HAPPY BIRTHDAY SWEET BOY!!!!!!!

Well, it was an interesting weekend around here, seeing as we had NO nursing. Clueless jackholes at the nursing agency. I've been trying to reach the head poobah there to discuss this issue. I sent him an e-mail early last week informing him we had NO nursing lined up for Saturday and Sunday. I also called him last Friday and left a message that we needed to talk because we had NO nursing all weekend. If Colby wasn't recovering from surgery, I wouldn't be so pissed off, but of course that's not the case. Guess I'll try to call again today and see what we can do about the situation. Yah, can't wait.

But let's focus on the good. Thank the Lord I have wonderful family and friends. Over the weekend I had 6 different people come over and help me with Colby. Both my parents took a "shift" and also some BFF's came to help. THANK YOU, everyone, for coming over in our time of need. For the most part, Colby is back to his normal schedule. I just need help turning/changing Colby and getting him up in his chair. Well, that's not entirely true. My mom and I washed the windows while she was here, all 2 of them. My friend Kim helped me sort through some of Colby's toys while she was here. Hey, you ask what can I do to help around here, I've learned to put you to work!

Colby has left the building! I've been scared to try and take him somewhere because I hear from other SMA peeps that bumps are hard/painful when recovering from spine surgery. But we've been home since the 10th and Colby hasn't got beyond the apartment parking lot in his wheelchair. So we went for it. Sunday I wanted to run an errand, so my friend Amy and I loaded Colby in the van and away we went! We traveled 2.1 miles down the road and back, 4 miles roundtrip. Baby steps you know. Colby did just fine. Then I thought what the heck, let's try it again. So the nurse and I loaded Colby up yesterday and drove the paperwork to Colby's school. They just waited in the van while I ran them inside. That was like almost 7 miles roundtrip. Good job, Colby. He's getting back to "regular Colby" not "post surgery Colby" a little bit more every day. Couldn't be happier to have that surgery mess behind us.

And here's the bestest, coolest, most fabulous news of the day - Colby Michael has turned 12 years old! Happy, Happy Birthday Sweet Boy!! My parents and Colby's dad are coming over some time through the day to see him, but we don't have big blowout plans any time soon. Colby just isn't up to it yet and I haven't had time to pull anything party-related together. I told Colby once he went and saw the surgeon for a follow-up on August 8th, and gets the okie-dokie that things are going fine post surgery, we'll plan a party. Won't be the first time we've had to have an August or September birthday party for Colby. Actually I'm going to plan him a surprise party. We have leftover July 4th fireworks ready to go. Not sure when and where the party will be, but I'm going to make sure it's a Jim-dandy. He deserves it!

That's the update for now. I'm looking forward to spending the day with sweet birthday boy. Last night I ran to Kroger and got him a card, a giant pyramid-shaped balloon, big cupcake (he can eat the icing and the rest of us can split the cake) and some ice cream. Actually, sounds like a birthday celebration after all! I'm busting with love and pride over that kid. Love that sweet, stubborn, funny nuthead to pieces!

HAVE A FLIPPIN FABULOUS FRIDAY, EVERYONE

Colby is still sleeping and the nurse will be here in a few minutes. For now, I'm enjoying my morning coffee. Enjoying the quiet. Thought I would give everyone an update on how it is around here post surgery.

Colby is doing very well, as we would expect nothing less from the awesomely awesome, stud, amazing rock star kid that he is. He wore clothes yesterday for the first time in 3 weeks! The most he has worn since June 24 is his brief and maybe socks. We put some button down pj's on him. They were blue to match his glasses and he looked extremely cute in them, as evidenced by the pic below. We're still being very careful when we turn him, log roll precautions only you know. Still freaks me out to know he has 2 giant rods, multiple screws holding them in place at his neck and pelvis, and one giant incision running down the length of his back. He has been through so much in the last month. Every day I see him more and more like my pre surgery sweet boy. I was reluctant to believe it, but life does return to "normal" after spinal rod surgery, it seems. He still has a ways to go, taking one tiny step and day at a time.  

Colby is back on his home feeding schedule also. I was tired of screwing with Farrell bags, making up new feeding schedules every day. Trying to bolus feed him a little more each day. He has been peeing and pooping just fine and was tolerating his small boluses just fine, so I said screw it, we're going for it. Today will be the 3rd day we're making his food as normal and feeding him on his regular bolus schedule. Another "back to normal" item to check off the list.    

