FREEDOM!!!!

This red backpack is the new symbol for FREEDOM and HEALTH in Garrett's life!!! Now he can carry his feeding pump and food in the backpack, he can receive enteral nutrition at a slow, steady rate over as much time as he needs it and still have FREEDOM!!! The backpack is pretty small, smaller than a Jansport backpack lots of kiddos carry to school. At Sierra Trading Post in Boise, I found this pack that is made to carry a hydration system like a Camelbak product. Because of this, it is petite, has lots of convenient pockets, AND has either a plastic clip or Velcro tab in the upper inside large pocket where the feeding bag can hang. There's room for more formula, more feeding bags, syringes and water for flushes and even a small toy or two!! It has both sternum and kidney straps, it fits so he feels secure and he can run and play and even enjoy wearing it!! Sure, people make cute and functional packs made just for this purpose, but I prefer the super-sporty look without clowns or dinosaurs or anything! I found a super-cute pack with trains, cars, trucks and planes, but the background fabric was WHITE. That certainly wouldn't work for this kiddo! He is quite proud of his backpack, truly. I just drop the pump in the bottom, hang the bag inside the top, zip the zippers to the same side with the tubing coming out between the zippers, and if need be, I can run the tube through the kidney strap for added security and safety. So far, he has worn it at home, in the car, to a basketball game, and I don't see him slowing down with this sort of set-up!

I am including the next photo as it shows the new formula we are trying today, Compleat. It is made from real food products instead of being milk based. I hope to transition to blended diet where we purchase a high-power blender and make his food from real food we can then put into his tube, but for now that feels a bit overwhelming. One thing at a time!! Pictured to the left of the formula is the miracle of the AMT Clamp. It has been a sanity-saver!!! I can trust it will hold the feeding bag tubing to the PEG tube hanging out of Garrett so no formula leaks. I am now even able to plug him in to get fed while he sleeps! And that's a huge help considering how many ounces it takes to reach the calorie count he is required.

To answer a few questions:

Can he still eat like other kids?
Yes, he still can and does eat by mouth, but not enough to sustain both daily energy requirements AND growth. Interestingly enough, he seems to be eating somewhat less in the mornings and at night since tube feeding, but more at the lunchtime hour in school. Odd, but we are told it isn't uncommon as his body is relishing every calorie, and eating takes a ton of energy, for him, especially chewing and swallowing. It's like his body is taking some time off and letting the tube help for now. We have been told not to worry since as his body grows and is better sustained, he may start eating more. At this point, food is food, regardless of the method of consumption.

Do you let him eat before you fill him with milk via the tube?
Yes, we always offer him food by mouth before tube feeds. And many times, he will eat via mouth if he wants to while he is tube fed. He will often ping pong back and forth on saying if he is hungry or not, so if he wants to eat by mouth, he is always welcome to do that.

How much formula does he take in?
He is taking in 5-250 mL cans or 1,250 calories of formula per day as we try to get him to a good point for calories.....slowly. This is an art/science that is quite dynamic.

Will he always require this tube, or is it short term?
He had a g-tube when he was about 16 months to 28 months. That one was taken out as he was making great feeding therapy progress, and did not use it for anything for four months. Many times, we have wished we had it back as we watched him struggle growing and eating and taking so many meds and supplements daily.
As for this tube, I think he will keep it for a long time, possibly for a lifetime. While I cannot super-accurately predict the future, I do know one thing: This tube can keep him fed and hydrated in a way that without the tube, only a hospital admission could do. So if he were to get the flu or another illness, we can get things into him in a way that can keep him OUT of the hospital. And while he will HOPEFULLY, someday not rely on the tube as much, if we keep it flushed with water a couple times per day, it will not cause him trouble staying there. At that point, it would be like free insurance! As for his life span, well, that's a tough one. Let's just say we hope this intervention will keep him alive, healthier, as long as possible.

