TGIF? NOPE, IT'LL BE TGIS FOR US

Let me tell you how awesomely awesome Colby is doing! Yesterday he took 3 breaks off his bipap - 15, 20 and 25 minutes. That's plenty for his first time off since all this crap-ola started. Today he has had 2 bipap breaks, 1 for 30 minute and 1 for 35. Oh yeah, major, major progress!! As of right now we're scheduled to get the hell out of Dodge this Sunday! If I'm not mistaken, that's less than 48 hours from now. Can't be soon enough. If I thought he was ready, I'd tell Dad to fire up that Terdmobile and let's get this kid home. Sunday we'll go home via ambulance. Think they'll run through a drive-thru, like Panera, and a drive-thru, like Bob's Liquor World, once we get out of city limits? A girl can dream, can't she?

I'm at the computers over at Ronnie Donnie House right now. Getting ready to go get the rest of my stuff out of the room. When Mom comes up tomorrow she'll pack up the rest of her stuff. And she's chomping at the bit to get that room cleaned up. Ronnie Donnie asks that you clean your room before you check-out. I'd say that's the least we can do. What a blessing to have this place. It made this stinking hospital stay bearable. There for a while I was wondering if I wasn't losing what shred of sanity I've managed to keep over the years. But then again, maybe I have.

Been reading the Hunger Games. If you've read it, did you just love it? My BFF let me borrow her Kindle and I'm almost done with the first book. Should be able to get through it tonight.

As of right now, here are our future plans. #1 - GO HOME, first and foremost. Nothing short of Colby doing a complete 180 and ending up back on the vent is going to stop me from getting this kid HOME, out of that damn hospital bed, near our family and friends. #2 - Rest, relax, enjoy time with loved ones. Colby and I will be MIA the first couple of days after getting home. Then hopefully I'll be able to have dinner or lunch with some friends here and there. Maybe do a couple little things with Colby, the zoo maybe? Have dinner at the Moose one Friday night? IDK about all that yet. #3 - Get back up here the 3rd or 4th week of May for Triple T surgeries - trach, teeth and testicles. We'll be here 4 weeks or so for all that faldy-raldy. Oh joy. Everything you ever wanted to know about trachs and trach care, but really just didn't want to have to ask. #4 - Go home, recover from Triple T surgery. Have the biggest, bestest, blowout birthday party a 10-year-old sweet boy could ever ask for. #5 - Come back the first part of August (probably?) for spinal fusion surgery. My mind can't even go there right now. Spine surgery, holy freakin' crap.

But for now, take one thing, one day at a time. And now is the time to pack and get this kid home. Dad is leaving tomorrow afternoon after Mom gets here and will stay home, so I'm going to send some stuff with him. Also sent some stuff home with Mom when she went home a couple days ago. How do you manage to accumulate so much crap during a hospital stay?!

THANK YOU, everyone, for staying in touch, praying for us, giving words of encouragement. This SMA journey sure has some slippery slopes and turns, doesn't it? That's nice talk for saying SMA sucks so bad you can't find words to describe it. We'll continue the fight as long as Colby wants to continue it. He has given me no indication he's ready to give up, so by golly we can't either. What a brave kid he is. So very proud to be his mama!

WEDNESDAY PART DEUX

That last sentence from my last update should have said thanks for the continued support, although I'm sure you figured that out. I hate when stupid computers try and guess what I'm saying. Crap half the time I don't even know! Colby has had a great day. Cough treatments are going smoothly. My mom went home for a couple of days and my dad is here with us now. And speaking of HOME, we should be back in ours shortly. Can I get a "hells yeah baby!" I'm totally impressed with how well Colby has done off the vent/on bipap. Still need to work on scheduling Colby's upcoming surgeries. Still need to talk to ortho and pulmonary about spine surgery. Still need to get trained on how to access Colby's port. Yep, no one has bothered to teach me that. Think that's something I might need to know?! My hope is they will deaccess the port here as we're walking out the door, then we'll be back up here within 28 days for surgery. That way they can reaccess it here &thats one leas thing to worry about at home? I swear, for something that was supposed to be so simple & was supposed to make life easier for Colby, so far it's just been a giant pain in the you-know-where. Need to make a list of prescriptions, supplies ans equipment Colby may need. Tomorrow we will try some windows off the bipap. Nothing tremendous. I'd be happy if Colby could spend 15 to 20 minutes off his bipap. Guess that's about it. I know nothing else right now except SMA, blood gas results, the suckiness of SMA, bipap settings, trach talk, wrapping my head around Colby needing up to 4 surgeries in the near future all thanks to SMA, looking at X-rays and CT scans, and hating SMA more and more every single day. I didn't think that was possible but yep, it is. Time for Colby's 10:00 cough treatment, then nighty-night time until the next treatment at 2:00. G'nite gang.

