I THINK IT'LL BE A FANTASTIC TUESDAY

Colby is definitely doing better. Hooray, giddy up, 2 thumbs up, atta boy, hells yeah and way to go sweet boy. Around 4:30 yesterday they came and told me Colby's test confirmed pseudomonas. Boooo. That's on top of "a little spot" of pneumonia and "some" bronchitis. Damn, no wonder we couldn't care for him at home! So, he is currently on 3 antibiotics. Clindamycin will treat the pneumonia and also hopefully ward off any MRSA is it's lurking around. Zosyn will fix the pseudomonas, along with putting Cipro drops in his trach to help with this also. Good grief, he's bound to get better after all that!

I do see that Colby is definitely starting to improve. Thank goodness, he had me super worried. Yesterday he took a 2.5 hour nap. His body needs the rest for sure, since we've been doing cough treatments on this boy every 4 hours around the clock since September 18. Of course he didn't fall asleep last night until after midnight, the big stinker. Then he slept in late this morning. His cough treatments are going much better. We're not getting near as much "gunk" out as before, so his lungs are finally clearing up. Instead of doing cough treatments every 4 hours, we're going to try and move them to every 6 hours. He was on 30% oxygen. Yesterday we bumped it down to 28% and this morning we moved it down again to 26%. Baby steps. If he continues to improve at this rate, we'll be looking at discharge soon. I have my sights set on Friday. We'll see.

My dad has been with us since Sunday morning. My mom is driving up now and he'll be heading home for a couple of days. Can you say world's best parents/grandparents?!?! Don't know how in the world Colby and I would survive without them. I've been struggling with being sick, too. Actually I got a head cold before Colby started getting sick. Now the dry, hacking cough has been lingering on. I finally started a steroid pack yesterday, and just let me say, wheeeeeeeee, steroids! I've been up since 6:30. Our room is organized and spotless. I still have a little wheezing and a bit of a hacky cough, but can tell a big improvement. This being sick is for the birds. Going to have to make some lifestyle changes when we get back home and start taking better care of myself.

But for now, I get to eat what I want. I'm 100 miles away from home with my sick kid, stuck in a hospital room, getting over illness myself. Comfort food much needed. Let me tell you what they had in the cafeteria yesterday, a macaroni and cheese bar. Holy crapoly are you kidding me? Yummy, gooey, cheesy mac and cheese, then you could get add ins such as broccoli, chicken or BACON!! You bet your buns I had some. I at least ordered the half portion. That makes it ok, right? OMG it was so good. I could have taken a bath in it.

That's the scoop for now. Colby is on tons of drugs, doing better. I'm on steroids, doing better. And we're going to go home soon. Time to put this nasty illness behind us and move on with our lives. There is much fall decorating, Halloween costume choosing, pharmacy test studying and more fundraising to do. Time to start blogging about the fun stuff, not his old nasty hospital stay stuff. More later. Toodles.

MONDAY - FINALLY GETTING SOME ANSWERS/RESULTS

There seems to be some confusion as to what's going on with Colby. That's probably my fault, sorry. I'm not exactly hitting on all cylinders lately. So let's see if I can provide clarification. Read below and pay attention.

Saturday afternoon we went via ambulance to Kosair, the local children's hospital. There they did a chest x-ray, nasal swab to test for viral illnesses, a trach aspiration test to test for other things and drew blood work. Then we were taken via the Kosair transport team to Cincinnati Children's, late Saturday night. It always takes lab results at least 24 hours to complete, if not 36-48 hours. So it doesn't do me any good to start asking what the lab reports are until 24-36 hours after they were taken. X-ray showed small amount of pneumonia on Colby's lower left lobe. Well of course it did. Does Colby get sick without getting pneumonia?! Apparently if the pneumonia is "streaky" that indicates viral. If it is a "patch/spot" usually means bacterial. Who knew? So they started him on IV Clindamyacin (probably spelled incorrectly.)

