No matter what we have going on, I try to give Abram the best childhood I can in between doctor's appointments and therapies. I want his summers to be filled with lots of sun, fun with friends and family and making those little memories that last a lifetime for him. I've tried to make a "bucket list" of things to do with him this summer and most of them just include fun things we can most likely do the backyard (painting with squirt guns now that his fine motor is up to par as I've been dying to do arts and crafts with him), visiting a fire station and/or arranging visits from the Sheriff Deputy (who is coming for his 5th Birthday!) and mini-road trips to see Gramps n' Nana. Hopefully our summer involves lots of play dates and fun in the sun! So far we've gotten to go visit my dad and his wife up in NE Iowa which is absolutely beautiful and spent time soaking in the hot tub with Abram, going to a flea market and taking a nice drive along the Mississippi River on a scenic drive. Other than that, it's been non-stop hanging out in our back yard where Abe's got a a little plastic pool he likes to sit in but we've already had to dump and clean it out numerous times due to "being torpedoed" as my dad calls it (aka - Abram pooped in the pool) or when he got so excited over the massive bubbles we were blowing that he just HAD to throw a potted plant in the pool for good measure right before our friend was coming to swim! His highlight of his entire summer is of course the crazy swing up at my dad's house that he will soon grow out of. It's just a toddler swing but it hangs from a rope from a tree and goes pretty high/swings 360 degrees and Abram finds it 100% delightful. We also had a random drive-by of the Weiner Mobile. It literally pulled into our development (which is literally in the middle of nowhere) and the nice man driving it just stopped outside our house! Abram caught a glimpse of that door opening and ran so fast away from the hot dog that I couldn't stop laughing. His dad and I were way more excited about this opportunity than Abram was. But it is something to remember for a long time, that is for sure. Here are some photos of Abram lately! Enjoy! This week, my mom and I traveled with Abram to go for his 2+ year follow-up with Nephrology for his Renal Fusion, also known as a horseshoe kidney. I always try to make the most of our little medical trips and book a room at a hotel with a pool so Abram can at least have a good time, swim and enjoy a meal out with us.
The drive to the University Hospital is about 3 hours from where we live and Abram's tolerance to long car rides is pretty slim. Especially since he officially broke his portable DVD player we purchased last summer for our long trek to Colorado to get his medicine. We got a decent hotel rate and stayed at a newer hotel (vs the old "renaissance themed" hotel that usually has someone's old band-aids floating around in it) so Abram could swim and enjoy the hot tub before we went out for dinner. It's always hard picking a place to go so we ended up picking a "higher end" Italian-American Restaurant. In hindsight, I should have known better when multiple reviews said the food was "ok". Poor Abram ended up getting sick there. I should have known something was up when he pushed his food away and started crying. He RARELY cries unless he's really in pain and he has an incredibly high tolerance for pain. I went to hug him and before I knew it - he'd barfed down my entire front and it was pooled in my arm. All they had for napkins was the nice white cloth ones and the sweet waitress ran over to help (shared with my mom that this happens all the time at the bar she works at) and didn't skip a beat as I piled vomit covered napkins onto Abe's plates. I was trying to get it off of me before I ran to the door but I couldn't get up until I had at least cleaned myself up - or it would have gotten EVERYWHERE but of course - Abram starts doing projectile vomiting in the booth. I try to catch most of it in the napkin but he was pretty much covered, the people around us were groaning and I couldn't get out of there faster. I was mortified. I had to walk him out past a patio of customers as well who all stared and to whom I proclaimed "DO NOT EAT THE CHEESEBURGER!" I had to strip the poor kid down to his diaper to get him in the car and I just had to suffer - soaked in puke - until we got back to the hotel - which happened to have a cupcake shop underneath. I told myself I deserved a cupcake - so I walked in with my mostly naked toddler, covered in vomit and order myself a Chocolate Carmel Coffee Cupcake. Luckily, there weren't really any customers to have to see us. The woman by the elevator definitely did a double take at us and had to sit near us the next morning when the "poo incident" happened. The next morning, we needed to get Abram to drink a lot of water so he could get his ultrasound and so the Nephrologist could get a urine sample. We go down to their free breakfast and got him to drink some water and eat a little breakfast. He flirted with the waitress/hostess lady like usual (he is a ladies man, for sure) and as I get him out of their fancy chair - realize that he's had the up the back poop explosion and not only did it come out both sides of the diaper in the back, but up the back of the shorts and half-way up his back inside his super cute new outfit that probably is 100% destroyed now. Yuck. What a mess. The positive? The shirt at least kept the poo off the fancy chair. The actual Nephrology appointment went about as smoothly. We waited forever for someone to announce themselves a Medical Assistant and proclaim that they would be putting the urine collection bag only for her to disappear and not come back. The Ultrasound Tech was crabby about it when I told her they needed a urine sample and she made some crap comment about