Ok I stopped my blog update yesterday because Colby's pulmonologist came in. So I just hit publish and figured I'd pick up where I left off. Now I'll update until morning rounds. So if this update seems to end abruptly dont be surprised. Here we go. Monday Colby's port had to be re-accessed. It's accessed now but you have to change the needles every 7 days. With as much trouble with he's had with this stupid thing, I was a nervous wreck. Probably as nervous as when they took him off the vent. I kept thinking don't make him cry, don't stick him a bunch of times, don't hurt him. Then I was worried if he cried, that would make his oxygen drop, it always doos. Then he'd have trouble breathing, then his lung would collapse, then he'd need to be re-intubated. Yeah, I was that scared. Stranger things have happened with this kid, ya know. The same lady who did his port access in the ER came to change his needles. I was really glad to see her. She changed the needles out, no problems. Wow, what a relief. One more success to put on the smiley face sheet. Colby has had lots of smiley face moments the last couple days. Any time they pull out more tubes than they put in, that's a darn good thing. Colby's chest tube has been out several days. His IJ and peripheral IVs are gone. And the biggie, Colby has been off that freakin vent 70 hours!! I've been so superstitious. I didn't want to send out text or blog updates saying Colby was doing well. Stupid I know, but didn't want to say hey he's doing great, no wait, he's doing crappy back on the vent. As a matter of fact the vent machine is still in here, I wouldn't let them take it out. I think I'll have it removed today lol. We'll make one tiny change to his bipap settings today and that's it. Then see how he does. Colby's skin looks great. We've been keeping a close eye on his face since he's had the bipap on 24/7. The only time it comes off is for cough treatments. Also plan on giving him a bath. His hair was so nasty long I had Colby's dad bring up clippers. Dad and I buzzed Colby's hair this past Saturday. There was no way I was going to have all that long hair of his curling up everywhere getting in the way of putting his bipap mask on and off. Well, docs are next door so they'll be rounding on sweet Colby boy next. More soon. Thanks everyone for the continued super. Love ya.

UPDATE FOR...WAIT A MINUTE, WHAT DAY IS IT AGAIN?!

I've been told it's Tuesday, right? You tend to lose track of time/days when your kid is in the PICU for days/weeks on end. Let me catch you up on "what up" around here. Colby was extubated Sunday morning at 10:20 a.m. Usually if an SMA kiddo is going to fail extubation it will be within the first 48 hours, usually the first 24. Don't know if you remember or not, but last hosp stay Colby had an extubation that lasted 22 hours. Ahhhh, we were so close, but he just couldn't do it and had to be re-intubated. So all of us around here were literally counting the hours, minutes, seconds to the 48-hour mark. We didn't give Colby as many cough treatments in the beginning this time, we didn't think he needed them. We didn't have a set schedule, just did what Colby seemed to need at that particular time. We were stuck to his bedside and constantly watched the numbers on his bipap machine, monitor, etc. One of my SMA mommy friends was nice enough to give up her entire Sunday to be with us. Thank you so much, DB. She helped fine tune Colby's bipap machine and was a huge emotional support. Little by little the minutes and hours went by. Long story short, this has by far been the easiest "E" Colby has ever had! Not the first little problem or bobble for him! OMG my kid is such a freakin' rock star, don't you agree? We are now 54 hours, 13 minutes post extubation. Colby has done an amazing job. For the first 48 hours, we did his cough treatments every 3 hours. Now that he's off the vent, I want to do his cough treatments, so the respiratory therapist and I tag team him. I run the CoughAssist machine, they do the suctioning. Cough treatments every 3 is exhausting for everyone, I'm sure especially for sweet Colby boy. First we put Colby's shaky vest on and let that shake him up for 20 minutes. Then we tilt his bed with his feet higher than his head, trendelenburg position, for 15 minutes. Then do the actual CoughAssist machine treatment, which takes 5-8 minutes I guess. So by the time all this faldy-raldy was done, there wasn't much time before the next one. I know some of you have called and sent texts over the last few days. Sorry if I didn't get back with you, please understand we've been super extubation busy!! Watching Colby's every breath, literally, and getting up every 3 hours to cough him is hard on a mama. So there are all sorts of signs Colby is better and we can all collectively take an exhale and we can think about getting home. We're able to take his cough treatments to every 4 hours instead of every 3.

THE LATEST AND GREATEST FROM PICU LAND

Fridays are the days the attending doctors (head of the team of staff who is on your kid's case) rotate here in the PICU. They rotate on a weekly basis. I liked the attending doc Colby had for the last week, and luckily I like Colby's attending doc for the upcoming week. He saw Colby quite a bit last hospital stay and is very familiar with Colby's diagnosis, issues, complications, love of all things Spongebob, etc. He was on Team Colby last hospital stay when the first extubation lasted only 20 minutes. That was the day we learned Colby is now a fiber optic only intubation, and yeah, we learned the hard way. We agreed we would give Colby another shot at extubation, coming off the vent. We're going to give it a whirl Sunday. Same as before. They'll alert anesthesia so they can be on call, should Colby need to be re-intubated. We'll start the process after the docs round on Sunday morning. Second time is a charm, right?

After MUCH talk, research, prayer, crying, more prayer, more crying and taking a hard, realistic look at the facts, I've decided that it is time for Colby to have a trach. One way or another he'll have this procedure done. In an ideal situation, here's how I would like it to unfold. Colby is successfully extubated on Sunday. We spend a few more days in Cincy, then get the heck out of here and GO HOME. After that, get Colby back to baseline or as close to his old "normal" self we can. Get him rested, maybe tweak his diet, take care of things on the home front. Then bring him back to Cincy for ALL his surgical procedures, being trach, teeth and testicles. At this point, that's what I would like to see happen. Do I really think it's going to fly this way? I'm not incredibly optimistic. But I feel like we owe it to Colby to give him 1 more chance to get off that vent. If it doesn't work, we'll reintubate him and we'll schedule the trach surgery for next week. Either way sucks. SMA sucks. Enough said.

