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.