Colby is also sitting up more and more each day. It helps that the weather has been gorgeous around here lately. We take him outside and do some walks around the apartment complex parking lot. Slow and sure wins the race; surgery recovery is a marathon not a sprint. Yesterday he sat up one time for 50 minutes and another time for 40 minutes. I think that's pretty darn impressive. We sure don't miss putting that heavy, cumbersome back brace on Colby, and I'm certain he doesn't miss wearing the damn thing either. He wasn't able to wear his AFO's (ankle/foot orthotics) the whole time he was in the hospital because of his PICC being in his leg. He's back to wearing those again also. See, slowly, ever so slowly, getting back to our normalcy around here.  

The new nurse is working out well. He shows up on time. He dresses professionally. He listens when I show/teach him something. He's sweet to Colby. He takes his time and does his work correctly, yet he's not so slow I want to slap him out of the way and say oh forget it, I'll just do it myself. And yes, I've told nurses before they were going to have to find another gear, slo-mo wasn't going to cut it. He's doing so well, in fact, I decided to go to the pool here at the apartment complex. Haven't set foot inside that pool in 3 summers, so I thought why not. Lord knows I need some sun on these poor old white legs. Headed over to the pool at 2:45. Nurse leaves at 4:00, so that would give me just enough time to take a dip, lay out and dry out, get in a little R&R. The pool is right out the front door. You can throw a rock and hit it in case the nurse and/or Colby needed me. I walk in the gate with my iPod, book and towel, ready to chill out. The lifeguard says, uh, don't get in the pool. I take my lunch break from 3:00-3:30 and the gates will be closed during that time. Can you believe that shit?! The one time in 3 years I decide to enjoy the pool, and that dingbat needs to go on break. So I sat on the picnic table and patiently read my book. She returned promptly at 3:30, and I was able to get in a whole 20 minutes of pool time. Ridiculous. Don't know if I'm even going to bother with it today or not.

That about sums it up. Nurse is here now, back there giving Colby his morning meds. I have various "to do" things to get done today. Pay bills. Mail paperwork for Colby's school. Call and bitch out the nursing agency because we have NO nursing this weekend. Freakin' idiots. If you're out there is home health nursing land and have issues with getting proper nursing coverage, trust me, you're not alone. We deal with it and hear it all the time from other SMA families, too. But I won't let it get me down! I'm so pleased with Colby's recovery, and I'm so happy to have this ordeal behind us. That's all that really matters right now. So I'll keep smiling - TGIF everyone! Count your blessings - God is good!

GLAD TO BE BACK IN THE 'VILLE

We are HOME! And Colby is doing GREAT! And I'm a very HAPPY mama! Of course Colby's recovery is going to be long and slow. Also, it will definitely takes a few days for me to get stuff caught up around here. But let me repeat, we're HOME, and that's the best news I could possibly share/blog with everyone.

The ambulance showed up 10 minutes early on Thursday. Actually they had to wait for us a few minutes to finish up Colby's cough treatment, I needed to sign the discharge papers, etc. We had the same dudes we had the last time we rode home from Cincy in an ambulance. Weird, huh? I remember them because one of them is a very large man (okay, he's fat) with the personality of a doorknob, and the other was a very nice, smiley older man. Luckily Doorknob was the driver and Smiley rode in the back with Colby and me. We had given Colby a dose of valium for the ride home and he did fabulous. I was hoping he would take a little nap in the ambulance, but nope, that wasn't happening.

Then the we've-been-gone-over-two-weeks-now-we're-home madness began. My dad, mom and stepdad came over and brought all the stuff from the hospital. When Colby was in the hospital, he was in contact isolation for MRSA and respiratory contact for pseudomonas. This means that when we are discharged they throw out EVERYTHING in that room. It's unusable because of the isolation precautions. So anything that we're able to use here at home (catheters, saline bullets, syringes, many other items) we packed up and brought home with us. That's one good thing about having a hospital admission, you get lots of extra supplies to use at home. I had a nurse scheduled to be here at 3:00. But wait, it's not that simple. The nursing agency here in town has to "discharge" Colby when he goes in the hospital. When he's discharged from the hospital, the nursing agency has to send out the Director of Nursing to do a resumption of care. Major pain in the patootie. But we jump through the hoops to get the care that Colby needs, don't we? Once we got all that out of the way, the unpacking, organizing, settling in began. And that's what I've been doing ever since it seems.