I've talked to Colby about getting a trach. I asked him if he knew what a trach was, he said no. I find that hard to believe. So I showed him pics of kiddos with trachs and told him the purpose of a trach. (Great conversation to have with your 9-year-old, huh?) I told him quite simply that I think it would help him breathe better. I also told him it should help keep him out of the hospital in the future. I also told him that I would NEVER let a doctor or nurse do something to him that I didn't think would help him. I'll continue to talk to him about it right up until it's T time. At this point, I would do about ANYTHING to avoid these long, excruciating hospital stays. They're so hard on everyone, especially Colby of course, but also my parents, my friends and me, too. We've spent too much time worrying about too many things over the last 8 months or so. I'm content with my decision. Like I said, you're never really sure if you're making the absolute right decision on this kind of crap. But in my head and in my heart, this is the best decision for Colby at this time. So that's what we're going to do. Just don't know when yet.

So we're just gonna hang out until Sunday morning I suppose. Mom is here with me now. I'll go sleep at Ronnie Donnie House tonight. Colby's dad is coming up to see him tomorrow morning. Today we gave Colby a bath, got his sheets changed, took a nap. Also had an ENT consult to discuss trach surgery. That's the scoop for now. More later. THANK YOU family and friends for all the continued support. We really do feel the love all the way up here in Cincy.

THURSDAY UPDATE - CLINICAL

Sit down, buckle up and hang on, because it's been a bumpy ride around here lately to say the least. Allow me to elaborate.

We were all set to extubate Colby (take him off the vent and put him on bi-pap) for late Monday morning, after the docs finished rounds. I went to Ronnie Donnie to sleep, as the day Colby gets extubated, "E", can get pretty crazy. Colby has failed "E" many, many times in the past, God love him. I get a call from Mom at 4:40 a.m. that there is a problem with Colby's port. So I jump up and get back to the hospital, crying and cussing like a sailor with every step I took. There was a problem for sure. The TPN was not running through his port, but was leaking out (infiltrating) into his tissues. This can be very serious and can cause all kinds of issues, skin breakdown and blistering and who even knows what else. So they gave Colby 5 tiny shots around the infiltration with an antidote. It's the same thing they did when his IV leaked out the Epi last hospital stay. Thank goodness it worked! We were successful in avoiding any further problems with the infiltrate. (This is where you sigh and say, crap, can't that kid catch a break?!) Apparently the answer is a big, fat, hairy NO.

Later that afternoon we took Colby down to IR (intervention radiology) where they finally, after who knows how many failed attempts, were able to access his port properly, both lumens. For the love of corn! Getting and accessing a port is supposed to be easy-peasy, not some clusterfuck mess like Colby's ended up being. But that port access issue is now fixed so now we can move on to extubating Colby. He should fly right through this, since his lungs have been in great shape for days, right?

WRONG!! Yesterday we tried to extubate Colby. We had all our duckies in a row. Everything was planned out. We had a rock star RT. We had all our bi-pap equipment lined up, ready to go. We had a plan ready to do this if this happened, do that if that happened, etc. We had our plan on how to give cough treatments. Colby did excellent for the first 6 hours. He didn't have the first little problem or bobble. Then WHAM, he went into distress. His oxygen dropped from 98 to into the 30's in no time flat. Nobody was around him bothering anything, just out of the blue he started struggling. He didn't officially "code", although his heart rate was starting to drop. Long story short, we were able to get his oxygen level up quickly. Anesthesia was there immediately and we were able to re-intubate without complications and time wasted. So, Colby is re-intubated (back on the vent). Doesn't that just really, really, really, really suck? I mean really?!

More than likely what happened is Colby got a mucous plug, or his right side may have collapsed some again. I think they were able to pop his lung open when they were bagging him, or maybe it popped back open when we put him back on the vent. If you look at his chest x-ray from this morning, it looks beautiful. You'd never guess he had those problems yesterday. If I had a dollar for every time I've looked at Colby, said WTH kid, well then I'd have a heck of a lot of dollars.

So what is the plan from here? Well, that is a very good question. I've been talking to the doctors, my family and friends, and other SMA families I trust. And of course I've been talking to God and my gut instinct. Based on Colby's repiratory behavior these last 2 hospital stays, I think it's time to tweak Colby's care plan. I'm wondering if it isn't time for Colby to have a trach. And NO, none of the doctors here are trying to talk me into it one way or the other. Not one person here has said, well you should do this, or this is the obvious choice for Colby. It's not their place to make that decision, it's MINE and Colby's. First of all, there is no obvious choice. Every SMA kid is different and what has or hasn't worked for one may or may not work for another. Second of all, Colby and I will be the ones living with the day-to-day trach stuff. Not the PICU docs, not the nurses.

So that's the clinical what's up with Colby lately. It's just a mess. A big, giant, horrible, stressful, awful, unfair, unwanted SMA mess. When we have rounds in the morning, we'll talk about the next step for Colby, when we'll plan to try and "E" again. That's all for now. Told you it was bumpy. Tomorrow is day 28, but who's counting? I am dammit, because I want to take my sweet boy and go home!

QUICK UPDATE - NO CURSING NEEDED, YIPEE!!