That's really all I knew until this morning. In rounds we discussed everything going on with Colby. His CBC looked good. His renal panel was normal. His PCR is negative. That's the viral panel they run. The attending doctor here said Kosair said they test for about 20 viruses including flu, rhinovirus, etc. His nasal sample shows no nasty growth. However, keep in mind there are about 150 nasty viruses out there, and they only test for about 20 of them. His trach sample is growing gram negative. What does that mean? Probably means he has pseudomonas (probably spelled incorrectly.) Great, super, fantastic. Guess this will be Colby's arch nemesis. We have to wait for sure for the gram negative result to keep "growing" to further define what he has. They will probably keep him on his current antibiotic and add another one to treat the pseudomonas if that is in fact what Colby has. So, as of now, Colby's official diagnosis is bronchitis and pneumonia. We're going to try some hypertonic saline and maybe some Xopenex (spelling?) to try and break up the gunk in his lungs. Colby is on 30% oxygen, room air is 21%. So as he starts to improve, we will wean his oxygen down as he tolerates.

Colby does not have the Enterovirus everyone keeps asking about. Here's some helpful info. The pulmonologist said 2-3 weeks ago they were swamped in the TCC with patients testing positive for it. He said it was so bad he felt schools should have been closed down. He said it's not that bad right now. I do know there is another patient on our unit that has it, but this patient is down another hallway, thank goodness.

What's the plan for Colby? Wait to see what else the trach culture grows. Treat accordingly, maybe add another antibiotic. Continue cough treatments every 4-6 hours for airway clearance, trying to finally get his lungs clear. Maybe use hypertonic saline or Xopenex to help with that. Colby is feeling better I think. He got lots of good sleep last night, more than in the last several days. His heart rate if finally down where it should be. We gave him a bath last night. He was needing one really badly. Stinky Poo! Hadn't had a bath in several days.

That's the plan, Stan. Hold tight. Watch for Colby to improve. Wait for further culture results. Give Colby kisses and hugs and more kisses and more hugs.

And don't forget!! The Origami Owl jewelry fundraiser is still a GO. We're still having it!! I know you were just thinking this morning, man, I need some new, uniquely designed and original jewelry. I just know you were thinking that! Taking orders from now until Tuesday (tomorrow) at noon.

I'll update when I know more. Colby is amazing! How in the world do you battle bronchitis when you have no cough?! He's such a trooper! What a strong-willed young man he is. Gooooo Colby! Kick some bronchitis/pseudomonas/pneumonia ass.

ORIGAMI OWL FUNDRAISER STILL HAPPENING

The Origami Owl jewelry fundraiser planned for tomorrow is still a GO!! Just because I won't be there doesn't mean a thing. You can still shop for beautiful, personalized, unique jewelry! The Origami Owl consultant/designer, Nancy, will be set up at my apartment from 6P to 9P just as we originally planned. Come one, come all. Grab a friend, come on over and see all the wonderful possibilities Origami Owl jewelry has to offer.

If you live out of town or are unable to attend the fundraiser, don't panic. You can shop online. Go to this link to place your order:

www.windowtomysoullockets.origamiowl.com/parties/AmyBagshaw451375/collections.ashx

You must use this link in order for us get get credit for the purchase. All orders are due no later than noon on Tuesday, September 30.

Thanks so much for your continued support as Colby and I start the journey of owning a handicap accessible house. Time to kiss apartment life bye-bye!

GOOD MORNIN FROM TCC

Yesterday was one of the longest days. I was asked the same questions about Colby over and over. And over. If one more person asked me what size trach he had, I was going to lose it. Don't they write that shit down in the computer?! Good thing I was too worried and exhausted to go cray-cray on anybody.

I called 911 about 2:45PM Saturday. First the firemen show up. Hello boys, I'm single BTW, wink wink. Then the ambulance ride to Kosair. Ugh, we tried so hard to keep Colby out of the hospital!! While in the ER, I continued Colb's feeds. Also had his IPV and CoughAssist with us. Lord knows they don't have that equipment at that insufficient, non-SMA hospital! So I was able to give Colby his treatments. They did a chest X-Ray, which shows pneumonia. I could've told them that. We are waiting for the other lab results. Kosair's Transport Team came and got us around 7:00. Took us to Cincinnati Children's. Went to that ER. First to a triage room for assessment. Then to another room for holding until his room was ready in the TCC. I'm so thankful they had a room for a Colby. That was another big worry I had when deciding whether or not to take him to the hospital. Got up to the TCC room at 12:10AM. Colby is such a trooper! And he was way overdue for a cough treatment, so we did that as soon as we got him settled and the RT got the orders. Can't wipe Colby's behind without orders. Drives me up a wall. I said just bring me the equipment and I'll do it! But we didn't have to wait too long. Colby's nurse and RT (respiratory therapist) were very good. I watched the RT closely, she had her shit together. Good thing for her. If not, she'd probably have my footprint embedded in her backside. By that time, I was NOT in the mood for any goofball ding dongs.

