We are in the Regular Pedi Unit

Quick note, we were moved out PICU this afternoon to a regular pedi room.  Tyler thought he was being wheeled to surgery and kinda had a tense late afternoon.  But he is resting comfortable and we shouldn't be disturb too much tonight. 

Going down (In a good way)

The night before last Tyler hit a high Oxygen requirement of 100% @ 30L/min. (Imagine an 8 Gallon trash bag per minute.) The flow is so high because he is using a mask and it does not fit so well. We tried a nasal canula twice yesterday, thinking it would be easier to eat and talk. Tyler was NOT impressed. He screamed more than he did for the IV, not yet sure what the issue is there.

Sunday morning his O2 was at about %60, I woke up this morning and he was at %25! The mask wasn't even on his face! He spent most of the night with the mask on his chin. At the moment we are back up at about 30% so he can eat. And oh man is he eating. So far today we've had 6 oz. of OJ, Cheerios, SpecialK, Cereal bar. He is eating so well we actually ordered lunch for him!

Morning rounds just came through, Lots of changes in the works for today. We're going to try him without supplemental oxygen. The IV has been disconnected, the catheter is still in but no fluid running, hopefully this will make him thirsty. And he's been given clearance to walk around his room. At the moment he's standing with mom's help. If we can keep him off the oxygen or make do on low-flow we might move up to PEDI today or tomorrow.

Tyler feeding his Monkey some cereal. Just after I stopped recording this he asked for an old oxygen mask for Monkey, once it was on Monkey he pulled his oxygen hose and tried to hook Monkey up.

Quiet Afternoon

Watching Winnie the Pooh.

Tyler is really looking better today.  He's been on Tylenol and Motrin all day.  He just looks so much better.  He's eaten some Cheerios, Special k, and 1/2 a banana with quite a bit of juice.  He has more energy and will tolerate sitting up longer.  He still is bed bound mainly because he still isn't strong enough to get out of bed other than to be held.  After a while he asks to lay back down and usually sleeps or is content watching a movie.  We've read a lot of stories to him and he's watched a lot of Thomas the Tank Engine.  Right now his oxygen requirement is the lowest it's been since this started.  I don't think they will push much farther down over night just so he can rest well.  But right now his equipment is suppling 40% oxygen and his oxygen level is 99%.  The doctors did look into his ears, one was perfect and one is red irritated looking but not infected.  So we still don't need an antibiotic which is fine with me.

Midnight, yuck.

Tyler was great the first part of the night.  Oxygen levels were beautiful and required only 55% oxygen.  He was comfortably sleeping and he just looked great.  At midnight he started to grunt every few breaths again and his oxygen requirements started to SUCK.  At the height of it, he was at 100% oxygen and still desatting.  We finally had to threaten C-pap nasal cannula and administering Tylenol in places best not mentioned.  After an hour of chest PT (they use a soft bubbled lined face mask and pound really hard all over his back and chest to loosen up all the RSV gunk so he can cough it up), finally getting the Tylenol in by mouth and repositioning him so he couldn't curl up on his side he finally settled down and the rest of us could start breathing again.  He moaned here and there for a few hours but they have been able to pull his oxygen back down to 70%.

The current theory is Tyler is in some pain. You know that kind of pain you have after coughing for 2 or 3 days, muscles you never knew you owned make your chest tight and painful.  When he starts to grunt, we think the pain is significant and it's affecting his oxygen.  So the plan today is to keep him going on Tylenol and try to keep him comfortable and resting all day.  Why Tylenol and not Motrin?  He has no food in his stomach to protect against the Motrin.  I've also asked them to check his ears just to rule out an ear infection or pain.  He's never really had an ear infection before and with all this gunk and re-hydration it sounds like a good thing to rule out since he's also getting a fever while doing this. 

He's napping and I'm going to lay down again.

I want Puffs!

It's Empty!

Tyler had a quiet night.  We've also had a quiet morning too.  He's watching Tv right now a little annoyed with us because we won't give him some puffs or cereal.  He actually asked for some puffs.  So he feels better enough to realize he's hungry.  He hasn't eaten a snack never mind a meal since Sunday or Monday.  So everyone is very happy to see him asking for food.  Unfortunately, he needs to start drinking before we can give him food.

