Out for a roll on the Boardwalk!
This has been quite a month for little Emmett. Of course, you're very aware of his lengthy stay in ICU as he overcame a cold. It was hard on him but he was really a happy little camper throughout the ordeal. But that all changed just a day or two after he was released. He came down with an infection that was not easily identified and he was simply miserable. He didn't want to be touched, picked up, or held! While the last blog post shows him in his wheelchair, he really hasn't been in it much since then. It literally seemed like he was crying and moaning all of the time. This little boy whose normally brilliant smile is everywhere was miserable and simply had trouble smiling. His sleep was disrupted. Everyone's sleep was disrupted. Finally, after a couple of doctor visits, Emmett got on an antibiotic for what Emmett could now describe by pointing to his ear as a very sore ear. He had a bad ear infection. And just now, at the end of September, is he finally bouncing back.
The ongoing challenge is that Emmett has really lost a lot of strength over this past month. Even as he is bouncing back there are obvious concerning factors. He does not like sitting up right now. This was a huge milestone that he had attained and we know it will come back, but right now sitting up is obviously very uncomfortable for him. He is still bringing his knees up, raising his arms, and rolling to his side. Obviously, we are concerned when we see anything that seems to be holding him back.
The good thing is that Emmett is smiling again. And talking. Unless his cousin Henry is nearby. Or if he's on FaceTime with his Uncle Josh. Or meeting with his speech pathologist. Or virtually any guest/stranger. Then Emmett's eyes become fixated upon someone that he knows and he clams up. Once they leave, however, then a stream of two year old language lets loose! I can understand not talking with Henry, because baby Henry is going to be laying claim to Emmett's toys so he is already showing dominance by being aloof. And Uncle Josh does have an American/Australian accent which is confusing. Why he won't talk to his speech therapist when he loves to chat with his nurses and doctors - mystifying.
If you were wondering, the Buzz Lightyear and Woody the Cowboy phase is still going strong. Emmett has claimed my Buzz Lightyear and, gracious grandpa that I am, I have loaned Buzz to Emmett. On condition that I get to play with him (Buzz Lightyear) when I come and visit. Fortunately, Emmett has his own Woody the Cowboy so I can keep mine. The thing is, my Woody the Cowboy talks and Emmett's doesn't. I'm wondering if the writing is on the wall ...
There is a lot of anticipation about Emmett trying out the MegaSeat wheelchair that we built for him. Unfortunately Emmett is not ready to use it. He has to be comfortable sitting with limited support before he can use this homemade device. So right now it looks cute and Winnie the Pooh has claimed it as his spot! But whenever Emmett is ready for it, we'll give it a go. Several of the photos included have Mill Lake in the background. We had a lovely stroll and roll with Emmett the other evening. He loved seeing the water, the ducks, and the geese. He's relatively comfortable in his electric wheelchair now - because it has significant back support and, if required, head and neck support also.
This weekend he'll be heading to Camp Squeah with his parents and us for Level Ground Mennonite Church's fall retreat. The weather forecast is not the most promising, so we will let you know about our weekend retreat soon. Until then, Emmett's going to be rolling along. But a little bit slower for the immediate future.
If you're curious about the DIY Wheelchair click this link, then there are more details and a parts list on MotoIQ.com - great to see an online automotive publication take an interest in a project like this. I'm glad to be associated with them.
After 9 days in the hospital, Emmett is home. The last day and a half Emmett was really getting fussy and irritated - showing that his health had returned and that he was ready to go home.
He has really missed 'vroom vroom vroom', which is what he calls his wheelchair. Today (Tuesday) was the first day that he got to go wheeling around in it. He still needs to use his Bi-Pap and he has to be carefully watched, but he is better and he is home. Thank you so much for all of your prayers and best wishes and support. Alisha and Josh and Emmett really thank you for your support.
Emmett is improving! He will be in the hospital in ICU for a few more days, but as you can see in the photo the full face mask has been replaced with an elephant nose mask. This means that his expressions and vocalizations will be much clearer. It also means that his lungs are not as stressed as they were before. This little mask makes it much easier on Emmett. You can also see that Buzz and Woody, along with Emmett's faithful bunny, are there helping Emmett along. His lungs are gradually making less and less sound as they are clearing up. His oxygen levels are improving and his heart rate is slowing back down.
Your prayers and warm wishes have been so gratefully appreciated. And are still needed. Alisha and Josh are exhausted. We need Emmett to get all better so that he can return home!