how she needed the bladder to be full to get the ultrasound. Yes, we know that. But Abram has NO CONTROL over when he pees. It only made sense to get it on before she pushed him around on the guts for his kidney scan. So half-way through - another nurse interrupts the ultrasound to tell the tech that they need a urine bag on him and that the Medical Assistant would be in afterwards to put it on. The ultrasound was taking a while, Abram was screaming his head off because sensory-wise he can't handle the feeling of that gel and being pushed around on and instead of being kind and calming - the tech just squirted more gel on him without warning him and sent him into another bout of screaming after he had just gotten calmed back down. People think I'm over exaggerating when I say he is a fighter but for blood draws/EEGs, etc it takes at least 3-5 people (in addition to me) to get him restrained enough to do a procedure and/or prevent him from hurting himself! I was so irritated. I don't get people who are in the medical profession who have no compassion or empathy for those they have to deal with. He was the FIRST appointment of the day - she should have still have some patience left before 8:30 am. Anyhow - we wait forever for the Medical Assistant to put the urine bag on - and she never does show up. She interrupted the ultrasound about it - but couldn't bother to wait? We had arranged ahead of time that he would need this as he just can't give a urine sample like an adult. We finally get to Nephrology and they tell us that they need us to go to the lab for blood and urine. I remind them again - we have yet to get the urine bag actually ON and they say the lab has it. We get to the lab - and there was NO urine bag. We get escorted back to the appointment rooms and still - no urine bag. When the Medical Assistant chick finally shows up I am already very frustrated and it's already been 90 minutes since we arrived and Abe has officially lost his sample to his diaper. She missed her opportunity for pee, did a terrible job checking his blood pressure (where he also screams so loud he dry heaves and often will vomit) and then promptly FORGOT to put the Urine bag on. Seriously? I had to tell her " you still haven't put the urine collection bag on, yet" and had to help her put it on as she tried to put the sticky part right on Abe's parts that shouldn't have sticky tape. She also tells me to put him on the table and without warning me (or him), has the table move up off the ground with a remote control. My son could have fallen and hurt himself as it startled him pretty badly. Good grief. By the time the doctor came in, I was annoyed. We had to go through all of our medical history (3) times: once with the assistant, once with the intern and once with the Doctor where they proclaim that they have to REDO the blood pressure because it was high. "Well, he has major sensory issues and NO ONE takes his blood pressure anymore because they never get an accurate reading from the cuff. He screams, cries and dry heaves so of course it is going to be high. Other specialists use the one where they get the reading from his toe." But they proceed on to make my child scream and dry heave and finally decide that mom was right - they couldn't get a reading. Then Ms. Medical Assistant comes back demanding for me to check for a urine sample and seemed disgusted that there wasn't one and I make a snide comment about how he's only had it on for like 3 minutes. I share with the Nephrologist my frustrations as they seemed pretty adamant on the phone that they needed a urine sample and made arrangements days before to have things ready for when we got there. I am more than able to put a darn urine collection bag on myself. It was important enough to make a phone call about, interrupt the ultrasound for but inevitably to not actually collect and obtain said urine sample. In the end - we got great news. His kidney looks fine for renal fusion, is operating fine and we don't have to go back for another 3+ years which was good news for me. The bad news, Abram lost all that water we had given him at a restaurant on the way home during lunch and peed through the last of the (4) pairs of shorts I had packed. So that friends, is a LOT of pee, vomit and poo to happen in less than 48 hours but just a taste of what it's like to have endless appointments and the now occasional bad experience in a doctor's office. The positive here is that we leave each appointment these days with good news and we keep just getting positive reports. I'll take all the gross body fluids for good doctor's reports any day but it sure makes for a good story. Abe has been in Speech Therapy for almost three years now. I had no idea how incredibly hard it would be to find therapists that would be a good "fit" for Abram. We've had some great women come in and out of Abe's therapy life and for over a year we had a male speech therapist thinking that perhaps having a male influence would somehow help Abram connect. Unfortunately, that particular therapist felt that Abram had a "cognitive disconnect" and actually DISCOURAGED us from using sign language for Abram to communicate "because he is not Deaf" and told us communication devices would only be used in a school setting. So in essence, it seemed that perhaps he wasn't all that interested in helping Abram learn to communicate in the ways he needed to learn the most. This particular individual even told me that Abram couldn't get the idea that the object he was wanting our son to request could not be requested because he didn't get that the picture (PEC) represented that particular object. Man, he was SO WRONG and I am so glad that Abram told me that he was done with that therapist by constantly signing "all done" and shaking his head "no" before I finally got the hint and discontinued services with him.
