I am very thankful for the answered prayer for discernment. I know Garrett's ACE Malone surgery for his bowels as well as his teeth cleaning under the same general anesthesia, is scheduled for this coming Friday, but my soul was still not at rest. After a very frank discussion with his trusted surgeon, I wasn't feeling like I was ABSOLUTELY certain it was the right thing or time. Maybe it was just mom-xiety. You know, anxiety of a mom. But this past five days has shown me very clearly that something must be done, and with the amazing G.I. specialist on board along with a great pediatric surgeon as well as many Mito moms' experiences and after reading lots of studies and articles, it is clear that this is a good time and place and such. Garrett is now pooping so much he can no longer wear underpants but is back in pull-ups all day and his super-miraculous liquid-holding capacity youth diapers at night. And if he has meds dosed down any, he goes over a week constipated. I am fine with diapers at night. Not sure if that has potential to change, but the no undies deal is NOT popular with my sweet boy. He went as far last week to tell me he was going to pray to God to make him "all fixed like everybody else so he doesn't have to wear pull-ups." BROKE MY HEART!! He is truly realizing his differences, and it hurt my soul. And no, this surgery won't make him like everyone else exactly since most folks poop daily and don't have to spend an hour in the bathroom daily flushing their colon with a solution from the top down through a hole in their belly button. However, it will HOPEFULLY, if all works as it may, give him the the ability to be emptied completely like other kids on a daily basis, and limit his soiling by possibly 100 percent. THAT would be so so so so wonderful for him and for all of the rest of his daily care team!!!
It seems every time we have needed to go anywhere this past five days, there was poop everywhere on the way out the door...to work, church, restaurant, activities, and then there was often poop while in public, and the sorts that has it running down his legs as it has blown through pull-ups even. And he is frustrated. He hates it, and it is often hard to hide my frustration with it...not with him, but with the poop. Then of course, there are the behaviors associated with the ordeal where sometimes he tries to dig the poop out of his pull-up or scratch "down there" because it itches when poop is on him. Then, bless his heart, he will be in the house and I may be out of earshot or in the garage and he will come to find me to tell me he has poop, and it will have pooled and puddled wherever he has walked.... truly a trail of mess. It has, just this past week, been cleaned out of carpets in our home's bedrooms, living room and through the hall and down our carpeted stairs. It is just plain gross, frustrating and sad.
So there it is, sports fans, DISCERNMENT!!!! Or maybe simply put, it's a huge slap on the face to me so I can feel confident with our choice to move forward now. I am thankful my little hero is still so well and so smily and happy!! He is a real trooper, and I pray this procedure yields the best possible results. We will not know if it is "working" at capacity for about a month after he is home.
He will be admitted to St. Luke's Children's Hospital this Thursday to begin I.V. hydration and a bowel clean-out. Friday morning around 10:30 the dentist will begin his work followed by the surgeon. So I am guessing they will take him to pre-op by 8:30 or so. Nurse tells me he should be inpatient for 2-4 days post-op depending on how he is healing and eating and how well we are doing accessing and flushing the tube that will remain in the hole/stoma until the site is healed properly and the tube is removed to leave a hole. Some of our friends are planning visits to entertain and distract Garrett over the course of the few days, and the hospital has a Wii for Garrett to use while he is there. His grandmother bought him a new Lego game for his Wii, so the bribe is that one the I.V. is in, he can have the game. And his other Grandparents come into town Sunday for a few days!!! FUN stuff, but a bit more challenging inpatient!! Wish us luck there!! HA!!!
Please consider praying for this situation in the following areas:
Prayers for the surgeons and other medical professionals.
Prayers Garrett can drink the bowel cleansing liquid and will not requite an NG tube in his nose to get enough into him.
Prayers everyone in our family stays well, not exposing Garrett to bugs pre-op
Prayers for him to not pick up any bugs in the hospital
Prayers anesthesia is safe this go-round
Prayers the dentist has time to get his mouth REALLY nicely cleaned!!
Prayers the ACE procedure is very quick and successful
Prayers for Garrett's multiple sensory issues allow his little mind to settle down and relax some about all of the new things that will be going on both inpatient and learning to help him do the "flushes" at home daily.
And of course prayers for our girls as they watch their little bro endure yet another bump in the road.
We are so thankful for Garrett's good health these days!! Above all, please pray for those Mito kiddos who struggle more daily than our little hero has in a lifetime!!!
Godspeed and I promise to update as things happen!!
Clara-Leigh
Monday, August 19, 2013
Tuesday, August 13, 2013
Surgery It Is
I got the call from the surgeon today regarding the results of the "bead study," or the look at his colonic transit time. Over six days, Garrett did the following:
Day 1: swallowed tiny beads that were circles
Day 2: swallowed tiny beads that were circles with a line through the middle
Day 3: swallowed tiny beads that looked like Mercedes emblems
Day 4: abdominal x-ray
Day 6: Abdominal x-ray
So no, he didn't swallow the capsules with lots of beads. Rather my way-smarter-than-me mom opened the capsules per the doctor's advice (Garrett will not yet swallow pills or capsules), she opened them and discovered that he would eat them in his oatmeal....HOORAY!!! So the worst part was the extreme trauma of the x-rays. He has had many of them in the past, but he was an anxious mess of a crying panicky kiddo. It was horrifying. But he powered through both days, and we waited.
