Wednesday, August 20, 2014

Stream of Consciousness

So it's been a crazy medical month.

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Gavin is still on steroids. I know I haven't blogged much, but he's been on them for almost 3 months to no avail. He's had a TON of doctor's appointments and he has a TON more.

It's crazy because we had almost 18 whole months of greatness--it was almost like he didn't have a disease as long as he took all of his meds--and then BAM! The good stability decided to take a hiatus. We SO hope it's temporary, but in the meantime, we're fighting the good fight.

Tim and I will be taking him to our children's hospital for all day cardiac and pulmonary (lung) testing and an IV start on Friday. He will also get at least 1 liter of IV fluids to help give his body a boost. We are using regular IV's instead of getting an 11th PICC line for now and we will see where that takes us. We are hoping since summer is ending, he will get better and we'll get away with not needing to place his 11th PICC line because summer, with its heat and humidity, has always been his biggest masto trigger since he was a baby and it's now coming to an end.

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Unfortunately, he will need to be hospitalized again in the next month or so for a ton of testing that involves taking internal tissue biopsies inside his throat, airway, lungs, esophagus, stomach, and intestines under general anesthesia. Because he has Mastocytosis, he has to be admitted at least one night prior and stay 1-3 nights after. They also will be measuring his gastric acid levels with a probe that goes down his nose into his esophagus and stomach for 24-48 hours (he will hate that part the most), and evaluating all of his new and troubling and persistent symptoms that forced him to start high dose steroids almost 3 months ago so that we can hopefully determine their cause and dare I say, find a treatment that doesn't involve steroids? Lord-willing!

The kicker is that he has to go ON high dose steroids before ANY procedures, so even if we successfully get him off of them, and if it's scheduled after that happens, he'll have to go back on them to protect him from Mastocytosis induced anaphylaxis to anesthesia and all the stress of the procedures on his body, and then wean off again.

It's a lot. And the extra bummer part is that his "Weaning Off Of Steroids" schedule has him completely off of it right after school starts. Not a fabulous time! But at least we homeschool. :)

AND it will be our **5th** attempt. The first 4 attempts to go off of them failed and the 4th one was such a miserable catastrophe of a failure that we had to rush him to the ER and he ended up getting admitted for a few days in order to re-stabilize him with even stronger IV steroid doses and round-the-clock IV fluids (it was a few weeks ago). Then he was discharged and put back on high dose oral steroids for the 5th time.

So for this 5th attempt at getting him off of them, we are going to use IV fluids to try to help his body remain stable while it attempts to re-adjust and perform it's normal functions on its own without the help of steroids.

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This is the first time we are going to use IV fluids to ease the transition on his body because his body has clearly demonstrated over and over again that it can't handle being off of them, at least without assistance...so we SO hope and pray that THIS time will be THE time that WORKS.

IV fluids has always helped him before; that's why he's had a port-a-cath and 10 PICC lines. We've been using IV fluids to stabilize him since he was 18 months old and he's now almost 9 and a half. It helped him tremendously in the hospital a few weeks ago and we SO pray it will help him now.

I've been kind of an emotional mess about the whole thing though. It's really hard to see my sweet boy get so sick again when everything was under "control" for so long. He was doing so well he had gotten down to taking only 12 doses of medications a day--and now? He takes a whopping 38 doses a day of only the daily meds--add in the as needed meds which are now needed a lot, and it's upward to 45 doses in one day in one 9 year old body. 

I know that this is par for the course when you live with a chronic disease but it doesn't make it easier to experience. 

It doesn't make it hurt less. It doesn't take away my anger and frustration. It doesn't make me fear less; it just makes me more hurt, and angry and frustrated and fearful.

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However, I've come to recognize that fear is something I will always have to fight against--it's what I struggle with the most in this life--and this new flare-up is giving me the opportunity to strengthen my faith in the Lord all the more so that through Him and in Him, perhaps I will learn to not fear. It will likely be a life-long process--this learning not to fear part--but it's a lesson worth learning nonetheless.