After that, we trialled two other speech therapists and although we loved them both (and the one who came before them all who really helped him find his voice and his confidence - hi Kim!) - we chose the woman who Abram had the best connection with and whom was able to get Abram to not only vocalize multiple times the first time we met her but she also had him using a Twin Talk right away. I told her immediately how much I appreciated her and the fact that she clearly understood that Abram has a rare gene mutation that includes impaired/absent speech and that it is IMPORTANT for him to have numerous ways to communicate - not just ONE. For that, I will always be grateful. There are so many people (therapists, friends and family included) that have told me "speech will just come" or that Abram "just needs more time" but the simple fact is - he has a medical condition that makes it incredibly difficult for much of anything to "just happen" as he WORKS HARD for every gain he makes in all of his various therapies. This week, his Speech Therapist introduced him to an iPad using the WeGo App and he was able to tell her that he wanted to play with a ball popper, that he wanted to blow bubbles and that he wanted to eat more graham crackers and drink water. THIS IS HUGE. HUGE!!!!! I was so excited I had to snap a photo. We've spent Abe's lifetime literally being told all the things Abram will not do. I'm so lucky to have found someone who took the time to listen to my concerns and move forward teaching him not only how to make the sounds but to also use sign language AND a communication device. This is exactly who we needed in our life to get our son to start "talking". Today was a bittersweet day for me as I watched Abram walk to the car one last time with his sweet aide, who won't be with him next year. When people take your child in and treat them as your own and understand them and their needs perfectly, they become like family and you worry that the next 1:1 aide won't be as great or that they won't "get" him like she did. It stirs another whole world of anxiety for me but the lucky thing is - next year he will be in the 4-year old pre-school with the same kiddos he had in his class this year - so hopefully that makes it easier on him to transition to afternoon classes. He is such an early riser (up no later than 6am, daily) that I worry afternoon class will be hard on him with no nap - but we shall see how it goes when the time comes. In addition, next year we are going to try for four days a week for the full class time versus just the three days a week for 90 minutes. It will be an adjustment and he gets tired very quickly but I know it will be SO GOOD for him (and ME) to get some time away and do things for ourselves. He deserves to be around other kids and learn from other adults besides his immediate family! Abe has come A LONG WAY this school year. He did (2) rounds of intensive MNRI therapy for (6) months out of the (9) months he was in school and has vastly improved in his ability to navigate different types of ground/terrain and can make several new sounds and is even saying "mama" every single day - WITH PURPOSE! This was something I worried I may never hear as his condition includes "absent speech". Abram also made a sweet friend who helped keep him in line (literally, as they had to go wash hands for snacks) and included him in play-time. I approached her mother at the "muffins for moms" event they had for mother's day and weeped at her as I thanked her for raising a kind child and she told me that Abram was her favorite and she talked of him often. So, we exchanged numbers and I hope that we get to have some play dates this summer. I'm thrilled to see the look on Abram's face when he sees her for the first time after school has let out. Abram has also grown taller, thinned out a bit and is SO FIESTY after we've officially been off of Klonopin for 6 months. I swear I've seen him gain more and more cognitively each month after we took away that nasty drug. He's come more and more alive and is nothing but a ball of energy from 6am - 9:30 or later but I will so take that over his days of being drugged up, sleeping and regressing on his skills. I will take my little tornado any day over what used to be our lives. This summer is looking to be a pretty incredible one. He's got a sweet new bike, loves his new little kiddie pool in the back yard and is RUNNING down the hill in our back yard when last year he had to hold on to the fence to get down the hump in the very back of the yard. He never ceases to amaze me and BLOW MY MIND! Abram is my little fearless warrior who is out to prove everyone wrong and I love him dearly. He's taught me so much about life and love that I can't even believe that I get to be his mommy. Our follow-up with Neurology today went phenomenally. All is good - no seizures - no pharma. In another month it will be TWO YEARS since we started cannabis and changed Abe's life.
Endocrinology was a SHOCK. Abe was borderline failure to thrive as an infant. His lack of growth, global delays and short stature were a major concern to his Endocrinologist. She even recommended growth hormone injections last year -to which I declined. Today.. He is ON THE CURVE. He grew over 4 inches. His height and weight are "normal". NORMAL. I have no doubt that cannabis played its part in this part of his health, too. With healing the brain comes so much good - his cortical dysplasia be damned!! The bad part?! Abe flipped out when the sweet nurse tried to measure his head. Too many EEGs and PTSD makes this kid lose his mind at the sight of a tape measure. In the struggle, she accidently knocked out his loose tooth. (see photo!) He swallowed a lot of blood during the whole ordeal and after working himself so badly during the blood draw, he vomited multiple times all over blood lab. It was awful. The nurses took it like champs..... but at least it is the kind of awful I can handle with a little clean up. We gotta focus on the positives and that is this: Abe is continuing to receive POSITIVE medical reports since we started cannabis when before - we had nothing but difficult appointments with bad news and worsening medical conditions. Cannabis is Medicine! The ugly truth of it all is that this is hard. I'm so tired of fighting for everything. Ever since the moment that Abram came into this world I've fought tooth and nail for him to get everything he deserves from proper medical care and therapies to fighting for law changes for him to have medical cannabis - a drug our Neurologist told us to try but one our lawmakers feel they have a right to keep from him.
