Here's some words from Alisha and Josh.
Emmett is still recovering from RSV in BC Children's Hospital. We've been here since Friday, January 26 and we're all going a little stir crazy! Emmett was intubated on Tuesday, Jan.30 in order to help with his breathing. He was extubated last Monday and is doing very well all things considered. We don't have a timeline yet as to when we will be going home but we're hoping by this weekend. I want to thank all of you for your prayers and your thoughts as we have gone through this very trying time as a family. Your support has been felt. Please continue to pray for Emmett as he gets back to full strength and pray for Alisha and myself as we continue to care for him.
They have both been busy with this active little boy who is still confined to his bed. Last night he slept for several hours straight - the first he has slept well since the weekend (when they began reducing the sedation). He's busy saying Hi to everyone who comes into his room - and then cries when they leave. What a social butterfly. His lungs are sounding clear. His voice is returning. Yesterday he was breathing without any assistance for a two hour stretch and that will be expanded today. And as he continues to bounce back to health, we are looking forward to having him back at his home.
Hopefully we'll be adding some photos later today.
They extubated Emmett this afternoon (Monday) - somewhere around 1 p.m. - and he's breathing on his own. Alisha indicated that his oxygen levels never even fluttered when the tube was removed. He was so frustrated with that tube! He is on his bi-pap machine and the full face mask. Bi-pap is normal - the Buzz Lightyear mask is a step beyond his usual elephant trunk nose mask - it will stay in place until the secretions in his lungs are cleared.
As he is not being sedated we are really seeing his personality. In fact, look at the photo and you'll see that both of his hands are raised. He's getting tired of staying in bed. You'll also realize that he is no longer being restrained. That may be gone but he is still frustrated and miserable. We knew it would happen. We knew that Emmett was going to be miserable. What else could you expect? When you take a bunch of drugs out of the equation and start bringing a little boy from his sedated slumber back into the world of awareness then you get a miserable little guy. That's sort of good, I guess, because that's part of the process of getting well. Coming out of the eye of the storm does mean some really rough patches. But oh my goodness - it's not nice for Emmett. He is not sleeping well and that means that last night Alisha and Josh did not sleep well. The aches and pains of his illness combined with the aches and pains caused by the medical intervention mean that he literally aches all over. Over the past ten day's Emmett has been poked and prodded more times than we can count. He is letting his mommy and daddy know that his tummy hurts. His head hurts. He doesn't like the tube down his throat hurt. And he wants to roll over when he wants - not just when the nurses allow. But right now there is not much that his mommy and daddy can do! They cannot even pick him up yet. Just comfort him from the side of his bed - and they're right there.
When he saw his new Daniel Tiger balloon he laughed. At least, he tried to laugh. At that point the tube was still in place. When it first came out, he couldn't do anything but grunt. No words. Now it's "Up! Up! Up!" and "Back! Back! Back! Please!". This will be followed quite quickly by "Side. Side. Side!". He still wants to roll over lots - but that's not easily allowed. He pats the mattress on the side that he wants to roll to ... but nothing happens. He actually stopped patting and grabbed his other arm and tried to pull himself over! You ache with sadness wanting to turn him but can't as he still has IV's and such attached to him. His medical team has a plan and that includes being rolled. And your heart bursts with pride at the fight that this little boy exhibits. Are we finished with this RSV storm? Not yet, but without complications it certainly seems like we're almost through the storm.
Now the question is, how do you occupy and amuse a little boy who is in isolation and cannot leave his bed?
And those great ideas took all of 20 minutes. What's next! Alisha and Josh are going to be busier than ever!
Emmett's battle with RSV is running the course. It is a long course. But he is winning. His lungs are clearer. The secretions in his lungs are becoming watery. Early on in this battle the secretions were sticky, thick pasty stuff. Quite nasty. That change in secretion is a very good thing and shows Emmett is getting there. This virus, RSV, has nothing to do with Spinal Muscular Atrophy. This virus attacks indiscriminately. SMA is a genetic disease. It affects one in 10 000 births. With this rare genetic disease, one person in fifty is likely a carrier. Doesn't sound so rare, does it! When two carriers have a child the odds are 1 in 4 for a birth with nothing related to SMA, 2 of 4 will be carriers, and 1 of the 4 will have SMA. Definitions of SMA discuss how the loss of motor neurons cause progressive muscle loss - with arm, leg, torso and respiratory muscles affected first. Seriously, what kind disease affects respiratory muscles as it's first line of attack. What a cruel, breathtaking disease this Spinal Muscular Atrophy is! Then consider that RSV is challenging for a kid with a normal respiratory system and, at it's worst, will mean a lengthy hospital stay - then you'll understand the challenge it means for a medically fragile child like Emmett.