Has this made things easier or harder for HIM?
It has made taking meds and supplements super-easy since he doesn't have to take the yucky stuff by mouth! Sometimes he asks to take some by mouth. I am not sure if that's because some taste good or if we preached tolerance of taking meds and patience for the past five years or because he just wants to sometime. As for feeding? Since he has had the backpack option, he asks to eat that way. I am sure some of that is not wanting to stop playing long enough to eat, but I also sense a relief in his happiness to get plugged in and take the food on the road. The only thing that bugs him is when I have to clean the stoma at the site of the tube. His skin stays a little sensitive, soon, and until it heals like an earring hole at the site, it gets gunky and needs a cleaning with warm water and baby shampoo on Q-tips morning and night. I have ordered g-tube pads to wear between his skin and the tube pieces that keep it from going too far in. He chose Mike and Sully from Monster's Inc., Spiderman, and an assortment from Marvel Comics pads. I look forward to him getting those. For now it's 2" x 2" square, white drain sponges.....fancy word for gauze with a slit to a hole in the middle.

How has this changed care from OUR perspective?
Well, that's a hard one because Grouchy, our extended family and I would do ANYTHING to help this kid stay healthy as long as possible and find relief from the symptoms of Mito. It takes time to add the tube and its cleaning, flushing with water, putting meds through, hooking up feeds, unhooking feeds, and so on. However, I think it takes no more time than it took to chase him down to get him to take meds, beg him to eat, sit with him to encourage him to eat, threaten him to eat, and then who knows how many hours I have spent in worry that he still wasn't growing or getting what he needs. I am in the process of training his two caregivers to use the feeding system, and this summer, my parents will learn. I LOVE the fact I know we are finally coming closer to getting him what he needs!!!

And now the question a couple of folks have been brave enough to ask (and these were very close friends, and it is a super-obvious question most are afraid to ask):
Since September, Garrett has had an appendicostomy so we can put a tube in him to run an enema from the top daily so he can poop on the potty AND he has had a g-tube placed for most of his nutritional needs. Does this mean his health is declining?
It would seem that way, looking from the outside, and while I sometimes get a stomach ache looking at the level of intervening we have done, I don't look at it as disease progression. I consider that we could have kept going with him not having bowel movements for days and days and days followed by poop running down his legs for a whole day per week and wearing diapers 24/7. We could have continued begging him to eat, trying to make enough milkshakes disguising Pediasure so he would eat it, and forcing meds down him, but who was loving that? NO ONE. So I am looking at this like being proactive, although I fear his growth has already suffered, and seeing improved behaviors and sleep, I know we waited too long. But we had to have the docs all on board, and I cannot change the past.
But honestly, it could mean progression, some. His colon had certainly gone downhill. Now it feels all better as we have control of that for now. He has a pretty high number of eosinophils in his esophagus. That's new and not cool. He was eating less and less. That's a bummer. Hmmmm, maybe he is getting worse on the inside, but taking these new measures sure helps him do better from what we see on the outside, so we have to hope it's improving inside too!!!

So there's the update! That was long!! And wait, I didn't even put in a picture of the cutest boy on the planet!! Here is Garrett in the tub with his best buddy, Sammy:

God is good, we cannot imagine all He is doing for us when we are too busy worrying and waiting!!!! Blessings to each of you, and thank you for checking in on our hero!!!

Godspeed,

CL

No Dogs On the Sofa

We weren't going to be one of "those" families. Okay, maybe I was borderline, but Grouchy would NEVER allow our home to be one where mutts and kitties were on the sofa!! But then this happened: Sammy. This precious soul is not only the sweetest dog, kindest companion, and best buddy to Garrett, but lately, she has started showing some protective instincts by alerting us when someone is at the door. I love that about her!! But in this photo, she looks so regal, so intentional, so "at work" guarding our precious boy who plays in the background, not knowing that she has his back, no matter what or whom!!

God made these animals extra special, I know. They show us not only God's fun, creative side, but also His loyalty, forgiveness, and desire to just BE WITH US.

And yes, that photo above shows the spot Sammy reports to on the sofa when Garrett is anywhere in front of the sofa (or when we are not home ;) )

Godspeed,
CL

AMT Clamp is an amazing invention!!

THANK YOU, friends, for putting me on to the AMT clamp!! I picked up two from our local medical supply company, and Garrett is now playing the Wii while plugged into his nighttime feed, and now I will even be able to put him to bed "eating!"