Two nurses, or maybe they were angels, came from the BMT team (bone marrow transplant). Now don't panic, Colby does NOT need a bone marrow transplant!! Since we were unable to access his port yesterday, I only wanted the BEST people around to try it again today. Obviously people in the bone marrow/cancer ward access ports all day long. Colby's nurse must have warned them that I'm a completely insane, about to lose it mama, because they came in with their game faces on. They walked in and I said, "Are you all rock stars?" They just looked at me kind of funny. I said, "Are you rock stars at getting port access because I don't want just anybody trying this, I want the rock stars doing it and getting it done." They said, "Yep, we're rock stars." Good enough for me! It didn't go perfectly, what ever does in Colby's world? But Colby's heart rate stayed low. He did not need morphine and he didn't cry. They were able to both flush and draw 1 of the lumens. Thank you Lord. We decided to leave the other one for now. It's good and shouldn't need to be accessed for another 23 days or so, I think anyways.

Port access accomplished. Then the doc came in and took out Colby's IJ. Another item on the to-do list accomplished. I've gone over it 100 times in my head what we need to do to get ready for tomorrow. The BIG challenge is still ahead, the one word that absolutely makes me nauseous, EXTUBATION. I know Colby is in the best shape he can be in to try to "E". Have to try it some time. Let's get this done. Let's get home and enjoy what's left of Spring.

I have to share this story. Last night when the failed port attempts happened, I was pissed off at the world. I mean mad, frustrated, irritated, confused, flustered, all that kind of stuff. I came over to the Ronald McDonald House (we call it Ronnie Donnie) for supper. I went outside to eat by myself, as I was grumpy and not in the mood to socialize. Then this man comes outside and sits at the table next to me. Oh great, I thought, like I want to deal with this putz. Turns out I think God sent me that putz to teach me a little lesson. I started talking to him, and he is one of the sweetest, most humble, insightful people I've ever met. Get this. He and his family are from Romania. So for starters they've traveled half way around the world to get medical care for their kid. Secondly, they've been here 3 years. Yep, you read correctly, 3 long, freakin' years. Actually the mother, son and daughter have been here 3 years, the dad has been here for 2 years. That's 3 years of living away from home, being away from other family and friends, going through their son's medical treatment. And you know what? His attitude was one of thankfulness and gratitude, while we've only been here 3 weeks and only live 100 miles away and my attitude was perfectly sucky. I enjoyed talking to him so much. He told me the name of his son's disease, but I forgot, something intestinal. While receiving treatment in Romania the docs over there gave too many antibiotics and now the child is also deaf. Not once did that man complain. He just stated it simply facts how things were, just shared his story. I can only imagine the look on my face and I'm pretty sure my chin hit the table. I asked him how do you do it? How do you keep it together? He paused for a long time, looked down at his plate. Then he said, in broken English, "It's my son. That's what we need to do, yah?" Then I got tickled because he looked at his plate again, pointed at his fork and said, "What do you call this?" I just chuckled and answered, "It's meatloaf." Guessing it's not a big entree in Romania! That's my warm and fuzzy moment for the week. I don't have a lot of them, but I'm so glad I met this family. When you pray tonight that Colby's extubation goes smoothly tomorrow, and I know you will, please include a prayer for Benjamin, "Benji", that he gets better and this family can return home soon. Thank you.

CAN'T COME UP WITH A TITLE WITHOUT CURSING

I thought I had blogged since Wednesday, so my apologies for not updating. My brain isn't exactly in tip-top shape and lately I have the attention span of a gnat. I'm sure you can under...SQUIRREL. Anyways, I'll try to do better.

Colby had his port placement surgery on Thursday. He was on the add-on list. First someone from surgery came up and told us they would be up to get Colby at 11:55. Again, not 11:45, not noon, 11:55. Well, she was a big fat liar, and we kept calling surgery to check. Surgery kept saying 1 hour, 2 hours, 1 more hour, etc. Long story short, Colby's had surgery around 4:00. By 6:00 he was back in his room, resting and recovering. Surgery went fine.

Okay, here's where it gets tricky. He came back from surgery with his port NOT accessed. Hmmm, what was that all about? That has been an ongoing debate for a couple of days. SQUIRREL. Here's my thought, and I'm sure you'll agree with me (or at least you should haha). They had to access the port to see if it worked and flushed it with heparin. I know this was done because I read the post-op notes. So why in the world would they de-access the port?! This remains a mystery. The post-op report says "per instructions" not to leave the port accessed. I'm not sure if some dumb butt in the PICU told surgery this, or if there was a miscommunication, or what. Doesn't really matter, the port wasn't accessed, period, which now brings me to the next lovely section of the story.

So the central venous team nurse shows up yesterday to access Colby's lumens on his new port. Now remember, the whole idea behind getting this port was to have easy access and that Colby wouldn't have to be stuck and poked all the time. This is exactly how I explained to Colby why he was having surgery, so that when he goes to get blood work done or needs IVs, they don't have to poke him over and over. I also told him they would come in, access his port, and take out that uncomfortable IJ that has been in his neck for 3 weeks now. There's one word to describe accessing Colby's port: disaster. No wait, actually there are 2 words to describe it, fucking disaster! She started feeling around where Colby had surgery and he immediately started crying. She said there was still a lot of swelling. SQUIRREL, HUH? She also said that accessing a port was done mainly by touch and she was having trouble figuring out where to put the needle. Oh boy, are you kidding me? Honey, don't you do this all the time? Isn't this your J-O-B? She tried to access the 1st lumen, no luck. Shit. She tried to access the 2nd lumen, no luck. Shit. Colby was crying, big tears rolling down his face. I couldn't stand it. I didn't want to give him morphine because we're so close to extubating him, but felt I didn't have a choice, so we gave him a 1-time dose of it for the port access. Then this central venous ding-dong ho-bag nurse decided to try another size needle and poked each lumen, AGAIN, and still couldn't get access. I said that's it, you're done. Go away now, bye-bye.

