So last Thursday was the begining talk about Emerson possibly getting her trach removed before we go home. So the first step was to give her a smaller trach so we did and she is doing wonderful with it a week later.
Friday September 17th she was put into a walker and did really well with it. She is picking up her right leg well and trying with her left. She is also able to support herself with her left leg and is trying with her right but it buckles at her knee. But overall she is doing really well with trying to walk. Emerson also got in a beanbag swing and was okay with it. lol. She also got in a ball pit with Mrs. Leslie and was not happy at first but really started to enjoy it after a little bit.
This week (9/20-9/23) Emerson is still doing well with drinking out of a cup and is doing soooo amazing at trying to hold her head up. She has so much more control with bringing her head center and back and front and is holding it up in the center much longer she even sometimes moves her head while still keeping control of it. :) Emerson also got put in this neat little contraption, it's a treadmill that she walks on but is put in a harness to help her hold herself up. She did okay with that. Emerson also made it in the bulletin board at the hospital, proud mommy! This week they have also been messing a lot with her meds and feeds to get them right for when we go home. She was completly off of her propanolol but on Tuesday night we realized that she had a bladder infection which caused her heart rate to go up which is typical when someones in pain. So they put her back on the propanolol once a day which is to help regulate her bp, body temp, and heart rate. Emerson was also given neurotin for her seizures but after a couple of days it wasn't really working too well so just Tuesday they added keppra (sp?) which is to help her with seizures, So far with a full days dose in her I do not see much a difference and the Dr. said that it takes a couple of days to really see a difference. So we'll see. I just pray that she stops having the seizures completly.
Tonight Thursday September 23 Emerson gave us a scare though, she stopped breathing on three seperate occasions. It was very scary, my hands and legs never shaked so much and my mom says that I was white as a ghost. What happened was that Emerson gets a breathing treatment and her trach suctioned every four hours and her last treatment and suction was at 12 noon and she was due for one at 4 pm but she didn't sound junky like she needed to be suctioned so we went ahead and went to the thearpy renunion party they had for old and new thearpy patients. We got back to our room Emerson fell asleep and respirtory was on their way to do what they needed to do when her apnea monitor read zero for her respiration and one hundred and something for her heart rate (I didn't look too closely). So I yelled for the nurses and she wasn't blue or anything but was gasping for air when they came in and this happened two other times her monitor would go off her belly wasn't moving and then she'd gasp for air. So they bagged her and suctioned her, gave her her breathing treatment, and all the while she was still sleeping, so we woke her up, suctioned her, did CPT on her, and suctioned her again. And she seemed fine after that. The respirtory thearpist said that she had a lot of thick mucus and got a mucus plug out when she suctioned her so that is why they believe that it was just from that. Also too because they did a blood gas on her and it was fine and her xray was fine as well. The Dr. did however tell me that when you have a plug your carbon dioxide that you breath in can make you "intoxicated" just like alochol and can mess with your brain with how you breath. So yes this all happened because she had a plug.
On a better note this week Emerson has been able to tolerate her speaking valve ALL DAY! except for when she's sleeping. This is another big step to getting her trach out, so Emerson won't have her trach forever. Also too different things I have been noticing is that she moves her legs and arms a lot more. She can wiggle her body too! She gets goosebumps now, she has tears now when she's really crying, and her chin chatters when she's cold. I know these sound like normal simple things, but I haven't seen my baby do this in three months and slowly everyday God is blessing her and she's gaining little things back. Gosh I can't say enough how blessed I am and how thankful I am for God's work on my baby! :)
I will post pictures sometime this weekend of all of her progress! :) Please contine to P.U.S.H for Emerson (P.ray U.ntil S.he's H.ealed)