Last week, the surgeon's sweet nurse called, as did the G.I. specialist, to tell me his colonic transit time, or time for things to pass from beginning to end of the colon, was 70 hours. Normal is 30 hours. Uh-oh. So I thought, "Okay, so he is slow. We know that. But what does the surgeon get from looking at the images and studying the data???" What I saw on the Day 6 x-ray was that all three days of beads were equally dispersed throughout the colon. I wondered if they shouldn't be more grouped, like Day 1 all near one another farther down than Day 2, and so on.
Then today the surgeon called to discuss the findings. Here is the abbreviated version of his comments:
Garrett's colon is diseased from beginning to end. When kids have a section that is not functioning well, he would normally take out the bad part and expect things to improve. Garrett has no good parts. He doesn't feel like it is time to remove the colon and attach the end of the small intestines to the rectum, though someday that may be the case. He thinks that for now he should leave the colon and do the ACE http://my.clevelandclinic.org/services/antegrade_colonic_enema_surgery/hic_understanding_antegrade_colonic_enema_ace_surgery.aspx (click link to read about it) instead of the cecostomy. The cecostomy was the button going from outside his body near his hip bone below the waist, into the cecum. I initially preferred that as it was about a one hour procedure vs. the ACE being 2.5 hours. With anesthesia already a riskier than usual deal with a Mito kid, I wanted to avoid the long O.R. time. The surgeon said he does the ACE in an hour and that he thought that having only a stoma (fancy word for "hole") inside Garrett's belly button where we thread the tube to get the enema fluid mixture into the cecum and flush his colon from top to bottom, was much better than Garrett having a button that can irritate the skin, leak, and get pulled out when he takes his pants up and down over the site. This makes sense. Also, I didn't want to have to go back to the operating room to reverse the ACE should it not work, but the doc assures me it isn't a big deal. If a button comes out from a cecostomy site, it is a mild emergency, meaning you have to rush the kiddo to the hospital and get the new one put in as soon as humanly possible. That would be a mess!!! I also asked lots of questions about his colon possibly getting better. He was not at all optimistic. I asked about if the constipation meds could have caused it. He thought not. But them my sweet mom reminded me that she thinks he has had this problem since he was an infant. Seems I had forgotten that even when exclusively breastfed, he would struggle with stool that was like dry clay. I barely remembered!! But she is right. The colon is a mess, and trying this procedure will be the next step in attempt to improve Garrett's quality of life as well as internal health. Having waste hang out in his colon like it does is nothing but a recipe for future disaster.
So looks like as of today, surgery will be August 23. Should be interesting since I am starting a part time teaching job and we have family coming in the 25th. Oscar's parents will get here two days after surgery, and that might be just the people to have here with my parents to encourage Garrett and help him move forward through recovery. Plus, I have some additional help at the hospital so I can teach my two morning classes without taking time off! Blessings abound!! I even think Grouchy will be home!!!! I believe the distraction of teaching two hours on weekday mornings and being involved with the FFA activities will be a good outlet for my anxious energy, and I will be able to have the weekend off and be with Garrett as much as possible.
I am looking into how this will work, and it sounds like Garrett may be admitted a couple of days early for a hospital clean-out of his bowels. That is bound to be a barrel of monkeys!! My saintly mom will probably take the shift in the mornings while I teach. I have had so many friends and family inquire about times and dates and such, in hopes of dropping in to visit/distract Garrett. All I can say is , "PLEASE BRING ON THE DISTRACTIONS!!!" I will post a surgery time when we have one. He has asked for his dog, Sammy to come stay, and while I think staying overnight isn't an option, I am sure we can take her for a visit!! She adores him!! The big challenge will be keeping him in a room for several days. I hope he still finds it novel to have a television and remote on a long arm that comes to his bed!!! PLEASE!!!
So I ask for your prayers that this is the right thing at the right time. The surgeon said we could wait, but this is going to be what's in the future, so we can do it now and get it healed and hopefully working to full benefit, or we can continue to fight the battle medically through meds and know this needs to get done. Apparently, the ACE has changed so many lives for the better, and I hope it gives Garrett what he needs. I guess now is as good of a time as ever. I pray we are making the right decision!!!
Godspeed and many, many thanks!!
Clara-Leigh
P.S. The feeding button is not recommended at this time since when Garrett is having bowel movements more routinely, he is eating more....PRAISE!!!! However, in this photo, you can see how tiny his little arms are.....but how great is his smile and love for his furry companion!!!!!
