Daniel's surgery yesterday went as planned. We didn't get a chance to run down the surgery with Dr. Wa until today as his surgeon had five surgeries to attend to yesterday - Daniel was #2. His was probably the simplest of them all from the sound of it. She reported that it all looked really good and from the looks of it Daniel seems fine.
Daniel will be moving down the hall to the less severe ICU burn ward because there were other critical patients being admitted today. For Daniel, transitions can be stressful and for the new burn patient taking his room, well... getting burned sucks - we already know that though, right? This move shows the progress that Daniel has made with his > 50% body burn. It suggests that he's well enough to move down in status from ICU to "step-down" to now "floor" status all in a matter of about two weeks. We're glad he's recovering so well, but there's so much more to go with his recovery and getting him home.
==+
Every so often I've found myself getting worn down by the ordeal we're going through with Daniel. I tend to get a bit gloomy. I believe that's part of being human and dealing with what life dishes out sometimes. Today was one of those days. Headache, grouchy, depressed, feeling overwhelmed... When I start to feel this way the best thing for me is to get some exercise which is what I did this morning. Riding or running is my "me" time and it's something I have to have when "it" gets too much.
Though it was pretty dang cold out this morning (or as my cousin Joel would say "bitey") I rode my bicycle 20 miles to the hospital and stored it in our car in the parking lot. Luckily it didn't start raining or snowing though it is in the forecast for later today. I could have stayed out and ridden another 20 and that would have left me feeling very relaxed (and hungry). It was just what I needed and could squeeze in today.
==+
We had a few visits from the rehab doctors and director upstairs. They stopped in to see if we had questions or could help answer anything and better understand Daniel. They are in consult with Children's Hospital and part of the army of people that are helping to ensure Daniel's transition to in-patient rehabilitation goes smoothly. We still don't know if that rehab place will indeed be Children's or upstairs or something else so that remains to be determined and APPROVED.
We're now in our new room 336 on the burn floor at the other end of the ICU. We have a great view west and can see the Rocky Mountains off in the distance. Closer in is a lovely parking structure and the Colonel's Row - a block of 1940s era apartments for retired officers.
We've got Disney classics playing (Snow White) and Daniel seems to have settled in and acting like it's no big thing to move so that's good. I think I'll end here and we'll pick things up tomorrow.
Friday, March 31, 2017
Thursday, March 30, 2017
Day 65 - The Final Surgery
Today marks the day of Daniel's last graft surgery - it's also his mom's birthday so that's a nice gift! As long as it goes well he'll be all patched up. It is very likely that he may need future surgeries like 18 months from now to graft more skin to his armpits to allow more flexibility. But that's so far off from now we can't think about it now. Burns are the injury that "keeps on giving"... (...you more pain and surgeries apparently).
We walked Daniel down to his surgery pre-op pit stop (well he was in a bed, but we walked alongside and held hands). Once there he seemed to be quite alert and rather unhappy about the whole thing. I think he's formed memories from the prior escapades to surgery pit stop row and remembered that this was not his happy place. We continued to soothe and help him relax. It was hard to tell what he was thinking - am I scared? am I uncomfortable? do I hurt? why am I here again? dad, stop rubbing my neck? We just could not tell or help him that much, so we told him to be brave and that it would be the last time here; that this would be the shortest and easiest of all the surgeries. Then the anesthesiologist gave him some Fentanyl and not surprisingly he calmed WAY down and was wheeled into his operating room.
Dawn and I stepped out for lunch. When we returned we found this giant poster "get well card" sitting in his room with a nice card from one of my teacher friends from Euclid. I wish we'd been here when it was delivered. It was so unexpected and touching. On the one side there were short notes of support from students from Euclid and on the other side was Daniel's photo from the first day of the blog.
So we're waiting for Daniel to return from surgery. I've placed the big poster on the foot of his bed so he can see it when he slides into his bed.
==+
We just got word that Daniel is through with his surgery, but still agitated so Dawn is meeting him in post-op while I stay here in his room.
We walked Daniel down to his surgery pre-op pit stop (well he was in a bed, but we walked alongside and held hands). Once there he seemed to be quite alert and rather unhappy about the whole thing. I think he's formed memories from the prior escapades to surgery pit stop row and remembered that this was not his happy place. We continued to soothe and help him relax. It was hard to tell what he was thinking - am I scared? am I uncomfortable? do I hurt? why am I here again? dad, stop rubbing my neck? We just could not tell or help him that much, so we told him to be brave and that it would be the last time here; that this would be the shortest and easiest of all the surgeries. Then the anesthesiologist gave him some Fentanyl and not surprisingly he calmed WAY down and was wheeled into his operating room.
Dawn and I stepped out for lunch. When we returned we found this giant poster "get well card" sitting in his room with a nice card from one of my teacher friends from Euclid. I wish we'd been here when it was delivered. It was so unexpected and touching. On the one side there were short notes of support from students from Euclid and on the other side was Daniel's photo from the first day of the blog.
 |
| That's me with Leadership Class on the Challenge Course from this past fall. |
 |
| Yes Daniel Get Well Soon |
==+
We just got word that Daniel is through with his surgery, but still agitated so Dawn is meeting him in post-op while I stay here in his room.
Wednesday, March 29, 2017
Day 64 - The Tubes
When we arrived this morning we found Daniel in a new comfort position with his feet hanging off the edge of the bed. His awesome nurse K. (She's a Beauty) had him in his Gunslinger already and Daniel found a way to make himself comfortable - well at least as much as one could be with their arm up and out in this contraption. We need for him to be wearing this device for about 4 hours per day to help with the contractures forming in his arms and shoulders. (Mondo Bondage)
During rounds we learned that Daniel has been meeting his nutrition goals for the past 5 days so that means his feeding tube can finally come out. That's been in his nose since day one. It's the last tube to go on him - so there's the reason for the title to today's post.
Once Daniel was premedicated he (White Punks of Dope) was ready for a session of wound care complete with loads of stretching by two OTs that stretched his arms and shoulders way beyond what he can tolerate when he's at his baseline. I'm sure all he could think was (Don't Touch Me There)!
We're all set for his last (we hope) surgery tomorrow. Once he's healed up some he will be heading to rehab - we've not yet heard where that will be for sure. A decision will be made by next week then a plan will be developed to figure out how to transition. Daniel has difficulty with transitions sometimes, but maybe he's ready for a change now from his life on the burn ICU. I'd be a bit stir-crazy (Boy Crazy) by now that's for sure.
[Why The Tubes references? Well Dan got his feeding tube out at last! Back in the '70s I remember searching all over town with my mom trying to find a record my big bother really wanted. It was this one I think.
We had no clue how edgy and PUNK this album was or my mom would have never let him have it. I finally found it at the record store at a mall in Indiana or it might have been at Sears in their extremely way too hip "rock" section. Hope you were't too off-put by this post and all the kinky Tubes references...]
During rounds we learned that Daniel has been meeting his nutrition goals for the past 5 days so that means his feeding tube can finally come out. That's been in his nose since day one. It's the last tube to go on him - so there's the reason for the title to today's post.
We're all set for his last (we hope) surgery tomorrow. Once he's healed up some he will be heading to rehab - we've not yet heard where that will be for sure. A decision will be made by next week then a plan will be developed to figure out how to transition. Daniel has difficulty with transitions sometimes, but maybe he's ready for a change now from his life on the burn ICU. I'd be a bit stir-crazy (Boy Crazy) by now that's for sure.
[Why The Tubes references? Well Dan got his feeding tube out at last! Back in the '70s I remember searching all over town with my mom trying to find a record my big bother really wanted. It was this one I think.
We had no clue how edgy and PUNK this album was or my mom would have never let him have it. I finally found it at the record store at a mall in Indiana or it might have been at Sears in their extremely way too hip "rock" section. Hope you were't too off-put by this post and all the kinky Tubes references...]
Tuesday, March 28, 2017
Day 63 - Rainy Day
Today was a quiet day filled with indoor activities. Outside it was cold and rainy. Inside we did a lot of tasks.
In the morning we ate a big breakfast. Then we wore our face plate in bed. The ST came by and made a small adjustment to his face plate and it had less pinching on his collarbone.
We ate lunch and Daniel helped a lot. After that his PT worked with us in the gym. He did some big ball play, walked about forwards and backwards on a parallel bar ramp and then we searched the room for candy that he would hand us and then we'd challenge him to raise up his hand to grab it from us and only then we'd pop it in his mouth.
In the morning we ate a big breakfast. Then we wore our face plate in bed. The ST came by and made a small adjustment to his face plate and it had less pinching on his collarbone.
We ate lunch and Daniel helped a lot. After that his PT worked with us in the gym. He did some big ball play, walked about forwards and backwards on a parallel bar ramp and then we searched the room for candy that he would hand us and then we'd challenge him to raise up his hand to grab it from us and only then we'd pop it in his mouth.
This afternoon Daniel spent 2 hours straight in his gunslinger. He just sat quietly. The less we did or interacted with him the better. Beforehand our PTs noticed that a few spots on his legs had been scratched off (probably caused by his itchiness) so our nurse covered them with mepilex then put on some tube net that fits really tight against his skin to hold everything in place. This material is supposed to help with the itching as well so we hope Daniel enjoys wearing it. You can see his legs are wrapped in it in this picture. It also makes it harder for him to scratch his skin so there won't be more damage.
