I am not sure I even have the words for the difference between now and 24 hours ago - or for that matter, even 9 hours ago. Watching Avery healing with such ease and grace has just lifted a world of worry off my shoulders. As late as 9:30 this morning she was still intubated and hysterical any time she came to (understandably). Her eyes were swollen shut and she had so many iv's in.
Now, she can talk - almost audibly, eat and roll from side to side. She watched a movie and decided it was time for bed - I may soon join her as I am spent and I doubt it will be a truly restful night.
I wandered in to the Ronald McDonald House room on this floor - free coffee and snacks until 11. Colonel Sanders adorns the wall outside of 3 B and in the hall one of the wings is sponsored by Walmart.
And lastly for tonight's ramblings, the hospital is selling a stuffed something and neither Andrew nor I were certain what it is - possibly a pig with horse legs :)
Thanks for hanging in here with us, I don't think we can articulate how much your collective support has helped us get through these last 36 hours.
Jodi
Thoughts and experiences from the scoliosis diagnosis through surgery and recovery. As told from the perspectives of parents, Mom and Dad, and the patient, Princess Pants.
She's Ba-ack!
A lot has happened since the last update. From my perspective it was hell on Earth but according to the medical professionals it was business as usual.
Avery woke up and was trying to speak and pull the tube out of her throat. They sedated her again, but not for long. When the sedative wore off it was time to remove the breathing tube. Holding her hands down and watching her struggle to breathe is now rightfully at the top of my list of moments I'd rather not have to experience again.
The good news is she was telling us to let go of her hands and sit her up and get her some water. Unfortunately we were unable to do two of the three right then but after about an hour we had her sitting up and breathing normally. The smile she gave the nurse who hooked her up to the pain meds pump was priceless!
I spoke to the resident who assisted Dr . Missiuna. They are very happy with how it all went. She's fused from T2 to L4, which is 14 vertebrae. She has two titanium rods holding her spine rigid but in an optimal posture. Holding the screws in are 27 screws, cemented into place. Why not 28 (14 x 2)? Her T4 wasn't well suited for a screw so they skipped it on the one side. Both Dr. Missiuna and the resident are happy with it. They transfused her two times throughout the surgery, using my blood and then a whack of blood bank blood. This was due to natural processes and the sheer length of the surgery. She was never in any danger.
She's sitting in a chair now and reasonably comfortable. Nurse Janet is very impressed. She continues to be ahead of the curve. We need to make sure she's taking big deep breaths to stave off fluid build up in her lungs. We do exercises with a special machine every hour.
As it stands she's the healthiest kid in the ICU and the beds are full so if they need her bed they will move her into an interim care room and than a ward room. I know its all good news but having nurse Janet right outside the window is a great comfort.
As of 2:30 Avery was back lying down and overachieving in every category. She burped and that was a big deal so they gave her a Popsicle (mango, her favourite) and she immediately started talking better. She was also allowed some water. The hard part is going to be slowing her down! She wants to do everything she can and we have to remind her to let the nurses do the work and she needs to just relax. Such a fighter.
Jodi slept not too badly and will likely sleep not too badly tonight so Avery said it was okay if I went home and got some rest and saw The Dude. I'll relieve Jodi on the day shift tomorrow. All things considered things are going as expected now in spite of the rocky night and rough morning.
My brain is mush, so hopefully this update made some sense. I'm going to take a nap.
~ Dad
As of 2:30 Avery was back lying down and overachieving in every category. She burped and that was a big deal so they gave her a Popsicle (mango, her favourite) and she immediately started talking better. She was also allowed some water. The hard part is going to be slowing her down! She wants to do everything she can and we have to remind her to let the nurses do the work and she needs to just relax. Such a fighter.
Jodi slept not too badly and will likely sleep not too badly tonight so Avery said it was okay if I went home and got some rest and saw The Dude. I'll relieve Jodi on the day shift tomorrow. All things considered things are going as expected now in spite of the rocky night and rough morning.
My brain is mush, so hopefully this update made some sense. I'm going to take a nap.
~ Dad
24
We've been at the hospital for 24 hours. Let me tell you that the first 12 hours were a cake walk compared to the 12 that came after and the 12 that are ahead.
Extubation happening this morning. Hopefully the fever is under control. Jodi stayed in the room and got a bit of sleep after a couple bouts of excitement. I grabbed a couple zzz's on some chairs. Princess Pants is strong and fighting. Some good kicks and resistance to the nurses (trying to keep her tube in).
No machines are beeping at the moment. This is a good thing. The sound of the ventilator overpowers the quiet room. I'm afraid to move and upset the Feng Shui.
Something just beeped and woke Jodi up. The nurse came in. One of the many bags of something feeding her medication was due for anorher dose. It was the sedative. They'll be waking her up soon.
I'm going to get a coffee and brush my teeth.
~ Dad
4:32 am from the Pediatric ICU
Avery needed this surgery. It wasn't cosmetic, if it wasn't done, she would have possibly had difficulty breathing, and it would have impacted her for her whole life. But I have to tell you, seeing her in the Pediatric ICU hooked up to monitors and a ventilator and looking like she has just lost a boxing match is making feel sick. She is heavily sedated and her wrists are tied down to the bed so she doesn't pull the intubation tube out. I am up now because there was just a flurry of activity because she is running a fever, so the nurse wanted to giver her some Tylenol and flip her over to her left side.
To survive the surgery, Avery not only needed the blood donation Andrew provided, but 3 or 4 times what he was able to give. So I will once again echo the sentiment - if you can, please give blood. If it wasn't for the generosity of strangers, she might not be lying beside me right now.
I kicked Andrew out of the room to try to get some sleep in the family lounge, and I have checked on him twice and he seems to be getting some sleep I am glad, because tomorrow when they extubate her, we are going to need all outer strength, emotional and physical to help her recover.
I did, however see her eyes slit open for a second, and she was kicking and flailing when the nurses moved her, so there is one big sigh of relief - all her bits work :)
To survive the surgery, Avery not only needed the blood donation Andrew provided, but 3 or 4 times what he was able to give. So I will once again echo the sentiment - if you can, please give blood. If it wasn't for the generosity of strangers, she might not be lying beside me right now.
I kicked Andrew out of the room to try to get some sleep in the family lounge, and I have checked on him twice and he seems to be getting some sleep I am glad, because tomorrow when they extubate her, we are going to need all outer strength, emotional and physical to help her recover.
I did, however see her eyes slit open for a second, and she was kicking and flailing when the nurses moved her, so there is one big sigh of relief - all her bits work :)
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