of days. Luckily I have my notes in front of me because right now not all my brain cells are firing. Not that they ever do, just really lagging today.

So by Saturday afternoon, Colby's tummy had decided hey, I'm not in the mood to work. They call it an ileus. I call it miserable for Colby. His stomach became so distended, I couldn't believe how bloated and stretch out his tummy looked. Poor kid, being bloated, having gas pain and being constipated will make you miserable, let alone having surgery a couple days before. So we had to throw things in reverse. Took Colby off feeds, put him back on TPN. Backed off giving him meds by g-tube, went back to all IV meds. Now we wait. Wait for his tummy to de-ileus itself and start working again. I've tried home remedies-warm compresses, rubbing his belly. I even had Child Life bring me a little vibrating toy that I've been running over his belly. I moved his legs a little, or I should say leg. They also reinserted his Foley catheter, so with that running down one leg I was scared to do much moving/range of motion. Long story short, Colby has had 2 good bowel movements on his own today. I know everyone is probably tired of hearing about Colby's poop, but trust me, the PICU takes poop very seriously! His stomach is still distended today, but is looking much better. In other PICU news, they did a respiratory culture that shows Colby is growing gram rod negative cultures. Booooo, time for antibiotics. So trust me, once he has a couple doses of these antibiotics, the no pooping will no longer be any issue.

Colby gave us quite a scare last night. During his CoughAssist treatment, he started getting that funny look about him. I knew things were getting ready to hit the fan quickly. Sure enough, his oxygen dropped down into the 30's. Really, Colby, really? Is all that necessary at the moment?! And of course it was during a shift with a respiratory therapist who had never worked with Colby. She was moving way too slow for me. Trying to do this, or that, and I was like, uh honey, listen to me, we're doing a trach change, NOW. I know my kid. I've been with him 2 years with a trach, she's been with him 20 minutes. And if you think I won't shove somebody out of the way to get to my son to help him...well, we all know I would and yes, I practically did. So yes, his lungs are a little junky, but today he has breezed through his cough treatments. I think this is the price we pay for him having to lie completely flat and being unable to do IPV for 3 days. Just a lot of old junk that needs worked up and out. We're increasing his cough treatments from 3x daily to 4x daily in an attempt to clear him out.

What else? Ortho came by yesterday and took out the HemoVac. Love getting tubes pulled out, not put in, Colby. They also removed the Foley today. I'm sure Colby was pleased about that. Colby is on no narcotics for pain management. He can get an as-needed dose of morphine if I think he needs it. He sat up in his bed at 45 degrees this morning for a little over an hour. He sat up in his chair today for almost an hour and a half. They've had to put some TPA in his PICC. I swear, this child is the world's worst for keeping and getting vascular access. We started out with a port, PICC, arterial and 2 peripherals. Now we're down to his port and a questionable PICC. They may run some more TPA through it tonight.

No mention of when we'll get down to the TCC. Not until his ileus resolves on its own and he can once again start home feeds. We (my mom is here with us currently) have been lucky enough to get a sleep room the last 2 nights in a row. Don't know if we'll get one tonight or not, but you can bet I signed up for one. Still no word from Ronnie Donnie House. Booooo. I hear it's a longer waiting list to get in there than it was when we were here 2 years ago. Double boooooo. But what can you do? Nothing. Just wait our turn I suppose.

Overall I still think Colby is doing well. Sure do wish his GI system would get with the program. A little progress today, but not enough for me of course. I want to be able to walk out of this Family Resource Center, roll Colby's hospital bed out of that PICU, and get the hell on out of here. All in good time, right? All on Colby's time, that's for sure. More later, blog readers. Thanks again for all the calls, texts, prayers and good thoughts coming our way. It means a lot to my family and me. I'll give that sweet boy's face get well kisses from everyone. Bye for now.

WE ASKED FOR IT, WE GOT IT!

Holy bowel movements, Batman! About 5AM this morning, wham, bam, thank you ma'am, Colby had a nice big poopy for us. So you can mark take a dump off the "to do" list. Let's see, what else can we talk about besides poop? Let's talk about pee! Colby went 9 hours yesterday without peeing. So they did a 1-time dose of Lasix. I'm not a fan of it at all. Usually I fight it because Colby always holds fluids while in the hospital. But the 9-hour thing sort of scared me, so I agreed to it. Okay, enough of that talk.

Overall Colby is chugging right along, making great progress. I don't have my notes here in front of me, so let's see if I can remember and get correct what was discussed in this morning's rounds. Colby has been fever free for a while now. His blood cultures have come back negative so far, so more than likely the fevers were just post-surgery trauma. They have discontinued and unhooked his morphine pump. I think the meds for muscle spasms (valium and Robaxin) will end today or tomorrow. For pain management, Colby is on IV Motrin and will start oxycodone. The pain management team said oxy is better than morphine in that it lasts longer. I think Colby's pain is being managed well. Of course he's uncomfortable but I don't think he's suffering in pain at all. He has been sleeping pretty much all morning. Not sure if that's because he didn't get a ton of sleep through the night (too busy pooping) or if it's the meds.