We had no nurse scheduled yesterday. Can you believe that crap? Long story that deals with one of Colby's nurses failing to communicate and also a goof up on the nursing agency's part. Whatever. Colby's dad stopped by on his way to work and helped me get Colby changed and repositioned. Then my mom did the 10AM to 1PM "shift". She helped me get a lot of housework done. God love her, she is a tiny cleaning dynamo. Colby's speech therapist came and hung out with us during the 1PM to 4PM "shift". We worked on trying to get Colby's eye gaze up and running. No luck. She was nice enough to take it with her to work on it. I just won't have time the next few days to fart around with it - call the company, have them talk me through various things to try, etc.

So it'll be more of the same over the weekend. Take care of sweet boy. Yesterday he sat up in his chair twice, 30 minutes each. Today we'll shoot for sitting up twice, 35 minutes each. We have nursing during the days, and I have friends who were nice enough to volunteer and come spend the night with us. I don't think Colby will have any trouble overnight, but just in case he needs repositioned or changed, I will need help with that since Colby is on log roll precautions during his surgery recovery. Going to try and get to the grocery while the day nurse is here. That'll be my big outing for the day.

Time to make Colby's formula and figure out his feeding schedule for the day. He's not quite ready for bolus feedings. Well, actually he probably is, but I'm taking things nice and slow. No use taking any chances of that tummy of his. Maybe I'll even get in a nap. Yeah right. For some reason that just isn't happening around here. That boy of mine is high maintenance!

TOMORROW, TOMORROW, I LOVE YA, TOMORROW

Because we're out of here. Later, we're blowing this pop stand. See ya, wouldn't want to be ya. We gots to be going on our way now. See ya around like a donut. You get the drift. Ambulance is scheduled to pick us up at 10AM tomorrow morning. Colby is peeing and pooping just fine. Colby is tolerating his home feeds. He's getting all the ingredients that are in his home recipe, along with all the free water. We're running at a continuous rate, and we can start working on boluses when we get home. As far as I'm concerned, it was more important to see if Colby could tolerate all the ingredients than whether or not he could handle a bolus. The TCC went along with this logic. I may try to give him a bolus later today, just to see how he does. Oh no, that means I'll have to use my brain and do some simple math. Don't know if I'm quite up to that or not.

They removed Colby's PICC last night, all 66 cm of it! Holy crud, the nurse kept pulling and pulling that thing out. Unbelievable. In rounds it came up what they should do with Colby's port, since he is now getting everything (food, fluid and meds) through his g-tube. I said don't you dare touch it. Keep it accessed until we are walking out the door. No way am I giving up Colby's access. I know how things can go. We'll de-access his port tomorrow, just as I said, last thing as the ambulance stretcher is about to roll him down the hallway.

Really that's about it. I'm thrilled beyond belief that we're heading home. I'm sure Colby is happier than all of us rolled together. Yes, Colby hit a couple speed bumps over the last 15 days. But overall he has done FABULOUS with this spine fusion surgery. He is a strong, patient, brave, remarkable young man who continues to amaze and make me proud every day. I would say we received 99.9% excellent care while here. There's always going to be a nurse or therapist who rubs me the wrong way or is a total dingbat, but most everyone has been great. So thankful this hospital is here for us. When I read or hear the way other SMA families are treated in other places, it breaks my heart. Been there, done that. I know firsthand what it's like to argue with a doctor, saying no really, if you continue the path you're on, you'll kill my kid. Not this hospital of course, the children's hospital at home. But that's another bunch of stories for another day. Again, just incredibly thankful for all the wonderful staff at Cincinnati Children's. They rock. They took excellent care of my sweet boy, my parents and me.

Colby's discharge is coming with perfect timing. It was time for Mom and Dad to trade their "shifts". Mom left today and Dad came up with the van. That way Colby and I can ride in the ambulance and Dad will be able to use the van to get Colby's power chair home, along with all our other personal belongings. We've had a couple of visitors over the last 2 days, and let me just say THANK YOU, gals, for coming to see us. Really does help break up the monotony of the day.

I've been working on the nursing schedule for the rest of the week. I've learned one nurse is out of town with a death in the family, unsure of when she'll be returning. That would be our only full time day nurse. Well okay, so it's going to be interesting when we get home. But I'll make it work. I always do. We'll manage somehow, I'm guessing with the help of my mom and dad, again. One step at a time, just get us home first, right?

Going to wrap this up now. I told Colby a couple of hours ago, hey Colby, you're going to get your cough treatment at 3:00, then we're going to try and sit you up in your chair. He started whining. I felt horrible. All we can do is try. I'll have them give him a dose of valium before sitting up. And if after a few minutes he's uncomfortable, we'll get him back down. But the more he sits up, the better it is for him, so that's what we're going to do, in moderation of course.

