Continued improvement. That's the way, uh-huh uh-huh, we like it, uh-huh uh-huh. Talked to the attending doctor today. Do we have a big master plan? Not really, but here's what we're going to do today. Tweek Colby's vent settings some. Try to bring them down from when we put them up to get Colby's lung re-expanded. Take a chest x-ray in the morning. Hopefully that lung is re-inflated. Then we can start talking discharge and HOME. I swear I'm not telling anyone when we're going home this time. Last time it was such a bummer having to come back and say, nope, new plan, NOT getting discharged as we thought. Nah, I probably won't really do that. Because once we start planning for discharge I get really, really excited and it's hard to contain myself. Colby is as sweet and adorable as always. Jabbering away. Melting everyone with those beautiful brown eyes. How lucky am I to be that boy's mama?! Just want to get us back to the Ville where we belong.
Our respiratory therapist (RT) walked in last night and I thought, oh holy shit, you have GOT to be kidding me. You remember last hospital stay, I got into it with an RT? Colby was struggling and I didn't think she was moving fast or doing enough? Then I said we need to change his trach, immediately. And she said okay, but I have to call the attending. I about flipped my lid. I said you call whoever you want, I'm changing out Colby's trach NOW, get out of my way. Well, our RT last night was her. But you know what, everything was fine. I was watching her like a hawk, and she knew it. She did a very good job with Colby's treatment. We even worked together to do Colby's trach care last night. See, I can play well with others, sometimes, if absolutely necessary.
Who has two thumbs, is tired and grumpy, and needs an attitude adjustment? This gal right here! Everyone and everything is on my nerves today. REALLY on my nerves. I know that's the wrong attitude to have. Colby is exactly where he needs to be, and the people around me are just trying to help take the best care of him possible. But I also can see us getting home soon, and once Colby reaches this "it won't be much longer" time frame, I get antsy. But then again, we had discharge planned and then Mr. Pneumonia collapsed his lung! So I need to calm myself down. Tell myself things are getting better and things really could be so much worse. To kill time yesterday, I went through the text messages on my phone. Deleted over 100 old, unnecessary texts. Today I'm going to watch football - Go Colts!! - and read my book. I started this book when Colby was having his trach surgery over 2 years ago. Probably about time I got it finished. Try not to eat my weight in sweets and comfort food. Already have fresh fruit and yogurt waiting for me for lunch.
Thanks everyone, again, for staying in touch. I really, really mean it. THANK YOU so much for caring and supporting us through this unpredictable, often not-so-fun SMA journey. I'm grateful for all the support and prayers you send us not only when Colby is in the hospital, but every day. Mwwwaaaa, big kisses.
Sunday, October 5, 2014
Saturday, October 4, 2014
COLBY IS BETTER CAN WE JUST GO HOME NOW, PLEEEEEEEASE??
Colby had a fabulous night and is also having a fabulous morning. I really liked our nurse and respiratory therapist last night. They made sure Colby got his feedings and respiratory treatments on time. I totally understand that not everything Colby needs can be done exactly on time by them. They have other patients. I get it. But they have to understand I run a tight ship, haha, and when Colby needs respiratory treatments every 4 hours, he is to get them every 4 hours on the dot. It's no big deal. If they aren't in here in time to do the treatments, I start them. This morning everyone disappeared on me. No nurse, CNA or parent to be found. No big deal. I did Colby's g-tube care, trach care, changed him, washed his face and brushed his teeth on my own. When I think Colby needs something, he's going to get it, whether I have assistance or not. He got his first feeding at 11:00 and he's due for a respiratory treatment at noon. Just enough time to come down and blog.
I can tell Colby is feeling much better. He is alert, not sleeping as much and jabbering LOUDLY. Very loudly, and that's even with 2 mL of water in his cuff. I told him this morning there was no doubt in my mind he was going to win the Loudest Kid on the Unit award. His oxygen levels are fantastic on room air and his heart rate is staying nice and steady. His blood pressure is up again this morning. Are you kidding me, kiddo? But that's what I expect when Colby is in the hospital. I hope the day brings more improvement and comfort to sweet boy. He needs it and certainly deserves it!
I can also tell the attending doctor and I are going to disagree on when Colby gets discharged. Now, I don't want to rush anything. Last thing I want is to take Colby home before he's ready, then him have a setback and we end up back here. But then again, we're over this place. So over it! What I thought would be an easy 3-4 day stay is now going on day #8. We need to be home. But I think the attending wants to wait and maybe get Colby a sleep study scheduled one day next week. I know he needs one. He hasn't had one in a long time, and obviously Colby's vent settings need some adjusting. He also said something about waiting until Colby's IV antibiotics were done before going home. I was quick to point out that shouldn't keep us here. Colby has a port and can get his antibiotics at home. So we'll need to get another chest x-ray to see how the collapse issue is going. The attending said he hasn't decided whether to get that tomorrow or Monday. Shit, I just want to get my sweet boy home. That's really all I want right now. Oh, and some chocolate cherry Bailey's. Can't lie, I want some of that very badly right now also.