First we were told we would be going to the TCC today. Okay, fine, I knew that was coming soon. Then I got word we were waiting because Pulmonary on the TCC didn't think Colby was ready. Then I got word the only thing we were waiting on was the PICU team to finish rounding to sign off on the transfer. So the word is I don't freakin' know. I'm just sitting tight waiting for further instructions. As far as I'm concerned, we can stay in the PICU all dang day. Colby has one of my favorite nurses. She has taken care of Colby for years and she's really, really good. Knows her stuff. At 4:40PM today (that's how the surgeon wrote it, not kidding) we can start getting Colby up. Just up in bed, not up in his wheelchair. That will probably happen tomorrow. We'll start out sitting him up 30 degrees, then we can increase that to 45.

My mom is on her way up. She came up the day of surgery, but my dad has been here with us since Tuesday and now they're trading off for a few days. I have the world's best parents! Hands down! I see it's raining outside so I hope Mom is almost here. She doesn't like driving in the rain. Or the dark. Or on on-ramps. Or off-ramps. Or the interstate. I'm sure Dad can't wait to get out of here for a while. You can only work so many crossword puzzles before you start going a little loco.

We had our first visitors last night. My brother, sister-in-law and niece came over for a few. They brought Colby a SpongeBob balloon and The Croods DVD. They brought me a Nora Roberts book and some chocolates, woo hoo! I think Colby's dad will be here tomorrow for a visit. Oh super goodie. I'm still spacing out those Oreo mint crèmes, but they are sooooo good. I really could eat the whole pack at once.

That's it for now. I better get upstairs and see how boy is doing. I sat outside and ate my lunch. No one else was out there. It wasn't raining yet, so the weather was cool/perfect and I had a small moment of peace of quiet. You don't get that very often when your kid is in the hospital. I savored every second of it. Back to the PICU, probably the TCC soon. Not really sure. But wherever we are, Colby is doing awesomely awesome. So stinking amazed but that boy every single day.

PAIN AND POOP

These are the 2 main issues we discussed in rounds this morning, among other things. First, pain. Of course Colby is in pain, but I don't think he's in excruciating pain. I'm going by his heart rate and whether or not he is crying/whining/wincing, etc. Really what else do I have to go on? Currently his heart rate hovers around 120. That's 10-20 points higher than normal. I mentioned this in rounds. They said that's perfectly normal. No matter if his pain is controlled, he has no fever, he is halfway comfortable, his body has still had a major trauma and this is his body's reaction to that trauma. Okay, that made me feel better. A couple of hours ago his HR dropped to 105-110, and that made me a very happy mama. So the new pain management plan is as follows: discontinue the continuous morphine, but have the button available to provide an ASAP dose if necessary. Like when we're changing him, turning him, he's getting his CoughAssist treatment, etc. He is getting scheduled valium (every 6 hours) and Robaxin (every 8 hours) to control muscle spasms. They have also ordered IV Motrin, which is good because Colby's fever likes to come and go. A couple of hours ago it reached 39 Celsius, which is around 102 I think. Nope, ain't happening. So I stripped off his hospital gown and started putting cold rags on him. We also applied some ice packs to his groin area, which I'm sure Colby just loved. But no way am I going to let him lie there with a fever if I can help it. At last check, his fever wasn't back to 37.0, but getting closer.

Next area to address is pooping, AKA bowel movements (BM). I'm surprised they expect Colby to have a BM. What does he have to poop out?! He's been on TPN since Tuesday night. We just started his normal feeds last night but at a very slow rate, 10 mL/hour, and kept him on TPN. At noon we increased his feeds to 15 mL/hour and at 4:00 we increased the feeds to 20 mL/hour. Colby usually tolerates starting back on his feeds well. I don't want to rush him, though, so I may have them stay at 20 mL/hour for a while. We also gave Colby an enema today. Super fun for him I'm sure. He's had 2 sorry excuses for a BM. Come on Colby, we're going to have to do better than that, or you'll be getting another super fun enema.

Then came my heart attack moment of the day. Colby's cute little nurse bee-bops in and says, well, you all are getting transferred back to TCC. WTH?! Hold the phone! Good Lord please no! And are you freaking kidding me?! I think Colby is doing fabulous, just not that fabulous. He's been doing CoughAssist but not IPV, and I think he needs to do 1 IPV treatment before we head down to TCC. Plus, the child just had his back cut open from neck to butt for crap's sake! Then she came back in and said no, false alarm, you all are staying in PICU for now. I didn't know whether to hug her for telling me that, or throat punch her for making me panic in the first place. I can almost guarantee we'll be heading down to TCC tomorrow.