Hopefully tomorrow this update will come from the comforts of my home computer. Will update when I can. Thanks everyone for the prayers. I do believe they've been answered.

GUESS WHAT SUPER DUPER WORD I HEARD TODAY?? No, it wasn't "free ice cream in the TCC lobby"

It's Monday and how do I know this? Because of the traffic here in the hospital corridor. It was so quiet around here over the long holiday weekend, almost eerily too quiet. But when I came down to get some lunch today, there were people everywhere! That at least tells me it's a weekday for sure. And the staff changes our dry erase board in the mornings to tell us who the CN, RN, RT and PCA are for the date. Someone was kind enough to write Monday, July 7, on today's. Other than that, I wouldn't have a clue what day it is. They all seem to run together when you're in the hospital.

We tried to sit Colby up yesterday, but it didn't go well at all. He lasted not quite 45 minutes. This has me puzzled. I know he's been through a lot and we can't push it. But he's been able to tolerate 1 hour to 1 hour 15 minutes sitting up. I even had them give him a prn dose of valium right when he sat up. We had taken him outside, and I was keeping him distracted. Our amazingly sweet, thoughtful SMA friends had brought Colby 10 individually wrapped presents to open while in the hospital. What a wonderful, fantastic idea! It gave him something to look forward to each day. We were outside opening his last gift. The weather was beautiful. But Colby wasn't having it. He was fussing and started crying, and I was like oh heck no. Can't stand to see my sweet boy cry. So the 4 of us - one to carry a portable monitor, one to carry his IV pole, Grandma, and me to drive his chair, headed in again. I know it will take time. I hated it for him. You could tell he was miserable. I haven't chanced it today, no sitting up in his chair. I've sat him up in bed a couple times and that will have to do. We'll worry about that sitting up in the wheelchair nonsense tomorrow.

Colby had massage therapy today. Or maybe it was healing touch therapy. Or maybe it was energy therapy. I don't know, but a very nice lady came in and talked sweetly to Colby and whatever healing or energy she gave Colby it worked. When she came in he was sitting up in bed watching Aladdin (can you believe that boy has never seen that movie?!)  She hadn't been gone 5 minutes and that child was sleeping, glasses on, sitting up in bed. That's the lowest his heart rate has been all day. Should have asked her to work on Grandma and me, too. Lord knows we could use a little relaxation therapy at the moment, too.

We've started bolus feeds today. Yack, makes me nervous. Of course they're wanting to rush it along, and I said whoa, Nelly, hold your britches. Today he'll get 3 bolus feedings that take an hour to run. We have discussed making his full formula recipe tomorrow and started it to see how Colby tolerates it. I'm still pondering this over. But seems as well as he's doing with his bolus feeds (still just Pedialyte and Vivonex TEN, we could start all the ingredients of his home feeds at a slow rate. Yes? Or is it too soon? Hell, I don't know, it's our first ileus experience. And I pray to God our last.

Let me say WOW, just wow. Colby's day nurse today was a total rock star. She's waddling around the TCC, 38 weeks pregnant, and never missed a beat. She was AMAZING. Kept Colby exactly on schedule. Always smiled and was very friendly. Crap, I'm never that friendly to anyone, ever, and I'm certainly NOT miserably pregnant about to pop. I hope when she gets home she can rest and has a nice, sweet hubby to take care of her. She deserves a little pampering. She waddled those little legs off for Colby today. Makes up for a couple other poo-poo head nurses that weren't so rock starrish, in my humblest of opinions.

I've saved the best news for last. The word HOME was mentioned in rounds this morning. Zippidy-freakin-doo-dah. We're thinking Wednesday or Thursday. I talked to the discharge nurse about getting an ambulance ride home for Colby. No way he'd be able to make the 2-hour ride home in the van sitting up in his wheelchair. Not even an option. I'd roll his hospital bed out the front door and push him the 100 miles home before I'd let that happen. We'll talk about HOME more in rounds in the morning. But if Colby continues to tolerate feeds as well as he has been, there's no reason for us to stay here. Getting his tummy working again was the only thing holding us up, and it appears to be resolving nicely. Suck it ileus, we're blowin' this pop stand.

Again, we (my parents, Colby and I) want to thank everyone for supporting us in this spinal fusion adventure. THANK YOU for the prayers most of all. THANK YOU for the good vibes and warm thoughts. THANK YOU for asking if there is anything you can do to help us. THANK YOU for the texts and Facebook posts letting us know you care. THANK YOU for the visits and goodies some of you brought to the hospital. Thank you all so much. Please know we're grateful for the concern and love you have shown us. We'll be heading home soon, ready to plan and/or seek out our next adventure!

