Sunday, October 19, 2014

Before and After G-Tube: Disturbing and Encouraging

One Year Can Change Everything

When Garrett was one, he had a g-button place when he had his first muscle biopsy. He had withered from a 98th percentile newborn and one month old to a 16 month old beneath every curve of the growth chart. A year later, he had learned through therapy and time how to eat and drink besides nursing, and so the button was removed. Here is a photo about a week after his first button was removed. 




Last year, we found ourselves back in a place where Garrett wasn't thriving. He hadn't grown in a year and a half. If you know much about Mito or don't but can just use some common sense, take a moment to think about how much better a person's body handles stress when it is fit and healthy versus when it is not nourished well. That's the place Garrett landed: not fit, failing to thrive at age eight, once again. Every doctor who saw Garrett would enter the exam room to a cute boy without a shirt on because it was obvious to me he didn't look good. But no one wanted to take the next step. Finally, in Seattle last November, the Mito specialist noted he hadn't grown in over a year and asked what I thought should be done. We had been through nutritionists, GI and all that, but nothing was helping Garrett enough. I said I thought it was time for a feeding tube, and with a confident "Let's do it!" I had the agreement of the doctor I respect the most when it comes to Mitochondrial Disease. We headed home, met again with GI who sent us to a brilliant surgeon, Dr. Curnow, and off we went! Prior to this, Garrett had an appendicostomy in September of the same year, so we knew they surgeon well. The surgeon initially wanted to do a g-tube with the appendicostomy surgery, but the GI specialist wanted to wait and see if Garrett being able to empty his bowels daily would help him feel more like more food intake by mouth. It didn't help much at all that we could see from September to December. So a week before Christmas, the g-tube was placed, and then about 10 weeks later, it was replaced with a Mini One button. He started on an additional 1250 calories in addition to his oral intake of foods, and now we are down to 750 additional calories per day unless it is a strenuous day or he isn't eating well, in which case we can up to 1000 or even 1250 if we feel it necessary. He started off on the pump, but he handled bolus feeding so well that we just pour formula in each time he takes his meds. He uses a food-based formula, Pediatric Compleat.

Below is a before and after that I share to show the difference a year can make. The photo on the left is August 2013 when I checked on him at midnight and found him curled up beneath the covers and lying in a bed that was soiled from the stool he had leaked all day after being constipated for 6 days. On the right is Garrett August 2014 after 7.5 months with the g-button and almost a year with the appendicostomy. I photoshopped some soiled bedding out of the left photo, and since it took me a while to get that done, I didn't share this before I shared another before and after collage. This one takes the cake. This one shows how horrible he looked. Earlier that day he looked this tiny but pregnant as his tummy was so distended from holding 6 days of stool as his colon was not moving. 

Many people have asked why he has the tube. That's simple: He cannot take in enough calories orally to sustain growth and development.

Some have asked excitedly when he will be able to "get rid" of it. The answer is probably never. It will likely be a part of his "normal" for his lifetime. This little apparatus has saved his life twice. It gives us access for meds if needed, additional hydration, and life-giving calories. Odds are he will need it in an increasing fashion as time goes on, but for now we rejoice in the help that it is as we are able to wean him down a tad! Miraculous!

Some ask why he needs it if he looks so great! I get it, but just check out the before and after, and you can easily SEE the answer to that one!

August 2013/ August 2014

As always and above all, I praise God for not only Garrett's health, but for the life of every person who struggles with Mito, each person who prays for Garrett and those who may not even know that in their disbelief of God, their thoughts and well-wishes for Garrett are heard by our Creator!!!

More blogs to come on more great things happening out here in Idaho, especially for our son! For now I will rest my head in eternal gratefulness for the miracle that is each and every child!!!

Godspeed,
Clara-Leigh

Saturday, October 18, 2014

In Disbelief I Get To Write This!

I am in absolute awe and disbelief that I get the opportunity to even think about writing this post, let alone actually sit here processing the words through the keys to share with you!

Nine years ago we had no idea what a special kiddo our son would be. While I was expecting Garrett, it was placed on my heart that something would be different about him, but I couldn't pinpoint what it could be. I just knew he would be special needs of some form.

Five years ago, I had no idea if he would ever talk, carry on a conversation, follow instructions, use the toilet, or even have much in the way of happy relationship with anyone years down the road.