So that's the post surgery scoop for now. Baby steps of progress being made. Colby also got his Foley taken out today. Like I said, keep taking out tubes and not sticking in more is a good thing. Every person that looks at Colby's incision says it looks "great" "wonderful" "fantastic" etc. When the surgeon stopped by today, he said Colby wouldn't be fitted for a new back brace, that he didn't need one. I said seriously? Even for a couple of months or so during recovery? He said nope. I was very surprised to hear that. I thought once SMA kiddos had rib and/or spine surgery of any kind, they at least needed a new back brace for a while. Guess not?

I'd love to share some funny little story that has happened since we've been here, but I got nothing. I spend 22-23 hours or so a day in Colby's room, so really what fun stuff is going to happen there? They still haven't called us from Ronnie Donnie with a room. It would be really nice if we could get in over the weekend, especially since it looks like we're going to the TCC and they don't have sleep rooms. Last night we didn't get a sleep room. Colby was doing so well I was comfortable with my dad leaving. So he went to a nearby hotel and I stayed in the room with Colby. I'm not getting a ton of sleep overnight, but have been able to get in a couple good naps during the day. So I'm rested enough for the most part, not too bitchy or whiny. Just my normal, haha.

Keep those prayers and positive thoughts coming, folks. They're working. Colby is doing so much better than I anticipated. Not that I don't think he's a total freakin' stud, I just had nightmares of how this surgery and hospital stay were going to go. And you can't really blame me, we've had some Jim-dandy sucky ones. Maybe this one will be the exception to the rule. It's looking that way and I certainly hope so! More soon.   

LONGER POST SURGERY UPDATE

Yesterday Colby's surgery was scheduled for 9:15, and guess what? It pretty much did. I got up at 5:00, took my shower. The nurse came in and helped me give Colby his final special soap bath. Then we gave him his IPV and CoughAssist treatments. Thought it was best to get him cleaned out for surgery. Then the gang rolled in to see Colby before he took off to the OR. My dad was already here with us, but then my mom and stepdad, along with Colby's dad and stepmom, came up for the surgery also. We all got to spend some time with Colby. He was laid back and cool as a cucumber. Again, seriously, he amazes me. They came and got us around 8:30. Colby's dad, grandpa and I went with Colby down to surgery holding. That place was a zoo. At that point I thought it would be a good idea if Colby got some "happy juice" so I had them give him a dose of versed. The surgeon came in and talked to us briefly. Said the surgery would take approx. 4 hours. Whaaaaaat?! That's not what we were told, first I've heard of the operation taking that long. But whatever I suppose. Obviously it takes longer for a final fusion. Wish someone had mentioned that prior to 15 minutes before going into surgery.

We kissed and kissed all over Colby. Told him how much we loved him. Told him how brave and cool and awesome he was, and just like that, my sweet boy was whisked away to surgery. Then the waiting game began. They started to surgery at 10:52. My BFF came up and sat with us during surgery. How wonderfully thoughtful is she? Very! And she brought me snacks! Trying to stay out of the Oreo fudge mint crèmes, but come on now, they are just too good. They updated us once and said Colby's surgery was still in process and things were going well. Then they updated us again and said they were getting ready to close Colby. Seemed like forever between then and when the surgeon came out to talk to us. For the most part, the surgery went as expected. Colby did great. He did have to have 2 units of blood, which the surgeon said was not uncommon. However, they did nick a sac at the bottom of his spine. Whaaaaaat?! The surgeon didn't seemed worried about it. Whaaaaaat?! The precaution we have to take for that is Colby has to stay completely flat for 72 hours so the sac can heal. Super duper. Then they sent us upstairs to PICU to wait on Colby to get from surgery to intensive care.

And we waited. And waited some more. Like my dad says, hurry up and wait, hurry up and wait. A lot of that goes on when you're in the hospital. When I first saw Colby, his face was swollen, as they said it was be. But he didn't look as badly as I thought he was. But we had some other issues to deal with first. His heart rate was 145. Not cool. Plus I could hear the gurgling in his mouth and trach, he needed suctioning badly. So Mama jumped in and started helping wherever I could. I said, uh yeah, he needs pain meds, like NOW. That helped get his heart rate down considerably. Then once we suctioned him out well, that seemed to help too. I liked our nurses yesterday. They all seemed to know and understand what was going on. No major miscommunications or screw-ups as of yet. Thank ya Jesus. Our night was fairly uneventful (our favorite word) besides dealing with Colby's pain issues. The Pain Team had recommended a PCA (pain pump) but they didn't want to put one in yet because Colby's blood pressure was a little low post surgery. So overnight he got valium and Robaxin for muscle spasms and Fentanyl for pain. Fentanyl is great in that it starts working quickly, but crappy in that it also wears off quickly. As a rule, it lasts for 2 hours. Almost like clockwork, at the 1.5 hour mark, Colby started whining, crying and his heart rate and blood pressure would start to rise. Again, the overnight nurses were great. Knew exactly what to look for and took great care of my kiddo. I was up every hour or so helping them access him, move him, etc. Of course Colby is in pain, but overall I would say he is doing exceptionally well, considering what he has been through in the last couple of days. What a trooper!