COLBY IS A ROCK STAR STUD! SO LONG ILEUS

Happy, ecstatic, jumping for joy and doing cartwheels down the hall to report Colby is having some forward progress! Yesterday was a really good day (even though we're in the hospital in the freakin' TCC unit) and today has started out well also. Don't want to jinx it, but maybe, just maybe, sweet boy has turned the corner and is leaving this nasty ileus in the dust.

Respiratory wise Colby is doing awesome. I think they caught the pseudomonas really early. He's tolerating his cough treatments well. No drops in oxygen or outrageously high heart rates. To be on the safe side and to make sure we got his lungs "cleaned out" post surgery, we had been doing IPV and CoughAssist 4x a day - 9AM, 1PM, 5PM and 9PM. Starting today we're going back to his home routine, just 3x daily - 9AM, 3PM and 9PM. If I think he needs an extra cough here and there, no big deal, we'll just give him a couple sets of CoughAssist. I think he'll do fine. As a matter of fact, I know he'll do fine. So weird to be in the hospital with Colby and his lungs are NOT the issue.

Colby's incision looks great. He continues to have no redness or oozing at all. Today is post op day #11. I have taken some pics of his incision along the way. Took one day. I'll post them later because I took them with my camera and I'm not sure how to download them to their computers. Duh.

Colby's pain is amazingly at a minimum. Or at least that's what Colby is "telling" me. He was in such a deep sleep he set off his low heart rate alarm last night. They have it set at 80, and his heart rate dipped down into the 70's here and there. That's a gooood thing. Means Colby is sleeping more like he would at home. When he's in a deep sleep at home his rate will be in the 70's, sometimes in the 60's. So yay for good, sound, comfy sleep. We've been able to cut his valium dose from a scheduled dose to a PRN (as needed) dose. He hasn't had any valium since 3:00 yesterday afternoon. He sat up in his chair for 1 hour 15 minutes yesterday, and after that I thought he could use a little happy juice to calm him down and make him comfy. We took him outside for about 20 minutes. It was so nice just to feel the sunshine on our faces! Maybe we'll try to do it again today.

And of course the big question is how is Colby's tummy/ileus doing. Better! He is going to the bathroom on his own. If Colby knew how much I've talked about his peep and poop over the last week he would be so mad at me. So let's just not mention it to him, ok? He had what we laughingly call a "code brown" yesterday. He had a bowel movement. The PCA and I were in the middle of changing him, and Colby said hey wait, there's more. So he started going again. And he went, and went, and went. Hard to believe that much stool could come from such a little butt! Took us forever to get him cleaned up. Then we were rolling him to the other side to get his brief on better and he peed all down his leg. Goooood stuff. Actually I've never been so glad to see a bunch of poop in my life. Means this damn ileus is resolving and Colby is getting better.

We restarted Colby's feeds. I was very nervous to do this, but hey, gotta try some time. We started out with straight Pedialyte at a low rate, 5 mL/hour again. Slowly worked up to 20 mL/hour over a couple days. Now Colby is getting Pedialyte and Vivonex TEN (amino acid protein that we use in his feeds every day). It's very diluted and we're still going at a slow rate. I think we're up to 30 mL/hour now. I won't let them change the rate as quickly as they want. They want every 6 hours and I said nope, we're going nice and slow, every 10-12 hours will do just fine. Why push it and worry about Colby's tummy shutting down again? No thank you.

So it's all good news! Colby's dad and stepmom are up visiting with him right now. My dad went home yesterday and I've got Mama here with us the next couple of days. There hasn't been any mention of it, but I'm sure if Colby continues to tolerate feeds, we'll be outta here in 3-4 more days I'm guessing. Oh what a wonderful thought - HOME! I'm trying to take a lesson from Colby. He really is the strongest, bravest, non-whiny person I know. So I'm trying not to be negative and whiny also. I AM grateful for this hospital, and I AM grateful my parents can come and help out. Sometimes I get a little "nervy". The room we're in is very small, and seriously, my butt is numb from days on end of just sitting and waiting for Mr. Ileus to leave town. We've had continuous problems with various pumps on Colby's pole beeping with "air in line" messages. That's annoying as shit. But what can you do? We've had some visitors and I love getting everyone's texts and Facebook messages. I'm not the best at answering calls. Seems like every time someone calls, I'm in the middle of doing something with Colby, like lately cleaning up poop. But I'm glad we have a bed in Colby's room. I'm glad the cafeteria is decent. I'm glad there are distractions like coming here to the Family Resource Center to get on the internet and blog. And most of all, I'm glad Colby is starting to feel better. If I can just hang on to my nerves and my sanity for a few more days, I think Colby will have this ileus licked. Not fun to watch your kid be sick and uncomfortable. I'm planning some sort of big party for when we get home. Something for Colby to look forward to. A late birthday, welcome home, you deserve a big fat party kind of thing. Don't know when or where, but I'll figure all that out later.

