Today was like any other day, at least any other day for me. Okay, so maybe having one of my kiddos undergoing surgery is not something I do every day, but living with their ever-increasing medical needs, finding balance between work and caregiving, as well as trying to find some semblance of self in all of it, is definitely normal for me.
After getting up extra early to get the smaller three out the door, while being ready myself, we somehow managed to make it to G’s surgical check-in only ten minutes late. Getting checked in was the easy part–convincing him to actually stay in the pre-op room and change into the gown was a whole other ordeal. Lucky for us, I have practice in negotiating with laboring women (who I always say are a combination of a young child and a wild animal) and Giacomo definitely was in line with many of those folks I have dealt with. I pulled out my best doula skills (and a small amount of bribery for iPad use post-surgery) and somehow G made his way into the gown, as well as got an IV in place for sedation.
This surgery prep for Giacomo was no joke–the guy was hungry. Strike that. He was hangry. He was scared. And so was I. He was about to get Botox injections in his salivary glands for his sialorrhea (that’s a fancy way of saying excessive drooling.) While all of his care team has recommended this be done and it seemed like a really good idea, based on the literature available, it’s still a relatively new procedure, that, due to his myotonic dystrophy and possible complications with breathing, needed to be done in the OR. To make things more fun, there was a possibility of him having to undergo general anesthesia if they were unable to do things with a lighter sedation and still protect his airway. This general anesthesia is a bigger deal for those with myotonic dystrophy (which I will abbreviate with the medical acronym DM1, at times, for the sake of minimizing syllables) and would land him in the hospital overnight, at a minimum, as well as reduce the likelihood of us being able to repeat this procedure in the future when it wears off after about 6-8 months, which will probably be needed, since his disease is definitely not going to wear off by then (in fact, it never will, and will only get worse.)
He was belligerent and angry with me for bringing him there, despite the fact that we had talked at length about how this, along with the host of oral modifications that he is currently in the midst of (an expander and braces at the moment, with oral jaw surgery coming in the future,) were going to improve his ability to talk, eat, and swallow, which are all pretty important things. He pulled out the big guns, yelling at me through tearful eyes, saying, “I don’t trust you! I don’t trust any of you!!” After picking my broken heart up off of the hospital tile floor, I said to him, as calmly as possible, “Giacomo, can you please tell me what you’re afraid of?”
“I’m afraid I’m going to die!”
Okay, great. Do I follow my doula rule and never tell someone everything is going to be okay, because if might not be? Or do I reassure my terrified child, as I have put my trust in the medical team to do the best thing possible for him? My mind had already been there a few times since we decided to do this procedure–after the first discussion with the neurologist and pulmonologist, then again the first time they mentioned general anesthesia when I made the appointment, when I asked everyone in my Myotonic Dystrophy Caregivers support group and they all said they wouldn’t do it, when the doctor doing the pre-op yesterday insisted on an EKG, and then another one, as the first one seemed really off from his last EKG (it was user error, thankfully, and the repeat one was fine, showing his normal baseline heart arrhythmia, which is already scary in and of itself,) and then from the PTSD of walking into that surgery waiting room, where I had been with Isadora twice before–once for heart surgery and once for her swallowing a quarter that, in normal kids, would have passed, but for her, given the DM1 and her trachea deficiency from her vascular ring heart defect.
“Oh buddy, you’re not going to die!” I said hoping that I wasn’t lying. “You are strong and brave! And remember that line from the song, ‘What doesn’t kill you makes you stronger.’ That’s going to be you! You are going to be stronger after this!”
Well, somehow, he ended up believing me, or at the bare minimum, trusted me, as I continued to use my doula skills to comfort him and relax him as much as possible, while meeting him where he was at, every step of the way, never forcing him to do anything, but trying to create a safe space for him to be heard, have his questions answered, and to be well-informed about what was going to happen to him, and eventually G went back to the OR for his procedure! (Okay, I’ll be real that the relaxants they gave him probably helped, as well as made him actually cry with laughter at the antics of a Tom and Jerry cartoon, which he kept on as a distraction throughout this whole ordeal.) 
About an hour later, I got the good news–no general anesthesia!! He made it through the procedure with sedation alone, and after a bit I met him in recovery. He was pretty sleepy, all hooked up to his BiPAP we had brought from home, in the event of a longer hospital stay, but was now providing him a little extra breathing that support that he was used to. After three hours in the PACU, I took a wobbly, but happy, guy home, who spent the rest of the day relaxing in bed, eating ice cream, up to the point that the meds left his body and he bounced back into his normal self, washing and putting away his clothes, before scarfing down tacos for dinner. He also was quite pleased with the gift of some cool socks I got him in honor of the fact that he detested the hospital grippy ones he had to wear instead of his own.