The truth is - I am writing this at 3:00 in the morning. I'm dead tired after 2+ months of no sleep but I couldn't shut my brain off. After being up most of the night with him - my husband went to lay with Abram in his bed so that I could get some rest - yet - hear I am - pecking away at these keys because it was either do this or sit in the dark and stew or cry. People assume that because Abram has had success on cannabis oil that his life is "fine" and that he doesn't have to struggle anymore but that is far from the truth. Every day is a struggle for Abram. He has to try VERY HARD to do the things most people take for granted. Whether that be simply walking to the mailbox and navigating his feet on gravel or taking the steps downstairs to get to our level of the house. Today on the way to the mailbox, the Garbage Truck came through and after an incident at school where he started punching himself in the face as the dumpster was being lifted into the air and the loud metal sound (banging) sent him over the edge... I held him back in our neighbor's driveway so that he wouldn't run off or hurt himself. Instead he slammed his head into my wrist bone and tried to beat his little face with my hands as I held his so that he couldn't punch his face. The rest of the walk went fine but I have to constantly be on guard. It is HARD to go places (like parties or the playground or play dates) with Abram because I so yearn to be able to sit and chat with friends but Abram requires my assistance 100%. I can't "just" let him go off as he doesn't understand danger, has no concept of the fact that digging in a drawer can hurt him, or that opening someone's closet and throwing everything out of it isn't actually a very nice thing to do. I can't let him walk down the stairs unassisted to play in the yard or let him loose on a playground because he will literally walk right off the platform - as he has no depth perception and doesn't understand that the big gap in the metal is for him to slide down a slide or a fireman's pole or to jump off of and he can get seriously hurt. Abram will be 5 in July and our home is still baby-proofed and once he out-smarts that we will have to opt for bigger, more expensive gear to keep him safe. He also gets into what I call "loops" at people's homes where he finds one or two things that interest him and he continually goes back and forth in these big literal loops to do those exact things every single time. He remembers those loops and he sticks to them no matter what. It makes it hard to visit with anyone outside of my own home because I constantly have to follow him and make sure that he isn't getting into something that can hurt him. So, it makes having an adult conversation difficult at best. It is HARD to see what other neuro-typical children are doing and although I know Abram is the BEST Abram that I know he can be - it is and always will be difficult to catch the glimpses of what-could-have-been. I don't stay there long and try my best not to linger on those thoughts but it is honestly a kind of grief that will ALWAYS be there and that is 100% okay and it is normal. It will always rear it's ugly little head and give me that little tinge of sadness but only long enough to remind me that Abram is Abram and he is so strong and so brave and fights so hard to have every little bit of freedom that he has. He accomplishes all the things that everyone else just takes for granted. Abram doesn't know the difference of *not* doing those things and since he's my only child - I've never experienced those things as a mom myself. Sometimes it's just hard to get those glimpses and wonder what he'd say to me if he were able to express things in that manner and I wonder if he yearns to play with other kiddos or if it's just not even a thought that crosses his mind. The not knowing kills me. It is HARD to always be positive and keep a smile on my face when nights are long and days are hard and things are a constant struggle to keep and maintain therapies and doctors appointments and routines in place in our life. It is difficult to go nearly 5 years on little-to-no sleep and spending the very little downtime I do have fighting for everything that he deserves or defending myself as to why he needs such things. Well intentioned people say some of the most misinformed things and for parents like me it's a constant battle to explain things well enough that people understand my son's medical diagnosis and that I don't just endlessly fight for his rights to have adaptive equipment and access to safe, legal medical cannabis just for shits and giggles but because he actually NEEDS it. As Abram ages, it's getting a little easier for people (strangers) to see that Abram isn't "typical". That in itself makes my heart hurt a little. It's hard to take him shopping now if the store doesn't have the special needs cart because he's getting too big for the top of the cart and letting him walk through the store is honestly - too hard to do if you want to get out of there with what you went there for in the first place AND not have everything at eye level and below swiped off the shelves entirely. I share Abram's story so people who love us can get a glimpse into what life is like for him and for us. I share his story so that everyone else who has a child diagnosed with UBE2A Deficiency Syndrome can find us and connect with us and have a little glimpse into our lives: the good, the bad and the ugly. I share it all because it's the only thing that keeps me grounded and it's brought such wonderful people into my life. Throughout my ups and downs with emotions - one thing remains true: Abram is a fighter. He always has been and he always will be. He is stronger than anyone else I have ever known and he never gives up. He has his bad moments in a day but as soon as they are done - they are done - and he moves on throughout the rest of the day with a smile on