It's seems like the itching is under control today and the medications are helping. Dan's skin dries out so quickly. Getting lotion on the exposed areas is a good thing to do, but staying on it keeps us busy.
Update: Daniel's surgery has now been set for Thursday - the 2nd queued up for the day. For the small patch on his lower left back they will probably harvest from his upper back since he will already be on his tummy for the procedure. His legs have healed and could also be used if need be except for the small spots he scratched today and yesterday.
With all his verbal complaining (which can get annoying) he's been complying and cooperating with all that we've asked of him today. You just have to ignore the whining, put it out of your mind and keep doing what you're doing.
Monday, March 27, 2017
Day 62 - In the Land of the Simpsons?
Daniel has definitely arrived in the land of the itch. Today Daniel continued to feel irritated and was not able to do too much therapy until we got some anti-itch medications going. The Atarax helped and we also tried another that should make him less drowsy.
We're trying everything we can to help. It was suggested that a deeper massage style is better for the itch than a soft touch. Keeping his skin moist is also a key strategy. There are a few medications that seem to be helping and we've discovered that when he wears his new face plate it seems to calm him and puts him to sleep. We have a weighted blanket that we will try tomorrow and see if that soothes his itchy skin. The weighted blanket can be a tool with sensory issues that can calm individuals. It's never been much of a help with Daniel in the past but the pressure against his new skin may feel soothing so we'll give it a try and report how that goes tomorrow.
Today during wound care we learned that Daniel's back grafts are looking great and will fill in on a few spots. There's one rectangular section on his left side of back that needs a graft as it will heal faster that way. We could wait, but it might not fill in and would take longer than re-grafting so this is the best way to heal this area and get Daniel moved off the ICU floor and into full-on recovery. This final surgery is planned for Wednesday and will probably not take too long to complete.
Now if we can just get his mind off the itching and get his feeding level up then work on all the rehabilitation we'll be heading home sooner than later. Home is probably more than a month away, but there's no way to know until we get further along in rehab.
We're trying everything we can to help. It was suggested that a deeper massage style is better for the itch than a soft touch. Keeping his skin moist is also a key strategy. There are a few medications that seem to be helping and we've discovered that when he wears his new face plate it seems to calm him and puts him to sleep. We have a weighted blanket that we will try tomorrow and see if that soothes his itchy skin. The weighted blanket can be a tool with sensory issues that can calm individuals. It's never been much of a help with Daniel in the past but the pressure against his new skin may feel soothing so we'll give it a try and report how that goes tomorrow.
Today during wound care we learned that Daniel's back grafts are looking great and will fill in on a few spots. There's one rectangular section on his left side of back that needs a graft as it will heal faster that way. We could wait, but it might not fill in and would take longer than re-grafting so this is the best way to heal this area and get Daniel moved off the ICU floor and into full-on recovery. This final surgery is planned for Wednesday and will probably not take too long to complete.
Now if we can just get his mind off the itching and get his feeding level up then work on all the rehabilitation we'll be heading home sooner than later. Home is probably more than a month away, but there's no way to know until we get further along in rehab.
Sunday, March 26, 2017
Day 61 - Itch is a Pain
Burn patients suffer many things on their way to recovery. One of the most vexing things that happens is that as your skin heals it will itch. The doctors say that's a good sign when you start itching, but it can drive you nuts. In Daniel's case the itching began a few days ago and today it seemed to reach its peak.
All day today Daniel has been uncomfortable. He didn't sleep well last night. The nurses observed that he was itching so they tried Benadryl in the middle of the night, but I think that it made him anxious AND didn't help with the itch. There are other medications that work and our doctor set it up so that he could try it out. This medication is Atarax and in this situation is reduces the histamine that is normally being produced by the body that is causing the itching sensation. So far it seems like it was working well so we'll see if that trend continues through the rest of the day.
When Daniel is uncomfortable it's going to be a tough day for all of us. He's been unwilling to eat much, drink or want to get up and walk. While we stuffed him yesterday and he seemed to eat really well, today it's not going so well.
We've all tried to help keep him comfortable, but nothing seems to be helping so we've really backed off on the activities for today hoping tomorrow will be a better day and that he feels like doing more.
Here's a few memorable characters offering up a few solutions to the "itch" problem:
I've been reading up on the cause of the itching and that it can be said that it's a altered form of pain. The same nerve receptors that "feel" pain in burn patients are triggered with this new sensation of itching. There's more to it than that, but it's got to be really intense with the itching coming from all over his body at different intensities. Have you ever had an itch that is so intense you can't seem to satisfy it? Was it from a burn or poison ivy or something else? If you found something that worked write it down in a comment for this post please!
Source burn resource OSU: https://patienteducation.osumc.edu/Pages/search.aspx?k=burn
All day today Daniel has been uncomfortable. He didn't sleep well last night. The nurses observed that he was itching so they tried Benadryl in the middle of the night, but I think that it made him anxious AND didn't help with the itch. There are other medications that work and our doctor set it up so that he could try it out. This medication is Atarax and in this situation is reduces the histamine that is normally being produced by the body that is causing the itching sensation. So far it seems like it was working well so we'll see if that trend continues through the rest of the day.
When Daniel is uncomfortable it's going to be a tough day for all of us. He's been unwilling to eat much, drink or want to get up and walk. While we stuffed him yesterday and he seemed to eat really well, today it's not going so well.
We've all tried to help keep him comfortable, but nothing seems to be helping so we've really backed off on the activities for today hoping tomorrow will be a better day and that he feels like doing more.
Here's a few memorable characters offering up a few solutions to the "itch" problem:
I've been reading up on the cause of the itching and that it can be said that it's a altered form of pain. The same nerve receptors that "feel" pain in burn patients are triggered with this new sensation of itching. There's more to it than that, but it's got to be really intense with the itching coming from all over his body at different intensities. Have you ever had an itch that is so intense you can't seem to satisfy it? Was it from a burn or poison ivy or something else? If you found something that worked write it down in a comment for this post please!
Source burn resource OSU: https://patienteducation.osumc.edu/Pages/search.aspx?k=burn
Saturday, March 25, 2017
Day 60 - Sista Visita
Amanda drove all the way out to visit this weekend. She assisted Daniel with his power protein breakfast of sausage, bacon, toast and protein juices. Amanda worked some lotion in to Dan's burn areas, massaged his face and soothed his itchy arms. Once breakfast was complete we all took a loop-walk across the 3rd floor.
Today Daniel's pain seems to be more under control with an additional bump to his medications. We've also discussed timing for administering pre wound-care pain meds and PRNs for pain that we can request for the additional PT/OT tasks he's taken on since yesterday.
Dawn was calculating the time needed to complete all the tasks we have for Daniel and there's hardly time in the day to do them all. Here's a partial list of daily tasks for Daniel. Some of these tasks could be doubled up, but we don't want to make Daniel too uncomfortable with all the rehabilitation that's being thrown at him. With each day we expect more time spent wearing the devices (airplane splint, MPA, face plate) since the more each of them are used the better the outcome. Here's the current goals we're trying to perform with Daniel:
Add in wound care, bathroom breaks, medication and measuring vital signs by nurses and you can see that Daniel has a very full dance card.
This afternoon Daniel's PT A. stopped in to check on how his new devices are working. It so happened that he was wearing his airplane splints at the time so we asked about his wearing that PLUS his face plate and she helped to see how that would work. This configuration was very uncomfortable for Daniel so it was good for her to see the struggles he was having with it too. Now he's back in bed and wearing just the face plate and he seems much happier with it on.
In a short while Daniel will be premedicated for a trip to the tub room where we will try to have Daniel take his first shower. This will be his first shower so it will be good to see how he likes it. He used to love taking long warm showers so I hope he will enjoy this activity still. I doubt he will be able to do much with the actual washing since his arms are so limited in their movement, but we hope he still can enjoy the experience.
Tonight we will be leaving early to enjoy a dinner out with his sister and grandparents at Old Major. Then it's back to it tomorrow.
Today Daniel's pain seems to be more under control with an additional bump to his medications. We've also discussed timing for administering pre wound-care pain meds and PRNs for pain that we can request for the additional PT/OT tasks he's taken on since yesterday.
Dawn was calculating the time needed to complete all the tasks we have for Daniel and there's hardly time in the day to do them all. Here's a partial list of daily tasks for Daniel. Some of these tasks could be doubled up, but we don't want to make Daniel too uncomfortable with all the rehabilitation that's being thrown at him. With each day we expect more time spent wearing the devices (airplane splint, MPA, face plate) since the more each of them are used the better the outcome. Here's the current goals we're trying to perform with Daniel:
- MPA (mouth stretching device) - wear 2x per day for 30 minutes = 1 hour
- Face plate (stretches & heals skin on face and neck) - wear 4-6x per day for 30 minutes = 3 hours
- Airplane splint (stretches shoulder, armpit and right elbow) - wear 4x per day for 1 hour = 4 hours
- Gym therapy - stretch with big ball, use pedals to work arms/legs
- Stretch neck to left and right to increase flexibility
- Walking - we're taking Dan on short 10 minute walks every 2 hours or so.
- Eating - Dan is taking up to 90 minutes to eat a meal if we have him using his hands to feed.
Add in wound care, bathroom breaks, medication and measuring vital signs by nurses and you can see that Daniel has a very full dance card.
