Wednesday, November 5, 2014

Day 24: Extubation & Exhaustion

It's a rainy, snowy, cold day here in Fargo...three weeks to the day that Natalie arrived here. I remember packing for our trip here thinking the stay couldn't possibly be any longer than a week. So much has happened since then. It feels like we're in the homestretch sometimes, and other times it seems like there will never be an end to this.

This morning, I had so much hope that the end could be near. After all, yesterday was a big day...Natalie was extubated!
Unfortunately, being extubated means it's back to the BiPAP mask, which is very irritating for her. In the video below, you can see how the mask fits tightly against her face and blows the air violently into her mouth. You can imagine how uncomfortable that must be.

She's making this change at the same time that her pain medication/sedation is being cut down, and that results in her being more aware of what is going on. Now her heart rate is shooting back up, as is her respiratory rate. She's doing a great job of keeping her sats up and coughing up all of the mucus from her lungs, but she's working harder to do it, and that's not a good thing.
The BiPAP takes up her whole can see why she doesn't like it!
Hanging out with my little one while she wears her lovely BiPAP mask
We've tried the high flow nasal cannula a couple of times since yesterday, and although she loves it, it just doesn't provide her with the support she needs at this point. I finally got to see a smile last night, during the short period of time she tried out the cannula. It's been two and a half weeks since I've seen that, and I can't even begin to explain how therapeutic that was for my heart and my soul. Her smile is so precious, because many times it's the only way she can express to us if she's happy.
A SMILE! It's a beautiful thing.
Although things seem to be moving in the right direction, I was reminded today by Dr. Gheen that he won't allow her to struggle through this process. If she continues to work too hard to breathe, he will put the breathing tube back in. Hearing that was like a knife in my gut this afternoon. I need to believe that she is nearing the end of her hospital stay; the thought of going backward is devastating. I'm not one to cry very often, but this afternoon, I broke down in front of her nurse an respiratory therapists. I want to make things all better for her right now. I want our lives to return to normal.

The sad thing is that I'm getting used to this. I'm forgetting what life is like outside of a hospital. Thankfully, Natalie and I have met some very special people. The nurses and respiratory therapists are just fantastic. Watching them work has been fascinating. They are so caring and so knowledgeable. I've learned so much from them, and at the same time, they've been so encouraging to us. By now, we've met just about every nurse on the floor, but somehow I've only managed to get pictures of Natalie with a few of them.
Lori and Caitlin--we LOVE them!

Roxanne is an amazing nurse
Meanwhile, one of the worst things about being in the PICU and pediatric unit is that every once in a while we'll encounter a family going through what we have gone through in the past. I walked past a family whose baby was being put on a Life Flight. We've seeing crying families in the PICU; the parents who can't make eye contact because they don't want others to see what they're going through. My heart aches for these families because I know that you can't just tell them that everything will be all right. Sometimes it won't be all right. Other times I see the babies who have no family by their bed side. I wish I could be there for them to show them the kind of love that Natalie receives.

Speaking of the love she receives...a recent present from a neighbor back home is a wonderful addition to Natalie's ever-growing cast of stuffed animal characters on her hospital bed. Many of our friends will know and appreciate this teddy bear from Metigoshe Lutheran Church. Thank you, Kim, for this...

...and also for this. :) Would it look odd if I pour myself a glass of wine in the PICU?


Marie Nielsen said...

Praying for Natalie and her family!

Karen Anderson said...

Praying for your whole family. Have a glass of wine, Warrior!!

Lisa Potts said...

Praying for you and Natalie and all the caretakers involved. Chill that wine and use it for medicinal purposes…for your treatment. It does kill bacteria you know! Your blog says so much today in the process your are going through… the opportunity will come for you to help others down the road you are currently traveling. Praying for you all, even though you may not know me personally you are from my community and are traveling a hard road.

Sally said...

It is amazing to see how a beautiful, struggling child can bear such witness to the world while never uttering a word... When you are feeling so empty and frustrated and confused, Melissa and family, try to embrace in your heart the incredible ways God is using your experience for His good in ways you will never, ever know! Draw on the love and prayers that flood to you from all of those who read your posts, and find strength for the fight. God Bless you all and wrap you in His loving arms.

Jan Roers said...

Natalie inherited your strength and feels your love, hang in there all of you. Prayers......