Oh my goodness. Word simply don't describe Emmett's reaction to some slapstick comedy where Josh hits himself over and over again with Emmett's balloon. You've got to see it! Make sure you have your volume up to hear Emmett!
Alisha and Josh received their new Infinity Orange feeding pump yesterday and we got it all set up this morning. The borrowed one from Abbotsford hospital has been working well, but the Infinity is much more compact and it is also portable. And a bit easier to use. Unlike the Infinity Teal feeding pump that was loaned to us to get started, this Orange model should be able to handle the low feeding doses that Emmett receives overnight. We tested it for over an hour this morning with distilled water (not with Emmett, just pumping into a measuring cup) and it was working perfectly. 1 p.m. will be the real test!
Just like every other little one, Emmett loves to play Peek'a Boo and Hide'n Seek. Emmett loves having his mom hoist him up in the air. Pretending he's an airplane or a race car with his dad is also a ton of fun. One morning after his breakfast Emmett and I played with a bunch of his toys in the living room. Before you could blink, Emmett was playing hide'n seek and making me look for him. (It is slightly within the realm of possibility that perhaps I buried Emmett under these toys.)
There is a difference, however, when playing with Emmett. When being hoisted up into the air or flying like an airplane his head must be supported. The location and placement of his limbs have to be taken into consideration at all times. You've read these words before, but SMA Type 1 is destroying the nerves in his spinal column. He is losing control of his muscles because this progressive genetic disease is removing his ability to talk to his body. His brain is trying but his limbs won't respond the way he wants to. It has affected how he swallows. It will continue to expand its affect upon him. Playing Hide'n Seek, we were having a lot of fun and that was evident from Emmett's eyes and expressions. But I was watching very carefully. A six month old who didn't like getting covered could just knock the offending toy away. Emmett doesn't have the strength in his arms to do that. As a four month old he did.
I couldn't understand why they were doing a sleep study last week at BC Children's Hospital. I was thinking of other things they should have been doing or trying and didn't understand why they thought it was successful. I pointed out a couple of times that he had, in fact, stopped breathing and that's why we were there. How could that be successful? They attributed that to aspirating food/saliva and view the G-Tube as the immedicate solution to that. I still didn't get why they were pleased with the results of the sleep study, but this week his paediatrician explained it in a way that sunk in. Finally. The success was because Emmett's brain was telling his lungs to breathe and they were. There was no hesitation or interruptions. How could that be interpreted in any other way than a massive success. The next major hurdle that Emmett is going to face is when that signal to his lungs weakens and gets interrupted. This was a success because, while he stopped breathing, it was due to aspiration.
Wierd, huh? We're happy because the cause of Emmett's breathing challenge was food/saliva. It's possible that as you read this blog you may think we're hiding from the truth. The fact is, we've peeked around the corner and the truth has us scared silly. It's impossible to hide from because we see it in Emmett every day. We see it as we are dealing with the third feeding pump since Emmett got home on Friday night. Yes, that has caused no end of frustration and grief in this household. Emmett is hooked up to the feeding pump for 11 hours a night and then three big meals throughout the day. That has become a focal point and we're also trying to find ways to get Emmett out of his room. He's only six months old and he already recognizes that his crib means that he's going to be stuck there for a while. Alisha and Josh are trapped too. The portable pump didn't arrive with other supplies today, so at 8:30 p.m. Josh and I were out in the garage sawing and drilling to create a stand to allow Emmett out of his room to watch, well, watch the Lego Movie with us.Yes, we laugh with Emmett and at each other. We laugh at Emmett when he farts loud enough to be heard a block away. We tease him when he fills his diapers to the brim and are even excited about it. We don't want him to cry but we love hearing his voice when he does. We hang on to every eye movement as he follows our conversations, looking around the room to focus upon the speaker. His grin is infectious and he shares it so freely. Because those are all things that he can do. We aren't hiding from the truth but the bigger picture is that Emmett needs to laugh and play and have books read to him and have the opportunity to tiptoe through the flowers (with someone carrying him, of course!). As soon as Alisha gives the all clear, Emmett will be back in his Jolly Jumper and bouncing around the room. As I've said before. Alisha and Josh are living moment by moment and seeking the best of every second. They've had down moments and that is where their family and friends have stepped in with hands and hearts of support. Thank you for caring. Thank you for your emails and cards. Realize that this is a long journey that Emmett, Alisha, and Josh are on. It makes the Lord of the Rings trek look like a picnic in the park.
