Decannulation - The removal of a cannula: in the case of children with trachs, the removal of the tracheostomy tube.
Well Emerson is at Children's Hospital and is in the process of getting her sleep study done for possible decannulation.
We were told to get to the hospital at 5:30pm and head to the ER to register. We arrived at 5pm registered but had to wait about an hour for a room. While we waited we ate. We finally arrived in our room around 6:15pm at that point we told all of our old nurses hello and then they weighed Emerson and took her height and measured her head. She has a pretty big head like her daddy, lol. Then around 7:20 or so we brought her downstairs for an xray. We came back up and got her trach downsized from a 3.5 to a 3.0, and she did good. Then they began to set her up. And boy did that take a while. She has so many wires and straps hooked up to her. She has this two pronged thing in her nose, it's there to let the computer know if air is coming in and out of her nose or mouth. She has a microphone on her chest. She has leads on that measures her respiration and heart rate. She has a probe on her foot to tell her oxygen level. She has two straps around her chest for respiration as well. She has another blue dot on her foot and I forget what that's for. Poor baby has so much hooked up to her. After all that commotion she got her meds and fell fast asleep. Then the nerve wrecking part happened........ they capped her! And she did great didn't freak out, didn't start breathing rapidly. Nothing. Thirty minutes passed and she was still doing great but by that time it was time for daddy and brother to head home because he's too little to stay overnight, when bubby kissed his sissy's hand her heart rate went up, she knew her bubby kissed her! lol. So it's been about an hour and a half now and she's sound asleep and doing great!
Last Friday Emerson recieved botox again. Yes you heard me right botox. The botox is used to help relax her muscles. Botox the first time around was used in her spine, feet, and hands. Her spine and feet took really really well to the botox. Her spine no longer has that 20-30 degree curve and her feet are no longer drop foot. But her hands didnt really change much. So we decided to give it another try for her hands. She had a total of 8 injections 4 on each arm. One in her bicep two in her tricep and one in her thumb muscle. We are now in day 3 of this and I see a slight slight difference but nothing major. It usually takes up to 2 weeks to really see a difference. So we shall see. Prayers that it works.
June is right around the corner and I can't wait! Napa Center booked and paid for 3 weeks, plane tickets booked, and hotel booked! I am so excited I spoke with Emmy's PT and the PT at Napa Center and told them my goal for Emerson which is to get complete head control and to be able to sit unassisted. I thought at first my goal was a but not reachable but they both said that my goals are realistic. Yeah I hope Emmy reaches at least my goal for her and if she goes beyond that I would be exstatic! I have to say though if Emerson never walked again, sat up by herself, or had complete head control ever again it wouldn't bother me so much. What bothers me most is that she's not here with me mentally. I miss her personality, her communication, her laughs and smiles. However the human in me wants it all, so I will continue to pray for a FULL healing on Emerson. Why ask for a cup of water when God could give me the ocean? Exactly why ask for only healing her feet I am going all out and continuing to ask for complete healing on my precious baby girl!
So all in all everything is pretty smooth sailing no major changes. I just ask that everyone continues to PUSH for Emerson.