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
Tuesday, January 7, 2014
Saturday, January 4, 2014
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
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
Wednesday, January 1, 2014
HAPPY 2014!
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!
Godspeed,
CL
Wednesday, November 13, 2013
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
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
Friday, October 18, 2013
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.
Sunday, September 15, 2013
Mitochondrial Disease Awareness Week
Welcome to yet another annual Mitochondrial Awareness Week! I say that with a tad bit of sarcasm because in our household, every day is awareness day. I know, very cliche, but it's so true. Every single day, at some point in dealing with my son who has Mito or following other families and praying for them during their children's struggles, I want to just go door to door or in public, I have this desire to start giving a Mito awareness presentation in hopes the world will gather, learn, and give. GIVE. That is probably the number one-A thing we need for Mito to become erradicated. Money fuels research. Money fuels awareness, but the awareness piece has to be in place to help bring in enough in research funding to make more dents in Mito.
How does Mito affect our household?
Not sure where to begin, so I will say that most of you are aware that Mito causes Garrett's severe constipation, delayed gastric emptying, sensorineural hearing loss, mental retardation, OCD, ADHD, Autism, anxiety, low muscle tone, developmental delays and failure to thrive. Each day revolves around Garrett's care of his appendicostomy very first thing in the morning. It is his appendix brought out through his belly button with a tube in it for now. Later it will just be a hole or "stoma" where we feed a tube into him 6 inches or so and gravity feed 1000 mL of saline in hopes it manually flushes his colon. For now it causes him to poop, but not in the hopeful hour after the flush. Holding my breath this may possible work in the future. Next, it's get the kiddo to eat SOMETHING so he can take his meds. Not always the least bit easy when it's early. Next, it is morning meds: 3 pills to be crushed and mixed with one of the four liquid meds/supplements that make up the mito cocktail, along with a couple of gummy vitamin b3 pieces. Then pack his backpack to be sure he has extra undies, wipes, diapers, and pants. Keep in mind he is second grade age. Next, get him on the bus, which THANK GOD, he loves!!! Then it's getting his meds ready for the lunchtime dosing. On Mondays I can take his meds to school for the week. Each bottle (3 pills and two liquids at lunch) has to be in it's own prescription bottle and then directions alongside. And don't forget the 10 mL syringes for oral dosing!!! Fridays I pick up leftovers of the liquids and bring home to restock. He gets off the bus at 3-is and then it is two laxative tablets crushed into juice. Four p.m. is evening meds: three pills and four liquid meds, then one last med at bedtime. And sometime in there we are trying to get him to eat and drink..... Some days are better than others. I wake and change his youth diaper at least once nightly so he doesn't flood the bed. He has urine control in the daytime if his flush isn't all absorbed and peed out. At night he loses the rest of the flush liquid and usually soaks the bed. We have gotten good at layering chuck pads, fitted sheets and draw sheets. He has a developmental therapist/personal care assistant who can spend up to 40 hours per week with him, but that's pushing it for her. Garrett usually wakes between 4 and 6 the happiest person ever, but we try to get him to go back to sleep so we can all get some rest before the sun is up!!! Then it's flush, medicate, feed, and repeat. Every week, it seems we have an appointment for medical issues or maintenance. Then there's the everyday mental mess that is my son. He is loud, overwhelming to all of my senses, but incredibly cure and lovable!!!
While to those of you with normal kiddos may think the above description of our time with Garrett may sound overwhelming, I want you to know that our son has a more mild effect of Mito compared to so many other children and adults. Many families live in the hospital with their Mito kids, celebrating birthdays, Christmas and every occasion inpatient. Worse yet, many more families celebrate occasions at home but with the gaping hole of the lost child who has preceded their parents to Heaven because Mito stole them.
Tonight it's these families who have empty chairs at the table, empty stockings over the chimney and empty car seats in the minivan that I want to stick with you. Learn, love and GIVE. Look for ways to give at www.umdf.org
Blessings,
Clara-Leigh
Sunday, September 8, 2013
Appendicostomy All Done!
