Trach/Vent Clinic

We took Emylie to her trach/vent clinic today. At this clinic we see the pulmonologist, ENT, trach/vent care manager and special care pediatrician. They see her one at a time and then after clinic come together and collaborate on her care and then let us know... The pulmonologist, Dr Daftary thought Emylie's lungs sounded good and discussed procedures such as a bronchoscopy that may be beneficial.

I briefly mentioned in the last post the tissue I saw while doing her trach cares. Well, I sent pictures and discussed it with Chris Hartling and she said it was granulated tissue. They usually only do something if it causes pain, bleeds or interferes with a trach change. So as I do, I worried about changing her trach with that tissue which over the last week has grown. Thankfully Emylie's trach wasn't due to be changed until today...so I figured we would do it at clinic just in case. I was telling Chris and Dr Muntz how scared I was and that I would have dreams about her trach and my sweet husband was in the corner with a smile. He said, "you know they are going to have you change her trach!" And sure enough Dr Muntz said he wanted me to be the one to change it so I wouldn't worry. As much as I didn't want to be the one to do it, I DID. So, Dr Muntz, the ENT watched as I changed Emylie's trach so he could see what the granulated tissue looks like and so I wouldn't stress about changing her trach with the granulated tissue. I am happy to say that it went very well and I couldn't tell a difference. After we got the trach changed Dr Muntz put some silver nitrate on the granulated tissue and gave us a prescription for some cream to apply twice a day. Once the dr left the room Emylie said to me, "You did it all by yourself! Good job Mommy!" Isn't she so sweet! Dr Muntz also discussed getting rid of the binky and scheduling a swallow study. With the pediatrician we discussed some medical equipment such as a medical bed and a chair and she will get things started on both of those.

Overall I think they felt she was doing well especially considering where she was last month. They didn't order a chest xray because it takes 6-8 weeks for an xray to show the change after such an illness. 2 hours later we were on our way home and pleased with the overall appointment.

This last week Emylie has done WELL! She took herself off the vent for the first time and within minutes was crawling towards me in the laundry room. It was AWESOME to see her off the vent AND crawling with a big smile. She has gotten off the vent a couple other times, once she needed extra oxygen but the other times she has done fine without it. We also saw the plastic surgeon regarding the wound on her hand. He felt it was healing well and would probably take another month to continue healing.

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Tuesday March 6th

Emylie has been home over a week and has done really well. We kept her on 1 liter of oxygen the entire first week. She only needed 1 1/2 liters one night for a few hours. Other than that she did great. On Friday the 2nd I turned her oxygen down to 3/4 liter and then Saturday a 1/2 liter and Monday a 1/4 liter. The last three nights she needed up to a 1 liter but last night was able to stay on 1/4 liter while sleeping too. I tried to turn her oxygen off this morning but within a couple hours turned it back up to 1/16 liter which is very little and not concerning to me. For how sick she has been I think she has done wonderfully. Her lungs are sounding better each day and I would say are pretty close to baseline. This morning her right lower lobe sounds a little diminished over the left. I just finished her trach cares and am a little concerned about something I saw. Not sure if it is scare tissue or granulated tissue but trying not to freak out about it. I know Steve the respiratory therapist at Primary's mentioned something and I saw what he saw then but this is larger and different.
She has been off the Morphine and Adavan for a week. (oh, by the way, I am sorry I misspelled weak in my previous postings....I tried to catch myself each time but apparently missed---) Anyway. :) On Thursday last week she was incredibly silly! Her voice was loud and clear, she would make silly facial expressions and kept us laughing all day. We think she was probably "coming off" the medications. She has been happy....can I just say she is amazing...she can be happy through the stormiest of storms.
The wound on her right hand I think causes her the most discomfort. She doesn't like it to be touched and will cry through any cares we have to do for it and also randomly tells me it hurts her.
Her strength improves each day. She can pull herself up to the side of her bed now and even crawled a couple feet today. She hasn't been off of the vent yet but I feel she will get there soon.
I am very happy to report E2 only got better after the visit to the doctor last week. We kept her and Emylie away from each other for about 2 days and were so so happy nothing seemed to progress.
It seems we are all still trying to get back on schedule. Sleep still seems to be in short supply... one of these days I am sure we will feel "caught up". We are incredibly grateful to be home and have Emylie doing so well and E2 better too. Life is good! :)
I feel blessed to have such wonderful friends and family who give us support. Our good friend Carla came by today to talk Disney with us. Her handsome son went in August on his Wish Trip and she came to share tips. She was so sweet and brought a darling Minnie bag, binder with divers and notebook! I love to be organized and I felt so lucky to have a friend who cared so much! Thank you Carla!!
To all of our friends and family - THANK YOU for your support and love and prayers!