I have the formula all cleaned up from many geysers over the past two weeks, and I was about to give up on the pump! However, I had purchased a way-cool backpack at the outdoors store, and Garrett LOVES getting to eat "on the run."

I will smile in my sleep tonight knowing I have these clamps. Life is much simpler now!!

Again, THANK YOU to each of you who put me in the right direction!! You guys ROCK!!!

CL

Grrr....PEG not fitting enteral bag.

First, if you have a tubie, please chime in if you think you may have any ideas on this challenge!!

Since Garrett's g-tube surgery on December 20, we have had a Kangaroo Joey pump and enteral feeding bags that theoretically fit the tube he has until a button replaces it on the seventh of February. Gravity feeds have worked well...also called bolus feeds. We open a can of formula and attach a 60 mL syringe to his tube and pour the food right in. It is relatively fast, but he has to stand very still and be pretty quiet so it runs smoothly. This week, however, I saw the simplicity of the pump and the ability to feed him while he sleeps as beautiful things. He is up to four and a half cans of Pediasure Enteral formula with fiber. It truly is a challenge to get that into him by gravity/bolus feeds so far. He has to try to eat by mouth first, then after that, I will put formula into him. But we are having a problem. The fitting that should work smoothly between his tube and the feeding bag just doesn't hold...usually. It's plastic make piece into a silicone female piece, and 3/4 times the fittings just pop apart! I adjusted feed rate, cleaned fittings, and still no luck. I even took an empty enteral feeding bag and tried to fit it to his tube with the tube clamped off, so no pressure. Still, no deal. Tonight, I tried to put the feeding bag piece into a smaller silicone female port used for meds, and that worked, but the cap for the larger feeding port would pop open!! I taped it like crazy, and it worked, sort-of. Had a sticky, milky mess to clean when I disconnected it all!

I bought Garrett a really nice backpack for this pump purpose. It is a Gregory brand and is read, and it is perfect for him. It has a sternum strap and kidney strap so that he can be super-active while he is fed via pump. He loves to show people how he can "eat and play," and I find it simple and much less restrictive.....when it works!!

I spoke to our NORCO feeding rep, and he said the lady we need to chat with isn't on call this weekend. Bummer. However, Monday we will tackle this!! I am told things will be easier for connections when he has a button. I sure hope so!! But no matter, I am thankful that this tube is present and my boy is thriving.

Godspeed,
CL

HAPPY 2014!

 After a year ending with two surgeries and lots of love and healing, weight loss, appetite diminishing, and shaky new ground, I am thrilled to show you my big boy at the Christmas Eve candlelight service at our home church, Deer Flat. I know that he knows the Lord and does not fear God or the future. I can ask for nothing more!!!

 So here are a few of my favorite folks: Ainslee-11, Garrett-8, Addie-13

 And this photo is a more fair representation of each of them!!

 My girls are our rocks. They have love, joy and peace....PEACE!

 I am honored to be this cool kid's mom!! It's tough defending a superhero, but I wouldn't trade him for anything!!

 And here is my brave boy after his g-tube was placed 11 days ago. He was so brave!!
The tube feeds are going great with bolus feeds working, so no need for the pump. His stoma looks wonderful, and we see the surgeon tomorrow for a two-week follow-up. In about a month, he will go back into the hospital for general anesthesia to change the tube to a button and have another esophageal biopsy done to see if the antacid have reduced the eosinophils in his esophagus as of his tube placement. If so, we will continue the Prilosec, but if not, will change drug to treat eosinophilic esophagitis. It's something treatable either way, but something new-ish, and new issues means new change, and this isn't good change. But he is a cute, brave trooper!

And I end with this image that started this entry. I hope the peace, love, joy and hope of Jesus Christ resides in your heart and in your home. Without that love, none of this would make any sense. And as I age and mature each year, I sense God's purpose and presence in our home more and more. Here's to a year of rightly-aligned priorities, Christ-focused parenting, lots of love and patience, and excitement about life's next adventures!!!

Godspeed,
CL

Mommy Instinct Wins Again!

Not sure learning my son needs his second g-tube in his life is necessarily something most would chalk up as a "win," but in this case, I count is as such.