In rounds this morning we got a lot of stuff discussed and figured out. They took out Colby's arterial line. It's always good when tubes and wires start coming out of your kid and not in. They are going to access his port and get rid of 1 of the 2 peripheral IV's they inserted yesterday during surgery when he was under. And he's getting the PCA (pain pump) with some major happy juice running continuously - morphine. I've been to lunch, now I'm in the Family Resource Center doing this update. Anxious to see how he's doing when I get back upstairs. Hopefully he's zonked out and resting with that creepy one-eye-open-the-other-closed look he gets when he's in a deep sleep. Also really hoping I can get in a power nap. I'm tired but not at that zombie exhausted stage yet.

That's it for now. I'm happy as can be as to how things are going. I know so many people are praying for us and thinking of us. Thank you, thank you, thank you. It's much appreciated and I can feel the love up here in Cincy. Seriously, I can. Thanks to all who support us in so many ways. Surgery over, time to get this boy better and get us home!

SMALL POST SURGERY UPDATE

I could sum up this update easily - my son is incredibly awesome and amazing. That's all you really need to know. The end and good night.

It's 1:30AM. We're in the PICU and I'm typing on the tiny keyboard that goes to my iPad. I'm doing my best that's all I can say. We were supposed to be at the hospital yesterday by noon. We got here at 12:01. Admitting was a breeze. Once we got up to the TCC it was nonstop from then. By the time we got him out of his wheelchair and settled in a bit, it was time to go for his PICC. There had been much debate on whether or not or why he needed a PICC if he has a port. We finally got the answer. Colby's port if pretty much in the middle of his chest. Surgery of course was taking place with Colby face down, spine up, and they wouldn't be able to get to the port. So there you have it. No way around  it, Ortho said he absolutely needed a PICC. It was a nightmare, as I knew it would be. Took 2.5 hours and 3 attempts. They finally ended up putting it in his leg. I had them give him some versed before we went down. I asked for some too, they wouldn't do it haha. He fell asleep during the procedure! Who does that? The rest of the night consisted of giving Colby another special soap bath and trying to get some rest.

So there's yesterday's update. And honestly, I'm too tired to give today's. Surgery was on time today and everything went well. That's it in a nutshell. I'll give more details tomorrow after a little sleep. They just gave Colby his Valium so he's probably going to konk out in a few minutes. I should try to get some sleep, too.

Thank you to everyone who sent prayers and good vibes our way. It worked! Right now I couldn't be happier with how thing are going. Tomorrow (or today actually) could hold something different for Colby, but so far he's done well. Again, I must say, I sure do have an awesomely awesome sweet boy! More soon, sleepy time now.

ALMOST SHOW TIME BOYS AND GIRLS

We had a great weekend. Saturday Colby and I both got haircuts. The nurse and I cut his here at home - really, really short. I did a little get-ready-for-the-hospital packing. We hung out and relaxed the rest of the day/evening. Sunday I went out with friends for brunch and Bloody Marys. Just seemed like the thing to do. The nursing agency sent out another new nurse for a meet and greet and orientation. Really? How many nurses are we going to have before we have enough? I can tell you this. We have 5 currently, but they're all part time, and not all of our shifts are filled. This would be fine with me except we'll be home from surgery before you know it, and we'll NEED the help then. I won't just want nursing help. I have no idea if we'll be granted extra nursing hours or not for a while after we get home. And I have no idea who will be filling the shifts. Oh well, I'll worry about that later when I have to worry about it.

Today was spent packing for the hospital. And holy moly, there's a lot to pack. But I think we're ready! For the most part. There are things that always have to wait for the morning of, until you use them one last time, but overall we're ready to get this party started. Not much else to say I guess. Colby is tucked into bed. The nurse just walked out. Time to take a long bubble bath with the wonderful peppermint and eucalyptus, stress-relieving bath stuff my BFF gave me. Up early tomorrow. Have to be at Cincinnati Children's by noon. Oh goodie. Actually I'm so ready to get this over with, you have no idea. Colby is going to do great, I know he is. He's one tough kid. Of course I'll be blogging frequently, since there is little else to do while your kid is in the hospital. Thanks to everyone who has called, texted or come over in the last few days. I know Colby has the prayers and good vibes of many wonderful people coming his way. Seriously, thank you all so much for caring and loving us. I believe in the power of prayer, I really do. Go, Colby, go. You got this, sweet boy.  

