Day 7 - 3rd day planned for surgery

Dan will undergo his third surgery that's scheduled for 2:10 this afternoon. Another 4-hour debriding session is planned with the chance for doing some skin grafting - but probably just debriding and maybe laying down some cadaver skin protectively until real skin grafts can be performed.

Daniel's surgery yesterday was a struggle for the surgeon. They started by taking a peek at his chest and the work they did last Friday during his first surgery. Things looked good on the front side so they flipped him and worked on his back. Plenty of work was completed, but as Dr. W. would move to another location on his back the prior areas would start to bleed - they were a bit stumped by all this and unsure as to why this was happening.

They had questions for us after Daniel was back in his room and safe.

• Do you have a history of bleeding in your families? No
• Does Daniel have problems with wounds continually bleeding? No
• Does he have problems where cuts and woudns won't clot? No

So we (collectively) were left with a big question as they didn't see any "good" reason for his bleeding issues. It left Dawn and I feeling low last night and it messed with my sleep. Dr. Wi. had not seen something like that in surgery with other patients: They'd finish an area, then find it would start bleeding. Suture it and then he'd bleed from another location that they'd previously finished working on and on and on. Like he had sprung leaks. The only thing they saw from his panels and tests was that his platelet count was low. Dr. Wi. was concerned he'd continue bleeding through the night, but that did not happen.

The plan for today then is to pump him full of fluids, give a unit of blood before the operation which has already happened and be ready to deal with what comes up during surgery. His platelet count before surgery was in the 80s and after a unit of blood it's now 137. That increase is a good response. Anything over 100 is ideal for going into surgery they tell us so we think Daniel's body will do much better in surgery today. I think the plan is to work on the chest and neck area and possibly his arms, although we think work on arms won't start until Wednesday.

When we arrived this morning Daniel's face was looking much better. All his fingers are currently unwrapped and looking blistered, but not too bad. Several fingers have no burns or very slight burns on them. That will serve him well once active therapy starts in a few weeks. His head is shaved down to a nub - first time we've seen him with a buzz cut.

Today's prior surgeries finished up early so Daniel will be leaving for his surgery soon. If they have him ready to go by 2pm that will be great says Dr. W. who came by to chat with us.

Evening update:
The surgery went really well today. Dan now has allograft or "cadaver skin" on his chest and back. Tomorrow they'll debride the arms and wrap them in cadaver skin and add splints to keep the arms straight.

Daniel has been slowly weaned off his sleepy meds - Versed. As it's been almost one week since his accident this is a good change, but may bring lots of challenges as he starts to be more awake. We may need to help him understand what's happened and keep him from hurting himself if we starts to move around. I guess we can't know how he will respond, but that time is coming soon.

Dan's BP was staying where it needs to be during surgery and it's doing fine now too.

Gary Hein stopped by while Dan was in surgery so he didn't get to visit with Daniel, but it created a welcome diversion for Dawn and I. Sometimes a nice change of pace is what we need, but it's hard to plan for them. The timing of his visit just turned out to be great.

That's about all I want to write for today. Pleasant dreams all.

Day 6 - Surgery Day #2

By all accounts Daniel had a good day yesterday - Sunday. We were with him most of the day and into the evening.

He went off CVVH dialysis (I think Saturday night - days are running together) and stayed off. His blood pressure has been pretty good and they've been able to keep his pain meds low. Dan is bleeding out of his wounds and that has required a few extra units of blood over the course of the weekend - all a result of the first surgery. This may be a recurring "thing" over the course of the MANY surgeries he will have - what with having no skin to hold in the fluids & blood I suppose. Fluid loss is enormous with burn patients - they lose through exhalation, urine, perspiration and the weeping of his open wounds covering his body.

