Day 35 - Tests

Daniel is scheduled for surgery in three days - to graft his chest this time. That will be his 8th surgery in total and the third autografting surgery. His legs have healed nicely and are ready for harvesting skin to use on his chest this time. His doctors will tag-team again like they did with his arms: Dr. Wi. and Dr. Wa. to get the job done more quickly.

Before that surgery happens there are a few tests they team want to conduct. One test is a barium swallow test which I've heard is a pretty cool test to try to see. If we can we will try to go with Daniel so we can see how this works. Doing the swallow test will help the team learn of any issues he has with swallowing food and until he can "pass" this test he won't be switched to solid food. Moving to solid food is a gradual process, but the test uses different types of food consistencies to see how he swallows.

Another test is called a Metabolic Cart. It uses a headgear or tent-like structure around his head and analyzes his breathing. As I understand it the test examines what he breathes in and out and can then determine from that many things about his metabolism. One thing they want to fine-tune is his food intake and understand what all his metabolic needs are. I'm anxious to learn more about how this test works and what can be learned from it.  We were scheduled to do this test at 11am today, but the calibration component of the cart wouldn't work so the test is off until tomorrow.

Right now we are in a holding pattern waiting to see if we can get either test done today or tomorrow.
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Tests will have to wait until another day. Luckily we have lots of them (days) ahead of us...

Daniel did some walking today. First he did a down and back then sat in his chair for about 30 minutes. I coaxed him to do an extra mini-walk on the end of this first stroll before sitting down. He was showing a lot of pain. We think it was mostly his legs and that when you first get up it sends pins and needles down as the blood rushes into his feet - which were already really puffy. One he got going his stride seemed to correct itself. He was standing more upright and looking ahead not down at his feet. That was good to see too.

Daniel returned to his room. He shuffled around to his chair; all the while eyeing his bed with angst and desire. Well actually we steered him around and away from his bed, but you get the idea. He sat in the chair for about 30 minutes until the tub room was ready and warmed up for him. In the chair he was uncomfortable at times. Pain would surge through his body. We couldn't tell what hurt or where or how to help. We asked the nurses for some warm blankets and that helped him relax some through the waiting. Dawn and Daniel's grandparents Susan and Wes chatted away to help distract him while we watched Song of the South on his room TV.

Once the tub room was all ready we helped Daniel to stand and walk to the tub room and sit on the tub table. He was great walking again; this time with shoes on. (the shoes were on to catch the Carefiber they apply to his recent grafts on his left leg - it is really "goopy" and runs down his leg and leaks out of it's cellophane casing). It is amazing though how much his heart rate will increase from a walking activity. The pain and effort to get his body working again must be very taxing!

Daniel is back again and resting. He's still showing pain at times, but I think he's settling down into a more relaxed state.
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The two tests might be done tomorrow - Wednesday. We'll see...

Day 34 - Monday Monday

Today we stood through morning rounds with the Burn Unit Director running the show. She's a great Dr. and I think she's extra fond of our Daniel. Dawn unleashed our newfound concerns since this past weekend to discuss the pain medication level that Daniel is receiving. We think it's too low for his comfort level and wanted to understand what their expectation was for him - as it is he's comfortable unless he moves in the slightest. If we try to get him to do something he seems to get pretty uncomfortable.

There's that fine balance again between being too drugged to participate in healing AND being not-drugged enough such that you stop participating because it hurts to move. We felt that Daniel was just on that edge of being not drugged enough.

Daniel like most burn patients is receiving several meds just for pain and sedation. He's fortunate to have responsible staff administering and tuning his dosages ever since he arrived. There seems to be an ever-changing blend of drugs to address pain and sedation. In Daniel's case the list includes:

• versed - sedation
• precedex - sedation
• oxycodone - pain
• fentanyl - pain
• gabapentin - pain - specifically for stinging skin pain - graft donor sites 
• tylenol - pain
• and new today ketamine - pain/sedation 

Patients respond differently to the cocktail of medication that can be used during recovery. There's different ways to administer these drugs too. When first admitted and for the first few weeks Daniel was on a continuous IV drip of fentanyl and either versed or precedex. More recently he's only been given shots of versed and fentanyl when he's in wound care or during surgery.

I think they started giving him gabapentin when they began autografting from donor sites on his legs. That kind of makes sense because the sensation and appearance of the donor site is like a massive sunburn - we all know what that feels like! Other patients have informed me that the donor sites hurt more than the burn often.

From what I can tell these meds can mess with Dan's BP and heart rate. Too much of one and his pressure may drop or go too high. Also he may not "tolerate the meds well". We've heard that phrase lots during his time here and it can mean different things to different staff. It might mean it effects his vitals or it may also mean that it's not helping with his pain and discomfort.

Yesterday during wound care - that was a hard and painful wound care day because they did his entire body in the tub room. The nurse said he "didn't tolerate the meds well". They used versed and fentanyl and gave him a LOT, but he continued to have moments where he would raise his arms or head up (like he wanted to leave perhaps) or moan. Taking that into consideration for today's wound care they tried a new approach.

Here's a nice happy picture of the sterile tub room 

where all the fun is and patients report that 

they just love it. - NOT!

Today they gave Daniel versed and ketamine for wound care (and oxycodone too I think). The nurse said that he "responded much better". By that he meant that Daniel seemed sedated enough that if there was pain he wasn't bothered by it. From what I had heard and read of ketamine over the years is that it has a reputation for being a type of party drug. I think a user "trips" on it because it blocks specific nerve receptors and can cause a disassociative connection with your body where you "travel" into a "k-hole" and basically float away from reality for awhile. [I think I have the lingo about right here]. Anyway that's what the first few google searches "traveled" me to when I clicked on them. Trippy huh?

I've been trippin' on my own thoughts about autism and the brain-gut link. I may talk more about that later. There's a few things I've explored that involve this little beasty called glutamate and it's role in nerve receptors,  the breakdown of food into energy in the Kreb's cycle (gut) and how pain meds play around with blocking glutamate in pain receptors... To be continued
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I suspect the rest of the day will be low-key and restful for Daniel as he recuperates from wound care and we watch Disney vids together in his room. Me - I went on a run outside while Daniel was in wound care and my legs are aching... I wonder where any of those pain meds are?  👊

Day 33 - Graft update

Daniel was awake when we arrived this morning. He had a fever last night and one of his wound cultures showed an infection so he's back on two antibiotics. By morning his fever was back to normal. He had a good night sleeping from what we heard.

Jamie visited this morning so we went to work with the doctor's support to get Daniel moving. We decided to get him upright in his bed because we was going to head off to wound care soon. We agreed during morning rounds that we might be able to have him walk to the tub room for wound care, but his pain meds they give to prepare for wound care (where they wash and scrub off his burn areas, remove any dead skin and redress him) kicked in and he was seriously nodding off sitting upright. This cleaning was more thorough now that they could wash around his new grafts so that also means more pain, more meds to control it and more overall exhaustion from the ordeal.

At least we got him upright and did some light stretching. Even though it's not much of a "workout", it tires him out. He was able to bend his arms much better this time and only moaned once during the effort so I would say he was much better today, but of course we know how well he likes to work with Jamie.