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Now that Gavin is older, he has been able to express his frustration with it. That's good because he needs to be able to do that but it's great because it's been an opening to discuss a dependence on Jesus. That part is sweet, and even though he's expressed even anger at times, at what he calls his "stupid body" and his "stupid meds", (which makes me sad), he's also been able to shine in ways I admire. 

He generally takes it all in stride--not fearing--but trusting and assuming everything will always end up being okay. I love that about him; I have come to believe that children who suffer with a severe illness are given a very special personality from God--one that gives them what they need to endure and smile when an adult would curl up into a ball and implode. Every chronically ill child I have ever met inspires me to maintain a child-like faith, the kind of faith that is treasured in the Bible. Don't misunderstand, my son has his moments as he's human, but more often than not he just plain amazes me.

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Of course, since I have Mastocytosis too, the emotional and physical stress got to me and tipped my body over the edge.

Which means I got sick too--Mastocytosis sick AND a bad head cold turned severe bacterial sinus and throat infection sick; but with IV fluids through my trusty port, a lot of rest, extra meds, and now antibiotics, I am trying to recover from it.

In the midst of that, I have been preparing and planning for the beginning of our new homeschool year, doing photo shoots, editing photos, completing design jobs, driving my almost teenage daughter around to her various MSM events (middle school ministry youth group--super awesome!) and of course, being a nurse to myself and my son. Then there's the normal wife and mom stuff on top of all that.

C-R-A-Z-Y.

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So I don't have a lot of cute and fun instagram pictures for this post but we all know life is not always fun and cute and peachy. Sometimes it's hard and sometimes it sucks (please excuse the word if it offends you), but sometimes God is only able to teach us what He wants us to know when life is tough. So I'm keeping my eyes, ears, and heart open in the hopes that I will discover what He wants to reveal. 

Throughout all this though, I am encouraged most by the truth that this suffering is temporary--that this world isn't all there is--because as Christians, we always have the hope of Christ. We always have His promise to return and make all things new to hang onto. Romans 8 is a constant encouragement to me when I am down--it empowers me to trust instead of fear through the work of the Holy Spirit in my heart, mind and soul, and it puts our current suffering into perspective.

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Here's a snippet of Romans 8 but I SO encourage you to read the whole thing, especially if you are suffering today.

{Carla G. Design and Photography}

I made a song list on iTunes for when I am feeling anxious, discouraged and even depressed. One of the songs that's on there is a new one by Casting Crowns called "Just Be Held". It's on their new album called "Thrive" and it is AH-mazing. Anyway, the song "Just Be Held" makes me cry every time, but it's a refreshing cry that rejuvenates my faith and a cry that comforts me because the lyrics give words to the thoughts in my heart. You can listen and see the lyrics here, and I hope you do...it's beautiful.



I hope the lyrics minister to your heart as it does mine and above all, I pray that we all can be comforted by the Lord of Heaven and Earth....

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The One who made all this above and loves us more than we can fathom--even IN our earthly {but temporary} suffering.

xoxo

Tuesday, August 5, 2014

Instagram Summer 2, An ER Hospital Visit, and Faith

While Chelsea was gone for a week at a Christian Camp with our middle school and high school ministries, I decided to plan a fun week for Gavin. He went to the movies with his friends, and then we went here--Mud Park. They have tree houses they can build on to with real hammers, saws, and nails (oh my!);

lots of crazy boys... {Gavin and two of his best buddies!}

a rope bridge over muddy water,

and rafting Tom Sawyer style.

These monkeys that we went with had a blast.

Meanwhile, Chelsea was here...(seen here with her besties, but she is on the far left of the screen)

having a blast!

She came home and we were ecstatic to see her as she was to see all of us.