This afternoon Daniel's PT A. stopped in to check on how his new devices are working. It so happened that he was wearing his airplane splints at the time so we asked about his wearing that PLUS his face plate and she helped to see how that would work. This configuration was very uncomfortable for Daniel so it was good for her to see the struggles he was having with it too. Now he's back in bed and wearing just the face plate and he seems much happier with it on.
In a short while Daniel will be premedicated for a trip to the tub room where we will try to have Daniel take his first shower. This will be his first shower so it will be good to see how he likes it. He used to love taking long warm showers so I hope he will enjoy this activity still. I doubt he will be able to do much with the actual washing since his arms are so limited in their movement, but we hope he still can enjoy the experience.
Friday, March 24, 2017
Day 59 - Fitting End to the Week
Daniel has had a busy day today. He had a visit from his grandparents, therapists galore, and even more therapists. His grandparents visited with him and helped with breakfast while we listened to morning rounds, saw him take a long walk and observed the OT/PT/ST's gather while he was fitted with a new face plate.
You may recall when his face was scanned two weeks ago for a face plate. Today was the delivery day for the plate that he will wear for the next year. This clear plate will help to press and stretch the skin around his chin and throat and improve the skin's look and flexibility over time. Daniel had the attention of these six ladies for the first fitting while they focused on fit and form.
You may recall when his face was scanned two weeks ago for a face plate. Today was the delivery day for the plate that he will wear for the next year. This clear plate will help to press and stretch the skin around his chin and throat and improve the skin's look and flexibility over time. Daniel had the attention of these six ladies for the first fitting while they focused on fit and form.
After a few adjustments. They marked it up with a sharpie then took it back to the lab.
A trim here, a snip there...
And now it's ready. We will slowly ramp up the wear day by day until he's wearing it as much as possible. As he gains his weight back and builds more muscle mass a new scan will be needed, but for now this plate should work well.
If that wasn't enough another OT by the name of A. came in to address his right arm with the introduction of the Airplane Splint. This device will help to stretch his arm and hold his elbow in place the way the foam airplane wedges used to. The problem is that he's figured out how to yank his arms loose from the foam wedges and they were no longer helping to stretch his shoulders and armpits.
This new device is rigid and will hold his arm correctly and apply a nice stretch to his shoulder and across his chest. It prevents him from wiggling out of it and it will work better, but he definitely does not like it. We will have to see how he tolerates this over time. Getting additional pain meds on board will help and we've addressed that with his nurse and staff. If this device works for Daniel we'll probably get another one for his left arm then alternate their use during the day.
I continue to provide itch and scratch relief as much as I can. His skin seems to be drying out more than before so I've been soothing the itch with lotion and helping any way I can to distract him from the discomfort.
Today was a hard day for Daniel. His base-level of discomfort is heightened now with these new devices, but it will speed his recovery and improve his outcome if we can be vigilant about wearing these new devices.
Thursday, March 23, 2017
Day 58 - Good Progress
While it may seem like the days are becoming routine to us we're learning just as much about Daniel and his injury as we were on Day 1.
Something interesting happened today when he was in the gym working with his PT S. who has only worked with him a few times. We were doing some stretching on a mat and even leaning forward on a big ball and rolling forward to stretch his back and work the core. We even got Daniel in to a cat-cow pose (yoga people). That took some work to roll him up and do it and he didn't want to put any weight on his right arm. The point though is how he will try anything his therapists have asked. He complains a bit and you can see the pain all over his face and body, but he amazes me every time. He's such an awesome patient!
Last night we set up the pedals for his hands/arms to pedal with. This appeared to be a hard task for him so we had candy on hand to give him after we did sets of 5. He showed so much determination it was humbling to see. He'd grit his teeth and power through it, then get some highly motivating candy, rest then go back at it again. I wonder if he understands how much this is going to pay off for him in the long run. It's really amazing how hard he is working!
via GIPHY
Something interesting happened today when he was in the gym working with his PT S. who has only worked with him a few times. We were doing some stretching on a mat and even leaning forward on a big ball and rolling forward to stretch his back and work the core. We even got Daniel in to a cat-cow pose (yoga people). That took some work to roll him up and do it and he didn't want to put any weight on his right arm. The point though is how he will try anything his therapists have asked. He complains a bit and you can see the pain all over his face and body, but he amazes me every time. He's such an awesome patient!
Last night we set up the pedals for his hands/arms to pedal with. This appeared to be a hard task for him so we had candy on hand to give him after we did sets of 5. He showed so much determination it was humbling to see. He'd grit his teeth and power through it, then get some highly motivating candy, rest then go back at it again. I wonder if he understands how much this is going to pay off for him in the long run. It's really amazing how hard he is working!
Anyway, back to the interesting realization... After this ball-holding session Daniel was catching his breath and resting. I was stroking his arms and unknowingly scratching them to soothe him. (You can see from the picture that he's wearing gloves and a tight fitting elastic garment that runs up to his shoulders.) I stopped after a moment and we continued to chat, but Daniel raised his arms up to me to continue the scratching. I mentioned that he liked it and the PT said "oh yes, once the grafts have taken the skin becomes really itchy!"
So I now have a new purpose and title as Chief Itcher & Scratcher! In addition to getting lotioned-up each day Daniel seems to love being itched gently all over. I'm so glad we discovered this. We talked this over with Dr. B. who popped in and he explained all about it and that it was something burn patients find really annoying - the itchy new skin. Imagine being Daniel without a voice and having itching all over and not be able to scratch that itch! (Especially since he can't use his hands much with all the stiffness and pain in his limbs.)
Graft status: There's a big burn conference in Boston (probably Burn-Con 2017 East Coast edition or some sort of catchy name) where Daniel's surgeons and many of the staff are attending. During this time Daniel's wounds have been healing, but there's concern from the staff here about whether his back will require a new graft or not. Dr. Wi. views the daily photos of Dan's back, but wants to wait and see how it looks when he returns this weekend.
In the interim we continue to work Daniel and do a lot of PT & OT with him on our own. The therapists have stopped in and feel that there's nothing they could show us that we aren't already doing so we are feeling pretty good about ourselves.
Not to toot our horn too loudly, but at least a dozen or so of the staff have said "you're hired" to us because we just jump in and do most of the tasks that they do (apart from wound care and administering meds). We've helped move him in and out of bed, wiped his butt, helped change his sheets (wounds bleed and weep a lot!), fed him, reset alarms on his bed and reconnected his sensors and stuff... So I guess we have done a lot to help staff (and Daniel), but it's what we do.
Wednesday, March 22, 2017
Day 57 - Same old
Not much to report today. Dan is doing well. No new issues have come up. We think his back graft will need to be redone, but maybe not all of it so we'e waiting for the surgeons on a decision - that could be a day or so before we know the next steps and if surgery is required (likely).
He's eaten well so far today. We spaced the time between his breakfast and lunch because he got his wound care today in his room around 11am. That gave us a break while we grabbed a bite. When we were able to return to Daniel's room we waited a bit longer for his lunch to arrive and he started eating and ate pretty well.
We took a short break and went on a 2nd walk - longer than the first by double. By the end he appeared to be pretty fatigued so we came back to the room and sat in a chair while he relaxed. We did a puzzle, ate some net-thins and then headed back to bed to rest his legs. They had become very red where his grafts are from sitting upright. They looked really painful!
This evening we will take another walk, eat a light dinner and get ready to do it all over again tomorrow.
He's eaten well so far today. We spaced the time between his breakfast and lunch because he got his wound care today in his room around 11am. That gave us a break while we grabbed a bite. When we were able to return to Daniel's room we waited a bit longer for his lunch to arrive and he started eating and ate pretty well.
We took a short break and went on a 2nd walk - longer than the first by double. By the end he appeared to be pretty fatigued so we came back to the room and sat in a chair while he relaxed. We did a puzzle, ate some net-thins and then headed back to bed to rest his legs. They had become very red where his grafts are from sitting upright. They looked really painful!
This evening we will take another walk, eat a light dinner and get ready to do it all over again tomorrow.
Tuesday, March 21, 2017
Day 56 - Spring Training
Here's Daniel all decked out in his Broncos gear ready to take a stroll with his OT friends. Yea that's an old Plummer jersey. He's lookin' pretty sporty yes? We got him in the over-sized jersey to trick him into stretching his arms up over his head. (Sneaky). During the walk he had his arm up and around Dawn's shoulder to add a stretch. We're using all kinds of tactics now to get those stretches in.
After this long early morning walk (twice around the 3rd floor or about 930 steps) we returned to his room to sit on his big ball and do some stretching. Just sitting on the big ball is great for his core and balance. His arms don't want to move much so we're all thinking up tricky ways to distract him while moving his arms about. We use a small stress ball to hand to him although we make him reach for it; we gave him gummy bears, but make him turn his head far to the left and right to grab it; some stretching from behind by the OTs; anything to get him moving, stretching and doing more routine tasks. He soon catches on, but we are able to sneak some stretching in before he digs in and stiffens.
Later today we'll have Daniel up for more activities. We've got to build up those muscles. Anything is better than sitting in bed and it will build up his appetite too.
==+
Daniel had some white chicken chili for lunch - same as us - from the meal train. We also ordered him lunch, but he hasn't shown interest in it - yet. After lunch it was on to puzzles to get those arms moving. He solved several puzzles then asked to be done. We don't let him off that easily though.