I cannot begin to tell you how upset I was when all this happened. Colby probably thinks his mama is a big, fat stinkin' liar. Hey Colby, you're going to have surgery tomorrow. Nah Colby, we have to wait 2 days for surgery (thanks Dentistry, I owe you one, terdbuckets). Hey Colby, we're going to get you a port so we won't have to poke/stick you all the time. Nah Colby, we just tried 4 sticks and still couldn't get your port accessed. Hey Colby, we're going to get that nasty IJ line out of your neck. Nah Colby, can't do it because we can't get your what-is-supposed-to-be-simple port accessed. DAMMIT, I've asked this so many times before. Can't 1 thing just go easily for this kid?! Just 1 time, can't we say this is what we're going to do, this is the expected outcome, do it, and actually get that outcome?!

That brings us to today. Besides the port issues, Colby is doing super fabulous. X-rays for the last few days have looked great. No signs of pneumothorax or effusion hanging around, woot woot. Actually I wanted to extubate him yesterday. But the attending recommended we wait because #1, need to get port accessed and #2, need to have "all hands on board" when he's ready for "E". Mainly we need to have anesthesia standing by in case Colby needs to be re-intubated, which unfortuneately we know he was a history of this. FERRET? As of right now, this exact moment, this is the plan: someone from oncology is going to come and try to access Colby's port. These chicks access ports all day every day. I said don't send us "someone" send us your rock star. I even told the nurse, use those words. "Do you have a rock star nurse who can access a difficult port?" She's getting ONE poke. Right now we just need access from either lumen, not both. ONE try. No morphine. All I can say is the PICU better be hoping, praying and doing their happy access dance. Because if this doesn't fly, I'll be even more upset than I currently am, and that's no good. I didn't yell when Colby's surgeries got rescheduled (twice). I didn't yell when they said let's wait til Monday to extubate. I was upset yesterday with the whole access fiasco, but again, I kept my cool. Didn't fly off the handle at anyone. But, here's the deal. If this port doesn't get accessed today I won't let them extubate Colby and he is READY! This is the optimal time for him and his best chance for success. We don't want/need anything f-ing that up.

It's been a roller coaster of emotions the last couple of days. So happy he breezed through surgery. So happy he's ready for "E". So upset the port isn't accessed (either lumen)! Right now we'll take accessing just one. So ready for this mess to be over. So ready to go home, get settled, get back to our "normal" lives.

I'll keep you posted. CHIPMUNK. Right now just waiting to here from the rock star oncology nurse. Waiting. Seems like we're always waiting. Like my dad always says, hurry up and wait, hurry up and wait.

GUESS WHO'S MAD, SAD, NOT AT ALL GLAD, AND FEELIN REALLY BAD?

That would be me. And Colby I'm sure. And anybody else who cares and loves him to pieces. We've had some scheduling frustration to deal with lately. It's enough to make you scream. Let me back up a little. Here's the good news: Colby's air pocket outside the lung (pneumothorax) is better, a lot better. The fluid pocket outside the lung (effusion) is better, thanks to the Lasix he's been getting twice daily. He was scheduled yesterday as an add-on for surgery to have the port placement and teeth pulled. We were told it would be after 3:00. Time just kept ticking by. Finally at around 6:00 they came and said Colby's surgery was cancelled. Apparently Dentistry said they couldn't work Colby in their surgery schedule. Had I known this, I would have said screw the teeth, just get in the port, as it is the priority. But it all got cancelled. I was soooo upset. Especially because Colby's x-ray yesterday was the BEST it has been this whole hospital stay. He was in great shape (or great shape for Colby) to get the procedures done. And the really sucky part is I couldn't yell at anybody! Damn! The docs here in the PICU tried very hard to schedule everything. They were frustrated, too. It wasn't their fault. They didn't know what was going on in Surgery Land. So to summarize, yesterday was a complete waste!

Here's the decision now. Get Colby's port put in, period! If Dental can come along and do their thing, fine. If not, they can go piss up a rope. We're tired of waiting on them and they're the ones who are jacking around with this whole surgery thing. Colby is, once again, on the add-on list for surgery tomorrow. Just hoping his lungs look as good tomorrow as they did yesterday. This waiting around is horrible. Yesterday just went on and on and on. I promised myself I would find something, anything, to stay busy today. I've watched some TV. Gave Colby a bath and changed his bedding. I've had to help a little more with his care because his nurse was just assigned another patient. That's fine with me. I'm getting ready to go through my mail\bills. That should tel you how bored I am.

The end. That's it. Sit around and wait for this dang surgery to get done. Hurry up and wait. Hurry up and wait. Livin' the dream that's for sure. I JUST WANT COLBY TO GET BETTER, GET THIS STUPID SURGERY DONE AND GO HOME. When I think of all the time we've wasted being here, it breaks my heart. I hate this for my parents. I know it's doubly hard on them, probably triple hard. I know they're exhausted and have lives of their own. Another reason we just need to get the heck out of here, get home and get on with our lives.