This weekend is Colby's fall break and we were supposed to be doing some day camping with Grandma and Grandpa Kenny. It kills me we're not getting to do that. I want to go work my job, decorate for Halloween/fall and spend time with my friends. I want Colby back home in his own bed with the nurses he's used to seeing. I debated on whether or not to bring up Colby's eye gaze. I didn't. I already had all his medical equipment, plus our overnight bags to bring with us in the ambulance. With the eye gaze you also have to bring the charge cord and the stand. Too much. So if we're going to be here another 4-5 days (the thought makes me throw up in my mouth a little) do I have Mom bring it up Monday or not? Decisions, decisions.
Trying to figure out what to do with the day so I don't go completely out of my mind cray-cray from boredom. Probably wouldn't kill me to step outside this hospital and go for a little walk. As long as I stay on the hospital campus, of course. This is not exactly the best part of town. Watch some college football I suppose. Read some of the book I brought. Give Colby lots of PT and we can read some of his Harry Potter book. Need to go through all our stuff and get it better organized. Yesterday when we thought we were going to the PICU, we were throwing stuff in bags right and left quite hurriedly, so everything is totally unorganized. Took me about 5 minutes to find my freakin' toothpaste this morning. And who knows, I may even blog again. Happy Saturday everyone. Get out and enjoy it if you can. Sure wish we could.
I can tell Colby is feeling much better. He is alert, not sleeping as much and jabbering LOUDLY. Very loudly, and that's even with 2 mL of water in his cuff. I told him this morning there was no doubt in my mind he was going to win the Loudest Kid on the Unit award. His oxygen levels are fantastic on room air and his heart rate is staying nice and steady. His blood pressure is up again this morning. Are you kidding me, kiddo? But that's what I expect when Colby is in the hospital. I hope the day brings more improvement and comfort to sweet boy. He needs it and certainly deserves it!
I can also tell the attending doctor and I are going to disagree on when Colby gets discharged. Now, I don't want to rush anything. Last thing I want is to take Colby home before he's ready, then him have a setback and we end up back here. But then again, we're over this place. So over it! What I thought would be an easy 3-4 day stay is now going on day #8. We need to be home. But I think the attending wants to wait and maybe get Colby a sleep study scheduled one day next week. I know he needs one. He hasn't had one in a long time, and obviously Colby's vent settings need some adjusting. He also said something about waiting until Colby's IV antibiotics were done before going home. I was quick to point out that shouldn't keep us here. Colby has a port and can get his antibiotics at home. So we'll need to get another chest x-ray to see how the collapse issue is going. The attending said he hasn't decided whether to get that tomorrow or Monday. Shit, I just want to get my sweet boy home. That's really all I want right now. Oh, and some chocolate cherry Bailey's. Can't lie, I want some of that very badly right now also.
This weekend is Colby's fall break and we were supposed to be doing some day camping with Grandma and Grandpa Kenny. It kills me we're not getting to do that. I want to go work my job, decorate for Halloween/fall and spend time with my friends. I want Colby back home in his own bed with the nurses he's used to seeing. I debated on whether or not to bring up Colby's eye gaze. I didn't. I already had all his medical equipment, plus our overnight bags to bring with us in the ambulance. With the eye gaze you also have to bring the charge cord and the stand. Too much. So if we're going to be here another 4-5 days (the thought makes me throw up in my mouth a little) do I have Mom bring it up Monday or not? Decisions, decisions.
Trying to figure out what to do with the day so I don't go completely out of my mind cray-cray from boredom. Probably wouldn't kill me to step outside this hospital and go for a little walk. As long as I stay on the hospital campus, of course. This is not exactly the best part of town. Watch some college football I suppose. Read some of the book I brought. Give Colby lots of PT and we can read some of his Harry Potter book. Need to go through all our stuff and get it better organized. Yesterday when we thought we were going to the PICU, we were throwing stuff in bags right and left quite hurriedly, so everything is totally unorganized. Took me about 5 minutes to find my freakin' toothpaste this morning. And who knows, I may even blog again. Happy Saturday everyone. Get out and enjoy it if you can. Sure wish we could.