It's almost 1:00 and I haven't eaten yet today. I know, so unlike me, right? Think I'll take Mom's car and run out and get me something. There's a Chipotle down the street, and it's calling my name. I'll blog later with I know more good news!  

WE ARE CURSED

I can't explain it. We have never had a smooth experience going from the PICU to the TCC (transitional care center.) And this hospital stay is no exception.

So we get to TCC late yesterday afternoon. I notice as the day goes on, Colby's belly is becoming tight and distended again. I tell everyone who will listen to me I think something is going on. It seemed to fall on deaf ears. I also wasn't overly impressed with Colby's day nurse. I know they have more patients per nurse, but still. If there's something wrong with my kid, he deserves attention. We noticed that his feeds were backing up into his venting bag. That ain't good. So instead of stopping his feeds and consulting a doctor about it, this nurse just clamps off his venting and continues to let his feeds run! OMG when I found that out, I was furious. Not to mention she bumped the rate up to 20 mL/hour without telling me. I didn't want them to do that! Wasn't until I looked at the feeding pump and noticed. I could have throat punched that woman. Once a doc FINALLY came around to talk to us, I threw her under the bus. I said look, I'm not sure what's going on with Colby, but her stupid mistakes sure aren't helping the situation, only are adding to it. We stopped feeds completely, again. In case you're counting, the score is ileus 2, getting back to home feeds 0.

The latest is they think Colby might have pancreatitis. There are 3 factors to diagnosis this, and if a patient has 2 of them then they say yeah, that's it. #1-pain-they're asking me, is Colby in pain? Well duh, would you be in pain or discomfort if your back was cut open a week ago neck to butt? Or if you had a gas/bloated tummy and motility problems? I told them Colby wasn't in any EXTRA pain, and he's not. He's not crying or moaning or wincing, and his heart rate and BP are normal. #2-lipase levels-If your lipase levels more than double, than can be an indication of pancreatitis. Colby's levels are high. Supposed to be 200-300 and his were 700's last night and 900's this morning. However, they also said that high lipase levels could also be another post surgery symptom, so that wasn't the best determining factor. #3-ultrasound-Colby had an ultrasound around 8:30 this morning. This is probably the best way to verify if he has pancreatitis or not. And of course nobody has been in to tell us the results yet at 1:00. I'm trying to stay calm. I'm trying to remember this is a holiday. Trying to remember that we're spoiled from the PICU. They are Johnny-on-the-spot, on top their game up there. Down here, not so much.

There are other little hiccups, too. Took us forever to get supplies for Colby's room (diapers and wipes, Chux pads, etc.) Luckily I was smart enough to bring some from PICU. We had to take Colby down to x-ray last night instead of them coming to do one bedside. I argued and went round and round with the docs about this. I said look, why are we going down there, just have them do the fucking x-ray bedside. Finally I got the answer that they needed a certain view of his tummy and that they needed him to lie down flat for this, not just flat in the bed. Okay then, why didn't you tell me this in the beginning, you little freaks? And Colby is on lipids, which are really, really thick, making his pump alarm constantly. I mean CONSTANTLY. It's been giving us fits since the middle of the night. I finally said look, do something with that thing before I rip it off the pole and pitch it out the window. Just dumb crap like that. My kid is sick, and I was already pissed at a nurse. Trust me, I didn't need anymore aggravation. It's the curse of the TCC I tell you. We're cursed on that unit! It doesn't like us. No love lost, TCC, trust me.

Either way, ileus or pancreatitis, the treatment is the same. Time. Give Colby's tummy/GI system time to recover. I've finally come to terms with this "he just needs more time" concept. I have a new attitude today. We're here as long as it takes. I will do whatever it takes to play nice with others and make Colby as comfortable as possible. I will ask for lab results and whether or not the nurse knows her ass from a hole in the ground in a very polite manner. This isn't about me. It's all about Colby and what he needs to get better and get home. Now we have GI on board (wait, didn't I ask for a GI consult like 5 days ago? Uh-huh sure did) We're going to figure this out, make a new plan of care, and get this boy better. Period. And if I have to take a couple dingbat nurses out along the way, so be it. Just sayin.