But about 5 hours after she got home, Gavin had a huge Mastocytosis flare-up; so we had to drop everything (at 10:30 pm), page the on-call doctor, and then follow her directions to take him to the ER over an hour away immediately. We dropped Chelsea off (with tears) at my parent's house and then Tim, Gavin and I headed to the hospital. When we arrived at midnight, they took him right back and he was admitted right away. We didn't get into our own room until 2:30am and Tim and I stayed up basically all night. Gavin is seen here below, finally calm from all the IV medications they started him on.

It was so scary. He hasn't reacted like this in a long time and it was all SO sudden and unexpected and it all happened so fast. He started with muscular-skeletal pain that prevented him from walking, then he got a migraine headache. His vision went blurry and he was seeing floaters. Then he got severely nauseus. I gave him benadryl, zofran, and tylenol but his symptoms continued to get worse. He spiked a 104 fever, grew very pale, dizzy, and lethargic, and when I took his vitals, he was mildly hypotensive, moderately tacchycardic, his respirations were significantly increased, and his oxygen saturations in his blood were mildly low.

But the Lord was with us and protected our sweet boy...He sustained him until we got to the ER and allowed the IV medications and fluids to work. It was the first time I panicked in a long time but because of the Lord's great grace and mercy, I was able to shift my eyes onto Him and off of the situation, take some deep breaths and decide to trust Him with it. I am so glad that the Lord strengthened me to do that. I was able to calm down and feel some peace.  

The next morning, he was like a new kid. :)  He had received 2 liters of IV fluids and within 24 hours, 180mg of IV steroids. Whoo! That's a lot. But it worked. Because of the severity of his condition when he arrived, they wanted to keep him for an additional night to continue giving him IV steroids every 6 hours and round the clock IV fluids. We agreed.
A whole additional 24 hours stabilized him...
and while we were going stir crazy at the end of it,

we got to be discharged yesterday. Note the happy faces below! :)

Now he has to be on high dose oral steroids for the next 6-8 weeks. :( While it makes him feel better, I can't help but worry about the side effects--it's something that I have to completely surrender to the Lord's care because it's beyond my ability to do anything else.

So while we don't know what the future holds for him--as his health has steadily been declining all summer and he's on more meds now than he has been ever--we do know one thing for sure: the Lord is our anchor in this current storm and we will continue to trust Him to keep us completely firm and secure as we ride it out.

We know that in time, this too, shall pass.

Wednesday, July 30, 2014

Our Instagram Summer

I keep my Instagram account private and only allow those I am friends with to follow me because I use details about where we are exactly in the universe and I don't wish to include that for everyone to see. However, since I now finally have my first iPhone (a 5S--I LOVE it!!!) and have started using it as my primary day to day camera because it rocks, I decided that there isn't any reason why I can't post the pictures on here without those said details. So I am and here they are. You're welcome. :)  

{My 40th Birthday} 
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{A beautiful end to a perfect day.}image
{Celebrating Tim's life}
{4th of July}


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{Lots and lots of inhalers and nebulizer treatments and oral steroids and several outpatient visits to the children's hospital and he's now back on every med he's ever been on in his life plus more than ever before, but here below, we're taking it with a smile. We're choosing joy, making the best of it, and learning to laugh at our give life. When the only alternative is to get mad or cry, we decided laughing was the best choice. More to come on his medical status in a future post soon.}
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{Our dog turned 10} :)
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{Beach nights with bonfires}
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{morning surf checks}
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{tons of beach days with friends}
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{More trips to the children's hospital clinic but still choosing joy because some progress has been made}
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{lots of visits to Nana and Papa's--my parent's--house and enjoying sunset views from there}
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{Chelsea leaving for a week long trip to a Christian camp with the middle school and high school ministries at our church}
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{saying good-bye--don't let his smile deceive you, he's cried more than once since she left}
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{their stylin' ride}
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{Mommy-Gavin time and enjoying every minute of it til big sister comes back}
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{Ending each day with this. Pure Heaven on Earth.}
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All pictures were taken on my iPhone 5S using the VSCO cam app; edited there, saved to my camera roll and them sometimes opened up in the Rhonna Design app to decorate or write on. Swoon. I'm in love.

How's your summer?