Here is the conversation we had with Tyler this morning:

"I want puffs"
"Sorry Tyler you need to start drinking first"
"I want a spoon"
"Ok"
"I want a bowl"
"Let me see what I can find, you going to make spaghetti?"
I give him a cup. He puts the spoon in and tries to scoops something out. 
"It EMPTY!!!! I want puffs!"

So I think he's starting to feel a little better.  He looks better to me any way you look at it.  Today he's even able to sit upright mostly by himself for a few moments while we change his pillow case.  He still needs his oxygen and still sounding like he has a lot of junk in his chest, but at least he looks like he's getting some strength back. 

A Ranting Tangent.

I would like to take the time to Thank the person/s responsible for developing the criteria to decide how Synagis is distributed.  Synagis is the once a month shot that Tyler received November to March for the first two winters to protect against RSV.  Synagis is not a vaccine but an antibody that helps a child's immune system respond to RSV faster and more effectively to keep the child from getting dangerously sick.  It is a very expensive drug and not distributed to children who are healthy and strong.  Most kiddos can fight the virus and just look like they have a really nasty cold.

The children who qualify for Synagis are under the age of two at the start of the season and have  documented treatment for Chronic Lung Diseases with in the last 6 months.  These kiddos are usually preemies or have cardiac and/or lung problems that diminish their abilities to breath like a normal kid.  The reasons they are given Synagis is to prevent further damage to their abilities to breath normally and to prevent more scar tissue from forming in their lungs.  The shot gives them a better chance of fighting RSV effectively. 
A list of requirements to recieve Synagis

Most kiddos have RSV at least once before the age of 3.  (You can suffer from this virus multiple times in you lifetime, usually with decreased severity.)  Note the two bold printed numbers.  This virus affects the lower respiratory systems; the lungs and cardiovascular.  It can produce high volumes of secretions in the lungs (fluid) which makes it harder to breath.  This increases the heart rate, breath rate, and reduces the oxygen saturation.  For kiddos who can not cough and move the junk up and out, this can lead to secondary infections including pneumonia.  This virus can be active for over 8 days and can greatly vary in each person with this contagious aspect (we are talking a few days to a few weeks for someone to be actively contagious).  It's a long cycle from starting to be sick, very sick, and starting to heal process.  Kiddos with lung disease have to work harder and can quickly require medical treatment.  The treatment is purely treating the symptoms.  Synagis will not work while a child is infected.  There is no true vaccine for it and no antiviral that helps once you have it.  This virus will run it's course it's way.  Oxygen is given to the sick child and in our case Tyler responds to the Albuteral treatments and steroids.  Other than that, wait it out.  Not a fun virus.

With that all said here is my gripe.
I have a child with a documented case of Chronic Lung Disease and is on a steroid and  bronchodilator (not regularly anymore, but requires them often for colds and bugs), but he's now over the age of 3.  He did not qualify this season for Synagis.  He now has RSV and is on a ton of oxygen and will have a long recovery even beyond his hospital stay.  He has already spent more time in the PICU for this than any of his surgery visits.  He is so sick that he hadn't had the energy to want to be held since being admitted until this afternoon.

I do not think all children should have Synagis, that would only make RSV a more powerful virus.  I do not believe all children with chronic lung disease will require it for a life time.  Again that would make RSV more powerful and put boundaries on that child's ability to grow and heal from the lung disease.  A lot of lung disease will eventually heal.  What I don't agree with is a strict cut off of 2 years of age.  There are some kids that would most definitely benefit from another season or two of Synagis.  Instead of leaving them expose to RSV which can infect an at risk kiddos and cause set backs in their healing process, evaluate on an individual level from the ages 3 to 5 the pro's and con's of continuing this preventive treatment.  As horrible as it is to say, I hope this hospital visit costs the insurance company more money to treat RSV than it would have to give Tyler the shots.

So again Thank You! criteria developer/s.

Peaceful Night

Another quiet night.  Tyler slept well and quietly last night.  We just had his labs taken and an attempt at a new IV just because the other one is possibly starting to look a little puffy.  The thought process was if we can get a new IV in during labs cool if not ok no need to stick him more until we have to.  So now we are quietly watching a little PBS to pass some time.  Over the night we were able to reduce his oxygen requirements from 85% oxygen to 55%.  Room air has 21% oxygen, so we still have a ways to go.  He will not be allowed to eat until he comes off the high flow oxygen he's currently on.  Reason being is the oxygen is being shoved into his face at 30 liters per second.  So he can feel a good bit of "wind" under his mask.  If he eats and then coughs with food/water in his mouth or wind pipe, the food/water with get pushed into his lungs and create problems.  I don't have many picture only because he's been sleeping so much any picture is going to look like the one posted yesterday.  If he looks better later when the light is better I'll post one up.  And it's snowing up here. 

