Viral Update 5

We had a pretty chill day today.  We were able to wean the peep down to 7 and he's been on 28% oxygen most of the day (room air is 21% that's our goal). Dr. Daftary, Riley's Pulmonologist, came by this afternoon and gave him 'recommendations' which it sounds like they are going to follow.  In rounds this morning we decided to try to wean the peep by one every 12 hours. Dr. Daftary advised that we hold off on weaning any more given his past admissions that when we get all excited and start weaning everything he crashes and we have to start all over.  So we are holding off and going to try again tomorrow.  He also doesn't want to create more lung collapse by weaning things too fast.  He also wants us to stop the Robinul ( that's the medicine he takes that thickens his saliva so he can swallow it better) for now so he doesn't start mucus plugging. So we are going to hold that drug for now.  They stopped all the antibiotics except for one that is more specifically targeting the MSSA pneumonia he has. They don't want to keep him on too many antibiotics because they run the risk of the bacteria becoming resistant. We also weaned down his sedation a little bit today to see if he would wake up a little more and breath more on his own. He seemed to do quite well so we will probably wean a little more tomorrow.  It's just a fine balance because we don't want to leave Riley on the vent too long because he can decondition so quickly and the longer he stays on the longer it's going to take to get him off.  On the other hand we can't wean him too quickly because he hasn't been tolerating it in the prior couple of days.  We've only had two set backs today. First was with physical therapy.  They came and evaluated him on Tuesday and then no one has seen them since.  Our nurse called them multiple times on Wednesday and they said they would be up to check on him Thursday.  Thursday comes and our nurse called and left multiple messages with no response.  She finally talked to someone who told her that the therapist who is going to be following him didn't feel that he needed more than twice a week and she went home sick and won't be back until Monday.  Our nurse about had it and told them that wasn't acceptable and they better have someone up here on Friday! So this therapist comes in today and told me that because he was intubated and wasn't able to participate much that he didn't need to be seen more than 2 days a week and that I was being unrealistic with his therapy goals.  Where do these people get off! It's just going to be harder to rehab him if we don't keep on top of it. We'll see what happens on Monday when they come back, if they come back! The second set back is that the Attending Physician that I HATE is on tonight. He's one of the reasons we had such a horrible experience when we were up here last April.  Riley had been on bipap 24/7 for about 3 days and he still was not awake and alert and he told me that this isn't 1950's medicine anymore and that we just don't allow people to lay in bed all day and that he needs to get off his bipap and sit up in a chair! The pulmonologist had to come up and put him in his place and tell him to back off.  I HATE this guy he's such a jerk! So tonight he pops his head in and makes his usual smart ass comments and leaves.  Pray nothing happens tonight so we don't have to deal with him.
On a happier note we had two fun visitors today. Aunt Louise and Aunt Carly.  Aunt Louise is Marc's Dad's sister and she is such a sweet lady.  It was cute because Riley was trying so hard to open his eyes to look at her.  Then when she would comment that he had his eyes open he would shut them real tight. Aunt Carly is my dear friend that takes all those adorable pictures of Riley.  She took some pictures while she was up here to document the experience. She said she would post them up soon.
Cross your fingers for another quite night and we'll see you tomorrow.


Viral Update 4

Today has been a better day than yesterday.  He had one tiny desaturation episode when they tried to wean his peep from 10 to 8 so they had to go back up.  A few hours ago they weaned it to 9 along with weaning the oxygen down to 35% so far so good.  Today his xray showed some multi focal pneumonia with some right lower lobe consolidation. Yesterday they sent some blood and sputum cultures and the blood so far is negative but the sputum came back as being positive for MSSA (methicilin-sensitive staphylococcus aureus) a bacterial infection that only has a few number of antibiotics they can treat it with. They put him on two broad spectrum antibiotics until the cultures came back. They stopped one of them and traded it for a new one but are continuing with one of the originals. He will probably finish a 10 day course of one them.  He also has been trying to open his eyes a little and look around. It's still difficult with all the sedation medicine but at least he's trying. Hopefully in the next couple days we can start weaning him off it and get that tube out!
Grandma Jenny and Uncle Brock made a special delivery today.  All the cousins where hard at work on this fun poster.  Thanks guys Riley will love looking at when he finally wakes up :)

I'm going to go cuddle up in my nice ICU reclining chair (hint of sarcasm) while Riley cuddles up for the night with Elmo. Here's for another better day tomorrow.