Daniel was moved to the tub bed and wheeled off to the tub room. We were anxious to hear how things would go because his surgeon Dr. Wi. was going to remove his bolster and take the first look at his graft on his neck. After about an hour Dr. Wi. emerged all smiles and said all the grafts "took" and his face, chin and neck looked great. There's a bit of skin at the edges by either shoulder that have to be "repaired", but otherwise it's fantastic news. So a couple more grafts and Daniel will have all his skin back!
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We have to wait for Daniel's skin on his legs to heal up, but they are getting close to being ready. Maybe by Wednesday or Thursday he will be ready for his anterior torso to be grafted. That's a lot of skin to cover, but it would only leave his back to be grafted.

We wanted to try to get Daniel sitting up again in his bed for a little while. More is better right? For various reasons Daniel made it pretty clear after only five minutes that he was VERY uncomfortable and that we needed to get him back down.

We're learning that his progress will be slow - that's the way burn recovery works. Very slight changes in position can alter things a lot. Blood will rush to his feet if he's sitting more upright causing swelling for instance. It can change his heart rate which can alter his temperature and blood pressure.

Any way... we got Daniel re-positioned back to his preferred position and his heart rate went back down to a more normal rate (for a burn patient his age at this point in his recovery that's in the 120's). He calmed down and has now fallen asleep. He seems a lot more comfortable!

Day 32 - Hurts us too

Today Daniel started early with his OT who stretched all his arms joints and eventually got his ass sitting in a chair. Daniel was expressing a lot of pain during all the movement of his arms. The OT described what other patients at this point are feeling and that the pain is mostly coming from the tightness of the skin. The new skin grafts on his arms will tighten and feel very painful - like a rug burn. But not like any rug burn you or I have experienced unless the rug was on fire and dipped in acid! Daniel's nurse gave him some extra pain meds to help work through the therapy session.

Before we started the stretching session Daniel was alert and bright-eyed. He was his cheerful self and I feel like he was happy to see us again. He was making great eye contact and tracking me around the room. I felt privileged. I tried my best to give him my friendly face and be expressive and understanding to be as supportive as I could. I've mentioned this many times, but we don't think he will remember any of this and that's a relief, but in the moment it's rough on all of us to see him expressing pain. But it's weird because in the moment he knows what's going on and can respond to requests and even say "hi" when you say hi to him.

Today was about the toughest session so far for Daniel during OT. Even with pain meds added as a PRN for the session, on top his daily allotment, Daniel was in a lot of pain. It's strange to see and understand how painful it is for burn patients when they begin moving again - just simple movements. All he's doing is bending his arm up to his mouth - seems simple enough right?

Dan is not on solid food yet, but we're practicing the motions. The OT handed Dan a small brush (used normally for cleaning his mouth and gums) that was soaked with a slight minty flavor as a reward and to give purpose to the activity. So he's working to try to bend his arm to his mouth - a simple task for some, but EXTREMELY painful for someone with new grafts on their arms. Daniel will stretch out his tongue to meet where his hand is holding the brush to shorten the distance his arm has to travel. It's cute if you didn't know he was in such PAIN.

This is just the beginning of stretching and recovery for Daniel. It's likely to be painful for over ONE YEAR until the scar tissue yields with use and continued stretching. The pain will be less and less over time of course, but still... Somewhere between twelve and 18 months the scar tissue starts to hurt less. He's got a long road ahead.

Once the arm-stretching activity was complete we got Daniel up to sit in his chair for an hour if he could make it. You could still see his pained expression, but we got him in the chair then did a number of activities to help take his mind off the pain and the time spent sitting up. At one point the nurse popped back in and gave Daniel an extra boost of pain relief, but even with the strong meds it didn't seem to cut through the pain

enough to cease his moaning and pleading eyes. Like I said - it hurts just to watch.

With every ounce of energy Daniel was trying to tell us he didn't want to remain sitting and experiencing the pain he felt. "It's much better in the bed people!" More pleading eyes. By this time Daniel's grandparents had arrived and were quickly tasked with helping to distract Daniel from the pain. We all worked on a jigsaw puzzle - that had Daniel bending his arms even more and it's amazing how his dexterity is coming back. Mom is holding puzzle pieces out far away making him reach up and away to get the piece then he quickly and pretty accurately fits in into position. I'm sure the bending arms was hurting, but he wanted to finish the puzzle because that might mean he could go back to the bed... Nope. We wanted to get him up for at least one hour so next the family sang songs and tried to comfort and reason with him offering empathy and understanding... pleading eyes. When we got to within 5 minutes I set up a timer on his iPad so he could visually see how much longer he had. Daniel was already leaning forward ready to launch over to the bed, but had to wait for everyone's help. pleading eyes. He was giving us every queue he could think of to make us understand how uncomfortable he was. The timer helped him to get through the final few minutes.

Day 31 - Get that Body Moving

Daniel continues to receive 9000 Calories of daily nutrition to catch him up from the surgeries earlier this week. After today we will go back down to 6,400 Calories - that's still about 3x more food than I intake most days when I'm not exercising. He needs all that energy to repair his body by growing new skin. Meanwhile, every day he's spending in his bed means muscle & tissue loss due to atrophy.

Getting Daniel up and moving is important to counteract the loss of mass - even if it hurts. He's working against weakness, tight and stiff muscles, contractures and of course PAIN.

Today his PT worked with him and get his arms stretched. He expressed some pain in the form of moaning - especially when moving his elbows again. His nurse gave him some pain meds to allow him to continue. While that took effect he didn't seem to ease up on the pain expression at all. Still he worked through the session. Then it was time to get him up and walking.

Today he will be using a walker (like the normal kind you see around) that forces his arms to work a bit more. As Daniel walked about we observed that he didn't really need it. Next time he walks we may not use a walker at all. I think he's in a fair bit of pain, stiff and unused to standing up. He seemed a bit humped over and shuffled along as best he could. It's tough to see him struggle and be so achy looking.
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The afternoon brought his OT to work and stretch Daniel. For some reason Daniel's right arm seems to be stiffer and be a source of pain today. He was more flexible in his left arm and the stretching went better today. The OT brought a balloon and a therapy ball to try to engage Daniel in his bed. He seemed uninterested in it. I think the overriding pain kept him from doing much today.

We then tried to get Daniel to move to the chair for another round of sitting, but he seemed very resistant to it. Instead he began to move his legs back to laying in bed. Dawn grabbed his talker and asked for him to say "yes" or "no" to sitting in the chair. He moved his fingers to a different menu and chose "All Done"! That response was crystal clear so we ceased activities and got him comfortable and back in bed. Dan is resting now and watching "The Incredibles" with us.

I was hoping he'd be up for a bit of time sitting in the chair a second time, but he made it clear that he didn't want to do that today. Maybe tomorrow....

Day 30 - Feeling Better

Daniel had a good night last night. His BP is more stable, his oxygen intake and respiration are better. He's not out of the woods yet, but appears to be improving if you were to only look at his numbers.

Before noon he had received lung therapy through a nebulizer then shortly after that his OT arrived to get him up and moving, After that the speech therapists came in to see how his swallowing was coming along and scheduled to do a barium swallow test early next week. If that goes well then he'll begin to start eating and drinking again.