Four years ago, we were informed that he had Mitochondrial Disease and was mentally retarded. We were told that he could make it to his 20's, but by then it would be really bad as he will take a downhill turn sometime before then.

And not here we are at age nine with so many glorious miracles surrounding our child!

So how's Garrett?

GARRETT IS AMAZING!
I will list some of the things going on that have us so excited and busy!

1. Garrett is reading. And I don't mean reading three letter words, but READING! He is sounding out two syllable words and reading signs and books we never imagined he would read! He even fussed at me for passing a restaurant sign too quickly before he could read it saying, "MOM, you need to stop in the middle of the road so I can finish reading that. I want to go eat there one day, so I need to read the name!"

2. Garrett has gone for a week wearing NO diaper at night! He is in big boy undies all night and staying DRY!!!!! THIS IS MAJOR NEWS!!!! We anticipate some mornings with wetness, but we just keep layers of chucks and fitted sheets so those mornings aren't dramatic. We couldn't be happier about this! His self esteem is through the ROOF!

3. Garrett brightens people's days. He just says "hi" or "I want to marry you" or "I love you," and he can make even the toughest exterior warm!!!

4. Garrett is in "big kid church" now on Sundays at Deer Flat. We wavered on the right time to send him from the preschool area to an area with more noise, more movement and less adult-student ratio, but he is loving it, and we are so excited for him and thankful for a church family that loves him for who he is and sees the amazing inside him! God is right there out front of that kid!

5. Garrett is asking to get a bike! He has had all sorts of tricycles, but this week he began to ask for a bike with training wheels. He is so thrilled about it, and I can't wait to take him shopping!

6. Garrett is riding the gas-powered 4-wheeler by himself all over our place! Now it's past irrigation season, he can go all across our alfalfa field by the house, and with it being irrigated by gravity, the ground is corrugated, and he thinks it is fabulous to go bumpity-bump across the field, down the hill, and then fast up the driveway. YES, he wears a helmet!!

7. Perhaps most wonderfully: Garrett's behavior and maturity have given us the chance to do more as a family WITH Garrett instead of the two-family situation we have been living for years. Just today, he went to the Boise mall with the girls, another family and me, and we even ate dinner out! To say this is amazing and wonderful is such an understatement! Last night he lasted an entire BSU football game, and since it was televised, it took longer than any game he has attended. To know we can be a family and have ALL of us involved is so fulfilling.

8. Garrett is GROWING! The  man-cub is looking like a boy now! He has some bone structure to his legs, a little chub on his belly, and has really grown taller. He is so handsome, and to see some volume in those beautiful cheeks when he smiles is indication of the strides he has made!

So what's next?
Well, he will continue to get 750-1000 calories of Pediatric Compleat enteral formula through his button directly into his stomach for the foreseeable future as this seems to be the magic that has him growing. He still enjoys eating by mouth, but we have stopped stressing him by chasing him around with table food. We will go with the flow and let his body show us what it needs and doesn't need.

Research shows that eight months after and appendicostomy or cecostomy (he had the appendicostomy), the colon has had time to heal if it is going to heal from being sick. We did some adjusting of the flushes at the eight month mark and a couple other times, but it appears his colon needs the daily flush, so that looks to be how he will manage his bowels throughout his lifetime. While it would be wonderful if his colon had "healed," it apparently is what it is, but we are so thankful the appendicostomy works so well for him!

We see Dr. Saneto, the Mito specialist in Seattle, in December to show him our improving boy who seems, for now, to be giving Mito the finger!! I know he and his nurse Pam are going to be blown away by Garrett's mental and physical strides. Of course, I always ask the same questions, mostly about prognosis "this time with what we know today" and Mito cocktail doses and EPI-743 drug release in future. Garrett and I fly to Seattle December 21 or 22 and spend one night, go to the appointment, and fly home the next day. We love these trips, and this time we will take in some beautiful Christmas lights!