My college roommate lives close by, so she came over for a visit this morning. Really good to see her. And she brought us homemade lasagna and fruit pizzas. Really, really, really good to see her haha. Very sweet of her to spend some of her holiday with us. We love company. Helps break up the monotony of the day.

Well, I'm going to go back up and check on sweet boy. It's time for his next round of IPV and CoughAssist. Also want to get him up in his chair and I'm not sure what else. Try and keep him comfy and occupied. More updating later. Lord knows we're not doing anything else today. Just waiting on that boy's tummy to cooperate.

PICU TO TCC. Home soon? IDK

We got down to the TCC today, yippee skippy! That's good in that Colby is making progress in his post spinal fusion surgery recovery. It's bad in a couple of other ways, though. Let's talk about the good first. Colby is making progress with the ileus issue. At least I think he is. We bumped his feeds up to 15 mL/hour and he has been on that rate since 6AM. I thought we were out of the woods, but now I'm not sure. Seems that as the day progresses, his tummy gets bigger and more distended (sigh.) His bowel sounds are also less. Damn ileus. I'm sure it's so uncomfortable for Colby. You know how it is when you have that bloated, uncomfortable feeling in your guts. Poor kid. And of course he is still positive for his in's and out's. That means he is taking in more fluid than he is peeing out. Well, Colby is always fluid positive every single time he's in the PICU. Kind of like every time he ends up in the PICU, he gets freakin' frackin' pseudomonas, just like he did again this time. The docs are hell bent bound and determined to give this kid Lasix. I'm not a fan! I agreed to it when he had fluid around his lungs, but now I don't know what to do. And obviously we're not increasing the rate on his feeds, that's for sure. Damn ileus. That's really our only hang up to getting home. I see us being here all weekend. Come on Colby's tummy, start churning!

Okay, I realize that all sounds negative, but here are the positives. Colby has been fever free for several days. Colby's stomach bleeding ended several days ago. Colby is off narcotics for pain. I take that back, he's still on valium for muscle spasms. He sat up in his chair for 1 hour, 10 minutes today. This kid is awesomely awesome! We got those stupid, horrible, pain-in-the-butt spine x-rays done. I think Colby's respiratory status is great. No problems with his IPV and CoughAssist treatments. We're doing them 4 times a day as opposed to doing them 3 times a day at home, to get his lungs cleared up. Again, if Colby's tummy would decide to play nice, we'd have one foot out the door to HOME.

Here are the downsides of the TCC. First thing I noticed, our room is much smaller. Colby and his equipment alone take up half the room, probably more than half. As my mama would say, there's not enough room to cuss a cat in there. TCC doesn't have sleep rooms. I'll be in the room with Colby sleeping on the little foldout couch, so that leaves nowhere for my dad to sleep. They don't have sleep rooms on this unit. He'll probably go get a hotel overnight and come back early in the morning. I'll be doing much more of Colby's care on the TCC, and that suits me just fine. I've been chomping at the bit wanting to help out my sweet boy. There's only so much they'll let you do in the PICU, but once we hit the TCC, move over peeps, Colby is mine again! Which makes me think...he didn't get his 5:30 cough treatment yet. I better hop off here and go see what's up. Chances are I'll be doing it myself. Fine with me, and I'm sure it's fine with Colby.

Sure wish we were heading home about now, but it wasn't meant to be. Colby does things on Colby time. As his bus driver and I always say and laugh, this is Colby's world, we just take up some space in it and follow his lead. Ha ha. Love that sweet boy, though. He is so strong and so brave. I look at him in complete amazement every day, surgery recovery or not. Life certainly gave him lemons, but he has made lemonade out of those stinking lemons time and time again.  

BUSY DAY AND GUESS WHAT...

Colby finally had a bowel movement! I know I've been rambling on and on about Colby's pooping vs. non-pooping, but currently it's an important part to his recovery. He got an ileus, meaning his tummy and intestines said, we're sleeping and don't want to work right now. If I never hear the word "ileus" until the day I die, I'm cool with that. They said an ileus had to resolve itself and would take 7-10 days. It's been 5 days or so now. I don't know if Colby is completely out of the woods with it, but he's doing much better. We started his feeds last night at 5 mL/hour. That's a teaspoon, by the way. Today we increased it to 10 mL/hour. And that's all I want for now. I'm going to have him keep him on that all through the night. If he does okay, we'll go to 15 mL/hour in the morning and maybe 20 mL/hour tomorrow night. You get the drift, it's a very slow process.