We got Daniel up to take a walking loop around the unit and he's back down in his bed. We tried first to have him walk without a walker, but it seemed like he preferred to use it this time so that's what we did. Once he got started he wanted to walk quickly BACK TO HIS BED - kind of like a horse speeding to get back to the barn. His heart rate was high so we were all trying to get him to slow down. His steps were much better and stronger looking than last week (less tightrope) and he seemed fairly sure of himself.

He was pretty tired out after that walk and took a short nap while we grabbed some lunch. He rested and seems alert again. The OT and nurses have him do as much work so they have him scoot around, raise his legs and pull himself up and out of bed to work on his strength. Some of this, like even lifting a leg, looks like it's a struggle for Daniel, but he tries to do what he can.

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Daniel's other OT came in this afternoon and did more stretching and we're in the process of getting him into a chair in a few minutes. If we can keep him in the chair for 30 or so minutes then that will be a big day for today.

At some point he will have wound care in his room. That could either be later on this afternoon or during the evening shift.

Day 29 - approximately 3 steps forward, 2 back

We began the day early with a 2am phone call from Daniel's attending doctor - Dr. Ba. (why do all his doctors start with W or B... it makes me keeping them anonymous, yet known to me trickier). Team Daniel had been talking through the evening and night about his blood pressure as it was dropping lower and lower. It was now time to act.

The request was to put in a central line in his leg to accommodate additional IVs that they would need to bring his BP back up and stabilize him. The central line allows you to plug in many IVs into a complex "accordion" that all flow into the large/wide central line that goes into a large vein like the femoral vein in a leg. All surgical procedures like this require that we approve it - thus the phone call. If there's anesthesia involved then that's another approval. [Naturally, if they could not reach us and there were an emergency they'd do it to save his life, then discuss after.]

Since the time we left last evening (I'm sure he was just missing us, yup that's it) his BP had started to drop. Daniel's attending Dr. Ba, his graft surgeon Dr. Wi., Dr. Br. (another attending), the nurses and support staff had been tracking and consulting all through the evening up to the time they decided to call us for the go ahead. The team felt that the short surgery Monday followed by the REAL long 6 hour surgery on Tuesday had been the main reason for his BP to drop and keep dropping.  Fun fact: During a surgery they discontinue all nutrition at midnight before until after he's back in his room. In Daniel's case he hasn't had much to "eat" since Sunday.

 At any rate the central line was inserted in his left leg (since that's the only place he's not burned). This is a fairly routine procedure, but it's done by a doctor not a nurse. The line uses a wire that guides the line up through and into the femoral vein. This wire is maybe 12" or longer and once the line is in place, then the wire is pulled back out. It's rare, but sometimes the pressure in the vein sucks the wire up further into the vein towards the heart. Well, that's what happened this time. This created a semi-emergency to retrieve it and redo the central line.

When we arrived in the morning for rounds that was the focus of the discussion - low BP, retrieve wire, redo central line, beef up his food intake. More procedural approvals and he's off to the IR lab. Wound care can wait until later. Dr. Ba. felt really really bad and apologized to both Dawn and I for the problem with the central line wire slipping loose and into Daniel's vein, but I don't see it so much as an error. It was an accident that happens one time out of 1000. We accepted his apology. Time to move forward.

The three giant steps we took forward this week are that his face, throat and neckline are all grafted from donor sites on his head (under his hair). We took a couple steps back due to the toll the surgeries took on his recovery and the subsequent problem with his BP.

This following paragraph is probably not entirely accurate or oversimplified, but here's what we're challenged with: The fallout from the past three days of surgeries 6 & 7 is a concern for the still-present fluid in his lungs turning to pneumonia. To treat the low BP they need to flush his system of the pain and sedative drugs used during surgery. Those drugs tend to dilate his cells and cause the low BP (among other things.) Because he's wiped out from the surgery and he has to limit his movement for the next three days (that gives time for the graft to bond to the new location) his lungs are likely to be a place where fluids will pool - so more coughing and hopefully deep breaths to help keep his lungs clear.

The next three days may look like this:

• Daily Wound care - We still need to tend to his wound care each day - that's a painful process so pain meds for that. 
• Limit movement (72 hours usually does it) to allow new graft to take hold.
• Push fluids to get his BP under control.
• Push nutrition to get him back to where he needs to be.
• Measure blood for clotting (too thick or too thin - both are bad)
• Watch for infection and treat.

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I mentioned Daniel's grafting yesterday during surgery 7 and described it a little, but I'll add more detail. 

Daniel's graft goes on part of his cheeks, then on his chin and all the way down to his neckline and a little below that onto his chest. They used donor skin from his head to graft with until they ran out for the lower portions. For that they used part of his left shin and meshed it like they did for his arms. All the grafting for this area was bolstered and stitched to him. So there are about 7 or 8 stitches to his cheeks holding the grafts and gauze in place. Then further down and around the graft site there are more stitches. I was imagining a tailor making a very contoured coat to cover the area and it amazes me how tricky it must have been to take fairly flat skin from his head and make it fit all the contours of one's chin and neck - and make it look so amazing. 

Dan's face and cheeks are swollen looking and his mouth looks like it's being pulled open slightly from the stitches. It doesn't look comfortable by any stretch (pun).

We are all anxious to see how it all turns out in a few day's time.

Day 28 - Surgery the 8th

Today's surgery picks up from yesterday. The plan is to autograft skin harvested from his scalp to his chin, throat and neck down as far as they have skin to reap. For this grafting near his face Dr. Wi. doesn't mesh the skin or stretch it. Instead he grafts it nicely in a 1:1 fashion as that gives greater range of movement and looks loads better once healed. With the thicker skin there's a greater chance of it not taking hold and other issues with binding, but Dr. Wi. knows his stuff.

The surgery was planned to begin at 7:30 this morning and last 3 hours, but was delayed until they could get a special probe installed in his esophagus... so new official start time was just after 9am. The surgery finished up around 3pm. Dr. Wi. took his time, left no stone unturned. Since the graft was for his face and neck he took more time to ensure it was perfect. So a 3 hour surgery continued on into 6 hours!

The burns required more grafting to his cheek and chin than planned. They used all the skin from his scalp for the upper areas, then nabbed some fresh skin from his left leg for the neck and area around his clavicle. Dr. Wi. showed us some photos before and after the grafting. It's so impressive what they accomplished. The difference is amazing.

Once all the grafting around his neck is in place then they pack the area with sterilized stem-cells derived from amniotic fluid that has super enhanced "specialness" to promote healing. Then they create a bolster and stitch it in place and keep the area immobile for about 5 days while (we hope) it heals and all the graft area takes hold. The next few days will have Daniel recovering with no surgeries planned until next week or later.

Daniel did his part by being the model patient and is in recovery in his room now. Normally surgery patients recover down in the surgery recovery area, but Burn ICU patients are rushed back to the ICU Burn floor where the burn team can treat him with extra special care.

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In other news I've been reading about the effects of micro-gravity on the body as it can have similar consequences to what happens to one's body in long-term bed rest on the musculoskeletal system. One of these things that happens in both cases is the unrelenting losses in calcium and nitrogen. The Soviet and American space programs tracked astronauts before, during and after space missions and learned a great deal about how inactivity and micro-gravity are similar in how they deplete the body over time.

Back to calcium and nitrogen loss: in long-term bed rest cases as with astronauts the inactivity (or simulated inactivity in micro-gravity) can lead to kidney stones as one concern. Keeping fluid intake high during and after bed rest can help reduce the chance of different kinds of kidney stones for patients.