his face. He doesn't linger on his unhappiness like we adults do. Abram has had to work so hard to do the simplest of things that everyone I know takes for granted and because of that - we get to celebrate all those little things, too. Abram is my very own personal little hero and a daily reminder that no matter what - life is worth smiling about. Friday night was a long night for me as I stayed up all night long waiting to see the Iowa House debate a medical cannabis bill. I was hopeful that the original Senate Bill (that passed 45-5) would have been able to be debated and passed in the Senate but that did not happen. I am optimistic that what we will have in place now will be one giant step in the right direction. The Iowa House and Senate fought through the night - I finally fell asleep at about 4am and woke up just two hours later from my friends messaging me that the debate was about to start. By the time I was able to think coherently - the bill had already gone from the House to the Senate and I had no idea what I was looking at. What we ended up with is not what everyone has been fighting for - even our key friends in the legislature agree to that - but I feel that we are heading the right direction. We will now have growth and distribution of cannabis in Iowa with two manufacturers, five dispensaries and it was expanded from "intractable epilepsy only" to 15 conditions. Many conditions were taken from the bill which was highly disappointing as my best friend from grade-school suffers from EDS and her condition was taken from the bill's list. In addition, PTSD and Ulcerative Colitis were removed which hurts my heart for my friends who I have stood by at the Capitol and who have fought for this just as hard as anyone else. I just hope that the "untreatable pain" condition can be the umbrella that covers those whose specific diagnoses were left behind until the Medical Advisory Board can add those conditions back in. The GOOD thing is that now there is a Medical Advisory Board involved. This is something that we have fought for as advocates to get. This simply means that there will be a board of seven physicians and one law enforcement person who will be able to add conditions, decide the method of administration and who will have the ability to suggest THC % increases to the legislators. For me personally, I am pleased that we got this much at all. With everything that has happened the last couple of years I was terrified that we'd just get an expansion of the bill but still not be able to have access. Now we will have access here, we may get reciprocity with bordering states to get medicine while we wait and now Doctors with knowledge in cannabis will be guiding the way for adding conditions and changing the cap on the THC percentage for those who need more THC. We've fought long and hard for this and although it isn't everything that we wanted - it is a step in the right direction and a compromise in the Legislature that we should be pleased even happened considering the political climate in Iowa right now. IOWA - the 30th state to allow the growth of Cannabis. It'd say that's pretty cool. If you'd like to read the bill's text - I highly encourage you to do so. Be sure to click on the Klein Amendment on the drop-down menu to see it all. https://www.legis.iowa.gov/legislation/BillBook?ga=87&ba=HF524 This is a great news piece that shows the views from both sides of the aisle. Rep John Forbes is a Pharmacist and has been a huge part of my advocating journal personally and Rep Jared Klein who wrote this bill promised me he would not forget Abram's Story when I testified at a subcommittee hearing earlier this session.
http://www.weareiowa.com/news/local-news/medical-marijuana-bill-heads-to-governors-desk-session-ends-after-long-night-for-lawmakers/697280607
Things are finally moving at the Capitol for Medical Cannabis. The Senate is fast-tracking a bill (SF 506) and will debate on the floor as early as Monday. This bill is actually exactly what sick and suffering Iowans need: it includes multiple medical conditions, a medical advisory board as well as growing and distribution in Iowa as early as 2018. It flew through the sub-committee and full-committee hearings this week and will hopefully make it off the Senate Floor as early as Monday.
I'm trying to remain hopeful but it's hard knowing the Houses's stance on medical cannabis and what their opinion is on what percentage to cap the THC. For some reason, many Representatives in the House have been quoted as saying that they won't allow more than 3% THC and claim that there are proven trials showing that this is the key amount of THC used before people get "high". Sadly, this is untrue as many people with cancer and other debilitating diseases NEED more THC. In fact, the children with Epilepsy (like my son) that they use as an example of "only" needing low THC oils actually NEED more THC in many instances. I for one would LOVE to have access to products out of Colorado called Cannatol. Cannatol makes several products including a nasal rescue spray for Grand Mal seizures and that product is 5% THC. So people in Iowa who have children with Grand Mals wouldn't even be able to use that as a rescue med because it has 2% more THC in it than some House members feel we should have access to. The option for rescues instead are heavy duty benzos that have to be administered rectally and leave children in a drug induced phase for days vs being able to come out of a Grand Mal quickly and with no side effects like the kiddos shown in the viral Cannatol videos. Here is a video of Cannatol being used:
Here is a video of Diastat that is used for emergency rescues. Please watch and ask yourself if you were in this situation - would you want to have the right to try a nasal spray vs a rectally administered rescue medication? Diastat is extremely sedating and is most definitely getting children "high".