PROGRESS? YES, I THINK SO

Yesterday, Easter, was a very quiet day for us. We didn't make any changes to Colby's vent. The only change we made to his treatment plan was adding 15 minutes of postural drainage after cough treatments. In other words, we tilted Colby's bed back with his head pointing down, thinking it would move the fluid that is stuck in his right lower lobe up enough where we could CoughAssist and suction it out. Colby tolerated it very well, and honestly, I think it is helping. It certainly hasn't hurt him any. My only personal goal for the day was not to cry, have a meltdown or pity party, etc. I'm quite proud to say I was successful haha. Just tried to suck it up and tell myself this is where we need to be right now. It's what is best for sweet Colby boy. Colby had decorated some plastic eggs with stickers so we handed those out. Colby received Easter baskets from both Cincy Children's and Ronald McDonald House. My brother came over last night and brought us tons of Easter dinner leftovers (his deviled eggs were almost as good as mine, ALMOST) and Easter cards and candy for all of us. So the day was uneventful, we had visitors, Colby got presents and I got leftovers. Not too shabby of a day after all I suppose.

Today's x-ray showed that Colby's pneumothorax is getting better. Well enough that they began the process of rescheduling his surgeries (port placement and teeth pulling). Colby is on the add-on list for surgery tomorrow! Yikes. Anesthesia came and talked to me today and I signed the consent forms. I've had several more days to prepare for the fact that Colby is undergoing general anesthesia, but I'm still a nervous wreck. The pleural effusion is being quite stubborn, only a little better. Going to try Lasix again and try to get it to dry up. If not, we'll have to get more aggressive and probably insert ANOTHER chest tube in that area. Yeah, because 1 chest tube at a time just isn't enough apparently. (Come on Lasix, please, please, pretty please work).

We had a visitor today. Yay! Our friend Amber came to visit, bringing Colby yet another Easter basket, making his total 4 for the weekend. And YES, he deserves every bit of gifts and spoiling he gets. She stayed a good while and it was great having company. Really helps break up the monotony of the day. She got Colby some cool stuff and she brought me 3 Reese's pb eggs. Woot woot.

Guess that's about it for now. If I think of anything else, I'll just update my blog again. I don't have a time for Colby's surgeries because he is an add-on. But I'll update as soon as I know something. I know there are tons of family and friends, heck even friends of friends and probably strangers, who love us and pray for us. THANK YOU so much. I absolutely believe in positive thoughts and prayer. I've been telling Colby about his procedures and telling him how much he's loved and thought about every day. Here's to thinking these surgeries will go off without any problems or complications. UNEVENTFUL please and thank you, just how we like it.

TWO WEEKS AND COUNTING

Yesterday was quite an interesting day. It was also quite a shitty day. Colby was scheduled for his surgical procedures at 10:30. It was about 6:30. I was lying in bed, half awake half asleep, thinking I really need to get up. I could hear some commotion outside Colby's door and kept hearing "Colby" outside also. I just figured it was the surgeon or someone wanting to get some pre-op stuff taken care of. Uh, no, not at all. The docs and nurses come in and said hey, sorry, but Colby has a big pneumothorax and we need to put in a chest tube right away. It's kind of an emergency. Whaaaat? I couldn't believe it, then they showed me the x-ray. The findings were a "moderate to large" pneumothorax. Yep, that's just what it was. So at 7:00 a.m. yesterday Colby was getting a chest tube placed to help release the air built up between the lung and chest wall (the pneumothorax). Surgeries cancelled, dislike. The pneumo caused his lung to collapse, AGAIN, so guess what else Colby had done yesterday? Yep, another bronchoscopy, dislike. This time we got another pulmonologist to do it, one who is known to be really good (and quick) at doing bronchs. He ran into the same trouble as the other bronch, compression on the lung airways making it difficult to not only "clean out the lungs" but also for air and secretions to clear properly, dislike. OMG, I could have pulled a Forrest Gump, start run-ning, and still be run-ning away from all this mess. But as long as Colby Michael still has fight in him, I'll be right there fighting with him. Then they came back in and pulled Colby's chest tube out about 1.5 cm to hopefully better release the air pocket. Damn that kid has been through it, dislike. And this was all before noon!

Post bronchoscopy Colby did better than with the first one. My guess is they didn't use as much saline down in his lungs. Colby was exhausted last night, just completely wore out. Who wouldn't be after having all that done to them?! He was able to get some rest last night, though, and is bright-eyed and adorable as always. Such a sweet, sweet kid.

We've made a couple small tweaks to Colby's treatment plan. They moved the chest tube placement again today in hopes to better target releasing the air pocket and getting rid of the pneumo. We've started using the IPV machine and stopped using the MetaNeb. These are machines that are like nebulizers on crack. They work from the inside out to help break up secretions. No harm in trying the same thing only different to see if might help. Colby's lungs don't sound as "wet" or "gunky" so I decided to move his cough treatments to every 4 hours instead of every 3. This child needs some more rest! Basically his lungs sound good, hopefully meaning the secretions are clearing up. But his right lung STILL has areas of collapse and that's what we're hoping the bronch helped fix. Very anxious to see his x-ray in the morning. So that's what is going on inside Colby's lungs. Between the outside of his lungs and the pleural cavity we have both collapse (air pocket, aka pneumothorax) and now the effusion (fluid) is back. Really? Seriously? Dislike. So basically Colby's lungs are trashed and we're no better off than we were 2 weeks ago, except that his flu symptoms are long gone. Can't Colby catch a break? Apparently not. I'm getting ready to teach him that Hee Haw song, "if it weren't for bad luck I'd have no luck at all".