I'm listening to the morning rounds discussions slightly differently and am beginning to understand why they track his K (potassium), weight, his urine output, stools and blood platelet counts - to name a few.

All of the chemistry goin on in his body can effect different systems in the Daniel-tron unit. It's yet another reason that explains why he's in the ICU. Burns are nasty on so many levels: (I'm missing a lot, but for starters...)

• Skin tissue care - grafting, donor sites
• Internal organ strain and damage
• Muscle and tendon atrophy
• Eye damage (not so mucn in his case, but he's been getting eye drops and salves every day)
• Blood and body chemistry
• Urine and stool output
• Nutrition - he's ramped up to 8,000 calories every day, but will drop back down to 6400 after a few day. That's to make up for the two days were he couldn't eat during surgery .
• Infection - on skin, pneumonia, organs, blood, UTIs, 
• Pain management

Still even after a month in ICU, I'm just barely comprehending how hard of an injury this burn is on his body!

Day 27 - Surgery day - shorter than we thought?

This morning Daniel is resting and getting ready for his 2nd autografting surgery. Not counting in-room procedures, daily wound cleaning and other "routine" tasks; this will be Daniel's 6th surgery. We had heard various plans for this upcoming surgery from nurses and interns, but Daniel's chief surgeon Dr. Wi. just stopped in and briefed us on his plan for today.

The new plan for this surgery is to debride any dead skin on his chin, throat, neck. Depending on what they see they may stop and just clean it up and hold off until tomorrow or so to begin grafting. They've left some of the area from his chin down to his clavicle or thereabouts alone until now. Some of the skin might be necrotic, but many times it's not. So we hope that the burn area here has healed some and since it heals quickly like the face does some of it may not require grafting - of course the doctors won't really know until they begin the surgery. Once they've got the area all set then they will either:

• go for it and precisely harvest skin from his scalp, OR
• stop, give a day or more to let it heal and do the grafts then.

So today's surgery will probably be like an hour or so with two surgeons working: Dr's. Wi. and Wa. along with a team of support staff, anesthesiologists, nurses and burn techs.

His OT arrived and worked with him this morning. Starting with fingers, hands, wrists then moving to elbow and shoulders. He moaned a few times when the stretching got to be too much for him. That's about the first time we've heard Daniel use his voice to express pain in the ICU for the past 27 days. We know that the stretching movements he needs to start making will cause pain in the joints, muscles and his skin too. Basically moving hurts a lot everywhere for burn patients until they get used to activity again. Some people have issues with pain after they've returned home, but we hope Daniel isn't one of them.

The OT was pleased with Daniel's range of flexibility in his wrists and elbows. He was more resistant in moving his shoulders today, but she didn't push him too far. It's the elbow stretching where we heard the moans. We're saddened to see him express pain and it's sort of a new development. Part of him being more alert when he's conscious will bring greater awareness of his pain. As we begin to move towards him being more ambulatory and building back his strength Team Daniel will push him more out of his comfort zone. They will be looking for signs of pain as a signal for how far they can work him and try to take him just up to that limit.

During morning rounds the staff reviewed his progress (like every day) and felt he was strong and ready for surgery. His lungs have cleared up mostly; he's showing few signs of infection and his white blood count is stable, though elevated still. A few tweaks going on here and there, but all normal I'd say. During surgery they want to get him back on a catheter for a few days to help keep him drained and flushed. I don't necessarily agree with this action as it seems like a step backwards, but we want to be sure he's healing optimally and flushing out toxins is important through this stage.

Good luck Daniel on your surgery today and we'll see you on the other side late this afternoon. 

In the meantime I've created a word cloud generated from the first blog post I wrote almost four weeks ago. (The larger the word the more it's used in the post.) The word cloud reminds me of all the crazy deer-in-the-headlights feelings I had that first day!

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With some time on my hands while waiting for surgery I've tweaked the blog a bit. It will now:

• accept comments from anyone (anonymous too),
• played with the template a bit,
• added a new gadget o track usage,
• in the footer I set up other ways to allow you to subscribe and track updates.

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The following section may be too snarky or bilious (new word for Mason) for some of you... I apologize in advance and I partially blame the redhead (ale)!
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Engage Snarkiness Font now...

Every time it's different when Daniel goes off to the OR. This time the surgical team invited us to walk along with Daniel to the surgery pits (didn't even know we could do that). The operating rooms are on the 2nd floor. Burn ICU is on the third. So I headed off with Daniel and his handlers (sounds like a rock star huh?) through doors, secure access hallways, a special elevator, more doors and bumps along the hallways to the surgery waiting "pits". Once there handler2 plugs him all back in with all his monitors and IV systems. Handler1 gives me a tracking number so I can rot, I mean wait in the OR waiting room... NOT!

Daniel and I wait there in the pits and go through a fairly exhaustive check list with handler1 which is kind of weird since Daniel's done five surgeries already without any of the extensive interrogations. They did ask us a few of these questions the first time he went off to surgery, but that was up in his room before they rolled him off. Well anyway, this time plus all the times before they couldn't ask him any of the questions in the pits that they asked me since he doesn't talk. ...Whatever - follow the procedure... at least what I begin to appreciate is MANY checks and rechecks to be sure they have the right patient for the right procedure - I guess that's comforting on some level.

Several surgery people stop in and ask me what the procedure is, that my story jives with what they've been told he's doing. Then the anesthesiologist comes in, asks all the same shit again, do I have any questions, where can they contact me, blah blah blah. On one level I'm thinking WTF - is this an omen? Why are they asking me with all this seriousness when it didn't seem like it was such a big deal all previous five times, but okay then, on the other hand it's good to know that everyone takes their job seriously and there's no question what the surgery is going to be all about.

Okay so then Dr. Wi. (the surgeon) comes in. At least he's cool with the whole scene. He's already talked to us this morning so it's on to idle chit chat... how did the burn occur (I tell the story - I've got this down to a refined art by now), how do I reach you after we're done, reassure, reassure, "I've got this," "We'll be fine", "how are you and your wife doing through all this"... 

TIME OUT FOR TODAY'S WORD:  Platitude - 

noun [ C ]

 US ​ /ˈplæt̬·ɪˌtud/

​

a statement that has been repeated so often that it is meaningless

TIME IN
So anyway instead of rotting in the OR waiting room I'm going to the library... 
CRAP... the library is closed for president's day...
       okay there's Ursula's - perfect! 
               Please be open, Please be open, Please be open... 
                    YES! Bar's stay open on president's day - I wonder why?

So now I'm sipping a nice redheaded ale and will then go on a nice long march (quickstep) and return to the OR waiting room to read...
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Snarkiness FONT disabled and back to normal again...
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Daniel is back in his room with us. The surgery went as planned - to clean and debride his chin, throat and upper chest down to about his nipples. That left his body skinless in this area so that they can graft using his scalp tomorrow morning - first thing.

We were waiting in his room and when he arrived he seemed pensive at first. Then the surgery team began to hand him off to the Burn ICU nurses. His handlers were asking us if he seemed in pain to us. The anesthesia was starting to wear off at this time, then it hit! He started to moan, he furrowed his brow, he started to really look like he was in MAJOR PAIN - OFF THE SCALE PAIN!>>!