I have done most updating on Facebook due to simplicity, but I do want to follow-up to share that Garrett had an appendicostomy on September 23. Surgery was longer than I thought it would be, but he also had his teeth cleaned, sealed and x-rays done. Teeth were in super shape! Great news!!
As for the appendicostomy, he was admitted to the children's hospital floor of St. Luke's the night before surgery around 2:00. After a few hours of questions, exams, more inquiries about his Mito protocol and docs between Boise and Seattle talking, an I.V. and and nasogastric tube were placed so he could get hydrated well and have the NG tube to use to get 1.5 liters of Golytely down his tummy to get him all cleaned out. Friday morning he went to the O.R, after tons more precautionary calls and protocol measures were taken. He cannot have Tylenol, lacerated ringers IV fluid or a seizure med, Depakote. Apparently, he woke happily just after surgery but took a nap before we got to see him. This was Garrett's longest time under anesthesia, but he handled it well! He was fairly miserable the rest of the day with breakthrough pain, or maybe more sensory issues, but we kept ahead of his pain med dosing just in case. He has to get up and walk right times the very next days, and that was very tough!!! Then Sunday, his grandparents were ALL in town!!!' My folks live in our guest house all summer, but Grouchy's folks had been in Montana visiting friends, so hopped on a quick flight to visit. Just when it seemed a PICC line for TPN was going to be done because Garrett wasn't hungry or thirsty, he asked for food!!!! We came home Tuesday the 27th thanks to a hospital coordinator getting the home care supplies, pump, etc, delivered to our home!!! There have been and continue to be some bumps in the road, but we are holding our breath to see if this will work!!
So each night, we use a Kangaroo enteral feeding bag and gravity flow 850 mL into his tube, which is through his belly button, using the appendix as a path to the cecum. In theory, this will eventually flush his colon. Not working so well yet, but time will tell. Surgeon has had to do scans and x-rays since surgery because Garrett was peering a lot but not having liquid through the rectum. Last night, before the flush done entering his body, he started having liquid stool, but nothing tonight. Scans with contrast showed that his colon is large and pretty useless. The saline was just going in and pooling in the cecum and then not moving through the colon. So he is absorbing it and just urinating it out. But tonight nothing, so I will sleep with one ear and one nostril open. Betting he urinates enough to float his mattress!!!! I will get up a few times to change him tonight in hopes he doesn't wake soaked because he gets so disappointed.
Should this not help him, the other option is to remove the colon and pull the small bowel through to the rectum and resection it. There would be two surgeries in that process. One would remove the colon and put a colostomy. So his stool would drain into a bag at a stoma site on his tummy. Second surgery a month or so later would close the stoma and pull the small intestine, that had been the site of the stoma, down to the rectum, create a j-pouch and then attach that to the rectum. So besides scars on his belly from the multiple laproscopy incisions, there would be no external sign that the plumbing isn't all normal. Some have success with this, but I would need lots more research and data and chatting with other parents who have been through this to make a decision of this magnitude. It's a much longer surgery than Garrett has ever faced. It is two surgeries. It is just a bigger deal than the appendiscostomy, obviously.
What else could be done? Well, I even talk about options because while the surgeon says to wait and see if this current deal works, I am not feeling hopeful in my gut. Looking at his scans and test results with mom eyes, it just doesn't look promising. But who am I to say? Just going on gut feeling and the past couple weeks' experience. The other option is the undo the appendicostomy if it doesn't work and go back to how things were before. That's not cool either.
Garrett is back at school and acting himself!!! The largest blessing in this is that besides sensory issues and some pretty intense pain and frustration in the hospital for about 36 hours, Garrett has felt amazing!! Luckily, in a weird way of having to say it, he has no sensation in his colon, so even when backed up or if the laxatives cause any response that would cause most of us serious cramping, he doesn't feel anything!!! So he is a happy little guy, always melting our hearts and making me want this tummy mess to go away so he isn't bothered by it!!!