Where do we go from here? Hell if I know. Can't really reschedule his surgical procedures until the pneumo is gone, dislike. There's a part of me that thinks crap on it, forget the surgeries, just get him better and get him HOME. They keep telling me a pneumo shouldn't set Colby back that much. That's great in theory, but let's face it, NOTHING with Colby is easy anymore. Not IV access. Not intubation. Not airway clearance and a bronchoscopy. If things had gone as planned, Colby's lung wouldn't have gone to shit and he would be sitting pretty recovering from these surgeries he needs. But then again, it's hard to not get the surgeries done when we're already here, he's intubated, his pain can be controlled well, etc. All we can do is take it one day at a time. So that's what I'll do, or try to do anyways.

Dad went home yesterday after the 2nd bronchoscopy. Colby's dad and stepmom came up today and stayed a good while. Brought Colby a great Easter basket. Colby and I have been decorating plastic eggs with stickers. We're going to give them to the nurses, docs and therapists tomorrow (well, to the ones we like haha). Dad will be back tomorrow afternoon and Mom will go home for a couple days. They have lifted the flu restrictions so hey, we can have visitors now. Hear me?! I said we can have visitors now. Like now, family and friends can come visit. Just sayin. Colby's dad brought up his eye gaze today so once we finish decorating the eggs, it'll be eye gaze time. Oh good grief, no telling what he'll say.

Guess that's it for now. Hope everyone has a happy, HEALTHY, fun Easter. We're going to make the best of it. Not going to worry about not being home, Colby not being in the Easter parade today, not enjoying the great weather, Colby missing school, me missing work, etc. Thank God we have this hospital. Thank God we were able to stay a little ahead this mess and nothing to date has been trauma or an emergency for Colby. I have my Bible with me. Don't worry, I'll be reminding Colby all about Easter tomorrow. Sounds like he'll be getting another Easter basket tomorrow, this time from the Ronald McDonald House. Very nice. He deserves to get spoiled to the max. Bye for now.

MOVING RIGHT ALONG - PROGRESS IS GOOOOOOD

Colby had been showing slow (very slow) but steady progress until a few days ago. His flu symptoms thwere gone, fever was gone, settings are the vent were reasonable, back to room air on his oxygen. Then he kinda hit a plateau. An ultrasound showed that the problem area on his right lung was more collapse than fluid. So how do you fix this? You can give it more time. We'd given it 12 days or so. You can increase treatments. This didn't apply to Colby, good grief we've been doing MetaNeb and cough assist treatments around the clock since he's been here, long with a combo of Atrovent, saline, Xopenex and Pulmozyme to help break up/thin the stuff before we cough it out of him. Another option was to do a bronchoscopy, which I agreed to, and Colby had done yesterday around 1:30.

If ever there would be a child to complicate a simple procedure, it would be Colby Michael! Apparently there is an area in Colby's lung that is compressed. In the right middle "tube" that runs through his lung. So he has collapse of the lung itself and compression of the tube running through the lung. Make sense? They seem to think it's from his scoliosis, but I don't know about all that. Regardless, the bronch took longer than I wanted. The few hours after the bronch were shaky. That's to be eexpected after someone rummages around in your lungs for a while. We had to go back up on Colby's oxygen, from 21% to 30%. Plus he was requiring extra suctioning and coughs between his regular 3-hour treatments! I thought, oh know, what have I done? I've let them do a procedure that's going to set Colby back. Luckily after a few hours and with his 8:30 cough tmt, he calmed down a bit. Thank God because I was a complete nervous wreck.

Long story short, the bronch was a success. I looked at his xray this morning, and it is his BEST xray to date. There is finally some change for the better in his right lung. He is now back on room air, 21% oxygen. Now that his lung has popped back open, we've decreased the PEEP on his vent (this is a good thing).

Plan for today? Not much as little as possible for Colby. He needs to rest and get ready for his surgeries tomorrow. They are scheduled for 10:30. He's having a port placed and also have his dental extractions done. Yay, get Colby in the best shape he's been this hospital stay, then drag him off to surgery! The procedures need to be done, though, so we're moving ahead and getting them done.

Thanks much for the "hang in there" calls, texts, Facebook posts, etc. This hospital stay is NOTHING compared to the last one. I've been pretty bumme, though. Better, much better, since these decisions about bronch and surgeries have been made. And of course it doesn't hurt that Colby is more like his sweet, silly, Spongebob loving self. I know so many of you pray and send warm and fuzzy thoughts to us all the time, but especially when Colby is in the hospital. THANK YOU, THANK YOU, THANK YOU. My family appreciates it. I tell Colby all the time he is so loved and that hopefully he can "feel the love" when he's fighting all this crap. I need to run. Dad just brought me a piece of toffee from the gift shop. I want it, I need it, I'm gonna have it!! More later.