IT'S FINALLY FRIDAY - WOO HOO AND YEE HAW

Colby has this reoccurring spot on his left ear. Most of the time it just looks like a callus. Every now and then it looks like more of a bed sore. It'll get bigger, goopy, open, nasty. I know, TMI. Well, you guessed it, the goopy nastiness is back. Popped up several days ago, and I've been freaking the freak out ever since. If Cincinnati thinks it's significant, Colby's surgery could get cancelled due to his history of MRSA. We've been religious about cleaning it, putting medication on it, trying to get it to heal. It looks much better, but we only have 3 more days before we head to Cincy Children's. Is there a patron saint of ear sores?! We really, really, really need that thing to clear up completely before Tuesday.

I've been trying to have positive thoughts about this surgery. First of all, thank God for Cincinnati Children's Hospital. I know sometimes there are still screw-ups, but there is no other place I would want to take Colby for treatment/surgery. Another good thing, Colby will be a one-and-done. One spine surgery, not multiple surgeries/lengthenings. So that's another positive, right? I have super fantastic parents who will be there with us every step of the way. I hate dragging them through all this, but sooooo thankful they're willing to help. I couldn't imagine sitting in that hospital with Colby by myself for days at a time. And with any luck, Colby will be able to get rid of that stinking heavy, uncomfortable back brace. That will be a huge plus. Last but not least, I've had wonderful support from other SMA patients and parents who have been through similar surgeries. Wanted to give a shout out Thank You to all the SMA mommies who have given me information and shared their kiddos' experiences. So yes, I'm a complete nervous wreck. I'm scared something will happen and the surgery will get called off. I'm scared of Colby getting some nasty infection, C-diff, pseudomonas or some other nasty hospital bug while we are there. I'm scared of the pain he will experience during recovery. However, I'm trying to also find the good/benefits in all this. Trying, really trying.

Speaking of spine surgery, the ortho nurse called today. They've moved Colby's surgery time from 11AM to 9:15AM. That will matter to the people who are travelling up to be there during surgery, but really doesn't affect Colby and me. We have to go up on Tuesday so we'll already be there. I think it's good they've moved the time up some, less waiting around on the morning of. See, another positive.   

I managed to get through working 5 days in a row without breaking a machine or having some sort of meltdown while in my office. I should get a smiley face sticker for those feats, since I usually manage to do both. But I kept my cool, stayed focused, and packed pills like a mad fool. Not sure when I'll be able to get back to work. It'll all depend on when we get home from the hospital and how Colby's recovery is going.

The nurse just got finished with Colby's night routine, so I'm going to read to him for a bit before it's sleepy time. Our latest reading adventure is a Hardy Boys mystery. I'll text later in the weekend and let you know if my nerves are still holding up. I'm thinking no, but we'll see. Tomorrow we get to sleep in and I can't wait. Sleep in goooooood and we better get all we can in the next few days, 84 hours to be exact, not that I'm counting.

THIS WEEK IS MORE THAN HALF OVER - I THINK I CAN, I THINK I CAN

I'm trudging through the week. That stupid headache I had didn't go away until Monday afternoon. That night Colby and I went over and had dinner with his nutritionist. She and I have become friends over the years. She is one of the sweetest people I've ever known, and you can't have too many of those types of individuals around. Plus she offered to get us Panera, so heck yeah I was in. Hello, Fuji apple salad! No onions, no tomatoes, of course.

The nursing agency is trying to jack around with Colby's schedule, and I'm not liking it one bit. The new day nurse was supposed to work Mon, Wed, Thurs and Fri this week. They called me last Friday and said they were pulling her from Colby's case on Monday and sending out another of his nurses to work. Yeah, another nurse who has worked nights only and doesn't know Colby's morning routine! But I agreed to it and just went in to work later once I knew the nurse was settled in on Monday. Then the nursing agency tells the day nurse they want to pull her off Colby's case AGAIN on Friday. WTH?! She was assigned to be Colby's full time day shift nurse. How is she supposed to learn Colby's routine and get better at taking care of him unless she spends more time with him? She stood up to the nursing agency and said absolutely not. She said you either send me to Colby's like I was originally scheduled, or I'm not working anywhere on Friday. Good for her. She's tired of them jacking her around, too. So now we're back to the original schedule and she'll be here the rest of the week.

