Whirlwind of grace

Oh, what a couple of weeks we've had!  I think we've seen the full spectrum of what the world would call the good, the bad, and the ugly . . . but that we prefer to call days of grace.  As Graham Cooke said,

"He is faithful. From this day on, for you there is no such thing as a good day or a bad day. There is only a day of grace. And some days the grace of God allows you to enjoy what is happening. And some days the grace of God allows you to endure what is happening. But don’t think about good and bad anymore – just enjoy the grace that is present. And out of that grace will come an expectancy. I know You are going to do something today. I just want to be alive to You so that I can see it; wait for it; speak it out; live in it; experience it; worship You in it; glorify Your name in it. There are no good days anymore; there are no bad days; just days of grace. Just days of grace. And the grace of God is going to come and bring with it the nature of God, that you might know Him. That you might know Him. That you might know Him and rest in Him, move in Him, worship Him, represent Him. " (emphasis mine)

If you've never heard Graham Cooke's message on the Nature of God (from which that quote was taken), you've missed a huge blessing.  It has in so many ways shaped the way I've walked this journey with Noah.  I've often said that I don't need to know why - -I just need to know the One who does know why.  This message will help you know that one.  I've included the youtube links to the message at the end of this post and I urge each of you to watch it!!!

Over the last couple of weeks, we've seen God's grace in celebration.  Our sweet Mary Faith turned four years old!  We are so blessed to be the parents of this truly delightful little girl and we enjoy her so much.  For weeks leading up to her birthday she talked about her desire for a Minnie Mouse party "with party cakes (her word for cupcakes), balloons, presents, juice, and PINK STRAWS!"  Pretty hard to say no to that, so that is precisely what she got, right down to fancy pink straws from the Valentine's aisle at Walmart.  Here are just a few images from that day.  (Oh, and yes, she's wearing short sleeves outside at the end of January!  It was almost 65 degrees the day of her party.  It was a huge blessing to have the party outside to reduce Noah's exposure to lots of little ones and the germs that they might carry.)





We've seen God's grace in ministry.  Noah's foundation, Noah's Hands of Hope, is growing by leaps and bounds.  It's still in it's infancy, but just like a baby it seems to grow and develop more every day.  We have a website (www.noahshandsofhope.org) now and have been receiving donations that have enabled us to order all of the beads for our bead programs and to help two families just last week!  Our board of directors met and we have great plans for some fundraisers that will help us help more families.  Noah is excited to see this happening, and even though he is very tired and very week, this is SO important to him.  Here's what he has to say about it:





There is a lot I want to share about Noah's Hands of Hope, but I'm going to save it for another post.  In the meantime, would you please visit his site and pray about how you can help?

We've also seen God's grace in difficulty.  As you can see in the video, Noah has suffering from a great deal of edema and swelling.  This is very uncomfortable for him.

Noah's labs are continuing to be worrisome.  His liver enzymes are very, very high.  Even though they started coming down, they seem to have plateaued now at levels that are still alarmingly high.

We're working on getting him in to see an endocrinologist because he seems to be showing signs of adrenal insufficiency.  He's currently on steroids which are part of an anti-nausea "cocktail."  Those steroids are making him absolutely obsessed with eating . . . a heartbreaking problem for a child who can't eat.  He tells us dozens of times a day that he is "starving" and there really isn't anything at all we can do about it.  He isn't really starving, of course - all of his calories and nutritional needs are being met in his TPN (IV nutrition) - but he feels like he's hungry all of the time now.  It's been about 13 months since he's been able to eat and it hasn't been a big problem for him until we started the steroids.  Because the steroids are keeping his blood sugar raised (in Noah's case, a good side effect), we can't stop them without the go-ahead from the endocrinologist.  Even if he says we can stop them, the treatment for adrenal insufficiency is . . . yep, you guessed it - steroids.  Not the same steroids that he is on now, but ones that will likely cause the same problems.  Noah can take tiny bits of what he calls "melty things" by mouth - sips of drink, small lollipops, little bites of ice cream, etc., but they all drain out of his stomach drain immediately so they don't satisfy his hunger at all.  Please make this a real matter of prayer for him.

Last but certainly not least on the Noah front, he had a bit of an emergency on Wednesday.  I've always said that if we had a true emergency, I'd find a way to update here, and I'm sorry that in this case I couldn't.  There were people posting updates in the comments section, but I realize that many of you wouldn't necessarily know to look there, and I'm sorry.  I can update Facebook from my phone, but can't update here, and everything happened so quickly that I didn't even think to get someone else to blog about it.  Here's what happened:

Tuesday morning when I changed his central line dressing, I noticed that the insertion site was a little inflamed, so when his nurse came over Wednesday I asked her to watch me change the dressing and take a good look at it.  When I took the dressing off, we saw that the last suture had come out.  This wasn't surprising nor should it have been a big deal.  Central line sutures have always irritated Noah and caused a little inflammation which generally clears up as soon as the sutures come out.  The insertion site looked a little loose and seemed to gap open a tiny bit, but the nurse confirmed my sense that this was no real cause for concern.  The line had been in for almost 2 months which is plenty of time for it to embed itself in the chest wall, so the actual security of the line never crossed our minds.  I put on some sterile antibiotic cream just to be on the safe side and made a mental note to check the line again before bedtime.