Through the Internet and at the Children's Hospital they have met other families with babies who are on the same journey as SMA Type 1 has invaded their families also. A terrible bond. An amazing bond. Hide and Seek! Pretty sure they're playing Peek'a Boo and Hide'n Seek with their precious little ones. We will continue to play despite the truth - because Emmett wants to play!
Alisha and Josh, on the other hand, are a bundle of nerves that didn't seem to get more than two minutes of sleep. And no sooner did they close their eyes than the feeding machine from - well, I cannot say that - so I'll just say that the feeding machine which was a great gift (but sometimes gifts are a lot of work) would start sounding it's alarm. Alisha and Josh, not really asleep yet, would rush to Emmett to silence the alarm. They didn't need to worry about Emmett. He was perfectly fine and could sleep through a dozen alarms - as he proved last night. The machine was alerting Alisha and Josh that it wasn't happy. It doesn't notify of any issues with Emmett. Very self-centered. Loud. Obnoxious.
We had an early morning visit from the nurse who supplied the pump. It's a loaner until their own pump arrives on Tuesday. She checked it out and gave a few really good suggestions about it's use. But when she left, the pump starting sounding it's abraisive alarm again. (That teal coloured box on the coffee table is the pump). After trying all of the suggestions at least twice, Alisha called the paediatric ward and they offered a few suggestions, including come in if it continued to wail away. Which it did, so off to the hospital the four of them - Emmett, Alisha, Josh, and the pump - went. Where it worked. Seriously. For at least 30 minutes it performed it's job in silent wonder - which was good as it was time for Emmett's lunch. Alisha and Josh stared at each other. Apart from calling the pump names (things like, silly pump, goofy pump, loud pump and other cutesy names like that), they had done everything exactly as the nurse's had just done. Except for one thing. Emmett's nighttime feeding is a much reduced volume than his daytime meals. They dialed it back and, like clockwork, the machine began to wail.
Alisha and Josh returned home with a hospital grade feeding pump from the hospital that can handle the low volume of the night time meals. It will have to be returned on Tuesday when the brand new pump arrives. And we will find out, probably about midnight Tuesday evening, if the new pump can handle the abuse and work that our angelic Emmett will apparently force it to undergo. The nurses all say that this pump model is a good one - it just seems that our short term loaner is worn out. The new one will be here soon, and hopefully it will have a volume button on the alarm!
It is heaven being at home. That doesn't mean it isn't a lot of work! Thank you so much for your thoughtful and practical ways of showing you care. It's tremendously appreciated.
Emmett is back home after ten days in hospital - one in Abbotsford and nine at BC Children's Hospital. He received great care and we are so thankful for the expertise of the medical staff. Even so, we are so glad to have Emmett back home. It was a rush trying to coordinate all of the equipment that was required to allow Emmett to leave the hospital. As you know, he has a Gastric Tube inserted to allow feeding directly to his stomach. He is no longer going to be receiving anything by mouth. This requires a feeding pump and a search through two hospitals in two communities was required to find one. That was the golden ticket and, once parents were trained on it, Emmett was discharged. He got to come home on his Grandma's birthday!
At home everything was ready. An early morning delivery of the feeding pump meant that his equipment was all here and ready to go. Since it's best for his head to be elevated while sleeping - or laying down awake too - we set up a wooden frame under the mattress that allows his head to be raised at a range of levels. We are looking into getting a monitor that alerts us to any breathing stoppages, and home care is getting Emmett a suction machine and a cool sitting chair that supports him completely. Thank you for the donations, because we will be using that to purchase a breathing monitor. There are a couple of cool ones in pre-production stages, but we cannot wait the month or more for them to be ready.
Emmett knew he was at home. You could tell by his facial expressions. You could also tell that he was feeling better than he has been. And there simply is nothing like home sweet home - even if you're only six months old. A bit of supper for Emmett and all of us, and then some relaxation time. For Emmett, that included a bath and finally getting his hair shampoo'd. He loved it! You can see the 'Mickey' - that's the part of the gastric tube that protrudes from the stomach. He also has some stitches near his belly button, where the surgeon entered the abdomen and stitched the stomach to the abdomen wall. One nurse described the entry point to Emmett's stomach as being similar, but much larger (or much smaller in some instances) to a hole for a piercing. So, those of you with lots of piercings - I'm pretty sure Emmett has you beat!
The important thing, Emmett is feeling better and he is at home! There will be another mountain to climb in the not too distant future, but that is then and this is now! Our bright eyed little boy is home! Enjoy his expressions!