We learned what the calorie intake is (approximately) each day for Dan - want to guess? It's a lot higher than I would have imagined, but since he's doing that whole marathon thing each and every day I guess I shouldn't be all that surprised... I'll leave you in suspense until the end of today's post... (hehe)

Today (Monday) Dan seemed calm in the morning. We met with his OT again as she worked his fingers, wrists, elbows, shoulders and even got to his neck. Dan seems to favor leaning his head to the left where the airway hoses connect to the breathing machine next to his bed on the left side. He's been laying mostly that way since day one except for when nurses turn him and use pillow wedges to help prevent bed sores. With some help the team got Daniel's head to be more straight for a change. I can't imagine the neck aches and "kinks" a conscious person would feel from such an extended time in a single position so it's a good change to keep adjusting him even if he favors and keeps moving to a preferred position.

After working his joints and doing some simple motion exercises Dan's OT reinserted the large foam arm wedges that will become a common aid in his recovery. He's in a sort of modified airplane pose with both arms (if he can handle it) out at his sides to stretch the skin, tendons, muscles and shoulder joints and prepare for new skin that will want to tighten as it grows back. With burns as bad as his in his armpits and along his arms and sides this is a vital part of therapy even at this early stage. Two hours in this position, then a bit of a rest, then two hours hours back.

I think from all the OT activity he received in this morning his blood pressure dropped a bit so they gave him some medication to force his PB back to an optimal level. They say in burn victims that low pressure is like robbing the heart, kidneys, liver and his body overall of what's vitally needed to help heal so they are always watching it closely. 

Another thing they monitor is his urine output. They've explained that in any patient (elderly especially) if their urine output is good then many other things internally are going to be okay. Low urine output is a signal to the observant caregiver and you need to start looking at what's going wrong or about to go wrong.

Dan has some fluid buildup in his left lung they keep monitoring by x-ray and with cultures. They got a sputum sample from deep in his lungs (which by the way he does not like giving!) and waited for the culture to develop to identify if there was bacteria making for pneumonia - common for burn patients spending days immobile in bed. They have samples from his skin and blood and suspect all will be a similar form of a Staph infection that they are treating with an antibiotic tuned for that strain. With so many wounds across his body it's possible to be bacteria and infections from different strains all at once in different areas. They cover all the burn areas as a matter of course with burn-net (a fine mesh) that is treated with many bug-resistant tools including silver, bacitracin and medi-honey.

Daniel was scheduled for a midday surgery that could last for four hours. He didn't get started until 3pm so as I write this half-way into his surgery I wait for word and to rejoin him in his room. A few more hours to go.

While he was in surgery I walked around the grounds - it's big. There's the innerds of the hospital I have yet to explore, but I got outside today because the sun was out and it's good for the soul. I walked about the campus (it's a medical university after all). So this entire property has some history being a military base originally and I think it's about a square mile on each side. Under construction on the east end is the VA hospital (ya that one that's had cost overruns and been in the news), but I didn't get over that way. 

Instead I weaved through the research buildings, ventured into a few buildings with classrooms and even found a student art gallery. Nearly every classroom, lecture hall, meeting room and study hall had students in it. Away from the hospital this is a busy place. I walked around the research labs and offices fascinated by their areas of study. Office after office of PhDs, Post Docs and lab rats working and doing research. You might call this area of the campus a brain factory and you wouldn't be wrong!

I found a few floors in other buildings that had some really comfy chairs and read a few pages from a book to escape the daily concerns of a worried parent with his boy in surgery.

As I've typed this over the past hour I still wait for Daniel to come out of surgery so I'll end here for today. I'll update with how the surgery went and what's planned beyond in tomorrow's post. But as promised here's the answer to what are Daniel's daily calorie requirements each day while he's here in the burn ward... drum roll... so it's roughly 5,000 Calories!!!! We may fatten him up yet! 

Day 5 - Dawn's status

Many of you have asked about Dawn, how she's doing and are her burns okay, so without further ado:

Here's Dawn's story: (in her voice)

Dawn is doing well.  Wednesday was pretty hard because I was the only one home when Daniel set himself on fire.  He started making a panicked noise and I saw the flames shooting up his back.  It seemed to take forever to get the fire out.  I grabbed a dish towel and tried to smother the fire.  I dropped Daniel to the floor and rolled him but the flames continued to burn very hot. I took off my coat and wrapped it around the flames but it melted.  I finally ran to the sink and filled a pot with water and called Daniel over.  I dumped the water over his head then hosed him down using the faucet.  The whole process seemed to take forever but probably only took a few minutes or less.