Friday, October 3, 2014
THIS CHILD IS DRIVING ME CRAY-CRAY
Seriously, if you were to walk into Colby's hospital room right now, you'd never know the crap we were going through just 8 hours ago. His heart rate is perfectly normal, in the 80's and 90's. His temperature is perfectly normal, 37.0. His blood pressure is not only up, it's high again, like we're used to seeing when Colby is in the hospital. He's jabbering away, awake and alert, like hey y'all what's up. Let me just take a brief moment to shrug my shoulders, roll my eyes, and let out a ginormous sigh of relief. Don't get me wrong, I'm thankful for all of that. I just don't get this kid sometimes. Cannot figure him out. And it terrifies me how quickly he can go from good to bad, from bad to worse, from worse to shitty worse, then poof, from shitty worse to good again. I'm pretty sure when we get home I'm going to need some therapy. Seriously, after dealing with this SMA stuff for all this time, I'm probably well overdue.
So happy to report the update news is all good. The tests that have come back so far (urinalysis, blood gas, blood count) are all normal. Did I say that in my last blog? Sorry if I'm repeating. Running on fumes at this point. Colby is tolerating his feeds just fine, peeing and pooping just fine. And you know how important poop is in the TCC!
The plan from here: continue with respiratory treatments every 4 hours. Trying to get that left lung to pop open the rest of the way. Continue current antibiotics and wait for blood culture results - takes 36-48 hours. Adjust antibiotics if needed. The bronchoscopy has been put on hold for now, thank goodness. Did I blog that already also? Well anyways, just wanted to report that Colby is doing MUCH better.
There is no way I could thank each of you separately for all the wonderful calls, texts and Facebook posts. I'm sorry I haven't answered a lot of calls. Usually I'm busy with kid. He eats every 3 hours and is getting treatments every 4 hours, and I'm making sure that all stays on schedule. Plus there is changing him, turning him, talking with doctors and nurses, figuring out the next step, etc. My mom has gone home for a couple of days, and my dad is with us here now. Don't know when we'll get discharged. Can't really start talking about that now. Need to get Colby more stable and make sure none of this funny business happens again. What he went through overnight was horrible. But thank God we were here when it happened. What if we went home and his lung collapsed over the weekend? Can you say "disaster?!" Thank God the attending doctor just happened to be standing at the end of Colby's bed when Colby just happened to be getting his CoughAssist, and the doctor just happened to be paying attention and noticed Colby's left side not rising. I think we avoided even more trouble with that. So see, I can always, always, always find some good in a situation. That's because the love and support of my family and friends keeps me strong. Every time you all text or say, tell Colby we love him and are praying for him, I do. Thank you everyone. I feel like when we get home we all need to schedule a Group Hug Party. More soon.
So happy to report the update news is all good. The tests that have come back so far (urinalysis, blood gas, blood count) are all normal. Did I say that in my last blog? Sorry if I'm repeating. Running on fumes at this point. Colby is tolerating his feeds just fine, peeing and pooping just fine. And you know how important poop is in the TCC!
The plan from here: continue with respiratory treatments every 4 hours. Trying to get that left lung to pop open the rest of the way. Continue current antibiotics and wait for blood culture results - takes 36-48 hours. Adjust antibiotics if needed. The bronchoscopy has been put on hold for now, thank goodness. Did I blog that already also? Well anyways, just wanted to report that Colby is doing MUCH better.
There is no way I could thank each of you separately for all the wonderful calls, texts and Facebook posts. I'm sorry I haven't answered a lot of calls. Usually I'm busy with kid. He eats every 3 hours and is getting treatments every 4 hours, and I'm making sure that all stays on schedule. Plus there is changing him, turning him, talking with doctors and nurses, figuring out the next step, etc. My mom has gone home for a couple of days, and my dad is with us here now. Don't know when we'll get discharged. Can't really start talking about that now. Need to get Colby more stable and make sure none of this funny business happens again. What he went through overnight was horrible. But thank God we were here when it happened. What if we went home and his lung collapsed over the weekend? Can you say "disaster?!" Thank God the attending doctor just happened to be standing at the end of Colby's bed when Colby just happened to be getting his CoughAssist, and the doctor just happened to be paying attention and noticed Colby's left side not rising. I think we avoided even more trouble with that. So see, I can always, always, always find some good in a situation. That's because the love and support of my family and friends keeps me strong. Every time you all text or say, tell Colby we love him and are praying for him, I do. Thank you everyone. I feel like when we get home we all need to schedule a Group Hug Party. More soon.
WHERE TO BEGIN?!?!
Were you thinking, after hearing Colby's left lung collapsed, wow I sure hope Colby's stay in the hospital is gets better from this point. Well, think again! I mean it's better now, but was awful overnight. I'm pretty sure the last 12 hours in this hospital have taken 10 years off my life. Here's why.