What comfy looks like.

One sick little boy.  This is what comfy looks like right now.  He sleeping peacefully and is breathing rather easily.  Rounds this morning were positive in nature.  Everyone was happy to see how stable he's become over the last 6 or so hours.  The plan is to keep addressing his respiratory needs while trying to bring down his oxygen requirements.  He's still not allowed to eat or drink but he can have a bit of water or melted popicle on a sponge to suck at when requested.

Long but quiet night.

It was my turn to sit with Tyler in his room through the night. Thankfully it was pretty quiet. Only a few alarms and most were self inflicted (Tyler pulling his mask off). He is not critical but still a sick little pup. At the moment he's needing 70% oxygen and Albuterol every other hour to keep his oxygen levels in place. He's had a few small coughing fits which should be a sign of what's to come. Now that he is on fluids the gunk in his lungs will start to loosen up and start to move around. Hopefully we can keep it moving and prevent Pneumonia.

Currently we're about 1 day into a 2-4 day run with the main body of RSV. They have told us in no uncertain terms that his respiratory condition will likely get worse before it gets better. We are in the days to weeks to discharge range, it all depends on which way Tyler goes.

What is RSV?

Click here to read more about what RSV is.


Some more info

RSV Baby, RSV

Well we did our best to prevent this dreaded virus for over 2 1/2 years now. Unfortunately it wound up in our house over a week ago. We now believe that the illness we have been fighting for the past week is indeed RSV in both kids. Rachel, as sick as she has been, has been able to over come the cycle and is recovering as if it was just a horrible cold. Getting down to brass tacks, that is what RSV is really, a very bad cold. Anyone can get it at any time in their life. Tyler on the other hand, clearly wasn't strong enough to fight this.

Tyler has been sick since Thursday. Up until Monday it was just a very bad cold with a fever and some unpleasant fluid grossness. Monday he woke up having some visible respiratory trouble. For the first time in a year we wished we had that dreaded pulse ox machine. We got him into the pedi that afternoon. At that time the examine did not show any bactericidal infections or smoking gun pneumonia. So we were sent home with a steroid to help his lung function and instructions to give him Albuteral and watch. We were to call if he gets worse or does not have any improvement by Wed morning. By Tuesday afternoon it was apparent that he was worse and he stopped eating and drinking. The nebs were no longer completely easing his breathing.

So back to pedi where he was diagnosed with pneumonia and promptly sent to our local ER for IV fluids, antibiotics, and chest x-ray. Upon arrival to the ER, we did the x-ray and nebbed him and started oxygen. The x-ray did show some areas of interest but no smoking gun "this is most definitely pneumonia". At that point they started to try to get the IV in and some labs. 3 tries by the ER people produced a very angry pin cushion, but labs where drawn. Pedi people came for 2 more tries and still no IV. Labs came back with a near normal white blood cell count indicating that he does not have a bacterial infection at this point. So back to viral, let's test for RSV. Positive. Admitted and brought to pedi. Where they tried 4 more times to get an IV in him. No dice, he needs fluids, transferred to DHMC Lebanon at 230am.

Things get slightly blurry here. I'm a little out of practice for those long all nighters. He rested quietly on the way to Lebanon. It took 2 more tries for that IV. So a total of 11 sticks for 1 stinking IV. This is our record. But he's been getting fluids now over 12 hours. Here is the catch 22. He needs the fluids to combat dehydration and to help regulate his temp and all those "I need water for my body to work correctly" things. Because he was so dry, his respiratory situation was very understated. As he has become hydrated today we've seen his dependence on the oxygen and Albuteral rise and his breathing become nosier and having to work harder. This is the reason they told us to expect Tyler to get worse before he gets better. The RSV has a few more days to run it's furry before it starts to ebb away and with the fluids he needs from the IV his lungs will have more junk in them.

So we take this moment by moment. Let Tyler rest when he's sleeping, and support him when he needs the extra help. Right now he has a high fever and is covered in cold compresses satting beautifully with his oxygen, enjoying his Albuteral hits, all while watching his favorite movie "Cars". Always anxiously waiting for the infamous tractor tipping scene. As far as the next couple of hours, we just keep doing what we are doing now.