Noah and I were chatting a few hours later while I was making dinner (his bed is in the playroom which opens right onto the kitchen.)  He mentioned that his tegaderm (dressing on his line) was "stinging a little."  Given how the insertion side had been inflamed, I wasn't really surprised that it would sting a little but told him I'd look at it in just a minute.  Before I could even finish draining the pasta, he told me that his broviac was bleeding.  I ran in to find him bleeding heavily  - the broviac had come out completely and was lying on the bed beside him.  He couldn't tell me how it happened.  He was building all sorts of big ancient Egypt things on his bed and all I can think is that the line got caught on a pyramid or something and just pulled out.  The part of the line that is made to embed in the chest wall looks brand new, and that combined with the fact that he only complained of a little stinging says that the line never did embed.  I don't know why, but all I can guess is that since he's been so sick so much since getting that new line, his body just wasn't healing well.

This was a true emergency.  I put pressure on the wound with a stack of sterile gauze and called our hospice nurse who called Dr. B. who came right over.  We ended up having to call 911.  An ambulance took Noah to our local ER where they were able to start an IV (the paramedic tried but couldn't get one in) and start catching him up on the doses of IV meds he'd been missing.  Once he was stable with an IV and fluids running, he was taken by another ambulance to Palmetto Children's in Columbia SC.  We got to our room at about 2 AM on Thursday and within just a few hours he was in surgery getting a new dual lumen broviac.  We got home Friday night about 8 or 9 o'clock.  Noah is sore and bruised - there was much more bruising with this line placement then we've seen in the past, and he had to have several blood draws, IV attempts, etc.that resulted in bruising and blown veins.

I can't tell you how absolutely heartsick I am about this.  We've always worked so hard to protect his central lines but it truly never crossed my mind that this line wouldn't have adhered by now.  Sadly, the antibiotic cream that I put on to protect his line may have contributed to the dressing being less sticky and therefore not working to hold the line place.  It isn't really the function of the dressing to keep the line from coming out,but I can't help but wonder if this would have happened if I'd skipped the antibiotic.  I know I shouldn't second guess myself, and I know that at the time of the dressing change, infection was the only threat I could see so an antibiotic cream made perfect sense . . . . but it just makes me so sad.

Of course, even in those exhausting and honestly somewhat scary few days, we saw God's grace in blessings.

We are thankful that I was right there in the kitchen just feet from Noah when this happened.  Granted, there is someone within sight of him 24 hours a day, but if this had happened in the middle of the night when he wouldn't have said anything . . . well, I don't even want to think about that.

I'm thankful that Noah's wonderful nurse was here when I did that last dressing change.  If she hadn't, I'd be blaming myself for not calling her.  The fact that she was there reminds me that I really did do all I could.

I'm thankful that we were able to go to a South Carolina hospital just a couple of hours away instead of having to fly to NC.  I don't know how on earth we could have arranged that with Noah needing care so quickly.

I'm thankful that he was welcomed by a hospital and doctors who had never met him and that they got him into surgery so very quickly.

I'm thankful that Noah has stayed so sweet and dear through all of this.  God's grace is so evident in Noah's spirit.  I posted this on FB, but for those who don't read here, let me copy a couple of things that Noah said while he was in the hospital:

"He was SO incredibly brave - every time they had to draw labs, try to start an IV, check blood sugar, etc. he would willingly hold out his arm. He didn't fuss or try to pull away at all, even when they had to wake him up in the middle of the night to draw labs from his arms and hands. (This is a HUGE accomplishment for him!!!)

A nurse commented on how she couldn't even believe that he was holding so still without a fuss, and he told her, "Well, I've had lots of practice being brave." At that point I had to practice being brave because I wanted to start bawling.

Later today he had two nurses working on him when all he wanted to do was sleep, and he told them he loved them. He then told them, "You know why I love nurses? Because you are just trying to help me feel better."

 Mind you, Noah is a typical little 5 year old boy in so many ways, and he's not perfect.  When he's feeling extra yucky, he may refuse to speak to people other than his family and very close friends . . . but when I hear him saying things like that, I'm reminded that the Lord is working in and through him and I can't help but be proud of my sweet boy.


Lastly, I am so, so thankful for the support of friends and family both near and far.  A friend brought our teens home from youth group Wednesday as all of this was happening, served dinner to the children, and helped keep the little ones out of the way of the paramedics.  More friends came over and brought food to Jeff and the children while I was gone, and of course SO many of you prayed for all of us.  Several people who I'd only known online came to the hospital bearing food, coffee, and fellowship.  We are very, very blessed.


Blessings,
Kate


Here are some links to "The Nature of God" by Graham Cooke.  Watching this may be the best 20 minutes you spend all day!!


The Nature of God part 1








The Nature of God part 2