And this week was the first "scare" we have had with Garrett:
Wednesday Garrett's aide and caregiver text me a couple times telling me that Garrett wasn't looking or feeling right and was asking to go home. It was a crazy day at home for me as we had someone doing some work on a pellet stove install, were sealing the house to keep mice out, and the girls and I were rearranging furniture and deep cleaning. I told the aide to let him know he would nap at home as soon as we got home if I picked him up. His aide said she would watch his temp and check with me in an hour. We knew a couple kiddos from his class were out sick, and we knew there was a stomach and headache bug going around. She text me later and told me to please come get him as he was complaining of a bad headache and crawling on the floor, wanting to crawl into someone's nap- NOT MY KID!!! I picked him up, and when we got home, he wouldn't ever get out of the car. Once out, he could barely walk and kept grabbing his forehead and yelling that his head hurt. I got him to my bed but then realized I needed to get him to go pee before a nap, and when I finally got him to get up, he crumpled into the floor in a ball screaming about his head and just rolling around. SO not my kid! When I got him up and to the potty, he threw up with no warning. I then called his pediatrician, and a nurse returned my call and told me to take him to the ER at Children's in Boise since his electrolytes could be getting out of balance, and he could be going into a crisis. When we stopped on the way to drop Ainslee off a friend's, he opened the car door and threw up again. Let me say he is the best "barfer" of the kiddos as he is a neat one!!! We let Ainslee out and headed on to Boise. We were taken back and he was assessed quickly after they took our Mito protocol letter.  The ER doc was AMAZING by asking a million questions, following our Mito protocol letter to the tee and calling Dr. Saneto to come up with a good plan. I could not have been happier with that EVER!!! God willing, we will always get at least half that good treatment in an ER in the future, and I would still be happy! Because of the headache, the doc ordered a CT scan of his head before starting IV of D10. Head was  clear, all labs were coming back in close to normal, and his IV was started and he headed to a room. We were there for roughly 24 hours, and Garrett left the hospital looking almost normal! I truly believe that the doctor's open mind, calls to our main doc, quick adherence to protocol including the right fluids and meds and compassion made our boy get through what could have been "a big one." Call me nuts, but in my mind, I always have this small place that is held up knowing that these things will be more common as Garrett ages, and they will likely get worse, taking longer to recover and pinpoint the problem. This time is was probably a virus he wasn't handling well. Thank Goodness it was nothing more and that Garrett bounced back so quickly. I guess we can say we have one under our belt and can be thrilled the protocol worked as planned.

That's long overdue, but since we are having such a great time staying busy with the kiddos and including Garrett in so much more, I just don't take the time to blog as much! Some other great things have happened lately, but I just cannot share all tonight. Plus, I want to add PHOTOS, and my eyes are crossing. So here's  one photo to brighten your day!!!!


Godspeed,
CL

Monday, July 21, 2014

Button Change Tomorrow

Tomorrow after a swim lesson, Garrett will be admitted to the PICU in Boise at St. Luke's Children's Hospital to have his feeding button changed. The current button is still functioning great and not due to be changed until December, but it hangs too far out of his abdomen, thus causing Garrett to need to wear something tight around his torso to hold it close to his body so it doesn't feel weird and worse yet, doesn't get yanked out! I believe the surgeon did his best picking the length of the tube, but it hasn't gotten any tighter as maybe he suspected it would as Garrett grows, and his office was more than accommodating and asked me to email a photo. Upon seeing the photo, they immediately called me back and scheduled the procedure for tomorrow.

Should be a very cut and dry deal of admission, a little oral Versed to put Garrett into Woodstock mode, change it while he is in la-la land, let him eat and drink some, then home! Grouchy's mom (my mother-in-law) may come along, so that will be great company. Love her!!!!

So I am not too nervous since there is no real anesthesia going on. I just hope it's quick and that we get the right, shorter size in this time so Garrett can not be so worried and can stop wearing the burn mesh around him. It's too hot for extra layers!!!

Godspeed!
CL

Saturday, July 19, 2014

Happy Birthday Garrett!!! Number 9!!! (And please excuse me.)

Garrett with his favorite wagon and his balloons for his birthday party. 

This past Thursday, Garrett turned nine! Wow, has time flown and crawled like frozen gravy all at the same time. Tomorrow, Sunday, we will host a birthday party for Garrett here at the farm/ranchette. We haven't ever had a really large party for Garrett, but this year we planned to include as many people as we could who are friends of Garrett's and part of his life. So it will be a big party by our "kid party" standards! He has friends, grandparents from Alabama and Louisiana, church pals, therapists, community support workers, Sunday School teachers, and many of our dear friends here in Idaho. We are having hotdogs, a "Frozen" movie cake made by a sweet friend, ice cream, and then the menu Garrett created of his favorite foods: Cheez-Its, M & M's, Twizzlers, Ramen Noodles, grapes and of course, Raisin Bran!

And you know what I think we should call this year's party?
"TAKE THAT, MITO!!!"