I will remain hopeful that the House will do the right thing for families like mine but with the comments that have already been publicly made in regards to this bill, I think that perhaps all they are willing to give us this year is a removal of the July expiration date... but we shall see. I attended House Speaker Linda Upmeyer's Legislative Forum on our way home from MN a few weeks ago and she claimed to not be against growing/distributing medical cannabis in Iowa. I hope that she and the Leadership decide to do the right thing for those who suffer and for those of us who have children who need safe, legal access within their own state's borders.
Here are some articles for reference: We just learned that there is a Rare Patient Advocacy Summit in Irvine, CA this fall during September 14-15. Many of you who visit this site often know our story and know that Abram has a rare diagnosis called UBE2A Deficiency Syndrome. It is quite rare and there are only a handful of people in the world known to have this condition. The individuals we read about in the case studies all live in foreign countries and are not available to speak to due to language barriers and/or the desire to even speak to others about their children's diagnosis.
Through this website, I was lucky enough to not only be contacted by the micro-biologist who wrote the first Case Study on this Syndrome - I have also been able to find two other families with young boys who are also living with UBE2A Deficiency Syndrome. One child lives in the UK and his mother and I are in regular contact via e-mail. The other boy - about 2 years younger than Abram lives in California and just 5 hours from where this Summit is going to take place! His family will be attending the summit as well and we would all very much like to meet, have our boys meet one another and be able to meet the only other family in the country with a child living with UBE2A Deficiency Syndrome. It would mean the world to me to be able to attend the conferences at the Global Genes Rare Advocacy Patient Summit so I can learn how to better advocate for Abe but to have the opportunity to meet Abram's UBE2A "brother" would be life changing. Please take a look at our fundraiser and if you can, please spare a few bucks to help us get there. It means more than I can even explain in words. Thank you. Abram and I are finally back from his surgery at the Mayo Clinic where he underwent an airway endoscopy (all the way down to the bronchial tubes) as well as an adenotonsillectomy - where they surgically removed his tonsils and his adenoid. I thought I'd share our experience here because as my son suffered and while I madly googled for ways to alleviate his suffering in the middle of the night - I found zero information about kiddos with special needs having this type of surgery done. So, I am going to share how things went with Abram because healing and surgery for a child with special needs and major sensory issues is vastly different than that of a typical child. For most children, these types of procedures are outpatient and the child gets to return home to recover. For children like Abram who have a history of neurological issues/sensory issues, they recover during a hopefully brief stay in the PICU as well as at least an overnight hospital admission and for us a medically required 14 days away from home and near the ER of Mayo incase anything went wrong. I'm sharing this particular journey because we got a lot of good advice that may or may not work for your situation. For Abram - who is non-verbal, has a seizure history and has major sensory issues/tactile issues and feeding issues - this was NOT an easy task but we got through it. Suggestions for other parents can be found at the bottom. Although all sweet and well-meaning ideas - none of them would work for Abe because he doesn't do cold/wet/squishy, ever. I literally tried everything - food and drink wise to try to make him comfortable but he wanted nothing to do with it and the ENT basically said that Water was the best thing for him, anyhow. I stocked up on Pediasure, Apple Juice, Boost, Almond Milk, Mac n' Cheese, Soft Muffins, etc. He wanted nothing to do with any of it. My Summary: Abram would not eat at first, period. We were repeatedly reassured that this was "normal". His breath literally smelled like a carcass that would most likely gag a vulture. He sounded raspy when he slept and he needed around-the-clock medication alternating Tylenol and Ibuprofen every 3 hours, no matter what. Set your alarms and don't miss a dose, period. If your child is old enough and can tolerate suppositories, do it. Abram did NOT want to swallow and we had to restrain and force medicine (as instructed by the nurse) but for his age/weight there were no suppositories for us to use and I am not certain that would have gone over well, either. The only thing that helped us keep him somewhat behind the pain was the ability to dose his cannabis oil - and that is clearly not even an option for everyone. Water was KEY. We used a tiny plastic dixie cup and made him drink that every 30 minutes. They NEED 3-4 wet diapers a day. Abram was having 2-3 and it was making the nurses nervous and we were nearly on the verge of having to go back for IV fluids but thankfully pushed through it. He seemed to enjoy his baths and would actually drink the warm bath water willingly. Day 1 - March 10
Abram was scheduled to arrive at the Hospital (St. Mary's) by 8:30 am on a Friday. We arrived on-time and had withheld food and drink as required for the surgery. Our surgery actually ended up being pushed back 5 hours because there was an emergency/accident that came into the Hospital that required our surgeon.