Tuesday Mom and I took Colby swimming. That'll be his last time for quite a while. (Big sigh). Then once the night nurse got here, I headed in to work. Nothing like overwrapping hemorrhoid suppositories in a cold corner office at 9:00 at night. I was thinking ah yes, this is the life indeed. Actually I was really thinking thank goodness I have a job with flexible hours. There are not many places I could work with Colby's schedule, the nurses' schedules, etc. Then once the nurse got here this morning, I was right back to packing those pills. But the work week is half over. I hate leaving Colby, but Lord knows we need the money. Plus I won't be working for a few weeks in the near future, so time to go in to the hospital, pack those pills, and be grateful I have a job.

The spine nurse from Cincinnati Children's called today. She wanted to remind me that it was a week before Colby's surgery and that we needed to start his pre-surgery routine. I got a chuckle out of that. I felt like saying, lady, not only do I know it's 6 days before we go to Cincy, it's also 140 hours pre-surgery! The pre-surgery stuff is no big deal really. We just have to give him a bath every other day with Dyna-Hex antibacterial soap, put Bactroban ointment in his nostrils twice daily, and give him MiraLax to insure he has a BM every day. Even though we don't have to, I'm also putting clean sheets on Colby's bed after his Dyna-Hex baths. If there's anything I can do at all to prevent Colby getting an infection, I'll do it.

Then the conversation got interesting. The spine surgeon was discussing Colby in a pre-surgery meeting of some sort. They have decided to do a "final fusion" on Colby. Usually with spine rod surgery, you have the initial surgery, then have multiple surgeries after that to lengthen the rods as the person grows. Then once you're done growing, or I should say once your torso is done growing, they will go back in and fuse the rods one last time. I was excited because they were going to do this new technology on Colby for the lengthenings where they put in magnetic rods, then use a remote control to lengthen. No additional surgeries to lengthen. Pretty cool, huh? Colby would've been the 2nd patient at Cincy that the surgeon used this procedure. I was very excited that Colby wouldn't need multiple surgeries. Now I guess we don't even have to worry about that. It'll be a one-and-done! I'm trusting the surgeon on this decision. The only experience I have to go on is that of other SMA patients. I do know it's around this age that kiddos start getting their final fusions (Colby will be 12 next month).

So that's the scoop for now. Counting down the days and hours I have to work, and the days and hours before we head out for surgery. Looking forward to seeing friends over the weekend and spending time with my sweet boy. More blogging as soon as I have anything else interesting to say. But you know me, I can always think of something to talk/blog about. Sayonara for now, blog readers.  

CAN'T ALWAYS GET WHAT YOU WANT, CAN YOU?

Friday we (the nurse and I) ran Colby out to the pediatrician here in town. Cincinnati Children's has a pre-procedure form that the pediatrician had to fill out. Kind of a pain in the fanny if you ask me. Colby has already been cleared for surgery by every specialist in Cincy he's ever seen. Oh wait, nobody asked me, so we just did it. Friday night I actually cooked. I made roast and all the fixings. Not a bad effort on my part, I must say. My BFF Kim and her little doggie Kizmo came over for a visit. Trying to squeeze in some girlie visiting time while I can since we're going to be very, very busy and tired for the next few weeks.

Yesterday I worked. Actually I'm working all this week. At first I thought this was a great idea. My boss is on vacation and asked me if I wanted to cover for her. At the time, many weeks ago, it made sense. Make a little extra money, stay busy, keep my mind off Colby's surgery. Now I think it's a crappy idea. Changed my mind! Too bad, too late. I want to stay home, rest, spend time with Colby, pack for our upcoming hospital stay. Too bad, too late, gotta get my butt to work. I'm sure Colby will survive this week better than I will! I want to stay home and take care of him, dangit, did I mention that already? Wednesday we start putting the medication in his nostrils and giving him the baths with the special soap. The medication is twice a day every day and the baths are every other day a week prior to surgery. This is to prevent infections while in the hospital because he has tested positive for staph, both MRSA and ORSA in the recent past.

Today is Father's Day of course. We (nurse, Colby and I) headed out at the butt crack of dawn and had breakfast with Dad. I'm so very lucky to still have my dad here with us. He is the most wonderful dad I ever could have asked for. I've always been a Daddy's girl, and I don't see that changing anytime soon. I used to be the absolute apple of his eye, that is, until Colby came along. Dad adores that sweet boy, and I love seeing them interact together. It's almost like they have their own language - so cute to watch. I'm also very fortunate to have a kind, loving stepdad. Couldn't have custom designed a better one. He's always been there for Colby and me, no matter the need. Then there's Colby dad (insert large eye roll and big sigh.) What can I say? I know he loves Colby. I know it could be worse. He does pay his child support on time, never been late ever. He does come and see Colby, even if it's only 3 hours a week. I know plenty of kiddos who get much less than that from their fathers, which is so sad. However, I will never understand his unwillingness to accept Colby's diagnosis. Dude, it is what it is. Suck it the fuck up and move on. It hurts me to the bone that he only sees what Colby can't do, and doesn't appreciate the things Colby can do. That's too bad. And that's his problem, not mine, anymore. Thank God Colby does have his grandpas around. Poor kid is exposed to way too much estrogen with his mama hovering over him, nurses, teachers and therapists.