Well, time to get off of my soap box. Emmett is fighting strongly. Can I say fighting strongly? Friday morning the medical team made the decision that the weekend would be one of ongoing calm and stability for Emmett. Thus we anticipate that he will continue throughout the weekend with the ventilator with extubation now likely happening on early next week. Frequent chest physio to ensure that his lungs clear up.
Unless the medical team surprises us. They have surprised us before and certainly will again. The ventilator settings are still encouraging Emmett to breathe on his own - he initiates and the machine then supports him. Sedation levels allow him to slip into a semi-conscious state from time to time.
While he is semi-alert in addition to chats, stories, and light rubs/tickles - Emmett gets a bit of Daniel Tiger's Neighbourhood or his long time favourite, Paw Patrol. Which makes me wonder, what kind of flashbacks is he going to get in the future about him memories in this semi-sedated state about puppies controlling the universe! Of course, this makes me laugh. Paw Patrol is already such a weird show - I've already discussed that so won't go into it here - but watching it through a two year olds eyes whose usually incredibly sharp mind has been altered by drugs ... it must be absolutely bizarre. Thank goodness for Daniel Tiger! Nothing like a dose of reality as a tiger humanely and compassionately leads you through life!
While on the topic of flashbacks, I have to confess to plagiarism. The other day I told you to read the Velveteen Rabbit. That was not new. Some time in the history of Emmett's Journey I directed you to do the same thing. How could I subject you to the same thought over again. Sorry about that.
There probably won't be a blog post tomorrow. Probably.
Yesterday we read Emmett the Velveteen Rabbit. Emmett's bunny, who was a gift from his Aunt Jennie when he was just a baby, was in Emmett's arms. Emmett's bunny has become lumpy, his nose colour faded, his fur has lost it's sheen. But my oh my is that bunny loved, as you can see in the photo above. If you haven't read the Velveteen Rabbit in a while, sit down and read it out loud (preferably to a child. And it should be a child that you know or at least one whose parents give you permission to read to. And if you're in a book store and reading it out loud, you may be asked to leave - and you'll probably have to buy the book). But I digress quite a bit. Read it out loud. We've lost count of how many times it has been read to Emmett in the last few days. And I'm pretty sure that this book is absolutely a 'real' book in Emmett's eyes. And there is absolutely no doubt that this bunny is real. BTW, that wrist band is one of the arm restaints.
Emmett's heart rate was almost slowed to normal levels yesterday evening. What a relief to everyone. He is still sedated but every once in a while his eyes would open. He was alert and aware. He would squeeze fingers. Tightly. He cannot talk as when he was intubated tubes for breathing were inserted down his throat. But he can communicate. Show him two toys and give him a choice then you'll get a finger squeeze to show which one he wants. He is such a fighter. As soon as he was intubated the plans were being made for extubation. Removing the endotracheal tube. Initially the machine was fully breathing for Emmett. By yesterday the machine had already been reduced to where it responded to Emmett. When he initiated a breath then it would support him. In and out. Emmett in control. They've reduced other things to. Preparing Emmett. Because possibly Saturday or Sunday, or maybe a bit later, they are going to extubate him. And that is good news and what we want.
It also means that Emmett will be leaving the eye of the storm. Here it has been relatively calm and peaceful. There have certainly been concerns and issues, but in the overall picture it has been calm. But moving out of that means that Emmett will be into some tough going. Obviously, he's got to take over breathing. This should go fine. It will go fine. But there is always an element of risk.
We know we will have the best outcome. Yet Emmett is still going to have a challenging time just ahead. Not to mention a terribly sore throat. As he's more fully aware and less sedated, he's going to feel every ache and pain in his body. And he has been through a pummelling that would cause most grown men to whimper. As we enter the other side of the storm we are optimistic. We are there for Emmett. And thank you for being there for Emmett also! And we're looking forward to hearing Emmett laugh when he starts to talk and, upon hearing his probably hoarse voice, laughing at himself. Because that is what our Emmett will do!