Garrett and I flew to Seattle Monday. His appointment with his Mito doc was Tuesday morning. We just flew back home last night.

Tuesday, I finally got confirmation of what my mommy-instinct has told me for at least 9 months. Garrett's brain nor body are getting what they need nutritionally. Dr. Saneto led me through the thought process of how Mito can affect each person differently.....again, today in Seattle. It seems like Garrett's brain is most affected by Mito, now that his colon is better (or just being manually flushed) because of the ACE procedure that is working beautifully to keep his colon emptied. Before the ACE, his colon was certainly a big mess, but the brain was probably equally affected or maybe a close second.  I have felt that his brain may need better nutrition. His muscles, while very small and somewhat low tone, are very much a priority, it seems. He has tons of energy, albeit not governed or controlled very well at all. Then there are all the internal organs that seem to be functioning quite well, and it looks like his brain must get the leftovers. Throughout the past year(s), his weight has climbed and dropped a few times, but he has never had a true growth spurt of weight or ever looked "great." He is just so thin. He would go through times when he would eat better, and then he would slump, and then it would improve. Last spring, we trialed him off a couple of his mental medicines, but his behaviors showed us he needed them and that they had been working wonderfully. False hope I had that he had improved so much we could drop some drugs. Then we saw his appetite go away, but thought it was due to stopping one of the mental meds that also stimulated appetite. We restarted the drug that stimulates appetite with hopes he would eat again, and while he did eat some, he didn't go back up to the appetite he had prior to stopping the med. Out G.I. specialist wonders if this whole time his colon wasn't worsening. Maybe so. Meanwhile, as the ACE procedure came up as an option for Garrett, I asked the pesky g-tube question. Knowing about the g-tube from Garrett's tube that saved his life and made him finally grow when he was about 16 months, I knew what a wonderful tool it could be and wasn't fearful of it. G.I. said to ask surgery. Surgeon said he would like to do g-tube and ACE together to ensure best possible ACE result of intake of fluids and food to keep things moving through his system, but then asked if Garrett seemed to eat better after he finally pooped using lots of meds and laxatives to get the poop out. There seemed to be a good correlation, so we called off the g-tube. I am glad we did, truly. Now we know that the ACE alone doesn't give what it needed to get Garrett to eat. Apparently, appetite and empty colon are not as closely related as we once thought. So I asked the g-tube question of G.I. again last week, but we see in Garrett's growth that he is back to his weight he was a year ago and has started a tiny growth upward. This growth aside, I still wonder if we will see improvement in Garrett's ticks and mental issues once he gets better nutrition on board. We throw food at him as much as we can. He has a therapist/aide here in our home 6 evenings per week to feed and help him, and still, he isn't picking up on the eating, even with one to one help and encouragement. Seems his eating comes in these evening spurts, and that's mostly it. He eats some breakfast and some at school, but given his level of physical activity, he should be cleaning out out pantry daily!!!

So there, I am excited to see if this can help our boy. It's the last thing I know of that we haven't recently tried. How I would love to see the wheels greased in that noggin of his and know that he has what he needs to learn, grow and enjoy life!! I don't care if he stays thin....but I want to know that he has what he NEEDS to power his brain and organs. For a Mito kid, thin is okay. It means less to have to power with the limited energy resources. But greying-out power to the brain...not cool.

So the consensus, with the man I trust most with Garrett's health, was to get a g-tube placed within the next month along with a skin biopsy that can be used for future testing and possibly NIH EPI-743 research. We will fly back to Seattle for that to all happen at once and probably be there only a couple of days.

On a totally wonderful note, Garrett and I had a blast on our 18 hour trek to Seattle. We found the LEGO store! We bought a LEGO set and spent Monday night in our hotel room eating McDonalds (Garrett ate two nuggets and drank 1/2 his milkshake) and building a LEGO set together!! It was so dreamy to just focus on him and have no distractions or duties aside from him. Then after his appointment, we found a Chuck E Cheese and played a game and ate (a 4 inch section of a breadstick for Garrett). Next, we headed to return the car and fly back to Boise where we took ten minutes to play on the Boise airport's little play area because we missed it on the way out of town. We got home in time to play the Wii for a bit, chase his sisters around, let Daddy-O play the tickle game with Garrett, and Garrett slept like a rock!!! He did struggle to settle down for sleep, but I think he was just excited to be home!!!!

