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Saturday, November 8, 2014

Day 27: Frustration & Faith

The days are just flying by here in PICU room 477. Another week has passed, and the improvement is slow, but steady. There are many things to be thankful for, but there are also many rough spots along the way that leave me scared and frustrated.

This morning, Natalie is resting peacefully in her bed, with her BiPAP mask on, snuggling her little puppy friend.
A peaceful Saturday morning
BiPAP is a tricky thing for Natalie. Since she was extubated, she was also taken off of some of the sedation she's had for a long time, as well as the morphine. Of course, she's become addicted to the morphine. So now, along with the switch to the somewhat scary BiPAP mask, she is going through some pretty nasty withdrawals. Sometimes it's hard for her to relax into the mask's air pressure. It's like watching someone who has never ridden a horse before start out at a gallop. She can't understand how to relax into the motion of the air unless she gets a sedative. 

At times, she does really well and slows her heart rate and respiratory rate down to a really comfortable level, as evidenced below. 
video

Other times, though, she fights it so badly that it looks like she's suffocating. The key right now is to keep her sedated enough to relax into the mask, while at the same time keeping her awake enough to take the good breaths. Hopefully the withdrawal phase will pass soon. As long as she is in this state, weaning her off of the mask will be tough...so she may be on the mask for a while before she can handle the cannula. 

The good news is that she is taking full feedings through her new g-tube, and it's going really well. Since she no longer needs any IV nutrition or morphine, she also got to say goodbye to her central line. The central line was an IV in her femoral artery, on the inside of her thigh. It was in such an awkward place, it's nice that it's gone. I'm sure she's much more comfortable without it. Now we're down to just the PICC line in her arm, which has been there for quite a while. I'm hoping that will go away soon, too.
The PICC line - hopefully it will be gone soon, too!
This would all be so much more bearable if I didn't have two little boys at home, who continue to grow up while we're gone. They miss their big sister, and they miss Mommy. Thank goodness for technology...especially FaceTime. I see the boys at least once a day and talk to them, and they talk to and sing songs to their sister, too!
FaceTiming Natalie while eating spaghetti: my multi-tasking Dexter

Calvin likes to hear his bedtime stories from me. Oh, I miss him.
The days actually do go by fast for me. There's always something going on here, or someone visiting. I've learned how to make the best of cafeteria food. I've created some pretty awesome salads with the salad bar. I'm actually reading books and doing my nails; two things I rarely get done at home. I also get a lot of one-on-one time with the most amazing little girl in the world, so that's pretty awesome. 
A quiet night in the PICU
I know many people think I'm so strong for how I'm handling all of this, but I can assure you that deep down inside, I'm a mushy mess. Being optimistic and upbeat is how I handle stress. It's easy to feel sorry for yourself, and I do often...but what good does that do me? I'd much rather be happy, so I won't wallow in my sorrows for long. I keep the mushy mess part of me hidden away until I need a good cry, and then I feel bad for the nurses who witness it! Ha!

On a similar note, I met a new friend a couple of weeks ago. We've both had some pretty traumatic experiences with our children, and talking to her was so therapeutic. I felt like I'd known her all my life. We both have a strong relationship with the Lord, even though it's been tested so many times. 

It got me thinking about what faith really is. My faith in God is not simple. I don't blindly follow Him, hoping that one day I'll go to Heaven. I look for Him in the times when it's most difficult to find Him...the times when I'm wondering if He's there for me at all. When I come out on the other side, whether it's good or bad, I know He was there all along. I can feel it inside, because I don't feel alone. Life doesn't always go the way you want it to go. 

I have a lot to be thankful for these days, and now I'm making an extra effort to share my happiness. We're in a place where there is a lot of sickness and sadness. You'd be surprised how many elderly people in wheelchairs will light up if you just look them in the eye and say hello or strike up a conversation in the elevator. 

Anyway, it's time for me to get off of my soap box and get back to admiring Natalie. Please pray for her strength to make it through this tough stretch and stay on the BiPAP so she doesn't take any big steps in the wrong direction. Thank you for all of your amazing support!

A joyful heart is the health of the body,
but a depressed spirit dries up the bones.
Proverbs 17:22

4 comments:

David said...

Keeping Natalie & family in our prayers.

Judi Anderson said...

Keeping you and your family in our prayers.

Barb Eltz said...

Our friend Garrett and his mother are in the cities fighting for his ability to breathe right now, too. It's amazing the strength we can draw from our children when we don't feel there's anything left.

The tears that come aren't weakness, by any means. Some of the most powerful prayers come from them when words aren't enough.

Anita Nettleton said...

Keeping you all in our thoughts and most definitely in our prayers. I find myself drawn to your stories as we have been thru very similar situations and know the deep buried pains as well as the excitement and joy brought about by steps forward. Special blessings to you all.