Sorry if this blog has typos are grammar errors. I'm fighting a terrible headache. Not sure why, but starting at about 2:00 today my head starting pounding. Luckily I don't get headaches like I used to, just an occasional one. Guess I'm due. But it's free to go away at any time. With that said, I'm closing up this update for now. The nurse is back there giving Colby his cough treatment. She leaves at 10:00, and I'll be in my bed by 10:02. Have to get rested up for this busy upcoming week! 

FOUR HOUR DRIVE - 15 MINUTE APPOINTMENT - LOVE IT

Well, today was a total waste of time and effort. We (my dad and I) took Colby to Cincinnati Children's for his cardiology appointment. It went exactly as I knew it would. We drove 2 hours to the hospital. Spent maybe a total of 15 minutes in Cardiology. Loaded Colby back up in the van and drove 2 hours home. The cardiologist walked in and asked if I had any questions. Uh, no, or I would have asked them weeks ago. We undid Colby's back brace. She listened to Colby's heart. Then she said she reviewed the results of his Echo and EKG. Everything looked good, she would clear Colby for surgery, and we were done. Dad didn't even have time to run down to the cafeteria and grab a sandwich. I'm trying to stay positive. The good news is there is nothing wrong with Colby from a cardiology standpoint. Never has been. The good news is we are one step closer to getting this surgery over. The good news is my dad and I took Colby up there and back with no problems. The good news is I didn't throat punch anybody over having to go to this stupid fucking appointment today. Oh yeah, the good news runneth over.  

Colby is officially on summer break. Can't say this summer is going to be a barrel full of chuckles, but I'm sure he's happy not having to get up at 6:50 to get ready for school. He's been driving me crazy with his eye gaze lately. All he wants to do on it is change channels. Channel after channel after channel. Beep after beep after beep. Oh well, no use in pressuring him into doing something he doesn't want to do, like use the eye gaze for actually communicating his needs/wants. Guess he'll do that one day when he's darn good and ready.

The nursing situation has been interesting around here lately. Since the first week of May, we've had 4 new nurses. One nurse went to school with him. She doesn't work for the nursing agency we use at home, so she's not taking care of Colby anymore. Strike 1. We've had 3 new nurses here at home - 2 of them are working out nicely. The other one was not reliable and brought way too many of her personal issues into my home, so she had to go bye-bye. Strike 2. I hate it for Colby, absolutely hate it. It's stressful for me meeting and training new nurses, but I can't imagine how Colby feels with all these different people taking care of him. So now we have 5 nurses working for us. Hopefully they'll all stay with us for a while. Please, dear Lord, just let them stay around a while. I'm here to tell you, the grass is not always greener. You think, oh, if Amy and Colby had nursing help, their lives would be so much easier. Wrong! Well, somewhat right and somewhat wrong. We've had many issues over the years with the nursing agency and miscommunication, along with some real cra-cra, incompetent, unreliable nurses. But then again, we've had some really good ones. The bunch we have now, they're good.

Last Saturday was a great day. I went for pedicures and lunch with my BFF. We've been trying to do that since her birthday, which was the first week of March. So nice to get away and have some girlie time. Then we had no night nurse, just Colby and me. We started watching The Hobbit. Nobody told me that stinkin' movie is almost 3 hours long. Good grief. We watched about an hour and a half of it. We watched some more of it tonight. Maybe the 3rd time will be the charm in getting it watched.

That's our update for now. Tomorrow we (new nurse and I) take Colby to his pediatrician here in town. He has to fill out some pre-surgery form for Cincinnati Children's. I have a whole binder of info I need to read to get ready for surgery. Haven't started that yet. Me? In denial? Perhaps. Don’t judge me. We've waited and waited for this surgery date to roll around. Now it's here and I'm in complete freak out mode. But tonight I'm also in complete sleepy mode. Going to tuck in kid and get some sleep. Good night blog readers.  

BUSY DAY - SWIMMING, PORT FLUSH, UNWANTED CALLS

One of these days I'm going to blog and say hey, everything went just fine today. No nursing issues, no medical issues, no Apria issues; it was a zippity-doo-dah kind of day.

Well, today is not that day. Actually, yesterday was a pretty darn good day, so I can't complain too much. I got a lot of stuff done at home while Colby was at school - errands, phone calls, laundry, etc. I went and had dinner with one of my favorite SMA mommy friends. She is a hoot, and we always have a great time together. Get us away from our kiddos for a couple of hours, no telling what will happen. But we were very well behaved, for the most part, from what I remember. Just kidding. Sort of.