Godspeed,
CL

Reality Is Heavy, Very Heavy

I read on a post tonight that having a child with a progressive or terminal illness is a "rehearsal with grief." Wow, I have never heard it put quite like that, but it is so perfectly stated. It's like there is this normal life, the one with stress, worry, fear, day to day rush, financial concerns and goals, pressure from so many directions. Then there is this "real" life. That's the one where I believe I have found. It's the one where the financial concerns cannot be that important. The choices of where to live or what to do when I grow up are completely null and void. It just all doesn't matter.  The stress, worry and fear of the future, well, they are just that, they are in the future, and I cannot change that. I often joke with Grouchy (my angel of a husband in this life) that he has stressors of job, home, taxes and on and on, and I have what I call job security: Garrett. It sounds kind of funny or even heartless, but it is the truth. And with that job comes some psychological torment I cannot adequately describe but that raising my son is sometimes a dress rehearsal with grief.

I had a haunted night a few nights ago, and this post is my attempt to share my thoughts, get some things processed by typing them out, and allow myself to go to some places I know I do not need to stray to often, but that keep my perspective and hope in eternal life with my Savior and my loved ones in the very focused forefront of my life and my family's.

All last night I would wake trying to put adjectives in a long train to try my best to describe what my evening was like two days prior. I just couldn't. Addie was in bed reading. Garrett was snuggled up under his soft blankets sleeping soundly, and because Grouchy was away, Ainslee had curled up on his side of our bed and fallen into dreamland. I innocently migrated to my computer where a post from a dad whose son died last year popped up. His son was just ten years old when he died from Duchenne MD. And like I frequently do, I got a bit caught up reading other posts by this same dad about his son and family. After about ten minutes of reading, my cheeks were quite warm from the tears.

Last week, two children with Mitochondrial Disease went to Heaven. That, of course, is heavy on my heart. Then watching the posts from the dad.....photos that were so touching and others haunting; I was deeply affected. Once can argue that maybe it is unhealthy to walk alongside those recently stricken with grief, but in some strange way, I feel if this is a rehearsal, then I should do due diligence by taking it all in and processing what I can.

Then there are those times when I forget what Mito is, that my son has it, and that it could be haunting us at all. But then there are more times recently when I move from a mom who has a "delayed" child to the reality that mito has caused my child to have mental deficits, ADHD, Autism, not grow properly, have low muscle tone, and now have to poop by having his colon manually flushed through his belly button stoma into his appendix, then on down. Holy crap, has this disease affected my son. And the effects will not go away. Ever.

That night, I went from my computer to my bathroom where I felt my chest had been caved in by a large brick, and the tears erupted, poured, spewed..... It was horrible!!! I was, for the first time, truly up close and personal with the truth of our son's disease and the reality I thought I had faced, well, it showed up dressed much differently than I expected. I rushed to Garrett's room where I dove into bed with him and just held him, kissed him and wept and wept. I felt I needed to tell him I was sorry. Not for what he has, but how I have managed him. I whispered to him all the things I thought I want him to know, things he cannot comprehend yet. While it seems romantic to share all of my thoughts and love personally, directly to Garrett, I cannot do that in the way a parent of a mentally typical kiddo could. Garrett still doesn't and likely will never will process like we do, understand all the words, the apologies, the reasoning. However, in all I do, I vow he will see my love for him in every step I take, medicine I give and even mess that I clean up.

Last night it was real. Mito was a big, fat, ugly elephant in my world, and I begged him to leave!!! After praying and holding my little hero for a half hour or so after the tear faucet shut off, I headed to my bed too. Sleep was welcome, but more welcome was the sound of Garrett's feet running to my room and climbing on top of me with,"Mom, can I play the Wii quietly?" at 5:45 in the morning.  I truly should never complain about those too-early mornings. Every second counts.

Reality is harsh, and I am not ready for what is to come!!! And it is coming true right now to two families laying their Mito sons to rest while they are mere boys. Please focus your prayers on them in the weeks to come as the rehearsal with grief becomes hell on this earth.