The anesthesiologist was ready to give him something immediately for pain (hydromorphone), and he continued to moan a meek cry, he even raised his arm to hit his leg which is something he does when he's upset at home. We helped hold his hand, showed him how to breathe through the pain. He cried out a little and breathed and moaned some more. We moaned along with him so he could understand that we were helping ease the pain. The nurses delivered more pain meds (fentanyl and half his hydrocodone dose), then shortly after more hydrocodone/tylenol to prep him for wound care for his chest and back and arms.

Now that it's been about 45 minutes he's started to relax a little more. His brow is less furrowed, he's not looking quite so pained, he's stopped moaning. He seems a bit calmer, but is still holding Dawn's hand. It was rough!

Up to now I have not seen Daniel express his pain much at all. He seemed to be enduring all that's been thrown at him. He finally topped the CPOT chart - it was obvious to anyone in the room that he was IN EXTREME PAIN! It was very hard to see my son hurting so. Once we get this graft tomorrow he will be in so much of a better way to start healing. Tonight may be a hard night to get through for Daniel. We'll be here for him until he drifts off to sleep I think - can't feel right leaving him if he's scared from all the pain. Dawn is singing to him now and soothing him.



His arms are really looking good. They were grafted two weeks ago. But his shoulders are all exposed now - all red and horribly raw looking. It's hard to look at them without feeling the pain that he must be enduring! That's all I can write tonight.

Day 26 - Sunday Sunday

Daniel was queued up first to go to the Tub Room today so we held off driving in to the hospital until we knew he would be back in his room mid-morning. We learned that Daniel's white blood count had dropped back down a little; still high, but moving in the right direction. Daniel's weight dropped a bit more - we discussed some concern and what we think his "typical" weight would have been before his burn. Since his calorie intake was upped about 30% two days ago we think it will begin to balance out.

Last night (Amanda, her BF Evan, Susan, Wes (grandparents), Dawn and I) met back at our house and walked down the block to dine at Duo. It was a great evening escape for us to spend quality time with family and getting to know Evan better. I think we all had a good time over dinner & dessert and then back to our casa.

Amanda was with Daniel again this morning and spent some time with Daniel looking on protectively as only a big sister can. She and Evan are driving back over the Rockies to Grand Junction after meeting Carly her friend from HS and college roommate.

By noon Daniel's temperature spiked so he received some Tylenol and it's been dropping back down since. He's been pretty sleepy today, but then his eyes open and he's looking around and appears alert. These days he seems to really enjoy having his feet and head rubbed - he shuts his eyes and you can see him relax big-time!

Jamie is here today (on her birthday) visiting Daniel and doing some light stretching and arm work. We're hoping to get Daniel sitting up again and doing an activity. We want his fever to go back down before we get him up and out of bed. We want him all rested up and ready to go for his big surgery tomorrow, but he does need to get moving.

Daniel did 30 minutes sitting up, but he seemed pretty pooped after doing a puzzle. We gave him his talker and he asked for BREAK, then he asked for BED so we honored his request, assembled the team and moved him back to rest in bed. He's currently shaking off the pain/exhertion, but doing fine again in bed. I wonder if he knows he's having a big surgery tomorrow?

Two days ago when Daniel was once again walking out of his room and sitting in a chair the staff declared him "ambulatory" which is a big milestone. It means he will be doing more movement and gaining strength, but that they've raised the bar for what they expect of him too. It also earned him sheets on his bed!

I had a seriously gnarly headache last night that I could not make go away. My head was pounding from every angle (stress + alchohol + sweets DO NOT MIX) - it reminded me how Daniel probably feels 24x7, but it doesn't even come close to his struggle. I just had a wittle-teeny-tiny headache, while he's got this major ache all over that will not go away.

The thing is there's no escape until he's all better. He can't escape the hard work his body is doing CONSTANTLY. His heart is working hard; all his organs are pumping and working overtime. No escape from this HARD WORK until he's got new skin everywhere. I'm hoping that once his burned skin areas are all grafted over that his body can slow down a little and doesn't have to work so hard CONSTANTLY - WITH NO BREAK!

Once the grafting is complete then he will have new battles with regaining strength, fighting infection and overcoming the pain of using his body again - a lot like working for months in zero gravity and coming back to earth. At least by that time he won't have the marathon-each-day exhaustion that he's dealing with right now.

Day 25 - Preparing for another surgery

Summary: Daniel is at UCHealth in the ICU Burn Unit where he will remain for many more weeks recovering from burns over 57% of his body on January 25th, 2017. We expect a full recovery and eventual return to home - but it's a long road ahead.

Today Daniel will be resting up and preparing for his second grafting surgery planned for Monday. Amanda, his sister is with him now soothing his hair and helping him to relax. It's really nice to have Amanda with us for the weekend.

Daniel's white blood cell count continues to rise and the doctors think the most likely reason is the area of skin on his throat and shoulder needs to come off. He's on a broad-spectrum antibiotic that will handle any infection, but he doesn't seem to show any signs of infection anywhere so it's more of a precaution than anything. As the plan for Monday's surgery is to graft that location (neck, chin, shoulder) it's probably exactly the right thing to do and nothing to worry about now.

Now for some "fun" with pain: I've set up a form that you may participate with. I've been wondering a lot about pain (since Daniel is unable to tell us exactly what he's feeling) and wanted to expand it so readers could also chime in with their own experiences.  All input is anonymous - I can't see your username or email or other personal details (unless of course you wrote your name on an answer - please don't do that). So click away and at the end of the survey when you SUBMIT your choices you can view previous results to see pie chart of responses. In a future post I'll attempt to draw some conclusions from your inputs so THANKS!

Day 24 - More walking and bare arms

Today during morning rounds the team upped his nutrition intake. He seems to be burning through all the food they are giving him via feeding tube. His weight had dropped back to his original weight so we were ready to ask about this, but the team had already decided to up his intake so that's great.

Daniel took another stroll today this time to the beloved Tub Room. But when he came out he had his arms bare for the first time. We observed that his left elbow and bits of his whole arm are unburned and the rest of his arm has a 2:1 autograft from his legs. The 2:1 ratio means the surgeons mesh the source skin and stretch it to twice its original size then graft that to the burn area on his arms. His left thumb has grafting, but it's 1:1.

Here's a short video of Daniel walking from his room down the halls to the tub room this morning. I missed his strut yesterday, but I'm told that onlookers (visitors, nurses, doctors) were crying while taking snaps of his first walk. He has this endearing quality that wins the hearts of random people. (This is a video that may not play on an iPhone - 😕.)

After a short rest in his room Daniel's OT talked to us to have him sit again in a chair and do some activities to get his arms working. This time she asked that we try to keep him doing activities for 1-2 hours! That seemed like a pretty high bar to aim for at this point in Daniel's recovery.

We all helped to get Daniel and his extraneous tubes and wires all set and he stood, pivoted and sat down in a chair. Then we moved the cart over and gave him jigsaw puzzles to work on. This is the first time he has used his arms and fingers for any activity. At first he was shaky and had difficulty getting his fingers to grasp the puzzle pieces. Slowly he refined his gross and fine motor skills, achieving accuracy and evened out his targeting and placement. One could see how hard he was trying to get his hand-eye coordination and all of his body to work again.

