Friday, April 24, 2009

Pacifier updates

So far, so good. 

It is so easy, in this type of  situation to take even God's gifts with a sense of fear. Yes, this moment is headed up but when is it going to come crashing down? Like another family here at the PICU said, it's like a roller coaster...but without the fun part. Even the good moments really can feel like that clicky part as the roller coaster climbs up, up, up. The farther you climb, the more you fear the drop.
I do want to work hard not to live like that, though. All I have is this moment. At this moment, there is no discouraging new news. And even that, though it may seem small is miraculous when you really think of the workings of the body and how fragile our little man is. 
Some of the other cultures they took to look at infection throughout the body showed up negative, so that's great. They will check his kidneys and eyes, where yeast likes to colonize. His chylo output is down- 175cc yesterday compared to 250cc the day before. And today so far it is 65cc, compared to 100 yesterday, at this point. Yayyyy!!! Now to give you some perspective of the progress we need to see, we asked the Pediatrician what they wanted to see before they took out the tube. She said there was a child 3x Shepherds size that was putting out 10cc a day. ok.... well I'm still gonna praise God for 165cc. For our Shepherd, it's less that the day before, so we'll take it!
The people with Infectious disease who came to see Shep yesterday feel confident that treating Shep with just the fluconazole (an anti-fungal intravenously) is adequate for right now.
He is still going at full feeds and today they added more calories. This is probably the most essential part to his recovery. Once he can get nutrition consistently, it will strengthen him and give his body the ability to heal and fight.
With all the studying I have done on candida in the past, I started to rack my brain as to how else to help Shep fight the yeast. Most of the things I would do are dietary, though. I mentioned pro-biotics to Dr. D and she loved the idea, but so far we have not figured out anyway to get a pro-biotic pearl through a tiny NG tube or thick powder, either. It was so hard for me to know that there were ways I could help Shepherd but yet we couldn't accomplish them. 
I was reminded by a dear friend who called yesterday (how timely. How God) There were lots of those yesterday. Anyway, she reminded me that God is stronger than a pro biotic, stronger than yeast. It sounds so silly to say it. Of course, God is stronger than candida, but when you are facing something that has the potential to hurt someone you love so much, it is easy to lose sight of Gods strength. 

As I finish writing, I have just spent the past half hour holding a pacifier for my sweet son to suck on. He was even rooting around and trying to eat his hand! I have never seen him do that! I don't think he's ever had the strength to do that. How encouraging to see him have strength and act somewhlike a newborn baby. It is remarkable to me that he even still knows how to suckle. I mean it's been a month and he has never eaten with his mouth. Only bad stuff has been in his mouth, like tubes and stuff. Thank you, Lord, for that great encouragement. I'll take more of that. How refreshing.

Tomorrow, Shepherd will be a month old! Can you believe it? I cannot believe the month of April has almost passed us by up here in the hospital. I thought I would be spending April strolling through parks with my growing family. But I hope that one day I can say that seeing the beauty of my Lord in this time was better than Spring, sunshine, parks and family.

Speaking of family... here are more funny pictures of our family time the other night

Haddon getting tired and having a bad attitude

Our way of handling bad attitudes

It worked


JohnandBrandy said...

Hey Steph,
Just wanted to let you know that John and I are praying for you and Noah, and your sweet precious children. We are especially praying for a healing on Shepherd's body that will only point fingers to Christ and His glory. You are so strong and reading your posts have encouraged me greatly in my walk with the Lord. You and Noah are so special to us and we have faith that our BIG God can handle this problem.
We love you dearly. Please call if you need anything...

"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us..."
Eph 3:20

-John and Brandy

KR said...

Great pictures! Great reminder to enjoy the moment...and who's in control of the rollercoaster. I'm praying for the candida cure...may God flood the PICU with grace and healing.

Sylvia Goode Basham said...

I just got home and was praying for Shepherd and your family as I was driving. Thanks for taking the time to share what's going on.

Anonymous said...

Hey Steph,

I am LOVING the paci news! So so so precious!!

Looking forward to more uneventful days, of course, unless the event is that he is getting way better...I'll take those!

I love you,
Carolina :)

Millie said...

Still praying for Sheperd. I'm so glad that he is sucking! That's great progress. I'll be praying for the drainage to decrease also.
Millie and Colin-HLHS