Before heading back to bed for a rest we went on another walk around the 3rd floor. Just a few days ago that would have been beyond Daniel's grasp. Now he's finished his third loop around so we are making a lot of progress - even if he's got so much farther to go before he's ready to go home.
Later this afternoon Daniel will go to wound care and we'll probably grab a beer at the campus pub... or maybe we'll take a walk around campus or BOTH. We'll see. After wound care we'll try to stuff more food in him. That's getting more challenging to try to get him to meet his daily calorie intake from eating alone. He's just not eating enough on his own and that's a problem. He's not really doing as well as we'd like with feeding himself. It's fallen on us to feed him and try to coach him on using his hands; it's just that he's resistant to using his arms much to do the eating on his own. Until then we will keep him on his feeding tube overnight as we have all along.
After this long early morning walk (twice around the 3rd floor or about 930 steps) we returned to his room to sit on his big ball and do some stretching. Just sitting on the big ball is great for his core and balance. His arms don't want to move much so we're all thinking up tricky ways to distract him while moving his arms about. We use a small stress ball to hand to him although we make him reach for it; we gave him gummy bears, but make him turn his head far to the left and right to grab it; some stretching from behind by the OTs; anything to get him moving, stretching and doing more routine tasks. He soon catches on, but we are able to sneak some stretching in before he digs in and stiffens.
Later today we'll have Daniel up for more activities. We've got to build up those muscles. Anything is better than sitting in bed and it will build up his appetite too.
==+
Daniel had some white chicken chili for lunch - same as us - from the meal train. We also ordered him lunch, but he hasn't shown interest in it - yet. After lunch it was on to puzzles to get those arms moving. He solved several puzzles then asked to be done. We don't let him off that easily though.
Before heading back to bed for a rest we went on another walk around the 3rd floor. Just a few days ago that would have been beyond Daniel's grasp. Now he's finished his third loop around so we are making a lot of progress - even if he's got so much farther to go before he's ready to go home.
Later this afternoon Daniel will go to wound care and we'll probably grab a beer at the campus pub... or maybe we'll take a walk around campus or BOTH. We'll see. After wound care we'll try to stuff more food in him. That's getting more challenging to try to get him to meet his daily calorie intake from eating alone. He's just not eating enough on his own and that's a problem. He's not really doing as well as we'd like with feeding himself. It's fallen on us to feed him and try to coach him on using his hands; it's just that he's resistant to using his arms much to do the eating on his own. Until then we will keep him on his feeding tube overnight as we have all along.
Monday, March 20, 2017
Day 55 - Weight Weight, Don't Tell Me
Daniel continues to heal. No changes there. He's walking better than ever. In fact after several walks previously today we just returned from a walk all the way around the 3rd floor which is a REALLY big walk. He hardly needs support form us. I am along side, but he didn't need a 2nd person for support as his feet seem more solid and his balance is right on target.
His weight has always been a concern. We can't seem to put any weight on him no matter how much we feed him food and supplement with tube feeds. There is a limit to how much one can take in and it's not good to go over that amount. We're straddling that line while watching his triglyceride levels to make sure he stays healthy in his food intake.
What we can do more of is keep working him and that's why we've gone on so many walks today. We need to keep strengthening his body in an effort to build up his muscles and prevent atrophy from just lying in bed. Today's walk shows how much he was able to do and I think we could have kept going. It's something we will need to keep doing more and more of. Soon we'll have to start leaving the floor for longer walks.
His weight has always been a concern. We can't seem to put any weight on him no matter how much we feed him food and supplement with tube feeds. There is a limit to how much one can take in and it's not good to go over that amount. We're straddling that line while watching his triglyceride levels to make sure he stays healthy in his food intake.
What we can do more of is keep working him and that's why we've gone on so many walks today. We need to keep strengthening his body in an effort to build up his muscles and prevent atrophy from just lying in bed. Today's walk shows how much he was able to do and I think we could have kept going. It's something we will need to keep doing more and more of. Soon we'll have to start leaving the floor for longer walks.
Sunday, March 19, 2017
Day 54 - Constant Progress
We're always trying new activities to stretch Daniel in his recuperation. We've been outside before, but it was only for a minute or so because he seemed to be overstimulated by the outside light. Today we were packin' some shades. After a long walk around the unit I lined up a wheel chair with blankets and snugly pillows to make Daniel as comfortable as possible. When he returned from his walk we slipped him in a chair, donned his cowboy hat and out we went free-wheeling around the hospital.
We walked Jamie outside to the atrium garden, posed for a few pics and went our separate ways. We wheeled around outside for much longer this time. I think the dark glasses helped with the sunshine. After our outside time we tooled about on the 2nd floor until Daniel seemed like he'd had enough so we returned to his room.
After lunch his occupational therapist stopped by to NOT inflict pain this time, but rather to sooth and massage his skin. She showed us now hard/deep we could press and massage. Daniel seemed to enjoy his time. She was also concerned with his right elbow and how it needs to be straighter while he's in bed. He's tending to bend it in and that will cause contractures and stiffness over time.
She built a device out of thermoplast. She heated it in a hot casserole dish filled with water. The heat makes the plastic flexible and form fitting. Then she wrapped his arm in an ace bandage to protect it from the heat and then held the heated thermopast sheet around his arm until it cooled and hardened. Attaching velcro and elastic to the hardened splint holds it in place and encloses his arm with the right amount of bend in his elbow. Pretty cool!
Daniel will have wound care this evening. Until then we'll rest up and break-in the new elbow splint. We hope to give him a light dinner just before wound care, then he'll be nicely sedated and ready to get back in bed and sleep away the night.
We walked Jamie outside to the atrium garden, posed for a few pics and went our separate ways. We wheeled around outside for much longer this time. I think the dark glasses helped with the sunshine. After our outside time we tooled about on the 2nd floor until Daniel seemed like he'd had enough so we returned to his room.
After lunch his occupational therapist stopped by to NOT inflict pain this time, but rather to sooth and massage his skin. She showed us now hard/deep we could press and massage. Daniel seemed to enjoy his time. She was also concerned with his right elbow and how it needs to be straighter while he's in bed. He's tending to bend it in and that will cause contractures and stiffness over time.
She built a device out of thermoplast. She heated it in a hot casserole dish filled with water. The heat makes the plastic flexible and form fitting. Then she wrapped his arm in an ace bandage to protect it from the heat and then held the heated thermopast sheet around his arm until it cooled and hardened. Attaching velcro and elastic to the hardened splint holds it in place and encloses his arm with the right amount of bend in his elbow. Pretty cool!
Daniel will have wound care this evening. Until then we'll rest up and break-in the new elbow splint. We hope to give him a light dinner just before wound care, then he'll be nicely sedated and ready to get back in bed and sleep away the night.
Saturday, March 18, 2017
Day 53 - Dressing take down
Daniel's status was officially switched from intensive care to "stepped down". That means he's no longer being monitored as closely. No more continuous monitors and frequent inspections by nurses. That is great news as it suggests he's healed to the point where he's no longer a major worry to the burn team. That doesn't mean he's ready to leave just yet.
This morning the big reveal occurred during wound care in the tub room. The last of his grafts was surgically placed 5 days ago on Monday. The team keeps those dressings in place for 5 days or so to let the graft "take". All of Daniel's other grafts had taken quite well and there were no infections or big concerns with those grafts. However, his back graft had some issues.
During wound care in the tub room the burn techs took down his dressing and found an area that looked like it wouldn't "take" and it was not a good looking color. They took pictures and have begun discussions with his surgeons. At this point we don't have much more information, but we believe that he will need another graft surgery for that area(s) if it doesn't clear up and heal on its own. That's all I can say about this situation right now. We will know more about the size of the area(s) and timing for follow up. Look for more detail soon.
One good thing is that Daniel did not require extra medications for the actual wound care so he was fairly awake for the process. He's always done well with how he deals with pain through all of this. When the occupational therapist entered the tub room things changed. His heart rate sped way up as he knew what was coming next. She had come to stretch his arms and joints. It was reported that his resting heart rate went up to 161 beats per minute upon her arrival! The therapist - the giver of pain!! To prepare him for the ordeal they did give Dan some additional sedative meds and pain relief to help him relax so that the stretching would go well. He is now back in bed sleeping that off.
==+
This morning the big reveal occurred during wound care in the tub room. The last of his grafts was surgically placed 5 days ago on Monday. The team keeps those dressings in place for 5 days or so to let the graft "take". All of Daniel's other grafts had taken quite well and there were no infections or big concerns with those grafts. However, his back graft had some issues.
During wound care in the tub room the burn techs took down his dressing and found an area that looked like it wouldn't "take" and it was not a good looking color. They took pictures and have begun discussions with his surgeons. At this point we don't have much more information, but we believe that he will need another graft surgery for that area(s) if it doesn't clear up and heal on its own. That's all I can say about this situation right now. We will know more about the size of the area(s) and timing for follow up. Look for more detail soon.
One good thing is that Daniel did not require extra medications for the actual wound care so he was fairly awake for the process. He's always done well with how he deals with pain through all of this. When the occupational therapist entered the tub room things changed. His heart rate sped way up as he knew what was coming next. She had come to stretch his arms and joints. It was reported that his resting heart rate went up to 161 beats per minute upon her arrival! The therapist - the giver of pain!! To prepare him for the ordeal they did give Dan some additional sedative meds and pain relief to help him relax so that the stretching would go well. He is now back in bed sleeping that off.