To Infinity and Beyond!
Emmett has a cold. Alisha knew that something was starting mid-week but it was just a slight fever. Saturday he was a miserable little boy. Sunday he seemed to be bouncing back but late Sunday night he took a turn for the worse. There was no question that he had a cold. One that caused him to have a bit of a frog in his throat which, honestly, made him that much more adorable. But late Sunday night there was nothing adorable but only the urgency to get him into medical care. The van was packed and Emmett was on his way to Vancouver and B.C.'s Children's Hospital. The advantage of travelling in the middle of the night on a long weekend was that the normally always busy highway 1 was almost empty so no traffic issues at all.
The Emergency Department was a bit more populated but still not bad. Emmett was immediately in a room and being checked out. He was upset when they checked his blood pressure and took his temperature. He doesn't like the blood pressure cuff. Or the thermometer which has to be held under his arm pit for a few seconds before it registers. He did, however, love seeing the hospital staff. It was not too long before they determined that he did have something in his lungs and he was admitted to the ICU.
A slight cold. ICU! We have said before that a cold can be incredibly threatening for a little one with SMA. Emmett hasn't been rushed to the hospital since this past November. We've been lucky but there is no question that he needs to be there now. Obviously, his sleep patterns have been drastically disrupted. Into an isolation room at ICU where his nurse is literally right outside his window. He'd just fallen asleep again when a respiratory technician came to check him out. Almost instantly made the move from Emmett's little elephant nose bi-pap mask to a full face mask that was obviously connected to hospital equipment. This woke Emmett up and not only was he grumpy but he began fighting the mask. This was looking like it was going to be a long night! Then we looked into Emmett's eyes and told him it was a Buzz Lightyear helmet. Almost instantly he stopped fighting the mask. You see, for the past two weeks Emmett has been on a Buzz Lightyear kick. He has been watching the movies on every car trip. The stories have had to be read to him over and over. His favourite word right now is "Buzz"! Emmett realized that this mask was indeed like Buzz Lightyear and, at 4:30 in the morning with a look of recognition in his eyes, he stopped fighting and shortly fell back asleep. And without much fuss he has been wearing the mask ever since. Hmmmm. Was that a lie or merely misdirection?
Emmett has a chest infection. They are not saying pneumonia because that is a specific type of chest infection. His lungs are full and that is a serious concern. But he is stable right now and throughout this past night has been having RT's doing deep suction of his lungs every three hours. And they have been getting a lot of secretions out! For the medically bright folks reading, his regular bi-pap settings are still being used and he is not getting additional oxygen. He's just getting normal atmospheric air. He is showing strength and fighting this. For all of the rest of us, this is a sign that he is a strong little boy and fighting this the way that he should be doing. And that mom made a timely call to get to the hospital.
Emmett 'Buzz Lightyear' learned how to make elephant sounds with his mask. He started doing this mid-day yesterday and Alisha wondered what was wrong. Nothing, actually, except that the mask was a little loose and Emmett had figured out that he could make these elephant sounds so was purposely expelling more air in quick succession to sound like a very noisy elephant. His little tummy inflating and deflating in quick succession. If you were there you would have laughed with us, because he was having fun and loved being an elephant. That was somewhat short lived as his mask was adjusted so that he couldn't force the air past the mask seal and his forehead anymore.
He will be in ICU for a couple of more days. While the deep suctioning makes him quite mad, he is doing okay. He is placing orders and making requests. For example, through the window into the next child's room he saw they were watching TV. While it took the adults a while to figure out what he was pointing at, it was eventually quite clear than Emmett was not pointing at the child in the next room (there are large windows between the rooms) but their active TV and his inactive TV. We got the nurses to turn it on and then went through a range of channels. He very clearly was saying no, no, no as we flipped through the channels until we arrived at an obviously child's show. And then he was content.
Alisha is beyond exhausted as she hasn't been getting much sleep. Josh is not too far behind. Emmett's sleep patterns are very disrupted. These are things that we would appreciate you praying for. And especially pray that his lungs clear quickly. A cold and chest infection during B.C.'s hottest summer on record - we want this cold gone very quickly.
So Emmett is stable. Every once in a while he raises his arm with his index finger pointed upwards. We fill in the words for him - "To Infinity and Beyond" and then Emmett 'Buzz Lightyear' puts his arm back down. If you know Toy Story then you will know and realize that he is in character as Buzz! Get well quickly, Buzz, as we want to see you back home!