Viral Update 3

We needed a little brightening up in the room today.  These are the cute get to know you posters that child life makes.  If you look really closely you can get a glimpse of Riley's favorite music...yes it does say Britney Spears. He loves my Glee cd especially the Britney Spears mash up they did.  Ok so let's get down to the latest news.  He had a hard night with some increased oxygen needs and irritability.  They had to give him a few extra doses of Ativan to keep him comfortable. I don't know what I was thinking but I thought I could attempt to work a shift last night. I was kind of a nervous wreck all night so it probably wasn't a good idea. I came right up here after work and I walked in to Riley's oxygen saturations in the 70's! They bumped his peep up to 10 and cranked the oxygen to 100 and grabbed the cough assist.  He was able to cough up a good amount of goo so we think he just mucus plugged.  Even though we were able to get it out we are still on quite a bit of oxygen.  They got a chest xray and he's started to get some collapse on his right side.  Hopefully with some extra cough assist treatments and the increased peep we can pop stuff back open.  He spiked another fever so they sent more blood cultures and a sputum culture along with starting him on some antibiotics.  The other concerning thing is that his platelet count is quite a bit lower than it usually is. This could be due to his valproic acid that he takes as part of a study drug he's been on since he was first diagnosed.  He's never had a problem with it before so they are drawing a valproic acid level and contacting the neurology team to get their input.  So as a recap more oxygen, more peep and more antibiotics.  We'll see what the rest of the day brings.


Viral Update 2

Yesterday was kind of an up and down day.  He started waking up and biting on the tube so they had to start a sedation drip to keep him comfortable.  What I think is so funny is that they talk to him and tell him "Riley don't bite on the tube, that's how you breath if you bite down you can't breath." All he knows is that if he opens his mouth they're going to suction and I HATE that so nope not going to do it! They were able to wean down his respiratory rate and some pressure support levels on the vent. They went up and down on his oxygen and last night they actually got it down to 25% (21% is room air) but this morning it's back up to 35%. Dr. Swoboda came by this morning to check on him and she gave us some guidelines to pleasantly remind them of.  The one thing she discussed with us is his degree of scoliosis. She worried that it's possibly starting to collapse us upper lobes of his lung and she wants us to consider getting his back fixed.  She called Riley the 'new' kind of type 1 and that we need to be proactive so he can continue to have as good a quality of life as he's had. So that's something we'll need to discuss with the orthopedic the next time we go.
Ok so this next picture is not for a weak stomach but I had to post it. This is everything they've suctioned out of his lungs so far
Gross right!?! All I can say is the intubation was greatly needed.
So we will see what today brings and I will keep the updates coming. Thanks everyone for you thoughts and prayers. We are blessed with such great family and friends.


Viral Update

Here we are again at our home away from home the PICU.  Marc brought Riley up to the ER on Saturday night after he spiked a high temp and was struggling on his bipap.  They admitted him to the floor because he was still pretty stable at that point.  By now I should no better that the stable part only lasts so long.  They did a respiratory viral panel which came back positive for Human Metapneumovirus. It's a really nasty bug that can cause severe bronchialitis (inflammation of the small airways). They are seeing a particularly bad strain this year that is landing other wise healthy kids on ventilators.  This is not too promising for Riley.  He had a pretty hard night and early this morning we removed his bipap to suction and with in seconds his oxygen saturation dropped into the 70's and it required 11L oxygen into his bipap along with some cough therapy to get him up into the mid 80's. Finally after an hour his saturations were back into the 90's.  After that episode they decided to transfer him to the PICU.  Marc and I went home for a quick nap and a much needed shower. At 2:00 I called to see how he was doing and the nurse passed me off to the Doctor (never a good sign). She said that he had 2 pretty significant desaturations during his last treatment that required some bagging to get his saturations to come back up.  Here's where the frustration happens.  There are two ways to suction out the secretions 1 down his nose or 2 down his mouth.  Riley will not open his mouth for anything so the only other option is down his nose.  He's usually pretty difficult to get down his nose anyway but with this illness his nose is so inflamed that just can't get a suction catheter down his nose.  So no matter how much we were coughing him he can't cough it up enough for us to suction it out.  He was beginning to struggle and required some major increases in his bipap settings to the point where I called Abby, our SMA nurse, to get her opinion on what the proper course of action should be.  She said that it was time to consider intubation.  She called the PICU Attending and spoke with her and just gave her input.  Of course you always want to try avoid intubation but it was just not looking this way.  Well, the Doctor tried all this other stuff with his bipap to try to decrease his work of breathing.  That's all great but the problem was we had no way of clearing the secretions.  After dragging their feet for the next 4 hours they decided to finally just intubate.
So here we are tube and all.  The poor kid is just so worn out he really needed this.  After they got the tube in they were able to suction a large amount of secretions.  They just did a cough assist treatment with him and got a ton of thick yellow secretions.  Now he's spiking high temps again and they are concerned he might be growing another bug down in his lungs.  They sent a sample of his lung junk to see if it grows anything.  Now we just wait and let the illness take its course. The hard part is that this is just day two! This thing can last a while. I'm sure we won't be leaving this place any time soon.