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.