This past year has been such a wonderful year for Garrett and for those of you praying for him (if you haven't ever witnessed a miracle or HUNDREDS, you have prayed and now can SEE miracles in our son's life)! It's been a year of fixing medical issues and seeing him GROW and LEARN and be HAPPIER than ever before! I am so very thankful that he has had medical issues we HAVE been able to work on. Most kiddos with his disorder are so much sicker at this age. He had the appendicostomy so he can empty his colon daily and a g-button so we can pour extra calories to get him back onto the growth curve. Both have worked BEAUTIFULLY! He is READING now, doing some MATH, and gaining more and more verbal skills and the ability to share more of his thoughts and feelings more calmly. His processing is improving greatly!

Every year I get emotional on my children's birthdays. I guess it is the feeling that even though sometimes parenting feels like we are stuck in time, time is actually passing by quickly, and I have absolutely NO control of that. But Garrett's birthdays seem to be more emotional for me each passing year. Just today I was in Wal Mart with my mother-in-law and Addie (our 13 year old) and found myself alone searching for Garrett's favorite candies he requested for the party menu. It was an easy mission: candy aisle to get Twizzlers and M&M's. I found the bags of small amounts of M&M's but some were plain and some were peanut. Garrett likes only plain, so I was looking for just a bag of small plain portions. I looked for maybe 20 seconds and then felt anxiety shadow over me like a buzzard coming in for a warm roadside snack. It was heavy, real, and scary. My mind made a strange connection between searching for this particular candy and not seeing it to searching for Garrett and not being able to find him because he was no longer alive. I flashed to those families I pray for who have lost children to Mito or other causes of young death. I snapped myself out of it and settled for a two pound bag of plain M's, but that feeling is very shallow under a very thin shell. It happened again in the wrapping aisle a few minutes later when I was looking at different gift bags that I knew Garrett might love. (He keeps gift bags to play with if he loves them! He packs around toys in them.) I saw the cheap bags I would usually buy and grabbed one with robots and another simple one along with some tissue that had glitter in it. Then one aisle over, I found Marvel and Spiderman and Superman bags, but they were a few dollars each. I suddenly felt the tears coming on again as I wondered what regrets I would have if I didn't spend the additional money to get bags he would REALLY love. What does money mean anyway? How else would I spend it? What's really important? What other regrets would surface later if Garrett went to Heaven before us? I know there are thousands. But really......in the wrapping aisle????!!!! I am a terribly logical person in most cases, so again, thankfully I was able to snap out of it. Maybe it's midlife anxiety, but I am feeling more free of anxiety in recent months after I spent more time in prayer begging God to help me release the stress and anxiety of trying to make those closest to me happy and content in this life. Only those people and God can truly fix that.  So I KNOW anxiety, trust me. And God has answered my prayers beyond measure, and really quickly! But these new feelings are probably just creeping up as I replay the diagnosis of Mitochondrial DNA Depletion and the life expectancy talks both our Mito docs have given me. It is haunting to be raising a child who the "experts" claim is a time bomb ticking each day away. It is also an honor to raise a super hero; this child changes people. He opens hearts and helps people find joy in just a moment. He is truly unique...a beautiful miracle.

I have read a couple of articles and blogs that claim research shows that parents of Autistic children exhibit the same symptoms as soldiers and others with Post Traumatic Stress Disorder. I will say that I have too much respect for our Soldiers to claim I suffer with anything as horrifying as what those brave souls carry after being in battle. But I WILL say that having a child with mental disabilities and a predicted shortened life has changed us...all. It has changed my marriage, priorities, parenting, and most of all, my relationship with my Savior. I have kicked God, screamed, begged, pouted, cursed, and thrown some tantrums that make a raging two year old look like someone in a coma. But meanwhile, He has sustained me, healed Garrett in some beautiful ways, and made me back into clay-like material instead of a cold, hard rock capable of nothing alone. Each year has been hard. Each day has had challenges. But the blessings have far outweighed the costs.

So to those of you who have lost children, my heart continues to hold you as my prayers include you. To the many, many I cannot name who have supported Garrett, our girls, Oscar and me, I can never thank you enough! To our families, thank you for your patience and the hours and hours of help with Garrett and counseling you have done for us. To my beautiful two daughters, I am more amazed by you two every day. You are more faithful in your Christian walk than I have ever been. I adore you! And to Grouchy, I love you.

