slightly smoother sailing ahead?

We had a great meeting at the house Friday night with Dr. B. and the three head pediatric nurses from our hospice program.  We basically went over Noah's medication list, current symptoms, past issues that have resolved or responded to meds, etc., and evaluated each one.  Quite a few meds were prescribed during Noah's last two acute illnesses and we wanted to see which ones could be weaned off and which ones needed to be continued.

We'd already begun weaning off his kytril/decadron mixture (anti-nausea med and steroid) at the instructions of the endocrinologist.  He'll be seeing the endocrinologist next week but needs to have gone ten days without steroids in order for the tests to be accurate.  That mixture took over an hour four times a day, so knocking that off his meds list really freed up the med schedule quite a bit.  During the meeting, we all agreed to try weaning some of the other meds - mostly anti-nausea meds - to see what he can tolerate.  We don't want to take away anything he NEEDS, and if he starts to show symptoms during any weans, we'll go right back up, but for his sake and ours, we we want to do as few IV meds as possible.

Dr. B. also wants to start Noah on a methadone PCA (pain pump).  Right now we give the methadone on a syringe pump every 8 hours.  It's one of the more time consuming meds to fix, and we're excited about this change.  It should provide better pain coverage for Noah since the methadone will run continuously and Noah will also be able to push his pain button to get small extra doses.  It will also free up our schedule significantly and, combined with the other changes, add a couple of hours of potential sleep for Jeff and I.  I'm not trying to imply that our needs should come first AT ALL, but until just a little while ago we were fixing and administering about 35 doses of IV meds every 24 hours.  It was a herculean job and one that allowed for very little sleep.  (In fact, when he was at his worst during this last acute illness, one of us had to stay awake all night every night due to the level of care he needed.)  While I'd gladly forgo sleep forever to keep Noah comfortable and safe, it is such a relief that things are going to be approaching a more reasonable level!

You might be wondering where this leaves us if/when he does get sick again - actually, it leaves us better situated than ever.  Dr. B gave the hospice nurses "standing orders" for every med other than antibiotics that we are weaning or that we've used during acute illness at home, and gave them standing orders for other things like rapid fluid boluses and similar treatments for acute illness.  This will allow our team to respond very, very rapidly - if Noah spikes a fever, all it will take is a call to a hospice nurse to get things rolling.  We'll be able to make some changes immediately using supplies we have on hand and the nurse will be able to contact our infusion company to immediately order additional meds and supplies.  Honestly, Jeff and I have been amazed at how quickly Dr. B and the rest of our team have been able to make things happen when Noah's been getting sick - everything from labs and other tests to medicines and therapies have been done and delivered far more quickly here than if we'd packed up and gone to the hospital.  This new set of standing orders will allow things to happen even faster!

All in all, Noah's doing pretty well.  He soaked his bed on Tuesday night/Wednesday morning and I awoke to find him utterly drenched and his central line dressing soaked to the point of coming off.  His urine is fully infected with MRSA and another bacteria, so we were all pretty concerned about the "MRSA bath" that his line site took.  The site was already looking kind of red and angry, and it's definitely worse now, but Noah does not have a fever so any infection that might be brewing there is localized.  We'll be treating his line with silvadone and watching it very closely.


We'll be starting some PT (physical therapy) here at home soon.  A visit to Noah's orthopedist last week confirmed that he has contractures in his knees that no longer allow him to straighten his legs fully.  His feet are also pulled back (ankles toward the backs of his calves) and he cannot bring his toes toward his shins far enough to have the 90 degree angle we would have when standing.  He's not really capable of walking at all at this point - he could honestly barely stumble/hobble a couple of feet for the orthopedist, and that was with a death grip on Jeff.  The goal right now is to do some gentle range of motion stuff to try to slow or even stop the worsening in his legs.  The orthopedist feels very strongly (as do our nurses and Dr. B) that we can't even think about gaining back what has been lost unless/until we can get Noah healthier overall.  We've been blessed that he hasn't really struggled with issues like this until now - many children with mito face these sorts of struggles much earlier.  We'll meet with the orthopedist in 11 weeks and decide where to go from there.

We are enjoying this more stable, relatively crisis-free time SO much.  Even though Noah can't run around like he used to, he finds great pleasure in playing with his Legos and other toys, watching DVD's, being read to, doing crafts, and just living his life to the fullest he can.  He seems to get sweeter every day and we cherish ever minute we have with him!!

Any time left over after homeschooling, caring for Noah, and doing all of the other daily "stuff" of life has been given to working on Noah's Hands of Hope.  (Seriously easier than it sounds as I can accomplish a lot on my laptop while sitting in Noah's room waiting for meds to infuse.) It is truly amazing how much we have accomplished in the three weeks since our first board meeting.  All the glory for this goes to the Lord!!  We've started organizing volunteers, done our 501c3 paperwork, packed up and sent packages of goodies for children when they are hospitalized, gotten our bead program up and running, helped our member families with gas/food cards for long trips, helped three families with birthday celebrations for their children, and provided meals for families being discharged from the hospital so mom won't have to cook dinner the night she gets home.  Right now we are in a big push to raise as much capital as possible by Friday.  We're having a board of directors meeting on Saturday and decisions such as how many families to add from our waiting list and which new programs to implement will be based on how much money we have raised by then.

We're raising money primarily through a Fundrazr app and a Chip-In app, either of which can be imbedded in blogs.  The Fundraizer can also be shared on Facebook.

This is the Fundrazr app.  It's live, meaning you can click on it to see the video of Noah, give securely, etc.  If you would like to add this app to your blog (it can go on the sidebar or in the body of a post like I've done here), just paste in this code:

Give

If you are on Facebook, you can see the app on my FB page and can use the share button to get the app on your wall.   The Chip-In app can be seen on the Noah's Hands of Hope website, and it has a button that you can click to get the code so you can put it on your site if desired.

Give

Please pray about what you can do to help.  I know that you all care very deeply about Noah and that you come here to read updates about him, not to hear fundraising pitches  . . .  but there are SO, SO many other children out there who are as sick or sicker than Noah.  Their families are in the fight of their lives and some of them are fighting almost all alone.   Very few of them have the kind of support that we've been blessed to have, but with just a little help from you we can continue to help more and more of them in ever-increasing ways.  Please prayerfully consider a financial gift - even $5 makes a difference!  Whether you can give or not, if every single one of your shared about this on Facebook and your blogs, twitter, etc., we could make a huge difference.

While I'm talking about fundraising, here's a heads-up - in a couple of weeks we'll be having an online auction to benefit Noah's Hands of Hope .  We'll be looking for donations of all sorts of goods and items from gift baskets to handmade items to collectables - basically anything that someone might want to buy!  I'll post with the details and the URL of the auction site soon, but wanted to throw this out right now so you could be thinking/praying about this.  It might be that you cannot give financially or have only a few dollars to give, but have some yarn, fabric, beads, etc. sitting around that could be used to make something that will sell for a nice sum at the auction.

Thank you for sticking it out through this entire update.  Your prayers and support mean more to us than you can ever, ever imagine, and we are so blessed to have all of you!

Blessings,
Kate
 

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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

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