First of all, I didn't like our respiratory therapist last night. But let's be honest, right now I don't like anybody. Except Colby and my mama. I'm so over this hospital stay. First of all, this respiratory therapist hasn't had Colby as a patient before. Not good. Someone who knows Colby and knows if his treatment is going well should be doing his treatments overnight. And that someone would be me. I gave her a chance. His treatment was due at 8PM. At 8:05 she wasn't in Colby's room, so I started his treatment. I let her step in, and she fucked up a couple of things that I feel are very important so I was like, that's it. You gots to go. I did Colby's 12AM and 4AM treatments. I was nice about it. I just said I felt helpless and wanted to do something to help Colby, so I would prefer to do the treatments. That's a true statement also. Actually I can't complain, she's the only person assigned to Colby I haven't cared for this hospital stay. Seriously though, she could have fallen from Heaven, assigned by God himself to give Colby his treatment, and I still wasn't going to like the way she did it. Can't help it, I'm in Mama Bear mode!
As the night progressed, weird things started to happen with Colby. I noticed his heart rate was low. Very low. As in, hey kid, what's up with you low. Colby slept through both treatments, which he never does, and his heart rate dropped into the 50's. If we are home and Colby is in a deep sleep, his HR should be low 70's/high 60's. I thought that was very odd. Then his body temperature started to drop. Low. Very low. Normal temperature is 37.0 Celsius. Colby's was 35.4. Also very odd. And scary. We turned the heat up in our room and wrapped Colby in warm blankets trying to get his temperature back up. Then his blood pressure was low. Very low. This is the exact opposite as normal. Usually when Colby is in the hospital, his BP is high, due to what I assume is agitation/anxiety, along with being sick. Colby's blood pressure dropped to 87/51. They even took it manually to double check. Colby's respiratory treatments were odd, too. He wasn't coughing up anything. Nothing. There were no secretions out his nose, mouth or trach. And if you read this blog at all, you know Colby is a "slobber box" and we are constantly suctioning him, especially when he's sick. I'm just going to lay it on the line here folks, I thought Colby was going to die. As a parent, what would you start to think if your child's vital signs were slowing down? The good thing was he was maintaining his oxygen. That part was perfect. Mom and I discussed some things with the nurse. After the 87/51 BP reading, we got the docs on the phone. And then chaos ensued from there.
Around 6AM this morning, I noticed some commotion in the hallway. People were walking around at a faster pace, and it seemed more people were in the hall for that time of the morning. I was thinking oh wow, what's all the scuttlebutt? We were the scuttlebutt! The whole Medical Response Team and several people from the TCC came in and we started discussing options. Do we do the bronchoscopy on Colby? Do we transfer him to the PICU? What is causing all this mess? The doctors weren't in much of a panic, I guess because Colby's oxygen was so steady. On the insides I was shaking uncontrollably. I was terrified of what was going on with Colby. I don't wish the thoughts and feelings I was having on anybody, ever. On the outside I was keeping it together, trying to sort out all the information the doctors were throwing at me. It was agreed that Colby would stay in the TCC for now. We ordered a chest x-ray, which showed much improvement over yesterday's. They ordered every lab known to man to check for further infection. How in the world can this kid still have infection?! He's been on 5 different antibiotics in the last 2 weeks, geez!
And just like that, in typical Colby fashion, no rhyme or reason, he started to improve. His 8AM treatment was more typical. His last blood pressure reading was 117/79. His heart rate is in the 80's to 90's. Last time they took his temperature, 37.1 Celsius. Urinalysis, normal. Blood gas, normal. Blood count, normal. The bronchoscopy has been put on hold and we can feed him as usual. Unreal. Unbelievable. But I swear this is exactly what happened. The child who had me terrified for his life is now jabbering away watching Frozen like, hey Mom, what's up? I don't know whether to cry, laugh or scream.
Colby's doctors have been very patient and have spent a great deal of time talking to Mom and me about the events that occurred overnight. And the answer is...we really have no answer. They said sometimes when you bump vent pressures up as much as we did yesterday to open up Colby's lung, it sort of sends a message to the brain saying, hey, we don't have to work as hard to keep up with this body. Which might explain the slowing in some of Colby's systems. His attending said look, if Colby continues to improve, his labs come back ok, and if we never find out the answer as to why this happened, then so be it. As long as he gets better. We may never have a definite answer. My explanation is you know Colby, he does things Colby's way.
I know this is a very long blog update, and I apologize. Just wanted to let everyone know what was going on. Plus blogging/writing seems to calm me down a bit, helps me collect the 1,742,865 thoughts running marathons through my brain. Colby is currently doing great! If you walked in his room right now, you'd never know all the shit that went on overnight. Colby, Colby, COLBY!! You big stinker! I'm going to try and get in a nap today and will blog later tonight. Hopefully reporting Colby has continued improvement. Thank you everyone who continues to stay in touch and pray for us. Right now it's much needed and much appreciated.