If you are coming to the party tomorrow and you see a few tears, please know that they are a very special recipe, these tears that are so ready to fall. They are a tender mixture of hope, horror, happiness, gratefulness, sorrow, sweetness, fear, and a very surreal peace. Garrett speaks many times daily of Heaven and its real, concrete, exciting promises. He KNOWS it is real, and this is beautiful to me. I cannot wait for all of us to be there together. "Kingdom perspective" as a friend calls it, is the only perspective to have anymore for me. If the tender outer shell of mine cracks tomorrow to let the tears flow, I will relish that without Garrett as my son, I would never have the faith and love in my life that I have now.

HAPPY BIRTHDAY to the coolest, bravest nine year old I have ever known. I am so excited to celebrate with you and your friends tomorrow!! I love you, Garrett!!!


Thursday, May 22, 2014

Something Isn't Quite Right

It's the final week of school....and the final day today! He was such a big boy this year, and he learned so much.
But today and yesterday he was really off. He felt a bit warm and was so tired that he was asking for a nap and asking to go to bed but then fighting sleep last night and tonight. Today he took a nap with no fuss whatsoever. He had an early release day so got home around 1:30 and then hit the bed hard for a long nap. Tonight was his school's night at the YMCA to celebrate the children's success in walking 50 miles during recess this school year. He was happy to go after his nap, but then he spent most of the time at the Y in the pool area (which is one of the coolest indoor pool/lazy river/water slide/beach areas I have ever seen) whining and crying. I get it...it was pretty loud and chaotic, but it was like he felt nothing was at peace in the world, at least in his world. He begged more than once to come home and go to bed. THAT is not my usual boy!
I have not been getting as much formula into his body these past two weeks as his school nurse hasn't been at school, and his old nurse doesn't know the routine. I figured two weeks with a bit less wouldn't hurt, he has been eating more and more, and it was going to be a little stressful for all involved if we taught his old school nurse to do it.
I fear something is brewing. I hope he just needs more formula, and we can take care of that. However, my momma bear brain worries that he either has something brewing internally or maybe just the end of school out of norm emotions.
Either way, he is still the cutest boy around, and he is growing so much right now! Several times at the Y I couldn't put my eyes on him right away because I was looking for a much shorter kiddo!!!

Godspeed,
Clara-Leigh

Saturday, March 8, 2014

Cha-Cha-Change!!!

Change is constant. I am not really sure why LIFE doesn't mean the exact same thing as CHANGE. Living things are always changing. It's a fact. And while sometimes change is wonderful, many times, at least while in the process of change that we feel and live (as opposed to the molecular changes constantly occurring in our bodies that restore and renew most of us), change feels sort of icky, uncomfortable, or just plain discombobulating.

Those who help care for a special needs child or adult are extremely crucial to the success and mindset, growth and mental health of that individual......and yes, the parents, too.  When you have a great one, they are great.....beyond words. But when they leave your child or family, there is a huge void, lots of change, and sometimes huge stress.

Garrett has lost another caregiver. She came to us through an agency after three back-to-back girls in their early twenties who lived too far away to stay with us long and were still growing up. So we didn't expect those two girls to keep up the travel or the stability for long. Next, we were sent a lady just to meet and talk about Garrett. She was very kind but extremely obese and had a very significant limp. This would not be something I would even notice, but keep in mind that was almost two years ago, and Garrett was only six, wandered, ran off sometimes, and lives near irrigation canals but cannot swim. So we needed more of an olympic athlete as a caregiver at that time! The agency called the next day to tell us she didn't feel she could keep up with Garrett. No surprise. But then there was a miracle!!!

First, let me share with anyone who may not have dealt with caregivers/PCS/respite care/home care. NO ONE LASTS LONG.....well, almost. And then how do you define "long"? The revolving door of caregivers seems to cycle almost quarterly. Then you might get six months. That's cool! But then you can get one who has some stay about them, rarely.  The next lady who came into our home lasted a year and a half! THAT IS MAJOR-LONG! She came over one day with a supervisor and said after only a few minutes that she would love to work with Garrett and start as soon as possible. It is only fair I say that before this, we had a young lady who was in high school who was also a good friend and neighbor. She was with Garrett for many months, but when she moved away for college, that left a gaping hole! We loved our Shelby....and still do, of course! She still brings cookies to Garrett when she is home from college! Before that, Shelby's mom, Andrea, was an angel to fill the need until Shelby turned 18 and could do the job. WHAT BLESSINGS these two ladies still are in our lives! Back to the point. So this new caregiver was a hit right-off. She was a very mature adult that was a CNA, had worked in a psych ward, nursing home, and raised three boys. She was also a former gymnast, a history genius, an avid reader, extremely creative and loving, but just stern enough to get the job done. Garrett was her only client, and man did she do a great job with him! She didn't just "work with" him. Oh no! She INVESTED in his life, learning and future.