Daniel and Dawn were taken in an ambulance to Denver Health, that is where he was sedated and had a breathing tube inserted before being taken on to the University of Colorado Hospital. It was there that they found I (Dawn) had a small burn on my right wrist and a deeper burn on my left hand near my pinkie. Both burns were treated that day and really have not bothered me since.

We have spent most waking hours at the University of Colorado Hospital burn unit since Wednesday.  While Daniel is still being kept heavily sedated, he is making steady progress and we see improvement every day.

Day 5 - Physical Therapy In Earnest

One of the nurses noticed that Dan was tapping his foot to the beat of a Disney song when Beauty and the Beast was playing a night or so ago. That was neat. We know he sometimes moves rhythmically to music and movies so this was encouraging to hear.

We met one of the OT's today even though it was Sunday: Her name is Katie and she will work most Fridays, additionally we have Jen (primary Mon-Thu), and Amanda. All of them may cover on various weekend days.

Jamie our long-time friend - she's worked with Daniel just about every week for ~13 years. As she works as a professional OT we wanted to definitely get her knowledge in the mix with the OTs here. Cosmically Jamie was here when Katie the OT was here (on a Sunday mind you) and they quickly bonded and shared knowledge about burn patients and the uniqueness of working with Daniel. This comes just at the beginning and smooths SOooo many concerns I had with staff coming up to speed with working with our non-verbal son.

So far Dan has had a good day. His daily report was solid. Nothing major to report. We're not overly worried right now about the casein in his food supply and besides there aren't options for different protein rich mixtures that won't have casein.

Things on our to do list:
Keep talking to Daniel when we are here. He needs to hear our voice. (Doctor's orders).
Make a page on Dan's Talker for PT exercises and maybe breaks that he's capable of.
Get pictures of staff to put on his talker.
Make a music playlist on his talker that can be for when the OTs work with him to help him understand that it's work time: "Good Mother" and "Baby Elephant Walk"
Make a picture schedule guided by the OTs to show Dan as he works through the steps of therapy.

Here's a list of notes exchanged with the OT:

Guidance from Katie (OT) [Okay I’d say this is more Jamie than Katie, but that’s just me and my bias - MG]

• Start continuous cycle of designated 2 songs (Elephant Walk and Good Mother) to play during all therapy/ROM times so Dan can learn to associate and anticipate therapy/movement when he hears those. Turn the movie off during therapy.
• Watch all lines and tubes
• PROM distal to proximal
• 30 sec each joint, 2x
• Start with flexion
• 30 second breaks
• Slow progressive stretch and hold until resistance, back off and then try to get more range
• Work one side at a time
• Abduction pillow for shoulder prolonged stretch: flexion or abduction, goal for 2 hours on and 1 hour off
• Feedback Daniel can give:
• Tone difference like a deep/low moan when he's distressed
• Happy sounds(high pitched vocals) when he's enjoying it
• Daniel does not like being wrong
• He wants to make people happy
• Provide verbal details to Dan what you are going to do and how he is handling it
• Simple short instructions
• Calm voice, tone are very important to Daniel
• Avoid saying “No”, instead say “Try again” or “This way”
• Once eyes are open - Pair verbal instructions with gestures
• Dan will read your facial language - eyebrows, voice and eyes are super huge for Daniel to key off of.
• Happy soothing upbeat voices work better.
• Dan has a hard time expressing his pain level and that will lead to frustration.
• PROM to bilat LE WFL, beware of L hip dialysis port
• Do NOT untie/tie restraints, ask RN or therapist to assist
• Avoid neck flex, promote extension if possible
• Stop music when therapy is over to keep the association with Therapy Time

Day Four - Post op and rest

Since last night Dan's BP has stabilized some and he's only on one BP medicine as of mid-morning. His head is still reduced in size since it's peak size, but they say it could get large again and that it's all normal, but eventually it will go down and be its normal size and shape.