Abram was being a good boy (and actually napped) but by the time we got to the pre-op room, he was getting agitated as he'd been without food or drink for 17 hours and did not understand what was happening. Mayo is great about sending in Child Life people to try to find toys to entertain your child. Abram was appeased by a weird long vibrating tube that he chewed on while we spoke with the Anesthesiologist. They gave Abram a dose of Versed to help relax him before he had to go to the Operating Room, which is used to help calm kids/make them sleepy. However, it is also a benzodiazepine - which we just spent 18+ months weaning out of our son's body because another benzo (Klonopin) caused more frequent and worsening seizures. Of course, as soon as the Versed kicked in, the anesthesiologist extensively warned us about how all of this just may indeed trigger a seizure and that IF he were to have one, to realize it was from all the medicine and the anesthesia and would not necessarily mean that his seizure-free streak was over. This made me scared and Abe was *still* nervous and agitated so after trying to squeeze me into a "one-size-fits-some" surgical outfit they wrapped me up in two different gowns (talk about embarrassing) so that I could actually go into the OR with Abram. Once gowned up, I laid on Abram's bed with him and they actually rolled me back into the Operating Room with Abram so that he could be with me until he fell asleep. Unfortunately, the nurse in the room decided to move him to the operating table before getting the Ok from the Anesthesiologist and tried putting on the 02 monitor on Abram's fingers - which actually woke him up and caused him to be very upset. The anesthesiologist told her to back off and gave her a good bit of advice about how there was a reason I was in there with my child, that he was anxious and that she shouldn't have touched him. I left the room with a smirk on my face but felt good that at least there was someone in that room with my boy who GOT HIM. Abe's Dad and I were told that the surgery would take 2 hours and by now it was 2:00 in the afternoon so we tried to go get lunch with the apology vouchers we were given but the cafeteria was closed so we had to run across the street to go get some food. We were given a pager before we left and we warned to get back as soon as possible if it went off. Within an hour, the pager went off and we ran back to the surgical floor as fast as we could - worried that something had happened - only to find out that he was out of surgery and that the Surgeon wanted to speak with us. She told us that his surgery went well without issues, that she found some "cobblestoning" in his throat probably caused by reflux and that otherwise, everything else looked good - as in there were no other obvious reasons for our son to have obstructive sleep apnea with the tonsils and adenoids gone. We waited another hour and were finally able to go see Abram in the PICU. Abram was still asleep when we got in there but he levels were doing good and they were able to take him off of his oxygen without any de-stats within the first hour - which was good. They were still giving him Fentanyl for pain relief but he slowly woke up and only spent 4 hours in the PICU before we were admitted to the Hospital in his own room. The only issue we ran into that night was an issue with a nervous nurse and our son's cannabis oil - but I'll leave that for another post. In the end, he got his medicine, he NEVER seized and Abram was able to drink water that night, which was a huge relief. Day 2 - March 11
Abe was released from the Hospital by 2:00 the next day but he was in a lot of pain. The Hospital gave us a schedule where we were to be alternating pain medicine (Tylenol and Ibuprofen) every 3 hours, which was a chore. Abram was fighting us on taking the pain medicine and had to be restrained just to get the medicine in his mouth. But, he was actually drinking water and even ate some macaroni and cheese so we called that a win.
He slept a lot as I think he was worn out from the whole ordeal of it all but it was good because at least he wasn't hurting when he was asleep. Day 3 - March 12Abe was in a lot of pain on Day Three. Even though he was getting his pain meds as instructed (I even set alarms on my cell phone so I would wake at night/day to give him his meds on-time and keep ahead of the pain). The worse part was, he was running a bit of a fever and he screamed and cried and fought every time we needed to administer the pain meds - which made it worse for him and made it harder on me. This is where his sensory issues come in to play as he was hurting badly but didn't want to eat/drink anything cold and swallowing the medicine seemed painful for him. The bathtub luckily appeased him and he would at least drink some warm tub water so we spent a lot of time sitting in the tub. We had some folks offer us some suggestions like suppositories for pain meds but we could not find any locally that were for kids under the age of 6. There were kept behing the counter at the pharmacies and could not be purchased off-the-shelf so I couldn't even try that as a solution for Abram. Many folks also mentioned that their child got codeine to deal with the pain but our surgeon told us that children with sleep apnea and children under the age of 6 are no longer given codeine because of several deaths in the last 5 years with this exact surgery. So Abram's only option for pain relief was Tylenol, Ibuprofen and his cannabis oil. My mom came up to help and she was great at encouraging Abram to eat some macaroni and cheese and got him to drink several ounces of water out of small dixie cups. Day 4, 5 & 6 - March 13 - 15
Abram is suffering pretty bad after an airway endoscope down to his lungs and having his tonsils and adenoid removed.