Day 1: swallowed tiny beads that were circles
Day 2: swallowed tiny beads that were circles with a line through the middle
Day 3: swallowed tiny beads that looked like Mercedes emblems
Day 4: abdominal x-ray
Day 6: Abdominal x-ray
So no, he didn't swallow the capsules with lots of beads. Rather my way-smarter-than-me mom opened the capsules per the doctor's advice (Garrett will not yet swallow pills or capsules), she opened them and discovered that he would eat them in his oatmeal....HOORAY!!! So the worst part was the extreme trauma of the x-rays. He has had many of them in the past, but he was an anxious mess of a crying panicky kiddo. It was horrifying. But he powered through both days, and we waited.
Last week, the surgeon's sweet nurse called, as did the G.I. specialist, to tell me his colonic transit time, or time for things to pass from beginning to end of the colon, was 70 hours. Normal is 30 hours. Uh-oh. So I thought, "Okay, so he is slow. We know that. But what does the surgeon get from looking at the images and studying the data???" What I saw on the Day 6 x-ray was that all three days of beads were equally dispersed throughout the colon. I wondered if they shouldn't be more grouped, like Day 1 all near one another farther down than Day 2, and so on.
Then today the surgeon called to discuss the findings. Here is the abbreviated version of his comments:
Garrett's colon is diseased from beginning to end. When kids have a section that is not functioning well, he would normally take out the bad part and expect things to improve. Garrett has no good parts. He doesn't feel like it is time to remove the colon and attach the end of the small intestines to the rectum, though someday that may be the case. He thinks that for now he should leave the colon and do the ACE http://my.clevelandclinic.org/services/antegrade_colonic_enema_surgery/hic_understanding_antegrade_colonic_enema_ace_surgery.aspx (click link to read about it) instead of the cecostomy. The cecostomy was the button going from outside his body near his hip bone below the waist, into the cecum. I initially preferred that as it was about a one hour procedure vs. the ACE being 2.5 hours. With anesthesia already a riskier than usual deal with a Mito kid, I wanted to avoid the long O.R. time. The surgeon said he does the ACE in an hour and that he thought that having only a stoma (fancy word for "hole") inside Garrett's belly button where we thread the tube to get the enema fluid mixture into the cecum and flush his colon from top to bottom, was much better than Garrett having a button that can irritate the skin, leak, and get pulled out when he takes his pants up and down over the site. This makes sense. Also, I didn't want to have to go back to the operating room to reverse the ACE should it not work, but the doc assures me it isn't a big deal. If a button comes out from a cecostomy site, it is a mild emergency, meaning you have to rush the kiddo to the hospital and get the new one put in as soon as humanly possible. That would be a mess!!! I also asked lots of questions about his colon possibly getting better. He was not at all optimistic. I asked about if the constipation meds could have caused it. He thought not. But them my sweet mom reminded me that she thinks he has had this problem since he was an infant. Seems I had forgotten that even when exclusively breastfed, he would struggle with stool that was like dry clay. I barely remembered!! But she is right. The colon is a mess, and trying this procedure will be the next step in attempt to improve Garrett's quality of life as well as internal health. Having waste hang out in his colon like it does is nothing but a recipe for future disaster.
So looks like as of today, surgery will be August 23. Should be interesting since I am starting a part time teaching job and we have family coming in the 25th. Oscar's parents will get here two days after surgery, and that might be just the people to have here with my parents to encourage Garrett and help him move forward through recovery. Plus, I have some additional help at the hospital so I can teach my two morning classes without taking time off! Blessings abound!! I even think Grouchy will be home!!!! I believe the distraction of teaching two hours on weekday mornings and being involved with the FFA activities will be a good outlet for my anxious energy, and I will be able to have the weekend off and be with Garrett as much as possible.
I am looking into how this will work, and it sounds like Garrett may be admitted a couple of days early for a hospital clean-out of his bowels. That is bound to be a barrel of monkeys!! My saintly mom will probably take the shift in the mornings while I teach. I have had so many friends and family inquire about times and dates and such, in hopes of dropping in to visit/distract Garrett. All I can say is , "PLEASE BRING ON THE DISTRACTIONS!!!" I will post a surgery time when we have one. He has asked for his dog, Sammy to come stay, and while I think staying overnight isn't an option, I am sure we can take her for a visit!! She adores him!! The big challenge will be keeping him in a room for several days. I hope he still finds it novel to have a television and remote on a long arm that comes to his bed!!! PLEASE!!!
So I ask for your prayers that this is the right thing at the right time. The surgeon said we could wait, but this is going to be what's in the future, so we can do it now and get it healed and hopefully working to full benefit, or we can continue to fight the battle medically through meds and know this needs to get done. Apparently, the ACE has changed so many lives for the better, and I hope it gives Garrett what he needs. I guess now is as good of a time as ever. I pray we are making the right decision!!!
Godspeed and many, many thanks!!
Clara-Leigh
P.S. The feeding button is not recommended at this time since when Garrett is having bowel movements more routinely, he is eating more....PRAISE!!!! However, in this photo, you can see how tiny his little arms are.....but how great is his smile and love for his furry companion!!!!!
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