First of all, I didn't like our respiratory therapist last night. But let's be honest, right now I don't like anybody. Except Colby and my mama. I'm so over this hospital stay. First of all, this respiratory therapist hasn't had Colby as a patient before. Not good. Someone who knows Colby and knows if his treatment is going well should be doing his treatments overnight. And that someone would be me. I gave her a chance. His treatment was due at 8PM. At 8:05 she wasn't in Colby's room, so I started his treatment. I let her step in, and she fucked up a couple of things that I feel are very important so I was like, that's it. You gots to go. I did Colby's 12AM and 4AM treatments. I was nice about it. I just said I felt helpless and wanted to do something to help Colby, so I would prefer to do the treatments. That's a true statement also. Actually I can't complain, she's the only person assigned to Colby I haven't cared for this hospital stay. Seriously though, she could have fallen from Heaven, assigned by God himself to give Colby his treatment, and I still wasn't going to like the way she did it. Can't help it, I'm in Mama Bear mode!
As the night progressed, weird things started to happen with Colby. I noticed his heart rate was low. Very low. As in, hey kid, what's up with you low. Colby slept through both treatments, which he never does, and his heart rate dropped into the 50's. If we are home and Colby is in a deep sleep, his HR should be low 70's/high 60's. I thought that was very odd. Then his body temperature started to drop. Low. Very low. Normal temperature is 37.0 Celsius. Colby's was 35.4. Also very odd. And scary. We turned the heat up in our room and wrapped Colby in warm blankets trying to get his temperature back up. Then his blood pressure was low. Very low. This is the exact opposite as normal. Usually when Colby is in the hospital, his BP is high, due to what I assume is agitation/anxiety, along with being sick. Colby's blood pressure dropped to 87/51. They even took it manually to double check. Colby's respiratory treatments were odd, too. He wasn't coughing up anything. Nothing. There were no secretions out his nose, mouth or trach. And if you read this blog at all, you know Colby is a "slobber box" and we are constantly suctioning him, especially when he's sick. I'm just going to lay it on the line here folks, I thought Colby was going to die. As a parent, what would you start to think if your child's vital signs were slowing down? The good thing was he was maintaining his oxygen. That part was perfect. Mom and I discussed some things with the nurse. After the 87/51 BP reading, we got the docs on the phone. And then chaos ensued from there.
Around 6AM this morning, I noticed some commotion in the hallway. People were walking around at a faster pace, and it seemed more people were in the hall for that time of the morning. I was thinking oh wow, what's all the scuttlebutt? We were the scuttlebutt! The whole Medical Response Team and several people from the TCC came in and we started discussing options. Do we do the bronchoscopy on Colby? Do we transfer him to the PICU? What is causing all this mess? The doctors weren't in much of a panic, I guess because Colby's oxygen was so steady. On the insides I was shaking uncontrollably. I was terrified of what was going on with Colby. I don't wish the thoughts and feelings I was having on anybody, ever. On the outside I was keeping it together, trying to sort out all the information the doctors were throwing at me. It was agreed that Colby would stay in the TCC for now. We ordered a chest x-ray, which showed much improvement over yesterday's. They ordered every lab known to man to check for further infection. How in the world can this kid still have infection?! He's been on 5 different antibiotics in the last 2 weeks, geez!
And just like that, in typical Colby fashion, no rhyme or reason, he started to improve. His 8AM treatment was more typical. His last blood pressure reading was 117/79. His heart rate is in the 80's to 90's. Last time they took his temperature, 37.1 Celsius. Urinalysis, normal. Blood gas, normal. Blood count, normal. The bronchoscopy has been put on hold and we can feed him as usual. Unreal. Unbelievable. But I swear this is exactly what happened. The child who had me terrified for his life is now jabbering away watching Frozen like, hey Mom, what's up? I don't know whether to cry, laugh or scream.
Colby's doctors have been very patient and have spent a great deal of time talking to Mom and me about the events that occurred overnight. And the answer is...we really have no answer. They said sometimes when you bump vent pressures up as much as we did yesterday to open up Colby's lung, it sort of sends a message to the brain saying, hey, we don't have to work as hard to keep up with this body. Which might explain the slowing in some of Colby's systems. His attending said look, if Colby continues to improve, his labs come back ok, and if we never find out the answer as to why this happened, then so be it. As long as he gets better. We may never have a definite answer. My explanation is you know Colby, he does things Colby's way.
I know this is a very long blog update, and I apologize. Just wanted to let everyone know what was going on. Plus blogging/writing seems to calm me down a bit, helps me collect the 1,742,865 thoughts running marathons through my brain. Colby is currently doing great! If you walked in his room right now, you'd never know all the shit that went on overnight. Colby, Colby, COLBY!! You big stinker! I'm going to try and get in a nap today and will blog later tonight. Hopefully reporting Colby has continued improvement. Thank you everyone who continues to stay in touch and pray for us. Right now it's much needed and much appreciated.