==+
Friday, March 17, 2017
Day 52 - or day 104 - 2 x 13 x 4 / 0.5 / 2 + (7 * 4) + 24
Daniel aced his wound care this afternoon. His speech therapist doubled down on his time wearing his MTA - that's the device that stretches his mouth and lips. The new setting went from 6 to 7 spaces. Thrice times today he got up to walk because he's the king of walking. Four the better of me I'm running out of card designations here, but hoped to get through the entire deck since this is day 52. One could say I eight my words. This is getting a little in-ten-se. I guess I'm the joker...
Anyway today was just another day on the road to recovery. Not much to mention except the following. Team Daniel is always keeping an eye for new infections. Nearly every day Daniel will get a fever at some point in the day. Sometimes it gets high, but never seems to stick around. At times he's had various infections pop up and it's quickly addressed with antibiotics that target the infection. Last night his fever spiked beyond the threshold they've set ( > 102 F) although they do everything in metric here so his fever got up to 39.0 C. They ordered an x-ray and it looked pretty good when we viewed it during morning rounds with Dr. Wi. There's still some fluid build-up in his left lung, but at one time earlier on it was FAR worse. No one seems worried at this time, but they will get cultures from his wounds and see what grows. That's all normal procedure, no cause for alarm.
This afternoon his residential service manager from Spectrum will be dropping by for a visit. The timing is good, because eventually (maybe even in under two months time) Daniel could be home. It takes time to find caregivers that are a good fit for Daniel. We're not sure what that will look like, but it's good to start a conversation so we don't surprise anyone with our upcoming needs.
The other parts of the day passed like our other days lately. Stretching, moving, get him up and out of bed when possible, try to take him further every day as long as he's up for it. That's the new normal.
Anyway today was just another day on the road to recovery. Not much to mention except the following. Team Daniel is always keeping an eye for new infections. Nearly every day Daniel will get a fever at some point in the day. Sometimes it gets high, but never seems to stick around. At times he's had various infections pop up and it's quickly addressed with antibiotics that target the infection. Last night his fever spiked beyond the threshold they've set ( > 102 F) although they do everything in metric here so his fever got up to 39.0 C. They ordered an x-ray and it looked pretty good when we viewed it during morning rounds with Dr. Wi. There's still some fluid build-up in his left lung, but at one time earlier on it was FAR worse. No one seems worried at this time, but they will get cultures from his wounds and see what grows. That's all normal procedure, no cause for alarm.
This afternoon his residential service manager from Spectrum will be dropping by for a visit. The timing is good, because eventually (maybe even in under two months time) Daniel could be home. It takes time to find caregivers that are a good fit for Daniel. We're not sure what that will look like, but it's good to start a conversation so we don't surprise anyone with our upcoming needs.
The other parts of the day passed like our other days lately. Stretching, moving, get him up and out of bed when possible, try to take him further every day as long as he's up for it. That's the new normal.
Thursday, March 16, 2017
Day 51 - Area 51
We're moving into alien territory with recovery, but Daniel always seems to be able to do what we ask even when it's something new and unfamiliar. He's a really amazing guy! 💝 For today's awesomeness Daniel ate all of his breakfast using silverware in his hands (with some assistance). He is slowly overcoming the tightness in his joints and with each bite this will become easier and invoke less pain. I think some days are easier than other days or it may be that the timing of an activity occurs when his pain meds are "just right".
While on a walk today Daniel stopped and looked at a therapy dog who stopped by the ICU burn clinic. We see these dogs roam through every so often.
They are highly motivating!
While on a walk today Daniel stopped and looked at a therapy dog who stopped by the ICU burn clinic. We see these dogs roam through every so often.
The dogs can go most anywhere without cleaning up, sterilizing or wearing a gown. I'm not sure what a therapy dog would look like wearing a gown, gloves and maybe safety glasses. Maybe like this, *grin*?
Daniel's speech therapists stopped by while he was eating lunch in a chair. They observed his eating and swallowing and cleared him to eat anything! That's one more big step for Daniel on the long road to recovery. He's enjoying GF pretzels now as a reward. These are motivating enough that he will eat them without assistance.
 |
| Get in me' belly, pretzels! |
When Dan is sitting in a chair it requires more work just to remain at rest. His heart rate goes up and he's having to hold his body up straighter. So we've been doing the actual feeding so he can focus on eating. He seems more willing to feed himself when he's in his bed for now. Eventually we'll fade this, but for now he's doing fine and eating most of his food - at least when Dawn feeds him. Maybe not so good for me. This task requires patience and I'm not as patient as some people. 👩 Who knew, right?
Wednesday, March 15, 2017
Day 50 - Moving about
It's a beautiful day at the hospital. The sun is out and it's warming up, but the outside is a bit harsh for Daniel. We've realized he doesn't like the bright sun right now - I think it hurts his eyes and we have to be careful with his new skin so today we will remain indoors.
Daniel ate his breakfast except for eggs (he doesn't like them so that's no surprise) . His OT worked with him and took turns with using a fork to take bites of his food. She also stretched him and got his arms moving which caused him a fair amount of pain. Once he finished his breakfast he rested a little for the next activity.
We had him up and moving with the help of his nurse Aa. Daniel walked the furthest he's gone thus far. Then we had him sit in his chair angled in such a way so that he had to turn his head and neck to watch a movie. His lunch arrived, but he didn't seem to want to eat it. Daniel sat in his chair for over 90 minutes at which point other therapists arrived (A. and E.). They got him up again and we all walked to the gym.
Once in the gym Daniel was complaining a bit more than usual. I'm sure he was in pain, but I felt that I was hindering his output and being a distraction. I think he was hoping I would stop them and allow him to get out of doing the activity. I stepped out of sight in the hallway and left him to the sadists, um I mean therapists.
I missed out on all of what they were doing, but it seemed like he was able to do most of what they asked. They had him practice sitting and standing up. He sat on a big therapy ball (something he likes to do at home). Other things I could not determine what they were doing.
Earlier in the day Dr. Wi. stepped in to say he thought that Daniel might be ready to leave the Burn ICU unit in under two weeks. The proposed plan seems to be to move him to Children's hospital for his rehabilitation. All of this is in flux until we all collectively decide what's best for him. But what IS exciting about this statement is that Daniel's burns are healing nicely and all that remains (this is a BIG piece though) is rehabilitation.
Our goal each day from here on in is to do something each day that he hasn't done before.
Today's goal was to walk further than before and Daniel did that pretty easily. He looked like he was in real pain, but he soldiered on to his room keeping his posture up, his gate true and his breath under control.
Right now he's earned a nap and is snoozing away in his bed before they start wound care. Heart rate still high in the 130s, but otherwise he's doing great!
Daniel ate his breakfast except for eggs (he doesn't like them so that's no surprise) . His OT worked with him and took turns with using a fork to take bites of his food. She also stretched him and got his arms moving which caused him a fair amount of pain. Once he finished his breakfast he rested a little for the next activity.
We had him up and moving with the help of his nurse Aa. Daniel walked the furthest he's gone thus far. Then we had him sit in his chair angled in such a way so that he had to turn his head and neck to watch a movie. His lunch arrived, but he didn't seem to want to eat it. Daniel sat in his chair for over 90 minutes at which point other therapists arrived (A. and E.). They got him up again and we all walked to the gym.
Once in the gym Daniel was complaining a bit more than usual. I'm sure he was in pain, but I felt that I was hindering his output and being a distraction. I think he was hoping I would stop them and allow him to get out of doing the activity. I stepped out of sight in the hallway and left him to the sadists, um I mean therapists.
I missed out on all of what they were doing, but it seemed like he was able to do most of what they asked. They had him practice sitting and standing up. He sat on a big therapy ball (something he likes to do at home). Other things I could not determine what they were doing.
Earlier in the day Dr. Wi. stepped in to say he thought that Daniel might be ready to leave the Burn ICU unit in under two weeks. The proposed plan seems to be to move him to Children's hospital for his rehabilitation. All of this is in flux until we all collectively decide what's best for him. But what IS exciting about this statement is that Daniel's burns are healing nicely and all that remains (this is a BIG piece though) is rehabilitation.
Our goal each day from here on in is to do something each day that he hasn't done before.
- Sit in chair longer than before,
- eat a full meal without our help,
- take longer and longer walks,
- do more physical therapy.
- Stretch and extend the arms further... You get the idea.
Today's goal was to walk further than before and Daniel did that pretty easily. He looked like he was in real pain, but he soldiered on to his room keeping his posture up, his gate true and his breath under control.
Right now he's earned a nap and is snoozing away in his bed before they start wound care. Heart rate still high in the 130s, but otherwise he's doing great!
Tuesday, March 14, 2017
Day 49 - Back in the Saddle
Daniel began the day (once we were here) with some sausage, fresh fruit, juice, and GF toast. Partway through breakfast we listened to morning rounds. Daniel's blood pressure dropped over the night so he received a bolus of albumin and fluids to boost it. It's common in burn patients to have low albumin. His heart rate remains high (range of 120-139), but that's been the norm for him for the past several weeks. He's been cleared for all activity so once rounds moved on to the next patient we got Daniel up for a walk. He moved pretty good through the halls so we brought him back to his chair for an extended sit.
