PMV update

Well, Autumn can tolerate her PMV but has yet to make a noise with it. She has cried once with it on but we could hear her cry at times anyways without one. So, I hope she will learn how to make noises soon. ;) It's great though that she can wear her valve without struggling like she did before and wears it for several hours at a time.

Already done

Bronch took all of 30 mins from sedation to completion. Dr. said everything looked fine. She does have a floppy airway but no granulation issues or obstructions. I asked how her vocal cords looked. He sadi they looked fine but could not test them since she was sedated but maybe we can sometime in the future while she's awake. They modified her speaking valve to relieve some of the pressure when she exhales. He said it's just a matter of her learning to breathe with it on. We will check back in 6-8 weeks so see how it's going and if he will need to modify it more. Praying this will work...I can not express how MUCH I want to hear her make noise and one day be able to say "Momma"..."Dada" would even be fine but I'd like momma more....haha. Just waiting on her to bring her back up from recovery and then hopefully being discharged asap. Getting hungry for some lunch.

In the OR

Autumn is in the operating room right now for her bronch scope. We arrived last night about 7:30pm and got all settled in. Daddy stayed over night with her and then I got here about 7:30am so he could sleep. She was awake most of the night. She was tired this morning but smiling as always. They said if it's minor issues like granulation then he will take care of it while they are there. If it's more major obstruction issues they will have to talk to us about it. So, we plan to have her discharge as soon as she gets out of recovery if all goes well. Praying we will be able to hear her voice soon. ;)

Yesterday Autumn sat up ALL the way by herself. She can push herself to a half sit with both hands on the same side of her body but yesterday she pushed up all the way, uncrossed her legs, and had a hand on each side of her body. She stayed up about 30 secs. before falling over. So proud of her! We also turned her car seat around to facing forward. Backwards it leaned too far forward so she when her head would fall forward it would pinch the trach off and make it hard for her to breathe. It also gave me a blindspot. So, we turned it around and she LOVES it. She can watch videos and see mommy now. She smiled all the way to the hospital!

I will update when I can and post pictures. Thanks in advance for all the prayers.

Noticable Progress

Yesterday I was trying to figure out how to keep Autumn entertained. She's very limited to what she can do and is getting bored having to be in the house day after day with the same old stuff. I use to push her around in her stroller while I cleaned but was too lazy to get the heavy thing our of my car (and did not have anyone to watch Autumn while I went outside) so I decided to just use her wagon instead. When we first moved here I would take her on wagon rides since the weather was nice but now that it's WAY too hot for her we have not been in about 2 months. I was happy to see that she can now hold herself up in the wagon now...I use to put a boppy pillow in front of her since she would lean forward and could not push herself up...BUT now she can. It was so great to actually see how much progress she has made in 2 months.

Upcoming Bronch Scope

Just thought I would add a picture for the fun of it. Haley and Autumn have matching outfits on and Madison just "had" to be included in the pictre. ;) Next week Autumn will have her first bronch-scope procedure. This is where they will use a scope to look at Autumn's upper airway. It amazes me that this will be her first bronch-scope ever since she's had her trach (2o months now). I think other trach patients get them at least once a year or more. Anyways, they have decided to do one to see if she has any grannulation tissue. They are checking because this may be the reason she can not tolerate her PMV (speaking) valve. If that is not the case they will modify it by drilling holes in it to see that helps her tolerate it. I'm VERY hopeful that the scope will allow her to use her valve and for us to hear her make noises. We can hear her cry at times now and a little slight noise every so often but that is it. I so want to hear my little girl babble and then one day say mommy. So, please be in prayers this scope will make a difference.

Last week was one of those weeks that I felt so behind on everything but I'm finally getting caught up and this week should be back on track. I just can not handle when I can't get my planned schedule done for the week and it makes me irritable. ;) Madison is gone again for 2 weeks. This time vacation with her daddy and his mom's side of the family and then to spend a week with my mom. After she gets back then it will be Gage's turn to go see Nana for a week. It's a nice break for me having them away from each other....without their fighting the house just seems much more peaceful. ;)

Autumn has been doing good in all areas. She's still working hard on crawling and sitting up. She has been allowing me to put some baby food in her mouth to taste without much gagging. She's back to blous feeds so instead of being fed with a pump for an hour...we gravitate her formula over 5-10 mins. So, I see even though progress has been slow...it's finally getting back to where she was before her nissen surgery and I have hope that one day we will get her to eat by mouth again. She's also doing great with grasping objects with her thumb and index finger. We are still working on pointing. She's so funny because she LOVES to be praised for doing what we ask and now she claps for herself when she's done something. Too cute! She's tolerating about 8 hours off the vent daily and gagging much less. I think the longer trach has helped...although we go back to the old one every other week until her costum trachs come in which will be in about 4 weeks.