Thursday, October 2, 2014
CAN'T BELIEVE I'M TYPING THIS
So, give us 10 hours or so, and we can really shake things up. When I last left you from Blogland, everything was on schedule for us to be discharged on Saturday morning. Not anymore. Colby hasn't had a great day. We noticed he wasn't improving at the same speed he has been. Plus he was having some trouble keeping his oxygen up. Nothing crazy, his oxygen was hanging around 93-94. Just made you stop and look at Colby like hey, what's going on with you, kiddo. The RT and I were doing Colby's afternoon respiratory treatment, and the attending doctor happened to be in our room. He said hey, Colby's chest is rising much more on the right side than on the left. Ah shit. You wouldn't notice it if you were up by Colby's chest doing his treatment. But I went back to where the doctor was standing at the foot of the bed and sure enough, the left side of Colby's chest was not rising properly during CoughAssist. Red flag. Big freakin' ugly red flag. We immediately got a chest x-ray, which shows...drumroll please...Colby's left lung is collapsed. Completely collapsed. I know, right?! I can't even believe I'm reporting this, but it's true. The doctor just came in and we talked it over. Hence, therefore, we had to come up with another plan, which is as follows:
It's safe to say we're NOT going home on Saturday. Ambulance transport has been cancelled. We've raised the pressures on Colby's vent. We'll return to doing respiratory treatments every 4 hours instead of every 6. We're hoping, praying, that these changes help "pop" that left lung open. If not, they will want to do a bronchoscopy on Colby tomorrow. In talking to the attending doctor, I said you know, some of us in the SMA world think these bronchoscopy procedures are done too often. Can you guarantee that if you do this bronch, you will find the source of the collapse (probably a big plug sitting in his lung) and be able to fix it? He said, well, no. Fantastic. Super duper. So, we're praying the extra treatments and upped pressures fix the collapse. However, knowing Colby's history, we'll probably have to go to Plan C. That would be the bronchoscopy. I don't know yet. Not knowing. It's horrible.
It's going to be a long night. Colby will be getting treatments at 8PM, midnight, 4AM and 8AM. And I'll be making sure they are done exactly on time. I'll be up assisting with every one of them. So, Colby could use a couple prayers if you have some to spare. We changed his vent mode a couple days ago. Tonight we've changed the vent settings. We're adding water to the cuff. We're increasing respiratory treatments. This needs to work. SOMETHING needs to work. Colby has been sick since September 17th and we've been in this hospital 5 days. I don't want this to drag out into some disgusting 30-something day hospital stay like we've had in the past. I'm so frustrated and I'm so sad for Colby. If anyone wants him to get better, I'm sure it's HIM. Hate seeing my sweet boy like this. I'll update as soon as I can in the morning to let you know how the night went. Bleh.
It's safe to say we're NOT going home on Saturday. Ambulance transport has been cancelled. We've raised the pressures on Colby's vent. We'll return to doing respiratory treatments every 4 hours instead of every 6. We're hoping, praying, that these changes help "pop" that left lung open. If not, they will want to do a bronchoscopy on Colby tomorrow. In talking to the attending doctor, I said you know, some of us in the SMA world think these bronchoscopy procedures are done too often. Can you guarantee that if you do this bronch, you will find the source of the collapse (probably a big plug sitting in his lung) and be able to fix it? He said, well, no. Fantastic. Super duper. So, we're praying the extra treatments and upped pressures fix the collapse. However, knowing Colby's history, we'll probably have to go to Plan C. That would be the bronchoscopy. I don't know yet. Not knowing. It's horrible.
It's going to be a long night. Colby will be getting treatments at 8PM, midnight, 4AM and 8AM. And I'll be making sure they are done exactly on time. I'll be up assisting with every one of them. So, Colby could use a couple prayers if you have some to spare. We changed his vent mode a couple days ago. Tonight we've changed the vent settings. We're adding water to the cuff. We're increasing respiratory treatments. This needs to work. SOMETHING needs to work. Colby has been sick since September 17th and we've been in this hospital 5 days. I don't want this to drag out into some disgusting 30-something day hospital stay like we've had in the past. I'm so frustrated and I'm so sad for Colby. If anyone wants him to get better, I'm sure it's HIM. Hate seeing my sweet boy like this. I'll update as soon as I can in the morning to let you know how the night went. Bleh.
48 HOURS AND COUNTING UNTIL HOME SWEET HOME
What do we want? Discharge? When do we get it? Saturday morning! Yep, as long as Colby continues to improve and/or not get any worse, we're out of here Saturday morning. I'm not sure if we'll have an ambulance ride or not. It's doubtful. So when my dad comes up tomorrow, he will bring the van and Colby's power chair. Going to make sure we have an extra oxygen tank on hand also. We need to keep our fingers crossed that there are no traffic issues. Colby is going to struggle as it is sitting up the 100 miles from here to home. I know he's ready to go home. I don't think we're rushing it at all. He's getting better rest and tolerating his respiratory treatments so much better than he was a few days ago. But sitting up will be an issue. It always is when Colby is sick and/or recovering from an illness. Ambulance or not, we're getting this sweet boy home before he catches some other nastiness in the TCC.