NEW, NEWER, NEWEST PLANS

It's been a busy morning in the PICU. Here's the latest and greatest on sweet Colby boy:

First some background. Prior to Colby getting sick, we were in the process of scheduling 2 surgeries at once, oral surgery to pull several baby teeth and having Colby's ascended testicles put in the proper place. The teeth pulling was the priority. I thought what the heck since he has to be intubated and going through surgery we'll get the testicles done, too. This was scheduled for April 11 on Colby's spring break next week.

Then along comes the flu for Colby, along with pneumonia, lung effusion, intubation, strong antibiotics, another lengthy hospital stay, etc. This hospital stay, along with the last one, has been horrible as far as IV access goes. It seems to get harder and harder to draw labs, get IV's and PICC lines for Colby. His little arms are so bruised, and 2 different people on 2 different days couldn't get his PICC line in. So I made the decision for Colby to get a port. I think this will save Colby a lot of pain in the future and will certainly come in handy should an emergency situation occur with Colby, which we all know he has had many in his lifetime. So now comes the decision as to what procedures to have done and when are Colby's lungs healthy enough to undergo surgery? This morning Colby had an ultrasound done on his lungs. His right lung is giving us fits. Even after 11 days of around-the-clock cough treatments, MetaNeb treatments, hypertonic saline (I had them stop using that several days ago as I thought it was irritating his lungs), Xopenex, Pulmozyme and good old fashioned positioning changes, his lung is still cloudy on x-ray and sounds junky after cough treatments. This morning the ultrasound showed that the area in question is more collapse than fluid, meaning that the broncoscopy talk needs to put back on the table. A bronc will help "pop" the area open, or at least that's my understanding, and they can also work on getting the lungs cleaned out better, get cultures, etc. We also changed the settings on his vent, moving the PEEP up from 8 to 10, to see if that lung will pop back open. It's a stubborn little booger for sure!

After much, much thought and consulting with anybody and everybody that would talk to me, I've decided to have Colby's port put in and have his oral surgery done. I'm not worrying about the testicles for now. Originally Colby was scheduled to have the 2 procedures done today, but at the end of the day yesterday I just didn't think respiratory-wise he was ready, so I said no, let's give him another day or so. After general surgery and dentistry got their schedules together, the latest and greatest plan is for Colby to have the procedures done tomorrow, Wednesday. I'm pretty sure they will go ahead and do the broncoscopy also while he is in surgery. So, that's 1 port placement, many baby teeth being extracted, 1 broncoscopy and 0 testicle procedures. But stay tuned, it could all change in the next hour or so.

I've given myself an attitude adjustment and have been much better the last couple of days. I'm back to having that love/hate relationship with this hospital. HATE that Colby is sick, intubated and has to be here, but LOVE having this hospital near and that Colby can get treatment at one of the best hospitals in the country. We have a room at the Ronald McDonald House across the street. It's been great. The people there are super nice and helpful. Always lots of food available, which we all know is really important to me, haha. I went over and slept there last night, 6.5 continuous hours! When your kid is intubated in the PICU, any solid sleep is a blessing. Trying to find other things to do with my time besides sit and eat. Not easy though, not much else to do. And when people bring you snacks, you can't be rude and not appreciate them, right?!

I'll update later. Probably something will be changed! But that's how Colby rolls, keeping us on our toes at all times.

SUNDAY UPDATE, NO FOOLIN'

Well, we're on day #9 of this flippin' stupid flu-infested hospital stay. Colby acts like he feels better. His lungs sound a little clearer after cough treatments. He's awake, acting more like usual Colby. We've been able to turn down his oxygen gradually and now it's 25%, only has to be 21% to be room air. We've discontinued the Lasix and that makes me happy, happy. They think the effusion is for the most part dissolved or gone so that's not a worry. His tidal volumes are great, around 200-250, another thumbs up. Colby has had some great nurses and respiratory therapists. There's only 1 nurse I would consider so-so and didn't even have her for a full shift. No, I didn't get her fired or kick her out of our room, that was her shift haha.

So is there bad or not-so-good news? Yeah, of course. We turned down Colby's vent settings a couple days ago. His blood gas this morning reflected that wasn't a great idea, so he's back to the other settings. Colby's x-ray looked worse this morning, wth?! It looked better yesterday for the 1st time since he's been admitted, so I just knew it would be even better today. It was worse and I was so bummed. So I'm going to assume the broncoscopy talk will come up in rounds tomorrow. I don't have a huge objection to it, but of course don't want Colby going through a procedure if he's able to do the work on his own. But that's just it. We've done cough treatments around the clock, every 3 hours, for 9 straight days. I know it's the flu AND pneumonia AND effusion AND SMA and that it will take Colby a very long time to bounce back compared to a non-SMA person. (notice I didn't say compared to a "normal" person b/c that really pisses me off when people say it that way). SMA is Colby's normal, get what I mean?! Anyways, that's what I'm trying to weigh. Give him more time or go ahead & see if the bronc helps move things along.

Also need to talk to Dentistry to see what this oral surgery is going to be about, how much bleding, how much swelling recovery time, etc. He's having the port placement for sure, but I need to decide whether or not to do teeth and/or testicles. That's the latest on sweet Colby boy. I know he's over there lying in that bed giving 110% to get better. He's such a good-natured kid. What a shitty hand he has been dealt, but he's a trooper and just keeps on fighting.