I already know who Colby's nurse is today, and I'm pleased. She has worked in the TCC forever and took care of a Colby a lot when we were here in June for surgery. For now Colby is on IV Clindamyacin. We'll have to wait for lab results to see if he needs another and/or different antibiotic.

Colby is snoozing away. I should be probably. It will take a very long time for us to get caught up on our rest. I told my parents just to stay home last night. It was getting so late. Plus Colby is stable and we weren't having a true OMG Colby needs help now emergency. Just thought we would head to the hospital before it became that type of situation. My dad is on his way up now. Think I'll lay back down for a few minutes. I guess we're in a holding pattern until lab results come back. Hurry up and wait as they say. More info/updates as I have them.

I would like to give a shout out to Colby's rock star nurses. They all went above and beyond this past week helping me with Colby. They did anything I asked them to do. Wipe down this, let's try this with Colby's treatment, could you stop on you way here and grab me some lunch, rinse the snot out of this, answer the phone while I'm in the shower, help us pack for Cincy, etc. they all sent texts checking on him and are truly concerned about Colby. We're blessed to have the group of nurses we currently have. Because trust me, I know a loser nurse when I see one. We've had our share of those, too. But the ones we have now are awesome. Thanks guys and gals for helping me take care of sweet boy. Hope to be home soon!!

GUESS WHERE WE ARE?! Dammit

This has been the strangest illness Colby has had. He was better he was worse. Better, worse. Friday the pulmonologist started Colby on a different antibiotic. He had a dose last night and a dose this morning. I really did think he was getting better. I just got off the phone with my mom at 10:45 this morning saying how much better I thought he was doing. I swear 15 minutes later the shit hit the fan. Oh Lord give my strength. And patience. And knowledge. And some more strength.

Within 15 minutes Colby's oxygen dropped a little and heart rate increased. I gave him a set of cough assist and there was thick yellow stuff. What the fuckity fuck?! Then there was blood coming from his trach. Too much suctioning/irritation I assume. I had to start his cough treatment early because he was struggling. I was like that's it, we're done, hospital time. This is the absolute LAST place I want to be right now. But I know we're fighting a losing battle trying to treat Colby's illness at home. I feel the nurses and I did EVERYTHING possible to help Colby get over this gunk. So, the nurse packed Colby's needed stuff, I packed mine. We did a double check and then I called 911. Again, NOT what I wanted to be doing today.

We took an ambulance ride to Kosair. We're in the ER. They have done a chest X-ray. Done a respiratory culture (collected spit basically). Have accessed port and drawn labs. Kosair has called Cincy and we're working on transport.

So that's the latest. Will update when I can. Thanks everyone for the concerns and prayers.

LET'S HAVE A GOOD, COLBY GETTING BETTER FRIDAY, SHALL WE

You know, if I had a brain in my head, I would just take it easy today. But let's face it, that's a pretty big IF. I don't have anything pressing that I "have" to do today. Yes, that's an excellent idea. We'll be taking it easy around here. I could see me doing a couple loads of laundry, making some phone calls, and just hanging out with kid. I may even treat myself to Panera broccoli cheese soup because it is quite yummy and delicious and one of my favorite things on the planet. This past week has drug on and on, and on and on. Let's see if we can have some TGIF moments today.

I swear it's like Colby has been 2 different kids this week. Tuesday he was so much better. He was able to sit up in his chair 2 different times for an hour each. We had him outside practicing his driving. I was thinking oh yeah, this is the turning point for him. Then Wednesday he had a horrible day. What the what?! We tried to sit him up and it was a disaster. Within half an hour his heart rate was over 130 and his oxygen was 87-90. Oh, Colbster. Then once we got him back in his bed, it took a couple hours to calm him back down. I finally called Cincinnati yesterday. I said this is what has been going on with Colby, this is how we've been treating it. They were like yep, good job, you're doing everything right, call us if he gets worse. So we took it easy yesterday, no sitting up. Still doing cough treatments around the clock every 4-5 hours. Colby did take a big, fat morning nap yesterday, and honestly I think he needed that more than anything else. So we'll see what today brings. May try to sit him up again. He has missed 7 days of school so far, and I'm not really sure if he'll be going on Monday or not. We just have to stick with it, "treat the symptoms" as Cincinnati said, and appreciate the progress Colby has made in kicking this cold. We're not in the hospital and that's what matters! Being able to treat Colby's illness at home - priceless!