Now, if you don't like or have an appreciation for cussing, then please skip over this paragraph. I'm so fucking mad at the moment I'm shaking. As soon as rounds were over this morning and it was decided Sat morning was the target date for discharge, I called our nursing agency. They informed me they had NO nursing supervisor to come out on Saturday and we couldn't have nursing until Sunday. Excuse me?! WTH did you just say?! Here's what happens. When Colby gets admitted to the hospital, he gets "discharged" from the nursing agency. Once we get home, we can't have a nurse come out and work until the nursing agency does a "resumption of care". Well, there is no one available Saturday to do that. Both the nurse supervisors will be out of town. Isn't that just fabulous? Just freaking wonderful, perfectly F-ed up fabulous? Thank God I can take care of Colby by myself. It's not that we HAVE to have a nurse on Saturday. It's the point that we NEED one. In this instance, I NEED the help, and that's not something you hear me say often! I'm tired, need to get us unpacked, check the mail, empty the fridge, etc. All that crap that needs to be done when you've been gone for a week, on top of take care of Colby, who is still getting cough treatments every 6 hours around the clock to knock out the rest of his illness. Stupid asshole nursing agency. I made it perfectly clear how I felt with them when I was on the phone with them this morning. You know I did. It's just ridiculous. Okay, needed to vent. It is what it is, and I'm going to deal with it. Sunday morning at 9AM there will be a nursing supervisor at the apartment to do a resumption of care. I'm trying to line up nursing for Sunday now.
There's been some debate on whether or not we should or shouldn't be putting water in Colby's trach cuff. At home, we have never put anything in his cuff. We were never told to do so. But when he had his spine surgery and also with this hospital stay, they put water in his cuff. So I said okay, we need to get this straightened out so I know what in the crap to do with this cuff when we get home. They ran a NICO test on Colby's trach last night. They figure out, when Colby is sleeping, how much water needs to go in the cuff to maximize Colby's volumes, minimize his leak, etc. Basically figure out if water, and then how much water, in his trach cuff helps him breathe better. Turns out Colby needs anywhere from 2.2-2.5 mL in his trach overnight. Huh, who knew?! They are going to read over all the data from last night's NICO and tell me what to do from this point forward. Glad to be getting this done. Anything that will help Colby breathe easier/better is okie-dokie-artichokie with me.
That's what I know. Can't wait to get home! One week in the stinky hospital is enough. Can't wait to have my sweet boy get back to his normal funny, eye-rolling, jabbering self. Can't watch to watch football on my own dang couch and sleep in my own bed. Can't wait to see my friends, hopefully go out to dinner with some of them one day next week. Come on, Saturday morning, get us home!
Now, if you don't like or have an appreciation for cussing, then please skip over this paragraph. I'm so fucking mad at the moment I'm shaking. As soon as rounds were over this morning and it was decided Sat morning was the target date for discharge, I called our nursing agency. They informed me they had NO nursing supervisor to come out on Saturday and we couldn't have nursing until Sunday. Excuse me?! WTH did you just say?! Here's what happens. When Colby gets admitted to the hospital, he gets "discharged" from the nursing agency. Once we get home, we can't have a nurse come out and work until the nursing agency does a "resumption of care". Well, there is no one available Saturday to do that. Both the nurse supervisors will be out of town. Isn't that just fabulous? Just freaking wonderful, perfectly F-ed up fabulous? Thank God I can take care of Colby by myself. It's not that we HAVE to have a nurse on Saturday. It's the point that we NEED one. In this instance, I NEED the help, and that's not something you hear me say often! I'm tired, need to get us unpacked, check the mail, empty the fridge, etc. All that crap that needs to be done when you've been gone for a week, on top of take care of Colby, who is still getting cough treatments every 6 hours around the clock to knock out the rest of his illness. Stupid asshole nursing agency. I made it perfectly clear how I felt with them when I was on the phone with them this morning. You know I did. It's just ridiculous. Okay, needed to vent. It is what it is, and I'm going to deal with it. Sunday morning at 9AM there will be a nursing supervisor at the apartment to do a resumption of care. I'm trying to line up nursing for Sunday now.
There's been some debate on whether or not we should or shouldn't be putting water in Colby's trach cuff. At home, we have never put anything in his cuff. We were never told to do so. But when he had his spine surgery and also with this hospital stay, they put water in his cuff. So I said okay, we need to get this straightened out so I know what in the crap to do with this cuff when we get home. They ran a NICO test on Colby's trach last night. They figure out, when Colby is sleeping, how much water needs to go in the cuff to maximize Colby's volumes, minimize his leak, etc. Basically figure out if water, and then how much water, in his trach cuff helps him breathe better. Turns out Colby needs anywhere from 2.2-2.5 mL in his trach overnight. Huh, who knew?! They are going to read over all the data from last night's NICO and tell me what to do from this point forward. Glad to be getting this done. Anything that will help Colby breathe easier/better is okie-dokie-artichokie with me.