As his back has fresh skin stapled to it, there's more pain there and it's good to get him sitting up to take the pressure off the new skin. Daniel seemed content to sit in his chair for over 90 minutes. While he was in his chair his OT tried to coax him into feeding himself and finish off his breakfast. He wasn't interested in using his arms. She also tried to get him to turn his head. We tried to get him to lock onto our faces off to the side so he would turn in our direction to twist and move his neck. He held his neck pretty stiff and straight. We held out food on a fork for him to look at and eat - that got a better result.
Daniel continued sitting until we got him back into bed after a bathroom break. He impressed his charge nurse with the progress he's made. She gave Dan a nice compliment and wished other patients could do/try what he's able to accomplish by sheer desire to comply. He rested while we ordered some lunch. When it arrived we began to eat some, but he seemed to struggle with swallowing this time. He was making big swallow noises (gulp) and coughing some. I'm not quite sure what was going on, but we'll keep trying.
==+
Recovery Therapy: I am beginning to understand how this next phase of his therapy might begin to detour from how other patients recover. With typical patients a therapist can give instructions and ask the patient to do simple things like "here's your assignment: remember to turn your neck from side to side throughout the day to keep stretching that skin". When the therapist leaves it's up to the patient to remember and follow through. Said patient may choose to do those exercises and that will shorten their stay here and make it easier for them to return to their normal life. If they are smart they will do what's been "prescribed". That much is clear.
For Daniel that burden of following through will be on us. He doesn't understand instructions that are "assigned" to be followed once the therapist has left. He's great at complying to requests when the therapist is in the room. He tends to outdo what other patients can do - all one has to do is ask because he aims to please. We've been told this time and again by many of his nurses not to think it isn't so. So yes, he impresses his nurses, doctors and therapists. Since he was two years old he's been working with therapists one-on-one. This is one of his strengths. When they ask him to do something he just does it. If it hurts a lot that doesn't seem to hold him back. His desire to comply in therapy is something he's done his whole life. He's gotten very good at it!
When the therapists are not around it's more and more on Dawn and I to get him moving. We know how to get him going, but like any parent/child relationship Daniel knows what he can get away with. It will take some self-control on our part to help us all overcome some of the laziness we've allowed to creep into our lives. We'll need to act more like heartless (👷 kidding) professional therapists and less like soft nurturing parents.
We're good at getting him to do what we require too, but when we see pain expressed in his sad soulful eyes it gets a little harder to be firm. Burns hurt in all kinds of ways - we can't even begin to understand what he's going through!
==+
Phase one of Daniel's total recovery is now complete. Daniel's skin is all patched! That involved 8 surgeries - 4 to remove the burned skin and 4 to graft. (there was an extra 9th emergent surgery to grab a guide wire for a central line that had sucked up into his femoral vein closing in on his heart - that was several weeks ago). I could break down phase one, as I'm calling it, and I guess I have done so in all the prior daily posts up to now.
The point is: huge accomplishment - yea Team Daniel, go us! Let's take a moment to rejoice!...
💕💓✌👍
Okay rejoicing time is now over.
Now phase one is behind us and it's now time to move on.
Phase two (Recovery therapy) begins in earnest now! I have great confidence that it will go as well as phase one.
As his back has fresh skin stapled to it, there's more pain there and it's good to get him sitting up to take the pressure off the new skin. Daniel seemed content to sit in his chair for over 90 minutes. While he was in his chair his OT tried to coax him into feeding himself and finish off his breakfast. He wasn't interested in using his arms. She also tried to get him to turn his head. We tried to get him to lock onto our faces off to the side so he would turn in our direction to twist and move his neck. He held his neck pretty stiff and straight. We held out food on a fork for him to look at and eat - that got a better result.
Daniel continued sitting until we got him back into bed after a bathroom break. He impressed his charge nurse with the progress he's made. She gave Dan a nice compliment and wished other patients could do/try what he's able to accomplish by sheer desire to comply. He rested while we ordered some lunch. When it arrived we began to eat some, but he seemed to struggle with swallowing this time. He was making big swallow noises (gulp) and coughing some. I'm not quite sure what was going on, but we'll keep trying.
==+
Recovery Therapy: I am beginning to understand how this next phase of his therapy might begin to detour from how other patients recover. With typical patients a therapist can give instructions and ask the patient to do simple things like "here's your assignment: remember to turn your neck from side to side throughout the day to keep stretching that skin". When the therapist leaves it's up to the patient to remember and follow through. Said patient may choose to do those exercises and that will shorten their stay here and make it easier for them to return to their normal life. If they are smart they will do what's been "prescribed". That much is clear.
For Daniel that burden of following through will be on us. He doesn't understand instructions that are "assigned" to be followed once the therapist has left. He's great at complying to requests when the therapist is in the room. He tends to outdo what other patients can do - all one has to do is ask because he aims to please. We've been told this time and again by many of his nurses not to think it isn't so. So yes, he impresses his nurses, doctors and therapists. Since he was two years old he's been working with therapists one-on-one. This is one of his strengths. When they ask him to do something he just does it. If it hurts a lot that doesn't seem to hold him back. His desire to comply in therapy is something he's done his whole life. He's gotten very good at it!
When the therapists are not around it's more and more on Dawn and I to get him moving. We know how to get him going, but like any parent/child relationship Daniel knows what he can get away with. It will take some self-control on our part to help us all overcome some of the laziness we've allowed to creep into our lives. We'll need to act more like heartless (👷 kidding) professional therapists and less like soft nurturing parents.
We're good at getting him to do what we require too, but when we see pain expressed in his sad soulful eyes it gets a little harder to be firm. Burns hurt in all kinds of ways - we can't even begin to understand what he's going through!
==+
Phase one of Daniel's total recovery is now complete. Daniel's skin is all patched! That involved 8 surgeries - 4 to remove the burned skin and 4 to graft. (there was an extra 9th emergent surgery to grab a guide wire for a central line that had sucked up into his femoral vein closing in on his heart - that was several weeks ago). I could break down phase one, as I'm calling it, and I guess I have done so in all the prior daily posts up to now.
The point is: huge accomplishment - yea Team Daniel, go us! Let's take a moment to rejoice!...
💕💓✌👍
Okay rejoicing time is now over.
Now phase one is behind us and it's now time to move on.
Phase two (Recovery therapy) begins in earnest now! I have great confidence that it will go as well as phase one.
Monday, March 13, 2017
Day 48 - Waiting
Today is Daniel's last planned surgery. The purpose is to graft his back. In the past 47 days Daniel's back has healed some and other parts were never burned for some reason. When he caught fire it was the back of his shirt tail that was started from the gas stove in our kitchen. The fire spread across the three shirts he was wearing (a normal cold day in Denver) and were mostly burned off by the time Dawn doused the fire with water.
To recap, the first four surgeries removed the damaged burned skin and covered the areas with Allograft. Each of those surgeries lasted anywhere from 3-6 hours. They were necessary before grafting could occur. Once he had some time to recover and overcome the internal horribleness that a burn imposes on your systems the surgeons began to graft skin harvested from his legs. His first graft covered his burned arms from his shoulders down to parts of the back of his hands. The second surgery was about three weeks later. It was a sheet graft with donor skin from his scalp to replace skin on his lower face, throat and neck down to his collarbone. The third grafted his entire chest. And now the fourth will cover his back and do any touch-up around the edges if needed. Some surgeries had two surgeons working on him, today's is with Dr. Wa. working alone.
As I type this we are on hour 3 1/2 and hoping Daniel will be finished up in under an hour. Since the remainder of today will be time spent recovering from his surgery I'll stop here.
==+
UPDATE: Dan is out of surgery and back in his room recovering. Everything went well and he's all patched. If all goes to plan we could be out of ICU Burn unit in a few weeks. Not sure what comes next, but something like the following:
Below are some pictures from yesterday when we wheeled Daniel out of the burn unit as we went on a grand tour of the hospital. Dawn had to stay gowned up and only operate the wheel chair, while I was the official pusher of buttons and doorman. Sunday was a slower day at the hospital so it was pretty nice to wheel him around where there's usually a lot of foot traffic. Daniel seemed to be tired (he already had walked with Jamie and sat in his chair for an hour before lunch), and now we wheeled him around for another hour until it was his turn for wound care in the tub room.
When he took him outside he seemed to be noticeably unhappy so we snapped a quick picture and continued on inside. Daniel does not like to stop anywhere so continuous movement worked best. Perhaps he thought we were taking him home when we ventured outside and he believes rightly that he's not healed up enough for that! This was the first time he has seen sunlight since the burn. (Wearing a hat and it was overcast, but we'll need lots of sunscreen and be protective of his tender skin moving forward).
In these pictures he's not smiling, but he mustered to at least look back (you could call it an extreme GLARE and you wouldn't be wrong) at me with his beautiful blue-green eyes. Enough with the lame excuses...
To recap, the first four surgeries removed the damaged burned skin and covered the areas with Allograft. Each of those surgeries lasted anywhere from 3-6 hours. They were necessary before grafting could occur. Once he had some time to recover and overcome the internal horribleness that a burn imposes on your systems the surgeons began to graft skin harvested from his legs. His first graft covered his burned arms from his shoulders down to parts of the back of his hands. The second surgery was about three weeks later. It was a sheet graft with donor skin from his scalp to replace skin on his lower face, throat and neck down to his collarbone. The third grafted his entire chest. And now the fourth will cover his back and do any touch-up around the edges if needed. Some surgeries had two surgeons working on him, today's is with Dr. Wa. working alone.