 

Dan had a bit of a rough night last night, His blood pressure dropped - a normal process due to the surgery so they have him on two 'pressers that help to control his BP. They gave him a 3rd unit of blood during the night too. There are some signs of infection - that also makes sense with all the work they did on his skin during surgery. Again it sounds like this is all "normal" for someone in his condition - I remind myself again that he's in intensive care.

During morning rounds everyone (Lead Doctor, RNs, Charges, assistants, specialists and the Resident) gathers around outside Daniel's room and discuss his condition for 10-15 minutes. They go through a lot of "medicine talk" and while Dawn and I can understand a good part of what they are saying there's a learning curve with all the acronyms they routinely use. As they discuss his case we can ask just about any question and they explain further what's going on. (Our turn to stump the Dr.)

A moment of levity in all this: During these "rounds" Dr. B who we met yesterday seems to take particular interest in pushing the residents limits of their training and knowledge of internal medicine. If you've seen Scrubs think of Dr. Cox belittling J.D. and Elliot - asking them impossible questions. He stopped short of calling the resident "Nancy", but otherwise it's THAT awkward. Of course there's no humor in all this and they all are very serious, but I think you get what I mean.

Dan's dialysis machine was getting clogged. He was producing excess something that was clotting the machine so they added calcium & citrate to the blood that enters and exits the machine to help with that. The machine can filter out the citrate and re-add calcium back to his blood while it's cleaning his blood so it all works out. Right now as I type this the dialysis machine is off until a small team can assemble including some renal department folks to address the problem with the machine. I guess what I'm saying is that the problem is with the machine, not so much Daniel.

A little more detail about his breathing. Daniel is using an airway to breathe for him. He's doing what they call "riding the vent" as it's doing all the work for him. They explained it that this is by design and letting his body deal with other stuff - I mean all the skin is burned off his chest so he's got a lot of healing to do.

An RN just brushed his teeth. I was wondering about that - and yes they take care of every inch of him including his teeth. Of course it's not a normal tooth brush, this one sucks up all the stuff since with the airway going down his throat and a feeding tube in his nose he can't really swallow.

One of my best friends Jorge will be coming by after lunch to visit us. Until then we'll just hang out and admire Daniel in his quiet sleepy state.

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Final note to today:
Daniel has been mostly quiet today. He still moves around and his legs sometimes stretch and fall off the bed some. He definitely reacted when they grabbed a sample of fluid from his lungs. That seemed to be quite upsetting to him and we helped to calm and hold him down as his body reacted somewhat violently to the necessary task.

He gets his dressings changed routinely and while he got them replaced and cleaned this evening Dawn and I sneaked off to grab dinner - brought to us by Rimas and Larry again. We've had other friends come by our house today with meals - Malena - and they walked our dogs for us.

Later this evening I noticed that the food drip he's receiving contains casein which is a substance that doesn't sit well with Daniel so we pointed it out to the nurses and nutritionist so that they could correct it. They knew he was gluten-free, but somehow they missed that he was casein free too. It's not a huge problem for what happened, but the correction will be made for Daniel.
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I want to say how truly grateful Dawn and I are for how our friends and work family are supporting us with meals, dog walks and just taking the load off us. There's so many things in "normal" life from grocery shopping to taking care of chores and pets and all that you don't realize that those things still need to happen, but we're spending all our waking hours with our son Daniel as he works through this horrible experience. Life was extremely unfair to his guy this past Wednesday - no one should have to go through what's happened to him. Doing so and all the while having autism and no ability to talk makes it that much harder. Please keep him in your prayers.

The list is long and I'll say thank you now to anyone and everyone who have taken the time to read this story, or have gone above and beyond the call to help our family get through this event. So many of you to thank - WE LOVE HOW THE COLLECTIVE COMMUNITY HAVE COME TO HELP US. SO THANK YOU!!!

Day Three - First Surgery

Dan moves around a lot - more than you'd think for someone as sedated as he is. It's good to see him moving some. I don't want to share pics of him right now. It doesn't look like him at all anyway - GIANT HEAD and all bandaged up. Poor guy.