That's what I know. Can't wait to get home! One week in the stinky hospital is enough. Can't wait to have my sweet boy get back to his normal funny, eye-rolling, jabbering self. Can't watch to watch football on my own dang couch and sleep in my own bed. Can't wait to see my friends, hopefully go out to dinner with some of them one day next week. Come on, Saturday morning, get us home!
Wednesday, October 1, 2014
WONDERFUL NEWS WEDNESDAY
Yep, Colby is moving right along. More progress in the right direction. We've bumped his oxygen down a bit more. He started at 30%, now he's at 24%. He only has to go to 21%, which is "room air" and will no longer need extra oxygenation. He would probably do fine if I went ahead and put him on 21%, but no need to rush. We've been able to stretch out his cough treatments. Instead of doing them around the clock every 4 hours, we're doing them every 6 hours. This is a great improvement and will allow Colby (and the rest of us) to get more rest. Seriously, my son is a kickass rock star stud! They have changed his Clindamycin to g-tube form instead of IV. Also the discharge nurse is working on a preauthorization for Tobramycin drops for when we get home. Apparently they are very expensive and need to be ordered from a specialty pharmacy. We also got his scheduled trach change done this morning and when I left to take a little break, Grandma was putting in a SpongeBob DVD for Colbster. I'm sure he's perfectly content with that.
We started to do a little planning for discharge. If Colby continues at this rate, we're thinking Friday or Saturday. Can you say YES, please and thank you. The only concern is transport home. We don't think insurance will approve an ambulance ride home, since Colby won't be in an "emergency" situation. That's a matter of opinion, but when it comes to insurance coverage, my opinion of course doesn't matter. So if we have to take him home in his wheelchair in the van, that will prove quite interesting. There is no way in the world he will be able to tolerate sitting up that long. We're going to try to sit him up in bed today. This will be the first time the kid has sat up in any way, shape or form since last Friday. And if you remember, that didn't go so well. I guess I'll worry about the ride home later. Right now just concentrate on Colby continuing to improve.
That's about all I know for now. My mom is here with us. She was supposed to bring up some yummy, healthy veggie soup they made, but the goofball left it at home sitting in the fridge. Dangit, Linda. Cafeteria food is expensive. My stupid, hacky cough has lessened considerably. We did a load of laundry this morning. I was down to my last pair of clean undies. Wish I could go back to the room, take a nap, and when I woke up we were home, getting back to our "normal" lives. Super thankful for this hospital, but so ready to get out of here. I guess I can't complain, though. This is the first respiratory illness Colby has had a hospital stay for since getting his trach in May 2012. Pretty impressive, sweet boy. Hopefully once we get home, we'll go another 2+ years before another hospitalization. Or 3. Or 4. Or 5 years, just sayin'.
Hope to keep the good news coming. Hope that I'm blogging from the Cincinnati Children's Hospital Family Resource Center just a couple more days. Bye for now, kiddos.
We started to do a little planning for discharge. If Colby continues at this rate, we're thinking Friday or Saturday. Can you say YES, please and thank you. The only concern is transport home. We don't think insurance will approve an ambulance ride home, since Colby won't be in an "emergency" situation. That's a matter of opinion, but when it comes to insurance coverage, my opinion of course doesn't matter. So if we have to take him home in his wheelchair in the van, that will prove quite interesting. There is no way in the world he will be able to tolerate sitting up that long. We're going to try to sit him up in bed today. This will be the first time the kid has sat up in any way, shape or form since last Friday. And if you remember, that didn't go so well. I guess I'll worry about the ride home later. Right now just concentrate on Colby continuing to improve.
That's about all I know for now. My mom is here with us. She was supposed to bring up some yummy, healthy veggie soup they made, but the goofball left it at home sitting in the fridge. Dangit, Linda. Cafeteria food is expensive. My stupid, hacky cough has lessened considerably. We did a load of laundry this morning. I was down to my last pair of clean undies. Wish I could go back to the room, take a nap, and when I woke up we were home, getting back to our "normal" lives. Super thankful for this hospital, but so ready to get out of here. I guess I can't complain, though. This is the first respiratory illness Colby has had a hospital stay for since getting his trach in May 2012. Pretty impressive, sweet boy. Hopefully once we get home, we'll go another 2+ years before another hospitalization. Or 3. Or 4. Or 5 years, just sayin'.
Hope to keep the good news coming. Hope that I'm blogging from the Cincinnati Children's Hospital Family Resource Center just a couple more days. Bye for now, kiddos.
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