We are getting more use to James' new work schedule. The good thing is that he gets home at 7am and relieves the nurse at 8am so that allows me to sleep in as long as I want. So far though my body has only been able to sleep until 8:05am but it's so nice getting that extra hour 4 days a week. He sleeps until about 3:30-4:00pm each day and then we have about 4 hours together until he has to get ready for work again. When schoool starts it will be harder because his only days off are tues, wed, and thurs so if we want to do anything as a family we have to try to do them on school nights which will not be easy...same as date nights. I guess we will make due though for the next couple of years. ;)

That's our life this week...enjoy yours!

Allergies

For the past 3 mornings Autumn's trach secretions have been slightly thick but I've been giving her a Xopenex treatment to break it up and then she is fine the rest of the day with thin secretions again. Yesterday afternoon though when she woke up from her nap she had yellow-green junk coming out of her eyes and they were swollen and red all around her eyelids. She's had allergy issue like this before but not this bad. Every 5 minutes I would clean her eyes and then it would all start oozing out again. Thankfully our pedi has an after hours clinic and were able to see her that afternoon. As soon as the dr. saw Autumn she knew right away it was allergies. She said that if the sinuses get blocked in her nose and her nose is not running then it will start coming out of her eyes. Her ears looked great though so we were pleased with that news. She also started having the sinus back-up soming out of her trach as well..her lungs still sound fine. So, they have started her on Zyrtec once a day for allergies and prescribed her some eyes drops. She looks just pitiful though with her red, swollen, junky eyes! Hopefully she will just do a lot of sleeping today.

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.

Summer Funk

I was looking back at a few of my other posts last summer and realize summer has become kind of a time of funk for me. I have to have a routine and schedule to my life and when summer hits those things usually go out the door. Not to mention that this year we don't have a for sure church home and I'm missing the fellowship in God's house every week. We've been trying to do Saturday evening church but have not been consistent since we sometimes have plans on Saturday nights and then I usually dread taking Autumn to church because she becomes such a distraction for me. I've continued with my quiet times with God but I also need my time of worship at church as well. So, God's been tugging at my heart about a lot of issues that I just feel like ignoring at times. I've also been struggling with keeping faith on some days as well. I think it's just a combo of not having our routine, feeling sad that we are having a blast with Madison and Gage but having to leave Autumn at home, being frustrated with some issues going on with Autumn's health, and just wondering what our future holds. I'm like a rollercoaster of emotions..one day I feel overwhelming blessed with my life and the next I want to have a pity party. One day I'm thanking God for this journey he's taken us on and all the miracles He's allowed us to see and all the people we've met through this journey and showing us His great faithfulness and the next day questioning why it seems that we take one step forward with Autumn and then 3 steps back again and asking God to just bless us with the ONE miracle I long to have of Autumn being trach-free. My heart can be full of joy and breaking at the same time. So many thoughts go through my mind that it would take a book to talk about them all. I just feel like I'm going through each day with a smile on my face, enjoying our new city and having a great time being able to do more things with Madison and Gage this summer all the while feeling empty inside. I'm confused that I can feel both at the same time. Honestly, I guess it's just that my life almost feels perfect except for the fact that we have not found a church home, Autumn is not able to participate in ALL of our family activites, and that James' new work schedule is crap. (sorry best word to describe it). Starting Monday he gets to work EVERY Fri, Sat, Sun, Mon from 9pm-7am. So that means no weekends off for at LEAST 6 months and that he will sleep until about 4pm daily. We assume though he will get this same schedule for the next 2 years since he's the "rookie". There are good points to his new schedule though...dinner with the family every night and will be able to attend school evening functions with us. ;) So, that is why I have not been blogging lately...don't want to be a Debbie Downer everyday. I have SO many things to be happy about and so many great things to share but my heart just has not been in it. I heard a special needs mother describe her feelings once and I really did not understand it until now. She said, "Being a special needs family is like having a sunny day each day but then having a rain cloud over your head following you around" Autumn is such a blessing and joy to have in our family and she makes our lives so much brighter but then having all the dr. and therapy appts. and seeing her go through so many obstacles, challenges, surgeries and having to leave her home while we enjoy ourselves is just like a rain cloud that is constantly hovering over us and ruining the sunshine God has blessed us with.