Last year, her health took some turns, but then things leveled-out. Then a few weeks ago, she called to tell me that there were new, life-long health issues that made it unsafe for her to work with Garrett any longer. Of course, I begged her to wait a while to make that final choice. Could she see what docs said at her next appointment? Could things change? Could medicine help? Nope. She had made up her mind, and based on the diagnosis, she was very brave and honorable to make the choice to stop working with Garrett. I sort-of knew this was likely soon deep in my brain, but I wasn't expecting it quite yet. I had seen the changes in her. But this was it. It was over. Eighteen months. Eighteen months of loving this lady like GOOD family.....the family you wished lived next door. Eighteen months of never worrying one second when she had him. Eighteen months of smiling as I left her with him, knowing he was happy, safe and LOVED! That night was a long night. As I put Garrett through the routine of the evening of appendicostomy flush, meds, more meds, and tube feeding, table food, and all, I kept seeing reminders of this angel of a lady. There was the lap quilt she made with a pirate theme on one side and flannel paw prints from when we got Sammy on the other, lovingly quilted in a wave pattern. There was the pink, plastic basket she lined with grocery bags and placed by his bed to teach him to take off his own diapers every morning....moving towards more independence. There was the sign she just gave us for our kitchen. It "describes us perfectly," she said. It was about family. When I made dinner for him, there were the Star Wars cups she bought for all the kiddos at his birthday last July. Then as I tucked him in, we got into a bed with this super-helpful method she taught us to use to cut down on bed changing drama that happens daily. There was the stack of books she last read with him, the stool by the toilet where she would sit and encourage Garrett to poop on the potty and work through the cramping as she lovingly rubbed his back and let him lean his head on her. There were snowflakes still on the windows from their annual "snowflake Christmas decorating." This had been year two of that. There was art on the fridge, a backpack neatly handing on the coat rack, his shoes by the door, counting to ten, deep breaths, and lots of positive language he uses that all happened because of her.

How do you tell Garrett she isn't coming back? She begged us not to tell him she made the choice to quit. She was so worried about how HE would take this. I told her we, of course, would do things together, and we did last weekend. But man, this has been harder than I thought. I told Garrett a little fib. I explained that it was expensive for her to keep driving so far to our house, and she had to take care of a man who lived closer than us. Partially true. She was so afraid that if I told Garrett the truth about her health, he would worry about her. She didn't want him to have any worries, she said, besides which Wii game to play and if it was PE or music day at his school. And of course she didn't want him to know that she "quit" on Garrett.

Oh dear, I am officially crying over this as I recount it all! At the time, I was in a bit of a scramble as I needed to fill the huge hole in his care plan, but now it is sinking in. The woman was an angel-nothing less.

But God always provides. Not sure when or who said it, but I love this:
When God closes one door, He always opens another. But it may be hell in the hallway.

So a couple weeks before his caregiver quit, his school nurse and dear friend of ours asked if we needed any hours worked. I hired her through Garrett's personal budget as well as the agency hours he has. She helped as the lady who quit was taking more and more time off. This seemed to bridge the gap, and since the two ladies had met and conversed several times, they communicated about scheduling and care and routine, and it was great!! But then the long-time lady quit, it was like a bomb was dropped on me! I was worried about not only how to fill this huge gap, but how to take good care of Garrett's emotions as he learned his lady who would "never leave you". Wouldn't you know that the very next day, I learned that one of the aides in Garrett's special needs class was looking to work some more hours besides just the school days. I talked to her, and wouldn't you know that she said YES!!!! That covered our gaps....I thought.

Yesterday, the newest lady came over for some training, and when we discussed scheduling, she said she didn't really want to work weekends. We will have to try to figure out something else, someone to take some weekend hours besides our high school aid who is usually busier this time of year because of her athletics.

Never a dull moment, and here we go with more CHA-CHA-CHANGE!!!!

Godspeed,
CL

Saturday, January 11, 2014

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