Okay, here's the poopy part of the week so far. I'm supposed to talk to a specific person at Apria to order Colby's supplies. You know, to make the ordering process easier and free of errors (note sarcasm.) I've called my person and left voice mails both yesterday and today. Still don't have those supplies ordered. Whatever. Oh yeah, this is making the ordering process so much better. Maybe she'll call me tomorrow when I'm at work and we can play phone tag all week long. Sounds super fun, doesn't it?  

Then today I get a call from Cincinnati Children's. NOT the call I was waiting for, saying to bring Colby on up early for surgery. This chick from Neurology calls me and says ummm, Colby hasn't been cleared for surgery from Cardiology. I said ummm, what the crap are you talking about? Colby had an Echo and an EKG done, which were perfectly normal. According to the ortho surgeon's nurse, Colby was cleared for surgery weeks ago. She said well let me check on it. Long story short, we're going to Cincy next week to meet with Cardiology. She apologized over and over, saying it was totally Cincy's fault. She's so sorry, blah, blah, blah. Yeah well, sorry don't sweeten my tea, honey. Am I pissed off to no end? You betcha. Is there anything I can do about it? No. Should I just suck it up, deal with it, and move on? Yep. So that's what we'll do. But I'm still very pissed and upset about it, and I'm pretty sure it's going to stay that way.

But you know what always makes it all better? My sweet boy Colby Michael. He makes my good days better and my bad days bearable. We took him swimming today. I love watching those skinny little legs of his kick around in the water. I know that has to feel so good for him. Then when we got home Walgreen's Infusion came out and did his monthly port flush. When the night nurse got here we gave him a bath. He's so stinking cute. His school nurse said he was driving a lot at school today. Just when I thought he wasn't able to use that switch anymore, he's been doing better with it lately. NEVER count that boy out, that's for sure. He only has 3 days of 6th grade left. Wow, I'm not kidding, this school year has flown by.

Guess that's it for now. Colby's nurse just got done with his night routine. My SMA mommy friend gave him some Captain Underpants books. I'm anxious to see if he'll like them. We finally got The Hobbit read, so now it's time to move on to The Hardy Boys, Harry Potter or maybe Capt. Underpants. Who knows which one Colby will choose. Stay tuned to see which one.  

JUST A LITTLE SUNDAY NIGHT BLOG

The nurse is back there getting Colby ready for bed. There is absolutely nothing on TV. I mean nothin'! Seriously, football season cannot start soon enough. The only thing I can find to watch is Misery, and I've seen that enough times already. Although her vocabulary is impeccable, "You're just another lying ol' dirty birdy." She's getting ready to hobble him. Oh man, that's gotta hurt!

 What's new around here? Not much. Our week greatly improved after a shaky Tuesday and Wednesday. We went to a graduation party yesterday back in my hometown. I debated on whether to take Colby. I'm always worried about accessibility. Not to mention getting him in his wheelchair and loaded up to go anywhere is always quite the time-consuming task. But the weather was perfect, and I didn't see the sense in him lying around in his bed all day. Plus I'll admit it, I'm awfully dang proud of my sweet boy, and I just wanted to show him off a bit. Nothing wrong with that, is there?

Sundays are not exactly my favorite day of the week. They start out great. I watch CBS Sunday Morning while getting Colby up for the day. Love that show. Then Colby's dad shows up for his big 3-hour weekly visit with Colby, and my mood seems to change. Gee, can't imagine why. For the most part we get along, but really, the less I have to deal/communicate with him, the better. So then I leave while they visit. I might go for a walk, do the grocery shopping, go have brunch with friends, go to Mass, anything to give them their time together without me bugging them. Then I come back at 1:30 and leave at 5:00 for Mass. Guess I shouldn't complain. At least Colby's dad comes to see him. At least I have nursing and get to go to Mass. Yeah, it could be worse. Guess I'll stop complaining now.

Can't think of much else to blog about at the moment. I could tell you how worried and stressed I am about Colby's upcoming surgery, but I'm pretty sure people have figured that out by now. Tomorrow I need to follow up with the nursing agency. I've requested "emergency care" for Colby when we get back from his surgery. We get 16 hours/day of nursing currently, but the SMA families I've talked to say we'll need 2 people to help take care of Colby 24/7 for the first couple weeks after we get home. There will be a certain way to change him, transfer him, etc and I'll need help with that apparently. Depending on others totally sucks, but we have to do what we have to do. Colby has 5 more days of school and only 24 days until surgery. Yikes, our summer will be over before you know it. Adios for now, amigos.