After about an hour Daniel started to nod off. We got him back in bed for a rest and let him recover for tomorrow when we'll be trying to get him up in a chair using his arms again.

Over the weekend his sister Amanda will be visiting so that will be really awesome.

Day 23 - Walkabout

Short message today.

Daniel's lungs are clearing up, but not yet 100%. His oxygen saturation has stayed up above 90% and he's looking more alert.

Daniel's had his central line removed from his thigh to give it a holiday. They'll need it again during his next surgery which is tentatively scheduled for Monday. The plan for this surgery is to autograft his chest and neck.

Daniel was awake for most of the day today. He'd doze off briefly, but he stayed awake for most of the daylight hours; more than he has previously.

Daniel walked this afternoon down to the nurses station (probably to flirt) then turned around and came back quickly to his room. This is the first day he's set foot outside his room since January 25th under his own power.

Way to rock it today Daniel. Keep on healing.

Day 22 - King of Pain?

We've been wondering all through this ordeal if Daniel is in pain or rather if he's registering pain and if that's hurting him in some way. We've known from long before that Daniel seems to show a high tolerance to pain, but he can't tell us exactly on a scale from one to ten where that pain registers.

We have lots of questions with no answers because he can't tell us:

1. Are you in pain? or Does the injury you have now (burn) hurt?
2. Do the medications for pain actually address the pain you're in?
3. Does one kind of pain feel differently from another?
1. If you are in pain what is the sensation? 
2. Does a skin injury like the burns you received feel differently from sore/tired muscles or a headache or tummy ache?
4. Can the staff accurately determine your level of pain?

The last question above is something we understand some. The gold standard used by nursing to determine pain-level in patients is to simply ask on a scale of 1-10. This method can't work when the patient is unable to respond (eg. if in a coma, dementia, non-verbal). Another tool used is the RASS scale - which measures agitation, alertness and other criteria that doesn't really apply to Daniel either since he doesn't respond to complex questions. For elderly patients with delirium there's another tool named PAIN-AD, but I looked at it and a comparison of both PAIN-AD and CPOT and felt PAIN-AD wouldn't help much for Daniel either.

The best practice used my the medical community for a patient like Daniel then is to rely on what's called CPOT. That's the Critical-care Pain Observation Tool. This tool comes a little closer in that it looks at four criteria on a scale to come up with an overall value for a patient's pain level:

• Vocalization - talking, sighing, moaning
• Facial Expression - relaxed/neutral, tense, grimacing
• Body Movement - absence of movements, protection, restlessness
• Muscle Tension - relaxed, tense/rigid, very tense or rigid

The CPOT measurement doesn't work well for Daniel (in my opinion) because he has never expressed pain in the ways other people do (before this injury or during it):

• pain vocalizations - beyond the surprise at the moment he is hurt he doesn't whine or moan.
• he doesn't seem to make facial expressions when in pain (like you or I might grimace or have our eyes wide open or have tears). He will object to having a tube shoved down his nostril, but I think that it's showing agitation of the act, not a feeling of pain per se. (IMO)

That leaves body movement and muscle tension:

• body movement - he can't move his body that much in his current condition as he's kind of pinned down and very weak.
• muscle tension - this one we can see some - shortly before it comes time for his pain-med dosage we've observed that he will shake and shudder and we don't think this is because he's cold on feverish.

With some more thought I may develop a new scale named the PAS4D (Pain Automation Scale for Daniel) or some other acronym TBD.

Now back to my other unanswerable questions from above...

1. Are you in pain? or Does the injury you have now (burn) hurt? 

I've read some research that explored whether people on the Autism Spectrum or ASD (Autism Spectrum Disorder) have a high threshold to pain as has been suggested - and we think Daniel is this way too. While the research up to this point seems inconclusive the findings seem to reveal that people with ASD may experience pain differently than normal folks - that it can manifest itself in all kinds of ways, but nothing I've read from research answers the question fully.

       2. Do the medications for pain actually address the kind of pain you're in?

There are MANY pain relieving drugs out there. Daniel has been exposed to lots of them throughout his recovery up to this point. I've mentioned many of them throughout this blog. I've also said that burns are really painful. I do believe that Daniel is getting the right kind of pain meds to address the pain he's experiencing from this burn, but is he getting enough if they can't accurately tell using the best practice methods developed for regular (non-autistic) patients?

       3.  Does one kind of pain feel differently from another? 

There's an interesting blog written by someone with ASD and in this post she writes what pain is like for her. I wonder if physical pain for Daniel is the same as this person's? Obviously this person is not Daniel and this writer is at the other end of the autism spectrum in terms of cognitive skills - especially writing. 

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Daniel's off to the tub room for wound care. That's an especially painful experience for burn patients. He's been given a bunch of pain-meds in preparation for it like every day. I hope he's able to rest through it or drift in his own world of autism. Maybe he's pondering the words to this Police song King of Pain:

There's a little black spot on the sun today
It's the same old thing as yesterday
There's a black hat caught in a high tree top
There's a flag pole rag and the wind won't stop

I have stood here before inside the pouring rain
With the world turning circles running 'round my brain.
I guess I'm always hoping that you'll end this reign,
But it's my destiny to be the king of pain...

There's a little black spot on the sun today
That's my soul up there.
It's the same old thing as yesterday
That's my soul up there.
There's a black hat caught in a high tree top
That's my soul up there.
There's a flag pole rag and the wind won't stop
That's my soul up there.

I have stood here before inside the pouring rain
With the world turning circles running 'round my brain.
I guess I'm always hoping that you'll end this reign,
But it's my destiny to be the king of pain...

There's a fossil that's trapped in a high cliff wall
That's my soul up there.
There's a dead salmon frozen in a waterfall
That's my soul up there.
There's a blue whale beached by a springtime's ebb
That's my soul up there.
There's a butterfly trapped in a spider's web
That's my soul up there.

I've stood here before inside the pouring rain
With the world turning circles running 'round my brain.
I guess I'm always hoping that you'll end this reign,
But it's my destiny to be the king of pain...

There's a king on a throne with his eyes torn out
There's a blind man looking for a shadow of doubt
There's a rich man sleeping on a golden bed
There's a skeleton choking on a crust of bread

King of pain...

There's a red fox torn by a huntsman's pack
That's my soul up there.
There's a black-winged gull with a broken back
That's my soul up there.

There's a little black spot on the sun today.
It's the same old thing as yesterday,

I've stood here before inside the pouring rain
With the world turning circles running 'round my brain.
I guess I'm always hoping that you'll end this reign,
But it's my destiny to be the king of pain.

King of pain [3x]

I'll always be king of pain... [4x and fading]

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The one thing about pain or discomfort for Daniel that we as his parents understand and have observed in him time and again is how he responds to it in the moment:

• Sickness - When he feels ill he shuts down and sleeps it off. He doesn't whine, moan or complain. He pulls a blanket over his head, shuts off from the world and gets better.
• Internal pain - When Daniel has a specific pain like a tummy or tooth ache he puts our hand on it and we understand what he means. But what if he hurts all over, everywhere, and his hands are fixed out in airplane form as they are now? He can't show us.
• Skin abrasion - When Daniel has injured himself like a scrape (which is rare) he lets us know there's something wrong so we can fix it. He will take our hand and put it on the injured part of him. He leaves is to us to figure out how to make it better. This is something he can't do right now.