The Precedex seems to be giving him some trouble. So they will switch him back to Versed (Midazolam) and see how things smooth out. His high blood has dropped to a very good level.

Still concerned with his kidneys and they measure the creatinine (4 times per day) along with other things to keep him safe and healthy.

So we learned from Dr. Wi (name shortened to maintain some anonymity) who will do his surgery today that this is the first of MANY surgeries - 10 or more are possible for Daniel. Today they will debride his dead skin (basically skinning him of his burned skin) - sound fun? Dan will be under a general anesthesia for this procedure thankfully. The surgery and each subsequent one can take up to 4 hours. Any longer than that and it just gets too hard for the patient.

Other news we learned today:
Daniel will likely have 10 or more surgeries for skin grafts. Some of the grafts may not take so then they'd have to do that area again.

It's not a question of if, but when he will encounter infections. The fact that he has a healthy body and is 24 years old goes a long way in his being able to recover smoothly from any infections.

It's also not a question of if, but when he will get pneumonia. Due to the long periods of inactivity and laying down and of course the extreme assault on his entire body from the burns - he will encounter pneumonia during this journey.

This entire process has been likened to a roller coaster with surprises and twists and turns all the way through. The team here is equipped to handle each and every one of these surprises as they come along.

Living with his autism for his whole life has given us some perspective to dealing with something of this magnitude. I know it will help us get through this trial, but none of this is easy. Anytime your child is ill (or extremely damaged) as in this case your heart pours out and there's a lot of feelings (the icky ones) that one has to process.

As I write this we are sitting and waiting while Daniel is doing his first surgery. My in-laws are with us today. A friendly face is always welcome. Tonight Larry and Rimas (two teachers from where I work) are bringing us dinner and some smiles here at the hospital. All of this helps at great deal. I remain positive we will get through this.
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He's out of his first surgery. It went a full 4 hours or so then lots of clean up and getting him situated back in his room. No skin grafting today. All they worked on was cleaning up his chest up to his chin and that took the entire time. There was a lot of bleeding and they needed to use two units of blood. That's about average from what we were told.

To give his kidneys some help they started him on slow extended dialysis. More tubes and machines next to him. When a patient is on this machine he has a dedicated nurse who watches his condition continuously. The machine can be somewhat persnickety and if it goes off-line the nurse has to spring to action to keep it running.
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And now his head has really come down in size and his face looks a bit more human and not basketball shaped.

We tucked him in, stroked his legs and went home.

Day Two - Settling in

Each day Daniel will get his dressings changed on his body. Twice per day on his face because the face heals that much quicker. Fun fact - they are using hospital-grade honey on some of his skin for its healing properties. They call it medi-honey.

Dan was having issues with not producing urine on the first day. That cleared up later on the first day and that's good. Not sure if his catheter was in "correctly", but they put another one in, checked it by ultrasound and all seems good now.

His kidneys are injured and that's an important thing to help with the healing. This means he may need a form of dialysis - slow dialysis that will allow his kidneys to heal properly.
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The one thing that strikes me is how supportive the staff have been. How quickly they respond (even people from other centers like urulogy) when Daniel needs something. It's still hitting me that he's in INTENSIVE CARE and what that means - the severity of his condition. When we have a question it is answered immediately or they bring the appropriate person to answer the question. I don't feel like they've ever tried to be delicate in answering us - they tell us what's happening - some of it hurts and is scary, but I'd rather that.

Another issue that's been dogging Dan is a drop in blood pressure. Could be various reasons, but we think the reason was that a switch was made from Versed (a sedative) to something called Precedex. They've tried tweaking, but on Friday morning we'll find out if they stick with Precedex.

The doctors keep saying that because Daniel is young and healthy he has that going for him. We've heard from several of the lead doctors that he will live, that it will be a long road - a roller coaster with ups and down and surprises.

The big surprise (they told us on Day One this would happen) is that his head would swell for a few days and that it would be REALLY BIG. This was normal result. Again in the morning before we saw him, they warned us that his head would be big. Well they were right. It's enormous - they weren't lying!!
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Getting fluids and nutrition in him is important - remember the "he's running a marathon every day" thing? Well I mentioned he was about 113 lbs when he came in to the ICU. Today they weighed him and his weight was 149 lbs - I suspect most of that is actually in his head - it's that BIG! (They weighed him twice). It matches the fact that his intake was 19 liters and that his outtake (pee) was not much.

