One Big Victory In A Long Journey | Daily/Weekly Thoughts
Daily/Weekly Thoughts

One Big Victory In A Long Journey

There is no doubt, Emmett was a champion through the surgery to implant the G-Tube. He didn't require ongoing assistance to breathe after the surgery was completed. He was resting comfortably. And he was exploring. His hand went to the G-Tube button - he knew that there was something there. And he'd only been awake from surgery for less than an hour. At one point he had some challenge clearing his throat - Alisha and Josh got some training in how to use the suction equipment to assist Emmett by clearing that. In the photo above it's just an hour or so before surgery. His left foot has a monitor thingy (hope that I don't overwhelm you with my medical terminology!) while his right foot has the IV needle inserted and what looks like a splint to protect his foot and the IV. Tabs on his chest record all kinds of medical stuff. Emmett also knows how to work the paparazzi - he has all of the photographers in the room wrapped around his finger - expecially when he flashes one of his million dollar smiles.

The journey continues. This G-Tube surgery is merely one step in what may be a range of other medical procedures to assist him throughout his life. And any doubt (I know, multiple specialists were involved in the diagnosis, but wouldn't you hope and pray for something different too?) about this being a misdiagnosis was erased yesterday. His blood work has come back and it confirms without doubt that Emmett has Spinal Muscular Atrophy, Type 1. See the first blog post, Emmett's Story, for a description of this genetic disease. But let's go back to our little champion, Emmett, who absolutely just completely relaxes when held in his father's arms - and his mommy's too!

Prior to the surgery Emmett had to endure just over 14 hours with no food. He was receiving supplements via his IV, but can you imagine going from midnight until 2:30 p.m. without eating or drinking anything! Most of us would be incredibly irritable. I was irritable yesterday and I could eat whenever I wanted too! Emmett had a fussy spell for about an hour in the morning, but otherwise was a content little baby. Singing and dancing helped to pass the long morning hours. And, fortunately, some great naps also.

Emmett will likely leave the ICU today and return to the paediatric ward. This will be good for everyone, as he can have family and guests. In ICU it was family only. If you do visit, please consider the stress that everyone is under and limit your visit to 15 minutes. Alisha, Josh, and Emmett would love to see everyone but that may not always be possible. Invite Josh and Alisha to the hospital coffee shop for a treat if you'd like to extend your visit. This message is coming from all of Emmett's grandparents - not Alisha or Josh. Pardon us, but we're involking parental rights on this because we're concerned for our kids and grandchild. Alisha and Josh will probably request that I remove this from the blog, but the grandparents have a united front on this point. We absolutely want family and friends to visit Emmett and support Alisha and Josh - but with reasonable limitiations. Like a 15 minute limit. Please, don't even consider a visit if you have any type of illness. Not even a scratchy throat. Emmett is extremely susceptable to any type of bug and has been in reverse isolation all week. While family hasn't been gowning and wearing gloves and masks - all visitors should until the hospital lifts that restriction.Emmett knows that he has had another 'belly button' added to his abdoment. After the surgery he was kept out of a sleeper so that the medical staff - who are awesome and we thank and appreciate the ICU staff and third floor staff at BC Childrens' Hospital - had easy access to check Emmett. The lack of a sleeper also meant that Emmett's little hands could reach down and feel the G-Tube. It's quite an interesting device, so I can understand his curiousity. It is a tiny valve (about the size of 3 or 4 shirt buttons) with two stems/pipes sticking out to form a 90 degree angle. These stems are a very tiny diameter because Emmett is a tiny boy. Well, actually, he's getting pretty big. When he's on the weigh scale his feet stick out off of the end of the baby cradle/tray. But back to the point, the tube that is inserted into the stomach has an inflatable balloon end which, once inserted into the stomach, is filled with a saline solution which balloons out and presses against the inner stomach wall, pulling the valve against the outer stomach skin, and thus effectively secures it in place. And it is secure; we don't have to worry that Emmett's curious fingers will accidently remove it. It's pretty cool equipment - which is important because Emmett is a very cool kid. This morning Emmett will begin receiving food via the G-Tube. While he was under anesthetic, the N-G Tube was removed. Emmett really didn't like that tube! Plus, apart from his soother, we'll get some awesome photos of his face without tape on it! We hope he adjusts well to the G-Tube.

Huge thanks to Cindy, the nurse who oversees all of the SMA kids who are in this area, for getting Alisha and Josh a room at Ronald McDonald House for a couple of nights. Josh tried. Roger tried. No success. When Cindy heard this all I can assume is that she went into Mother Bear mode because in no time at all she had a room and got them settled in. A bath! A place to have a snooze! An awesome slide! And all right beside the hospital. Ronald McDonald House - thank you so much for this oasis during this most difficult time. Alisha and Josh are unbelievably strong but they needed a spot really close yet outside the hospital to simply relax. Your support and prayers absolutely help in maintaining their strength. They need you and they thank you!

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"Love endures all things" Blessings ~ Rick
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Comments from us ( site keeps cutting short) ~EB
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Keep those adorable videos coming! Many prayers for your whole family -Deborah D (Josh
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Thinking of you, and best wishes from all the Gilhulys