Godspeed,
CL
As for the appendicostomy, he was admitted to the children's hospital floor of St. Luke's the night before surgery around 2:00. After a few hours of questions, exams, more inquiries about his Mito protocol and docs between Boise and Seattle talking, an I.V. and and nasogastric tube were placed so he could get hydrated well and have the NG tube to use to get 1.5 liters of Golytely down his tummy to get him all cleaned out. Friday morning he went to the O.R, after tons more precautionary calls and protocol measures were taken. He cannot have Tylenol, lacerated ringers IV fluid or a seizure med, Depakote. Apparently, he woke happily just after surgery but took a nap before we got to see him. This was Garrett's longest time under anesthesia, but he handled it well! He was fairly miserable the rest of the day with breakthrough pain, or maybe more sensory issues, but we kept ahead of his pain med dosing just in case. He has to get up and walk right times the very next days, and that was very tough!!! Then Sunday, his grandparents were ALL in town!!!' My folks live in our guest house all summer, but Grouchy's folks had been in Montana visiting friends, so hopped on a quick flight to visit. Just when it seemed a PICC line for TPN was going to be done because Garrett wasn't hungry or thirsty, he asked for food!!!! We came home Tuesday the 27th thanks to a hospital coordinator getting the home care supplies, pump, etc, delivered to our home!!! There have been and continue to be some bumps in the road, but we are holding our breath to see if this will work!!
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| Day of surgery, you can see the little tube coming from his belly button. In a month, this tube will be removed, leaving just the stoma and we will thread a tube daily. |
 |
| This was a week and a half post-op with some Versed on board so the tube that was acting clogged could be changed. His Tubie Friend, whose name and gender change almost weekly, is lying on top of Garrett. He had turned her mask into a bra before we finally got to see the surgeon!! Never a straight face for long around here!! |
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| About a week after surgery, Shelby came by to bring cookies, and you can see Garrett is enjoying swing dancing and back to himself. He was actually back to himself about 4 days post-op!!! Amazing how fast these kids CAN recover, though not all Mito kiddos do. I should count this blessing twice daily!! |
So each night, we use a Kangaroo enteral feeding bag and gravity flow 850 mL into his tube, which is through his belly button, using the appendix as a path to the cecum. In theory, this will eventually flush his colon. Not working so well yet, but time will tell. Surgeon has had to do scans and x-rays since surgery because Garrett was peering a lot but not having liquid through the rectum. Last night, before the flush done entering his body, he started having liquid stool, but nothing tonight. Scans with contrast showed that his colon is large and pretty useless. The saline was just going in and pooling in the cecum and then not moving through the colon. So he is absorbing it and just urinating it out. But tonight nothing, so I will sleep with one ear and one nostril open. Betting he urinates enough to float his mattress!!!! I will get up a few times to change him tonight in hopes he doesn't wake soaked because he gets so disappointed.
Should this not help him, the other option is to remove the colon and pull the small bowel through to the rectum and resection it. There would be two surgeries in that process. One would remove the colon and put a colostomy. So his stool would drain into a bag at a stoma site on his tummy. Second surgery a month or so later would close the stoma and pull the small intestine, that had been the site of the stoma, down to the rectum, create a j-pouch and then attach that to the rectum. So besides scars on his belly from the multiple laproscopy incisions, there would be no external sign that the plumbing isn't all normal. Some have success with this, but I would need lots more research and data and chatting with other parents who have been through this to make a decision of this magnitude. It's a much longer surgery than Garrett has ever faced. It is two surgeries. It is just a bigger deal than the appendiscostomy, obviously.
What else could be done? Well, I even talk about options because while the surgeon says to wait and see if this current deal works, I am not feeling hopeful in my gut. Looking at his scans and test results with mom eyes, it just doesn't look promising. But who am I to say? Just going on gut feeling and the past couple weeks' experience. The other option is the undo the appendicostomy if it doesn't work and go back to how things were before. That's not cool either.
Garrett is back at school and acting himself!!! The largest blessing in this is that besides sensory issues and some pretty intense pain and frustration in the hospital for about 36 hours, Garrett has felt amazing!! Luckily, in a weird way of having to say it, he has no sensation in his colon, so even when backed up or if the laxatives cause any response that would cause most of us serious cramping, he doesn't feel anything!!! So he is a happy little guy, always melting our hearts and making me want this tummy mess to go away so he isn't bothered by it!!!
Godspeed,
CL
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