As I type this we are on hour 3 1/2 and hoping Daniel will be finished up in under an hour. Since the remainder of today will be time spent recovering from his surgery I'll stop here.
==+
UPDATE: Dan is out of surgery and back in his room recovering. Everything went well and he's all patched. If all goes to plan we could be out of ICU Burn unit in a few weeks. Not sure what comes next, but something like the following:
- acute in-patient rehab either here on the burn floor stepped to a non-ICU status OR
- possibly at Children's hospital burn unit,
- then home with frequent visits as out-patient fading to,
- a full recovery in about a year maybe.
Below are some pictures from yesterday when we wheeled Daniel out of the burn unit as we went on a grand tour of the hospital. Dawn had to stay gowned up and only operate the wheel chair, while I was the official pusher of buttons and doorman. Sunday was a slower day at the hospital so it was pretty nice to wheel him around where there's usually a lot of foot traffic. Daniel seemed to be tired (he already had walked with Jamie and sat in his chair for an hour before lunch), and now we wheeled him around for another hour until it was his turn for wound care in the tub room.
When he took him outside he seemed to be noticeably unhappy so we snapped a quick picture and continued on inside. Daniel does not like to stop anywhere so continuous movement worked best. Perhaps he thought we were taking him home when we ventured outside and he believes rightly that he's not healed up enough for that! This was the first time he has seen sunlight since the burn. (Wearing a hat and it was overcast, but we'll need lots of sunscreen and be protective of his tender skin moving forward).
In these pictures he's not smiling, but he mustered to at least look back (you could call it an extreme GLARE and you wouldn't be wrong) at me with his beautiful blue-green eyes. Enough with the lame excuses...
Cafeteria
Outside
Bridge on 2nd floor betwixt pavilions
Picture gallery
Sunday, March 12, 2017
Day 47 - One More to Go
Daniel's surgery (9th and final we hope) has moved to tomorrow - Monday. I realize these posts have begun to take a less exciting tone as it's become more and more routine with his recovery progressing nicely. In some way that suggests he's doing everything that's expected of him - no serious steps back, mostly forward. Right now he's off all IVs, with only his feeding tube during the night to top him off. During the day he's eating "real" food. Chewing - what a concept! Daniel is also exceptionally thirsty during the day.
Final surgery while in ICU: We're excited for tomorrow to come. If the schedule holds he will be the 2nd in line for surgery with Dr. Wa. which means he may begin around noon and hopefully be out by 4pm. This surgery will graft his final area (his back and neck) that's been covered up to now with Allograft. Some of his back was unburned or has healed and will be used as the donor for the other burned areas of his back. If they need other skin they'll grab it from his calf which has already been harvested once for his arms or upper chest.
All the previously grafted skin (three prior surgeries) is healing nicely and have had no significant infections. If this trend continues he'll be out of ICU and into a rehab/recovery that much sooner. Still though it's likely that he will remain in his current bed in ICU for a bit longer (maybe a week or so) to ensure this final graft and his donor skin all heal to a point where intensive care is behind us.
Today with Jamie's help we sat Daniel up into his chair where he hung out for over an hour, then we walked him around the burn floor. Due to some obstructions in the back straight-a-way we took an even longer route out into the carpeted hallway (offroad dude) outside the burn ICU down and back in through the main entrance to ICU. Dan's right foot was tip-toeing at first, but towards the end he flattened out his stride and hauled it back to his room. Here's a pic of Dawn, Dan and Jamie in the final stretch.
After a cool down period Dawn helped Daniel with his breakfast (though by now it was lunchtime). He had already eaten yogurt in the morning and now ate sausage links and toast with jelly along with some apple juice.
Wound care is this afternoon and maybe some Facetime with sister Amanda who lives across the state in GJ.
I've been wondering lately what Daniel thinks about all "this" now that he seems more aware of his surroundings. If I can find his voice I'll try to write something soon, but for now like my son I'll remain silent.
Final surgery while in ICU: We're excited for tomorrow to come. If the schedule holds he will be the 2nd in line for surgery with Dr. Wa. which means he may begin around noon and hopefully be out by 4pm. This surgery will graft his final area (his back and neck) that's been covered up to now with Allograft. Some of his back was unburned or has healed and will be used as the donor for the other burned areas of his back. If they need other skin they'll grab it from his calf which has already been harvested once for his arms or upper chest.
All the previously grafted skin (three prior surgeries) is healing nicely and have had no significant infections. If this trend continues he'll be out of ICU and into a rehab/recovery that much sooner. Still though it's likely that he will remain in his current bed in ICU for a bit longer (maybe a week or so) to ensure this final graft and his donor skin all heal to a point where intensive care is behind us.
Today with Jamie's help we sat Daniel up into his chair where he hung out for over an hour, then we walked him around the burn floor. Due to some obstructions in the back straight-a-way we took an even longer route out into the carpeted hallway (offroad dude) outside the burn ICU down and back in through the main entrance to ICU. Dan's right foot was tip-toeing at first, but towards the end he flattened out his stride and hauled it back to his room. Here's a pic of Dawn, Dan and Jamie in the final stretch.
After a cool down period Dawn helped Daniel with his breakfast (though by now it was lunchtime). He had already eaten yogurt in the morning and now ate sausage links and toast with jelly along with some apple juice.
Wound care is this afternoon and maybe some Facetime with sister Amanda who lives across the state in GJ.
I've been wondering lately what Daniel thinks about all "this" now that he seems more aware of his surroundings. If I can find his voice I'll try to write something soon, but for now like my son I'll remain silent.
Saturday, March 11, 2017
Day 46 - Visits
Daniel attended wound care in the tub room mid-morning. We were waiting for him in his room when he glided back to his room and was transferred to his bed. Shortly after that his grandparents arrived for a visit. He ate a significant amount of sausage and juice for breakfast. Dan then took a nice long walk around the unit and returned to his room so everyone got to see him in action.
While the grandparaents were with us in Dan's room, Dawn and I broke for our lunch and joined the SOAR burn victim group. The meeting ended and we returned to his room. One of the burn victims W. who is now a peer counselor peeped in to Dan's room to say "hi" while he was eating lunch with mom and grandmom's help.
==+
Later in the day Daniel stretched his arms up with Dawn's help. She was able to get a good stretch on each arm and that will help him with flexibility as the grafts heal. This would normally be a really painful activity, but he seemed to tolerate it well and allowed higher stretches as he would eventually ease up and relax. During the afternoon it appeared that his temperature rose some, but it seemed to break as he began to perspire all over his face. He seems pretty relaxed now and the fever is gone.
For a midday snack Daniel devoured a lemon italian ice and strawberry jello.
We're waiting for dinner to arrive and while we wait, Daniel is wearing the MPA (microstomia prevention apparatus) he was fitted with yesterday. I'm hoping he can wear it for 15 minutes then we can take it back out.
Dinner tonight for Daniel will be salmon, carrots and rice followed by a popsicle.
While the grandparaents were with us in Dan's room, Dawn and I broke for our lunch and joined the SOAR burn victim group. The meeting ended and we returned to his room. One of the burn victims W. who is now a peer counselor peeped in to Dan's room to say "hi" while he was eating lunch with mom and grandmom's help.
==+
Later in the day Daniel stretched his arms up with Dawn's help. She was able to get a good stretch on each arm and that will help him with flexibility as the grafts heal. This would normally be a really painful activity, but he seemed to tolerate it well and allowed higher stretches as he would eventually ease up and relax. During the afternoon it appeared that his temperature rose some, but it seemed to break as he began to perspire all over his face. He seems pretty relaxed now and the fever is gone.
For a midday snack Daniel devoured a lemon italian ice and strawberry jello.
We're waiting for dinner to arrive and while we wait, Daniel is wearing the MPA (microstomia prevention apparatus) he was fitted with yesterday. I'm hoping he can wear it for 15 minutes then we can take it back out.
Dinner tonight for Daniel will be salmon, carrots and rice followed by a popsicle.
Friday, March 10, 2017
Day 45 - 45 days, just wow
45 days in ICU: That's like a month and a half. We're about to change seasons. Time passes quickly as the days have blurred from one to the next. When did all that time pass? In some ways I can totally feel each one of those 45 days, in other ways it feels like both decades and a mere few hours since the accident on January 25th.
Daniel completed a lot of activity yesterday - I think we took him over a point of being comfortable into a place where he could not get real restful and it might have even effected his sleep last night. We discussed during rounds that his heart rate goes up when he's not resting (I've talked a lot about that the past two days). The team postulated that his pain meds may be a bit less than what he needs to function and be comfortable now that we've ramped up our demands for him. Rather than just limiting him to little boosts when he's working we decided to increase his baseline so that he can do all that we are asking of him. Then still boost pain meds if needed. We'll know in a few days time if that's the right solution.
Every day we eat in the lunch room cafeteria at the hospital. We've started to notice some trends that are like every other lunch room in America; whether it's at a middle school, large corporate office, or any other lunch place, it's all the same. We bring our lunch daily because our friends and coworkers have been so awesome and generous and supportive with providing meals. Thanks everyone!
Some things I've observed about our cafeteria is that:
Daniel completed a lot of activity yesterday - I think we took him over a point of being comfortable into a place where he could not get real restful and it might have even effected his sleep last night. We discussed during rounds that his heart rate goes up when he's not resting (I've talked a lot about that the past two days). The team postulated that his pain meds may be a bit less than what he needs to function and be comfortable now that we've ramped up our demands for him. Rather than just limiting him to little boosts when he's working we decided to increase his baseline so that he can do all that we are asking of him. Then still boost pain meds if needed. We'll know in a few days time if that's the right solution.