In all the ways he might be experiencing discomfort or pain the one thing he has learned to do is to just sleep it off, shutdown, and escape from the world. This is what I explained to the team as his main coping mechanism when not feeling well. When that fails him he tends to lash out with a behavior although that's just not an option available to him in his current state.

During morning rounds today we discussed the level of pain control he's on versus average patients (if there's such a thing). The team did explain that he's far below the level of pain meds they would have other patients on and they were basing this on the CPOT paradigm explained above. I pointed out that I have concerns that that tool may not fully work for Daniel. While I agree with the thinking that it is a good long-term goal to get the body off the pain meds, I suggested that it may be hindering his ability to cope with the pain minute to minute. My insistence seems to have paid off I think for the time being...

What Team Daniel came up after rounds is to give Daniel a little recess time alone, covered up and warm and in a darkened room with a little space from distractions for an hour. The doctors has also reasoned (I may have had a somewhat forceful hand in it) that maybe he's not coughing enough because he may be in too much pain in his chest. I'm hoping this combination of Daniel time + pain med boost + lay on side helps him to clear his lungs while he have him positioned on his right side letting gravity help with the left-lung gunk. As I sit with him he's coughing deeply again about once every few minutes so it's a good sign if he keeps it up.
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Later today he's scheduled to be observed by the ST to check for swallowing, but I'm not sure if that will happen today as the afternoon is wearing away.

ST came by with ice chips - she said he looked much better than the first time she observed him 5 days ago. Daniel was pretty wiped out (see above), but once I slipped an ice chip in his mouth he seemed to brighten up, begin to move his tongue around and crunch the ice with his chompers. He did do some swallowing. It looked like it was an effort to do so, but he didn't gag or spit it out. She encouraged us to keep giving him SMALL amounts of ice chips to practice swallowing and getting him ready for the next step towards eating and drinking again. Soon she would like to do a barium swallowing test, but the timing may conflict with his upcoming surgery so we will have to see how that all plays out.

Did I mention surgery? It looks like he may be queued up to do his second surgery for autografting for his chin and throat early next week. That could change, but he's healing nicely so maybe soon.

Today they removed some of his staples on his arms which suggests he's healing well along his arms and will be getting more staples out each day during wound care.

I think that's all I've got for today.

Day 21 - 3 Weeks in ICU Burn

We were greeted today by a sitting-in-chair Daniel who was chillin' with his OT/PT friends. He was doing okay then his oxygen dropped a bit so they added the mask, but otherwise he was just fine sitting up. This activity is great to get his lungs and body working a bit harder. Here's a photo of Daniel with Dawn sitting together (him chair, her stool): You'll notice the buzz-cut he got when admitted and was in the tub room for the first time to gauge the extent of his burns. The surgeon wanted to be sure there were no extensive burns under his hair. He did have a few slight burns, but they've mostly healed by now. When ready for any grafting to his face the surgery team will harvest some of his scalp skin to match closely to his face.

Daniel was out of bed for this morning's stint about 50 minutes before he signaled (by leaning forward expectantly) that he was done and needed to pivot back into bed.

A short while later we were visited by a therapy dog. 🐕 Her name is Lucy - a golden retriever. She seemed a bit timid about entering the room. Maybe it was the gowns and gloves we had her put on (just kidding). Actually her owner isn't permitted in a room if required to gown up so she extended Lucy's leash so Lucy could walk in and visit with Daniel - Well it was mostly Daniel's floor that interested Lucy, but Dan glanced over and noted her presence. 🐶

Back at home our dogs know something's up. For starters they aren't getting all the table scraps that Daniel "accidentally" slips to them. Their sad-eye Jedi tricks don't work as well on Dawn and I. I believe they DO miss Daniel being at home as do we.

Daniel continues to cough which is THE thing he needs to be doing to clear his lungs. Sitting up, standing and general exertion are key tasks for his recovery right now. Daniel will be leaving for wound care in the Tub room soon. That signals lunch time for Dawn and I then we'll spend the afternoon with him and try to get him up again.
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After Daniel's return from wound care his breathing began to drop intermittenly. He hit a new low so there's concern, but we're addressing it. Team Daniel used NT suction (don't ask) to help clear his airway and we've got him sitting up. His breathing is a bit weak at times, but he's getting air; just not enough (>90%). Just awhile ago the respiratory therapist stopped in to administer his daily CF therapy medication through a nebulizer and then some more NT suction and he's doing better.

That activity will continue through the night - NT suction, getting some good coughing to clear what's deep in his lungs and out and keep rotating his body around letting gravity do its thing.

Day 20 - Pain shmain

Daniel once again wowed his PT today by powering through his therapy session. We removed his arm wedges, and helped him sit up, swing his legs to the floor beside the bed and then just hang out for a good while. As he was sitting he seemed to be slouching like any 20-something slacker - well that's how I was back then (okay not really... no yea I was a sloucher...). Anyway, I asked Daniel to sit up straight and he did it and held his chest out and looked impressive.

Then for kicks we stood up for a short time. This seemed to tire him out, but he did it; never complained and just kept at it. His PT seemed impressed that he wasn't complaining or showing obvious signs of pain (wincing, whining, complaining, pleading, facial grimaces, screaming in dire pain, cussing, inventing new cuss words - you know, we've all been there). I asked the PT how a "typical" burn patient would respond to this effort after having been in a bed for almost three weeks and she said he was doing fantastic! Most people can't do what he just did without a great deal of discomfort. Burns are the worst!

On Daniel's iPad we played our therapy set-list during the time the PT was in the room and when she was leaving we prompted him to say good-bye. His tiny little voice said "bye" so I'm thrilled with his cognitive side showing alertness again too.

Tomorrow's plan for PT/OT is to have him start sitting in a high-backed chair and engage in some kind of activity for 30 minutes and possibly up to one hour. We think this will probably fall along the lines of trying a simple jigsaw puzzle, watching an iPad video or playing the FLOW app on his iPad.

We were expecting a ST to test Daniel's swallowing ability today, but no-show as of 4pm. We want to get him drinking and eating and using his own arms and hands to do that soon, but we need to get him beyond ice chips - one at a time. But it's all coming soon.

Now that he seems to be germ/infection-free from the tests they've verified, Daniel is off any antibiotics. His chest x-ray looked improved today. We think the cystic fibrosis therapy they began yesterday has helped to get him coughing up all the fluid & gunk from his lungs. He continues to cough and hack up stuff intermittently.

While Daniel was in the tub room for wound-care the OT worked his arms and did some nice stretching. They keep the tub room very warm (~90F) for the patient. She stopped by Daniel's room just now to report that his flexibility in his arms is also good. His shoulders were a bit tight and he resisted some of the work when she stretched that area, but the rest of his body was great from her perspective.

Also during wound-care the nurses discussed that his arms appear to be healing so well that they can remove the central line from his leg and tap him on some good veins on his arms - which apparently were easy to see through his fat-free skin. So I'll write it again: Daniel arms are healing really nicely!

Speaking of fat-free... Daniel's weight has come down to something closer to his norm. All that water/fluid weight-gain seems to have come down some. (He weighed 121 pounds today, whereas when he was admitted to the ICU he weighed 113. He topped out at 149!)