Colby was well enough yesterday that I was able to do some birthday celebrating. My BFF had bought Eric Church tickets months ago, the day they went on sale. She got me my ticket as my birthday present. Earlier in the week I was worried I wouldn't be able to go. No way I'd leave Colby if he wasn't doing well. But it all worked out and we had a great time. We all met for supper before the concert, and Eric Church puts on one helluva show. He played for over 2 hours! It was awesome. His opening act was Dwight Yoakam. Now, some of the youngsters in our group didn't like him too much. But he's had a lot of hits through the years and I loved it. Had a blast. Can't wait until our next concert.

I've been spreading the word on our fundraiser. Origami Owl jewelry is the mack-bomb-daddy! It's so unique and individual to each person's taste. You know you want some! You can come to our open house on Monday the 29th or you can shop and order online. All the proceeds from this fundraiser will go straight into our "get us a house and out of this tiny apartment" fund. I'm not sure exactly how much money we'll need for a down payment, closing costs and/or handicap accessible changes, but I'm guessing A LOT. Starting early. Doing lots and lots of fundraisers until we're out of this apartment. Somehow, some way, I'm going to make it happen. Luckily I have friends who are willing to help with fundraising and amazing support from many who know us. I simply can't do it by myself. So let's get this fundraising going. You know you're needing/wanting a new necklace or bracelet. Be sure to check out what Origami Owl has to offer. I love this jewelry and would have one of everything in the catalog if I could. If you would like to order, use this link: www.windowtomysoullockets.origamiowl.com/parties/AmyBagshaw451375/collections.ashx

Feel free to order online anytime using the above link above from NOW until September 30th. You must use this link so that your order is reflected under our fundraiser.

There's your Friday update. The nurse is back there finishing up Colby's 9AM cough treatment, which includes manual CPT, saline nebulizer, IPV and CoughAssist. Hoping, praying Colby continues to improve today and over the weekend. Thanks again, everyone, for asking me how Colby has been doing/feeling. Your texts and calls really mean a lot to me. Keeps me going. Love ya!

LET'S GET US A HOUSE!!

- Amy and Colby Fundraiser - Origami Owl Open House - 

Our next fundraising endeavor is to come up with the money needed for a down payment on a house. Oh boy, that's a doozie! This is a huge undertaking, with many fundraisers being held over the next few months. Here's the first! I'm pleased to say my friend Nancy is an Origami Owl consultant/designer and has offered to help with our fundraising efforts. Here are the details:

When

Monday, September 29th

6PM to 9PM

Where

Amy and Colby's place

Contact me if you need directions

More information

Come by anytime between 6PM and 9PM to check it all out!

If you cannot make it to the OPEN HOUSE, you can shop online at:

www.windowtomysoullockets.origamiowl.com/parties/AmyBagshaw451375/collections.ashx

Feel free to order online anytime using the shopping link below from NOW until September 30th. You must use this link so that your order is reflected under our fundraiser.

Nancy is donating 25% of sales (before tax and shipping) that will go into our "get a house and get out of this tiny apartment" fund. Everyone who orders is entered in a drawing for a FREE rose gold dangle bracelet that includes 2 dangles and a mini rose gold locket with charm. Also, everyone who orders $75 or more (before tax and shipping) is entered to win a gold chain and locket set which includes "beach" theme charms.

You are going to LOVE this jewelry because you personalize it just for you! Bracelets, earrings, lockets, bridal line, charms and chains. If you've seen it before, you will be surprised how much has changed...300 new items! Origami Owl Living Lockets are unique to every individual and the options are endless! Whether you are shopping for yourself or a gift for someone special - daughter, mother, sister, friend - you are sure to find something truly personal that will speak to your heart.

Many examples will be available for you to see exactly what Origami Owl is all about! 

Don't forget about your Christmas shopping! This jewelry makes an awesome gift...so unique and personal!

Light refreshments served! Children welcome! Bring a friend! ALL are WELCOME!