Every day we eat in the lunch room cafeteria at the hospital. We've started to notice some trends that are like every other lunch room in America; whether it's at a middle school, large corporate office, or any other lunch place, it's all the same. We bring our lunch daily because our friends and coworkers have been so awesome and generous and supportive with providing meals. Thanks everyone!
Some things I've observed about our cafeteria is that:
- A LOT of people buy and eat their lunch here in the main cafeteria. It has a rush hour that goes from 11:30 to 1:30 when most tables are occupied. Mornings are busy too for breakfast foods.
- Patients in gowns will eat here too. Sometimes they even have IV carts in tow. A topic in one of the burn survivor meetings was about the stares you'll get from people when they see your burn scars (if visible) out in public. The burn survivors explained that they had to get over that initial feeling of being stared at and had to have a quick story to explain what happened because they learned they get asked that a lot after the blank/frightened looks from random people. Luckily Daniel doesn't seem to care or be aware of what other people think AND he doesn't talk so there ya' go. No worries.
- When the weather is bad outside, the cafeteria is PACKED.
- Not many visitors bring their lunch regularly that we've seen. I believe there aren't all that many visitors that have been here as long as us and coming every day. Perhaps they eat lunch at other times than we do or go out to get away from the hospital for awhile. I might be missing them as they don't stick out as much as scrub-wearing staff.
- Lots of hospital staff DO eat in the lunch room - they are easy to spot because they are all wearing some color of scrubs: dark green, blue, lime, maroon, lab coats, doctor coats, some with hair nets, some with stethoscopes, lots of old-school pagers.
- Caste system - among the staff, it's rare to see people of different colored scrubs eating together. Is this some kind of twisted self-imposed segregation? It's not too different from the preppy kids sitting apart from the jocks, who aren't hanging out with the drama nerds, or the chess club members.
- Timing your arrival to use the precious microwave oven is key. With only two microwaves accessible in the cafeteria the kitchen makes it harder (on purpose) if you do need to heat your food. (I think the middle school where I work has at least two microwave ovens in it for many fewer people).
- The menu in the cafeteria is quite varied. You might think there would be ONLY bland and boring healthy food, but you can get pretty much anything there. French fries, soda pop, chips, ice cream, donuts - yup! Of course there are foods one considers to be more healthy too like a grilled chicken breast, salad bar, sushi, vegetable side dishes and such.
Moving on... Daniel ate some breakfast this morning, but Dawn did the feeding this time instead of encouraging Daniel do it since it was right after wound care and he seemed pretty out of it. He ate everything we gave him and drank a lot of juice and water too. Daniel has started to move his arms IN like the skin on his chest is tightening. The OTs will begin to do some scapula stretching to help with this.
After a nice break Daniel's OT came in and made some adjustments. She wants to keep Daniel's arms spread so that he doesn't hunch up and pull his arms into his chest. We will need to "Remind" Dan to keep him from pulling his arms in, which won't be easy - he's wanting to do this all the time now. I hope the pain meds help him to relax through this. He is also bending his elbow too much so they want him in splints at night to keep the elbow unbent.
Right after her visit the ST's came in and tested his swallowing and deemed him worthy of advancing to level 3 - which opens up the menu of foods he can have and he can drink any fluids without thickening. They are also concerned and want to keep his mouth/lips to be stretched due to the grafting around his chin/throat. They brought in a middle-age torture-like device (think Clockwork Orange sort of on the mouth not eyes) that spreads and keeps his lips wide and stretches the skin around his mouth. Luckily or not depending on who you are, they couldn't get the device to attach to his head without harming is burned ears so they ordered something different that is also a lip spreader, but it just pulls the corners open. It's called an MPA. You can make up your own definition for that acronym where P might stand for "pain".
Just after the ST's left it was time for the PTs to do their own form of torture on him. We got Daniel standing. He got up from the bed on his own, stood up and did a little shifting then we started walking without little support from us. We walked to a new place on the burn unit - the gym!
In the gym we sat for a few minutes to catch our breath and bring the heart rate down. Then Daniel went up a set of stairs and back down to practice stair walking. After that we set up some pedals and had Dan practice some pedaling with his feet. Then a short break and then we had him pedal with his arms. All the while he was looking really wiped, but he did it all! Then we walked back to his room and landed in his chair. We sat for a bit then began to eat lunch. He was super thirsty and drank down some water and a pepsi. He sat in his chair for a total of 30 minutes or more and finished his food. Then we finally got him back to his bed to some well-earned rest.
Big day. There's more ahead this evening, but I'm done with today's post!
Bike ride home, then a massage then maybe a drink!
Thursday, March 9, 2017
Day 44 - Lots of good therapy
Daniel walked to wound care in the tub room today early and returned by mid-morning. Once his pain medications wore off he was a bit groggy, but Dawn ordered some breakfast yogurt (silk) and slowly fed him sausage and handed the fork to Daniel to try to eat some too. Daniel struggled with eating with his right hand as before, but was able to do a lot of the feeding himself once we queued up food on his modified fork. After breakfast I flossed his teeth and got him ready for more action.
We rested then his OT K. came in and did some arm stretching which brought his heart rate up from the mid 130s into the 150s. After that we moved him to a chair to do more work with puzzles and more movement.
His heart rate stayed high and never moved below 148 or so. We were planning to have him walk again, but his heart rate jumped a bit more to above 150 when his PT A. arrived - as if he anticipated what she would have him do (walking). They consulted with the physicians and decided that when walking his heart rate would likely jump another 20 beats into the 170s and that was unwise.
So we transitioned Daniel back to bed and A. showed us how to safely stretch his arms. Once in bed his heart rate dropped into the 140s and eventually back down to the 130s where he's been hovering as a resting rate for the past few days. Once he was settled in for a bit Dawn fed him some lunch of chicken salad and cooked carrots. He seemed to like what was given him until he felt full.
Later this afternoon Daniel took his first pleasure roll in a wheelchair on the promenade deck... no? Well then it was actually a lovely view of the hospital dumpsters down the hall from the ICU Burn Unit. Then we rolled on to a view to the north view from the Lido level (nope - surgery access portal) where we could see the Rocky Mountains in the distance. Daniel doesn't like to stop for any length of time so we kept him moving and finished up our loop and returned to his room and moved him back to bed.
Today's trip is a preview of many short trips we will be doing for the next few weeks to get him out and moving about. Eventually we'd like to get him outside and in some fresh air. Dan's heart rate stayed high in the 140s, but never spiked above 150 so at least he stayed a little calmer than his earlier out-of-bed time today.
After a while Dan's surgeon Dr. Wi. stopped by to see how we were doing. We mentioned Daniel's high heart rate and the doctor said it might be a long time after his skin is healed that this and other related conditions might exist. He mentioned another patient who was a serious cyclist who had only an 8% burn on his leg. Long after his burn had healed he had a high heart rate when he would ride. He went to sports specialists to see how he could fix his issues, but these burns have a way to taking looooong to heal. Long after the actual burn has healed the internal organs still can suffer and need more time to come back to normal.
This evening will bring Jamie for a visit and we'll try to feed him dinner, do some stretching and just hang with those 80's tunes jammin' - maybe we'll have him in his bed or possibly out in his chair if his resting rate stays low.
We rested then his OT K. came in and did some arm stretching which brought his heart rate up from the mid 130s into the 150s. After that we moved him to a chair to do more work with puzzles and more movement.
So we transitioned Daniel back to bed and A. showed us how to safely stretch his arms. Once in bed his heart rate dropped into the 140s and eventually back down to the 130s where he's been hovering as a resting rate for the past few days. Once he was settled in for a bit Dawn fed him some lunch of chicken salad and cooked carrots. He seemed to like what was given him until he felt full.
Later this afternoon Daniel took his first pleasure roll in a wheelchair on the promenade deck... no? Well then it was actually a lovely view of the hospital dumpsters down the hall from the ICU Burn Unit. Then we rolled on to a view to the north view from the Lido level (nope - surgery access portal) where we could see the Rocky Mountains in the distance. Daniel doesn't like to stop for any length of time so we kept him moving and finished up our loop and returned to his room and moved him back to bed.
Today's trip is a preview of many short trips we will be doing for the next few weeks to get him out and moving about. Eventually we'd like to get him outside and in some fresh air. Dan's heart rate stayed high in the 140s, but never spiked above 150 so at least he stayed a little calmer than his earlier out-of-bed time today.
After a while Dan's surgeon Dr. Wi. stopped by to see how we were doing. We mentioned Daniel's high heart rate and the doctor said it might be a long time after his skin is healed that this and other related conditions might exist. He mentioned another patient who was a serious cyclist who had only an 8% burn on his leg. Long after his burn had healed he had a high heart rate when he would ride. He went to sports specialists to see how he could fix his issues, but these burns have a way to taking looooong to heal. Long after the actual burn has healed the internal organs still can suffer and need more time to come back to normal.
This evening will bring Jamie for a visit and we'll try to feed him dinner, do some stretching and just hang with those 80's tunes jammin' - maybe we'll have him in his bed or possibly out in his chair if his resting rate stays low.
Subscribe to:
Posts (Atom)