July 4th and Dr. appt. up-dates

We had a really good 4th of July. James was working though and my SIL was out of town so I had no help with Autumn and could not go anywhere. Thankfully some GREAT people took pity on me and decided to come to my house. Love you, Steph, Robin, and Bedrick family! We grilled out and then the kids played in the water and explored the neighborhood. A police officer that lives on the next street invited us all over to watch the city fireworks but Autumn fell asleep so we just watched them from our yard. I thought it was so nice of him to think about our family and really wish I could of made it to meet some other families in our neighborhood and some other cop wives. Anyways, we all gathered outside (some in Madison's room to see from the windows) and watched the city fireworks. I loaded Autumn up in the wagon and she slept through it all. It was great to be surrounded by friends and family. The Bedrick's stayed overnight and it was great to spend some extra time with my BF.

This is Tanya and I with our little girls..Autumn's become shy over the past couple of weeks and always covering her face up out of embarrassment or not wanting to cooperate...it's funny!

Steph and Jordyn
Gage and Robin

My family

Just thought this was a cute picture..no Layla is NOT suppose to be on the couch.

Kynsie, Caden, Gage, Coby, Autumn, Jordyn, Madison, and Caleb...we had a house full that night but everyone found a place to sleep. ;)

Today my SIL, Jen and I took Autumn to her dr. appts. We first went to SB clinic to talk about getting Autumn a wheeled stander. This will allow her to stand up and push herself around the house. While in the waiting room my SIL noticed Autumn's trach ties had come untied...good thing she saw it...I tied them back before the trach slipped out...that has NEVER happened and I'm still confused how it came undone. Anyways, since she is so small they have to order her one and we go back in 4 weeks to pick it up...I can not wait.

We were loading up the car for our next appt. and I placed Autumn in her car seat and buckled her in. She started turning dusky and beeping but I could not see her pulse ox right away...I did not like her color so I reached for her oxygen (she was off her vent)...well...she started to get REALLY blue and her body went rigid and she went unconsious. I yelled for my SIL for her ambu bag (which was right beside me) so as I started bagging her my SIL hook the bag up to oxygen....she started crying and then slowly turning pink again. Her O2 stats and heartrate was going back up so I told my SIL to hook her oxygen to the vent and put her back on her vent. She started going down a little again and then I realized I had not turned on the vent yet...sheesh! I figured the reason she went down was because when she's in her carseat her head falls forward and since she does nto have good core control her body slumps and that causes it harder to breathe and I think she may of had some gas in her tummy as well. So, we got her out of her carseat....I decompressed her tummy (meaning got the air bubbles out) and we moved her breathrate up since she was also sleeping on top of all that and we were on our way for lunch and vent clinic. Just another day of saving my baby girl's life....I'm so thankful God always brings her back to me...everytime I have to bag her I'm always thinking, "Please Lord...don't let this be the time that I can not bring her back and that I lose her" I never get upset at the time or even minutes after...it's always at the end of the day when the adrenaline has worn off and I have a chance to really think about what happened that day.

So, at vent clinic her CO2 levels looked great, X-rays were good, and blood gas was excellent. Next time Dr. G wants her off her vent at least 1 hour prior to vent clinic to see how well her blood gas looks off her vent. He was pleased with how well she's been doing off the vent and her vent settings....he wants them at 20 while sleeping but I always break the rules some and told him during naps I've been doing 16 and he was pleased to see she was doing well with that. He did notice her trach tube is getting too small for her....he thinks that was the reason for the episode earlier. He thinks when he head goes forward it is clamping the trach tube down since it is not far in her trachea enough. He said on the x-rays the tube is barely long enough so they have up-sized her trach tube and I will go pick it up tomorrow. He thinks we will see a major improvement with all of her episodes and her gagging. Since we told him that her heartrate goes down when she's gagging he thinks it's a vagal nerve response...vagal nerve effects both lungs and abdomen. It can contribute to breath holding...it was interesting what I've read about it so far and wonder if that can be a clue into some things for us...just a thought. So, our plan is to have her bronch scope at the end of the month...see what her ENT thinks from what he sees and then maybe next vent clinic have another sleep study done to maybe wean her down more on her vent at night. Fingers crossed.

Here's a picture to show how well Autumn is doing...this was about 3 hour after her episode...she had a great time in the little high chair at vent clinic.