~DECANULATION~

Decanulation has become one of my favorite words. For me it has meant the end of a year and a half long journey…3 times. Eva was actually ready to be decanulated about 4 months ago but it was the beginning of RSV season here in Utah. The risk just wasn’t worth it to us so we decided to hold off until spring.

Spring came and we called to schedule and appt with our ENT. He was on vacation for a few weeks, AGH! We finally got in to see him and he cleared her for decanulation but because he had been out of town for so long his schedule was packed and he couldn’t get her in for 6 weeks! We were put on a waiting list in case there were any cancellations and 2 hours after leaving the hospital we got a call moving us up 2 1/2 weeks. We took it. Almost 2 weeks went by and I got “the call”. It was Tuesday afternoon and they had an opening on Thursday! I was so excited I must have thanked the lady 20 times during our 1 minute conversation! I immediately called Rich and told him the good news.

The day the good news came in!

Night before surgery. I did her last trach tie and gauze change.

We had one day to prepare and Rich couldn’t get off of work so I was going to have to be there alone which made me so sad. It was a 20 month build up to this moment and he wasn’t going to get to experience it with me.

Morning of decanulation! Headed out the door.

 

So, check-in was at 10:30am.

From there everything moved so quickly. We went in to the pre-op room to change her and take her vitals. She seriously has a thing for older men.

 

Ignore my horrible singing. She usually sings along but decided to leave me hanging this time

She wasn’t scheduled for surgery until 12:00 but they were ahead of schedule and took her back at 11:30. Here she is with the anesthesiologist. All the nurses thought she was just the cutest thing and she sure knows how to melt hearts! She was rubbing the anesthesiologists facial hair and and being so cute and playful with him. The nurses warned me that he might decide to keep her, haha!

 

He walked away with her and I was left to wait. I checked in to the waiting room and decided to hang out for a few minutes and update the family via text before heading down to grab a bite to eat. The procedure was supposed to last an hour. About 20 minutes in, the waiting room receptionist got a call for me from the OR, it was Dr. Muntz. He told me that when he went in to make sure everything looked good in her airway he noticed some tissue that was connecting her vocal cords. He couldn’t believe that he hadn’t noticed it before! He asked for permission to snip it which, of course, I gave. I was so glad I had stayed in the waiting room for a bit!

Picture of the tissue connecting the vocal cords.

Halfway through the surgery Rich got there. He had an hour and 1/2 to hang out before he had to go back to work. Dr. Muntz came out to let us know that everything went smoothly and that her airway looked great! He said that with the exception of the tissue between the vocal cords she had no granulation tissue. About 10 minutes later we were called back to the post-op room and my baby was angry! As soon as I snuggled her she was just fine.

Of all of my babies, Eva recovered from the anesthesia the fastest! It took her no more than 10 minutes before she was her normal, happy self again. All of my others took at least 30-45 minutes before they were semi-functional.

About 20 minutes post-op snuggling with mommy.

Because she was doing so well they moved us straight to the room we would be staying in over night.

 

I changed her into her comfy jammies and my girl was feeling awesome and was ready to eat! Her first pudding ever.

 

She didn’t stop there though. One of her favorite things to eat is a bagel with cream cheese, ok maybe I should say cream cheese with a little bit of bagel. After eating all of the cream cheese off of her bagel she reached for the rest of the cream cheese.

Yum!

 

Fruit Loops

Hanging out and keeping busy coloring.

 

Sats were great, oxygen saturation was awesome and then she got upset…

About an hour after daddy left she decided it was time for her to leave too. She pointed to the door and when I told her we couldn’t go she started to cry. I could immediately tell something was wrong. She started arching her back and twitching her whole body, her lips turned purple and then she went limp. I had her in my arms so I yanked the monitor cord off and ran out into the hallway screaming for help. It was one of the scariest moments of my life. A bunch of nurses came running towards me and I went back into the room and sat down with her on the bed. They held an oxygen mask up to her face and she slowly and quietly started to whimper. She was still limp and her face started to regain color as she started taking tiny little breaths of oxygen. After about a minute she was mostly back to normal, still whimpering softly but she wasn’t limp any more. I just started bawling because she had scared me so much! This happened two more times but the last time it happened was the next day and she was able to recover before passing out. The last time I actually made her cry on purpose because I wanted to be sure that she would be ok before we went home. I was so ready to stay another night if it continued. I spoke to Dr. Muntz before I was ok with being discharged and he assured me that she would be fine. He said that it happened because of the swelling in her throat from surgery. He didn’t act like it was that big of a deal but I’ll tell you what, it sure scared the heck out of me!

Hanging out, waiting to be discharged.

 

We were discharged at 8:30am and nobody was more happy than Eva. We headed home and picked up the girls from Rich’s work on our way. They were so excited to see that her trach was gone! Then, after we got home Eva immediately pointed to the back yard. Her sisters took her out to play.

No time to bathe or change, she just wanted to get out there!

Somehow she managed to find a sucker and unwrap it…yep, she’s just fine

Eva has made incredible progress with her stoma healing. To ensure that it closed up, Dr. Muntz went ahead and cut out the track where the trach so it wasn’t pretty to look at at first. I’m used to seeing a hole in my kids neck but even this was hard to look at. The picture doesn’t do it justice at all.

Day of surgery.

Day 2~Already so much better!

She was hurting and needed extra snuggles this night. I’ll always take extra snuggles.

Day 3~ Yesterday, it is looking so awesome!

Yesterday I also decided it was time to clear out all of her trach supplies and equipment. That felt so good!

She has a trach tie tan line, haha! #trachbabyprobs

I can’t explain the feeling I have. Even though I’m “used” to trachs there is just nothing that compares to being rid of it. I’m so much more relaxed and I have this huge feeling of gratitude and pure joy that fills my heart. I’m so HAPPY! We all are.