Now that's he's peeing really nicely his head will begin to slowly come down to size. It will take a few days.

Friday (day three) is planned for his first surgery - to remove dead burned skin and maybe do skin grafts. That's all I got right now.

Day One - UC Health Burn Unit - Initial Status

Dan was sent to the ICU Burn Unit at UC Health Hospital. The burn occurred at 7:42am in our home. We arrived to find Daniel in the "Tub Room" with as many as eight doctors and nurses swarming around him. This is a sterile room with everyone gowned up, gloved and masked. Among them was Dr. Wagner the director of the Burn Unit and this was the first moments that the team had to begin evaluating Daniel. By this time he was heavily sedated, an airway controlling his breathing, many wires, tubes and devices and monitors were connected to him.

Next to the director was the 2nd burn doctor directly attending to Daniel at the moment. So Dr. Wagner turned to Dawn and I and gave us some information about this condition.

[I will state at this time that what I'm writing is from my perspective and may differ from someone else's point of view. So bear with me and my own interpretation of what's happening with my dear dear son Daniel].

We were informed by the doctor that Daniel had burns over 58% of his body. That he had 2nd and 3rd degree burns. That he would require skin grafts. His legs and feet are unburned. The team will use the skin from his legs as a source site for grafting skin onto other parts of his body. His fingers on his left hand are not burned for the most part. His right hand and fingers are also in pretty good shape.

We were told that as a general rule (every patient varies) but in general for every 1% of one's body that is burned equals one day in the Burn Unit ICU. We anticipate that Daniel will be in the ICU Burn Unit for 2-3 months. There will be a long recovery after that in other settings. I have no idea right now when he will return home with us.

Another thing we learned is that each day is similar to running a marathon in terms of the energy requirements that Daniel's body needs. This ultra endurance race will be going on each day, every day for the next 2 months at least.
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So eventually Daniel settled in and is in room 324 in the ICU Burn Unit.
I know I'm missing a lot of detail (and leaving off a lot of detail for various reasons).
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Daniel is in his room now. He's heavily sedated, but will occasionally open his eyes.

In the evening we learned of a burn victim recovery meeting that meets twice per month and it was tonight so we joined them. We met several victims and their families and were able to ask them questions about their recovery. Did they remember being in pain while they were in the ICU? (Nope) Do they recollect or have memories during the first few weeks? (Nope)

The meeting was good and gave us some perspective.

Burn Notice

Wednesday January 25th 2017 is the worst day ever... Read on if you wish.

Daniel was at home with his mom Dawn getting the morning started. I had just left for work. Dawn was preparing breakfast and preparing his meds just like any regular morning. My son Daniel backed up to the stove in our home and his shirt caught on fire. The stove had a frying pan on the front burner and was cooking up a sausage patty for breakfast. The nylon long sleeve shirt set ablaze and burned his upper body badly. Daniel started to moan and cry out as he started to burn. Dawn ran to him and put him out but the flames were stubborn.

The flames would not stop. She was finally able to pour water upon him to douse the flames. (That whole stop/drop&roll thing didn't work for us). Then she called me and then 911. During the process of putting out the flames Dawn burned her hands and wrist. When I arrived about 10 minutes later Daniel was already in the ambulance on a stretcher. I reached out and held his hand. He looked scared. Mom and Dan headed to Denver Health - the first and closest hospital.

Dan was intubated there out of concern for his lungs and throat. He was then quickly transferred to the ICU Burn Unit at UC Health Hospital across town. This facility is one of two burn centers in the state and the hospital is ranked among all hospitals as a top 20 hospital in the country.

Background:
Daniel is 24 years old. He has autism and is non-verbal. Before the burn he was a light 113 lbs. Yup, he's a skinny guy like his dad. I'm not THAT skinny okay, but I am thin just like my dad Tom.