He's been on Tylenol and Ibuprofen every 3 hours plus his cannabis oil and he's still hurting, can't stop whining and hasn't eaten food in about 36 hours. I can still get him to drink tiny amounts of water every 30 mins, so he still has had a few wet diapers but this crap is no joke. He is on the autism spectrum and has major food issues on a good day.. and even then he won't touch cold/frozen foods or anything squishy/wet. Add in pain and he's not interested in eating at all. They say Day 5-7 is when the scabs start sloughing off a little and considering his poor little breath smells like a hot carcass, I'd guess that's another reason he'd have no appetite. I just hate seeing him hurt so badly. Day 7 - March 16
Still hurting. Still hasn't eaten food since Monday except 1/2 a chocolate chip cookie yesterday.
He will drink water little sips at a time. Still has wet diapers. Mom is still worried. I called the Nurse to see if it was okay for him NOT to be eating and they reassured me that it was "normal" but that if he hasn't eaten by noon tomorrow - to call back. Pain management for these little ones seems to be lacking somehow. Update: Abe ate some crackers of all things today around noon. He didn't want anything else the rest of the day but at least he got something else in his tummy besides meds and water. The nurse said his scabs will be coming off soon and judging by his breath, I'd say something foul is going on in there. Poor kiddo.
Day 8 - March 17
Taking a little snooze after being up all night.
We rented a little house up here for the entirety of our stay. So much cheaper than the hotels and so peaceful and quiet. There's a park not far from here that actually has adaptive swings so if/when he feels up to it, we'll try for that again. He keeps signing "Grandma", "kitty" and "swing". I think he misses home. One week down. One to go This day things seemed to be turning around. We were able to get out a bit, go to a park, see some geese and he actually ate some food. But then in the evenings the pain seems to hit harder for some reason and we're right back to worrying. Day 9 - March 18
Still hasn't eaten since yesterday again but he's found a brief reprieve in the tub.
Since Monday he's only eaten a handful of crackers and three nuggets.
Day 10 - March 19
He slept good, ate breakfast and was excited that his Grandpa was coming to visit him.
Day 11 - March 20
Abram's Grandpa came to stay with us for a few days and having him around really brightened his spirits. He finally ate some food, drank some water and was able to play at the park for a bit. But we did notice that he started to suck in his bottom lip, pooling drool that looked like clear slime and was having a hard time swallowing.
Day 12 - March 21
Abram's favorite thing in the world is fire trucks and emergency vehicles so I arranged for a tour at the Fire Station nearest our home to cheer him up! He really liked the 100 year old fire state at Rochester's Fire Station #2 but just as he was getting the chance to sit IN the big firetruck in the garage, an emergency happened and we had to leave in a hurry. He was so upset, he actually bent in half and threw a fit - something I hadn't really see him do. Poor kid. So I scheduled another tour at a larger Fire Station for him before we had to leave.
But by nighttime he was back to hurting pretty bad and was pretty unconsolable and was back to pooling the creepy alien slimey saliva. It was freaking my dad and I out so much that I actually called the on-call Nurse Hotline and after she walked me through several steps on the phone she patched me through to the ER and she was worried that we just needed to go right to the hospital. But once again, we were reassured that all of this was normal and not to worry. It was hard NOT to worry when your kid won't swallow and what is coming from his mouth can be pulled out like strings. Yet, it was clear (smelling of carcass)?! Day 13 - March 22
Abe's a bit chipper again this morning. It seems the key is to keep meds coming every 3 hours. It was chilly but he kept signing "drive, train, you, me, please" so we went to the park and let him hang out in the wooden train that he adored.
The firemen the other day suggested we eat at Mr. Pizza South before we left town.
So, Abe and I ventured over and he had his first experience in an actual pizza parlor and loved it. He of course made friends with the waitress who accepted all his demands while he made me feed him ice water by the straw full. I'm just glad he's feeling better and he ate a slice by himself. Day 14 - March 23
Abe got a tour of Fire Station 1 in Rochester. It was a good pick-me-up for him and we were so thankful to Joe for showing him such a good time and spending some time with us. He had a blast.
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About MeHello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis. MOST POPULAR BlOG ENTRYJOIN US
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