His legs look super thin now. No more cankles  for this guy. We do need to get him moving and using his body again. From the physical therapy we did today I can tell he's really weak and tires easily, but he's been a great patient and not fought against what is asked of him - that's what the other patients do, not our trooper ("Starship Trooper") Daniel!

  

Day 19 - Sunday

Dawn and I got up walked the dogs, grabbed some food for lunch (provided by our loving friends) and went out for breakfast at one of our favorite local places. We usually go out to breakfast with Daniel and this was the first time Dawn and I had been out at all really. A nice quick departure from our "new normal" and back to our "normal normal". 👍

But reality rang back in during breakfast when we got a call from the hospital asking for consent to perform another bronchoscopy. They wanted to do a third one as the x-ray for today showed more fluid build-up. By the time we breezed into the burn ward they were prepping him for the procedure. For some reason the scope was not showing a good image so in short order the respiration tech produced a new one. And we're ready to go. Jamie arrived just in time to observe.

Dr. Br. performed the procedure again, but this time it was harder to get a good angle so Team Daniel moved the bed away from the wall, lowered the head of the bed a bit and the doctor climbed up on the bed-head and aimed at Dan's mouth from above. (Anything to get Daniel what he needs!).

They began the procedure and immediately started getting gunk out of his throat. Then a bit further down and schlooop! Something big, icky, and thick got sucked up. We examined it on his bed when they ejected it from the sucker. I'll just describe it as ewwww and leave it there. Moving down further we got more gunk out. You could see some redness from where we'd probed the two prior days since lungs and bronchial tubes aren't used to getting camera probes shoved down them. But we were getting a lot of really "good stuff" out. The x-ray showed a big improvement. The concern is that we don't want to keep doing daily bronchoscopies as it's hard on Dan. We need him to cough up the gunk and get it out of his lungs.

We discussed other strategies:

• Tilting Daniel to his right to let gravity do a little of the work. Reading back from even the first few days I wrote about how Daniel seemed to lean his head to the left some. What we've been noticing lately is that he seems to be holding his body in a way that might be contributing to the fluid build-up in his left lung only. 
• Keep the new uber-bed moving side-to-side to swish him around.
• Dr. Br. checked with his pulmonary doctor colleague pals and they confirmed with him that it would be clever to treat him like a patient with Cystic Fibrosis since he's similar (not even close) to such a patient in his current chest-burned condition. So Team Daniel called up some medication that will cause him to cough more deeply and that will help to work up the stuff and get his chest clear. 
• Try to get Daniel to stand - but all the procedures needed for a burn patient (wound-care and what-not) take a lot of energy out of him so he may not be strong enough today to do so. Maybe tomorrow though.
• Step up his mouth care - brushing his teeth and mouth will help keep him healthy and knock out any bugs wishing to settle there like a squatter.
• Chest compression - not even an option to try since he has burns all over his chest and back.

At any rate as of mid-afternoon Daniel is doing some good coughing on his own and the mama-bear (aka Dawn) is helping to suck it up and get it all out of his mouth and throat.

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One of the residents Dr. C. (a favorite of ours) here at the burn unit ICU stopped in to say she had completed her 4-week rotation on the burn floor and had to move on to the next stop in her rotation: trauma floor. She wanted to ask if it was okay to stop-in still and check on Daniel's progress - isn't that cool? We are sad to see her go - she's awesome, super competent, and very upbeat. Dr. C. expresses in all her actions and words that she cares! We showed her the link to this blog and she seemed thrilled to have a way to follow along - I hope she's reading this post - maybe it will make her blush a little and know how much she is appreciated. ❤
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Today Daniel visited the tub room and for the first time since his arms were grafted on Tuesday. They took a peek at his arms and cleaned and bandaged them. What they reported was that his arms looked great. His surgeon was vacationing in Hawaii, but he wanted to know how they looked. The burn techs sent photos to his surgeon Dr. Wi. and he too was pleased with the photos.

Day 18 - Clear the lungs

Today is turning out to be more of the same as yesterday for Daniel.

His right lung looks on an x-ray to be even more clear than yesterday. His left lung looks maybe less clear. There still isn't an obvious sign of pneumonia and the latest test cultures are growing still so we don't know the results from that later today.

The plan for this morning is to do a 2nd bronchoscopy to help clear up anything in his lungs then try to get him standing later today if he's up for it and his oxygen intake remains high. The staff give Daniel a fair amount of pain medicine to get through this procedure - it doesn't look or sound like much fun, but al least he's kind of knocked out for the procedure and a good while afterwards.

We completed the bronchoscopy with a bronchoscope (fun to say?). With the camera mounted on the end you could see some real junk and Dr. B. was able to remove a lot of it with suction. This time the goo was thicker than yesterday and perhaps more obviously blocking his lungs from getting air intake making it harder for Daniel to breathe. Once the procedure was complete his oxygen intake was very good at 99%. Even though he's conked out right now we are pleased to see it looking that good.

Soon an x-ray will be done to compare to the earlier ones and we'll be able to see if things are starting to clear up in his lungs. If it turns to pneumonia then Daniel is already getting a broad-spectrum antibiotic (that can be tuned to target the specific bug if the culture shows it) so I think he's set up to get through what ever this is in short order.

The afternoon will be a time to try to get Daniel standing up if he wakens up enough. I'll update this post once we've given that a try in several hours...
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Right now I'm going to sit in on SOAR meeting - the same group Dawn and I met with the first night. It is a burn victim recovery group. The groups consists of hospital staff and burn victims and family and friends. There was a recently burned patient who may be released from the ICU in a few weeks. He is further along in his recovery than Daniel. The focus turned towards what many patients are faced with when they are released and begin to live back with their loved ones.

One thing that Daniel may never have to deal with is the self-awareness and self-image one has after being burned and scarred. Stares in public that burn victims face when people in public see them are common for burn victims. One can't help but look at their burns - sometimes gawking or wondering why they are disfigured. Daniel has never been overly self-conscious or worried about his appearance - he has us for that. Before his burn Dawn cut his hair with a Flowbee, we help with shaving his still boyish face, brushing hair and teeth and grooming. He can do those things, but usually not quite pass muster. He sometimes puts his shirt and shoes on backwards and we help fix that for him, but he doesn't seem to care too much about that and doesn't seem to have discomfort from it.

I burned my hand badly over 22 years ago. It didn't require grafting, but the recovery was similar to what patients go through so I have first-hand (pun hazard) experience with what I was hearing from other burn victims, but really I was there for Daniel and to support the others in the group.
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The afternoon came and went. Daniel got a new cool bed that pumps up the mattress and rotates slowly from left to right to allow movement and kind of swish around the fluid in his lungs to work their way out.

Daniel had his dressings cleaned at about 5pm. Tomorrow they will take him to the tub room for a full dressing change and to check out his arms for the first time since being grafted. Can't wait to hear how his arms are doing with their new skin.

Through all of the tasks today his breathing has improved since the bronchoscopy from the morning thus it may have helped a lot. The team have been weaning him off oxygen slowly and soon he may be breathing on his own and hopefully through the night or maybe by morning.

As of this evening Daniel is on two antibiotics. Not giving a lot of detail and it's still a bit over my head, but sufficed to say the two of them work well together to knock out bugs that often enter this phase of a patients recovery.