The ortho surgeon came in very early this morning. Today Colby is post op day 7 from surgery. Can you believe it's been that long already? Ortho said they would take off the glue/dressing strip on day 7. However, the surgeon was aware of Colby's poop problems. He suggested to leave on the dressing until Colby had a bowel movement (BM), in case Colby had a blow out, to protect the incision. Boy he hit the nail right on the head. That's exactly what happened. Colby "did his business" in an outrageous way. After getting him cleaned up, we removed the glue/dressing off Colby's incision. The incision looks wonderful, no redness, no oozing.

We also took Colby down for spine x-rays. It was awful. I knew it would be. Another SMA mommy warned me. We had to sit Colby up. No back brace of course, and we had to be super careful to not twist him, have his head fold down or his legs fold up. We gave him some "happy juice" before heading to radiology, thank goodness. Wish they had given me some, too! But we powered through it and got the damn x-rays done. Surgeon said they looked beautiful. Of course he did, it's his work haha.

Colby's chest x-ray and abdominal x-ray both showed "improvement" this morning. More progress! My guess is, if he tolerates his feeds okay and continues to pee/poop at a reasonable pace, we will go to the TCC tomorrow. Then from there start talking discharge plans. Oh happiness. I was just about at the end of my rope today, thinking Colby was stuck, not making progress, etc. Then bam, suddenly things started moving forward again.

Okay, they are getting ready to close the Resource Center, so I will get this posted and on my blog. More tomorrow. I'll be reporting more progress, right? Darn tootin'

LITTLE TINY BABY STEPS

Colby had a great (i.e. uneventful) night last night. No emergency trach changes or other shenanigans. We got a sleep room (2 nights in a row, woot woot.) I let Mom have it and I stayed in the room with Colby. I took a big, fat nap today. Just helps the time pass quicker. After a week of being here, those PICU walls are starting to close in on me. Colby did have a fever last night, but luckily it has resolved, and he has been fever free today. Good grief, he's on scheduled Tylenol and 2 antibiotics, yeah, you'd think fever wouldn't be a worry!

Colby sat up at 45 degrees in his bed for almost 2 hours this morning. Then this afternoon after his cough treatments he sat up in his wheelchair for 1 hour 10 minutes. He was really struggling and uncomfortable, so I didn't push it. He was zonked out after that. Pretty much been napping ever since. I'm sure his stamina is diminished since surgery. But I'm very proud of him for sitting up as much as he has today.

We're lucky again this week to have an attending doctor I really like. We were talking about the drop in Colby's hemoglobin, and we both agree it's a WTH kind of thing. She said she knows they tested his hemoglobin twice, but she believes it was a fluke and nothing was wrong with his H&H. I agree with her 100%. But his hemoglobin is nice and perfect now, so hopefully that won't be an issue for us anymore.

Colby's PICC is working better also. That's good news. Since it took them 3 attempts to get it in, I really want to use the shit our of it, know what I mean?

So of course I can't do an update without talking about Colby's tummy and/or ileus. If I never hear the word "ileus" as long as I live, that'll be fine with me. Colby is holding a lot of fluid, everywhere. They are giving him Lasix, which I totally hate, but I didn't see that I had much of a choice. They said if they couldn't pull the extra fluid off Colby's lungs, they would have to put in a chest tube. I'd do about anything to avoid that. Colby's tummy looks some better. It's softer and not as distended. Of course he is peeing like crazy with the Lasix, but dangit, we just can't get this kid to have a poopy. I'm hating it for him! Everyone says it just takes time, that the ileus takes 7-10 days to resolve. His belly x-ray does look better. So we're going to take a chance and start Colby back on his home feeds. At a very, very slow rate - 5 mL/hour, haha. That's 1 teaspoon, by the way. We started with some Pedialyte at 5 mL/hour, now we're getting brave and trying the food. Keeping my fingers crossed his tummy is ready to play nice. Ileus be gone, damn you.

Mom and I went through the room today and reorganized, repack things, etc. There is a very good possibility we'll be heading down to TCC tomorrow. I packed up a few things to send home with her. The parent exchange is tomorrow. Dad will be here noonish and Mom will head home for a few days. Lucky Dad, he'll get to help us load up all the stuff and move down to TCC. I bet he'll be so excited to hear that.

That's it for now. I've felt really tired today, even with a nap. Of course I was up every hour or so when they came into Colby's room last night, so that would explain it. Doubt if we get a sleep room tonight. There have been a lot of admissions to PICU and those parents get first dibs. Come on Ronnie Donnie, give me a call!

More tomorrow after morning rounds. Toodles and goodbye and see ya, peeps.