Okay, apparently all my worrying had been for nothing. This kid bounced more than back, and actually seemed like a different guy after this mini surgery. His secretions already seem to be less and his confidence is definitely more, so much so, that he insisted on sharing all about his journey with Luck, in an effort to make him less scared, as he is having the same procedure in a week. The icing on the cake was when he stopped me on his way to bed tonight, and gave me a huge hug, saying, “Mom, I just want to say thank you for helping me with all of my saliva.” Yes!! My insistence to use the medical care that we are so fortunate to have has paid off! My son doesn’t hate me after all and is seeing the value in his care!! This is a huge win!! Even better? When we did our nightly “Best and Worst of the Day,” his best was: Having surgery, and his worst: Nothing.
And my words to him, as I tucked him into be….”Giacomo, remember this morning when I said that what doesn’t kill you would make you stronger? Well, I think that definitely happened, but even more than that, I would say that what didn’t kill you actually made you BRAVER!”
Yep. This kid (and his siblings) are pure inspiration for bravery and courage. I am beyond blessed that they chose me to be their mom.
Thanks for sharing this both scary and touching “adventure” of Giacomo’s with us. Y’all are an extraordinary family.
I admire your strength, it must have been a very hard day for you too, hope you were able to decompress the next day. Keep doing what you are doing, xxx
Nicely done, Mom… with Giacomo and on your first blog post! Love the story… Victory!
Aw, shucks….thanks for saying so 🙂
Thanks so much–it definitely was! I appreciate your support and encouragement 🙂
Thanks!!
I discovered your weblog web site on google and test a few of your early posts. Proceed to maintain up the excellent operate. I simply further up your RSS feed to my MSN Information Reader. Looking for forward to studying more from you in a while!?
I am only writing to let you understand of the helpful encounter our princess found viewing your site. She came to understand several things, most notably what it is like to possess an excellent giving spirit to let other folks clearly completely grasp a variety of specialized topics. You undoubtedly exceeded her expectations. Thanks for giving these insightful, trusted, explanatory and also easy tips on the topic to Ethel.
A lot of thanks for every one of your work on this web page. Gloria delights in participating in research and it’s simple to grasp why. Most of us know all relating to the compelling form you make practical guidelines by means of the website and therefore boost contribution from visitors on this theme and our own princess is undoubtedly being taught so much. Take pleasure in the rest of the year. You are always conducting a very good job.
I enjoy you because of your entire efforts on this blog. Kim take interest in setting aside time for research and it’s easy to see why. My partner and i notice all relating to the lively form you convey reliable guidelines by means of the web site and as well as boost participation from visitors on the concept so our favorite simple princess is certainly becoming educated so much. Take advantage of the rest of the year. You have been doing a tremendous job.
I not to mention my guys were examining the great tips and tricks on your web site and so all of the sudden developed a horrible feeling I never thanked the blog owner for those secrets. My guys appeared to be for this reason happy to read all of them and now have clearly been using those things. Appreciation for getting considerably kind as well as for settling on such incredible guides millions of individuals are really desperate to be informed on. Our sincere apologies for not expressing gratitude to sooner.
My wife and i were absolutely delighted Louis managed to round up his basic research from the ideas he had from your very own web pages. It’s not at all simplistic to just choose to be giving away methods which usually people could have been making money from. And we also see we need the website owner to give thanks to because of that. The illustrations you’ve made, the simple web site menu, the relationships you aid to instill – it’s got all unbelievable, and it is aiding our son in addition to the family reason why that subject matter is pleasurable, which is certainly incredibly serious. Thank you for the whole lot!
I and my friends ended up digesting the good recommendations located on your web site then then came up with an awful feeling I never thanked the web site owner for those strategies. The boys are actually as a result stimulated to read through all of them and already have clearly been making the most of these things. Many thanks for genuinely simply kind and also for opting for this kind of really good things most people are really eager to learn about. Our honest apologies for not expressing appreciation to you sooner.
I simply wished to say thanks again. I’m not certain the things that I could possibly have handled without the thoughts provided by you on such a subject matter. Completely was a very hard setting in my view, but observing a well-written style you solved it took me to leap over happiness. I am just thankful for the help and thus hope you find out what an amazing job that you’re getting into training many people via your site. Most probably you have never come across all of us.
A lot of thanks for each of your labor on this site. My aunt delights in doing research and it’s really easy to see why. We know all regarding the powerful means you make vital tricks via the web site and in addition invigorate participation from some other people on this matter plus our girl is undoubtedly discovering so much. Take pleasure in the remaining portion of the year. Your performing a fabulous job.
My wife and i have been very joyful that Jordan managed to finish off his investigation via the precious recommendations he was given out of your web site. It’s not at all simplistic just to choose to be giving out steps people today might have been making money from. We really realize we have the website owner to thank for this. The explanations you’ve made, the straightforward website menu, the relationships you can help to foster – it’s got most spectacular, and it’s aiding our son in addition to our family know that this matter is pleasurable, and that is especially pressing. Many thanks for the whole thing!
I and also my buddies ended up digesting the nice tips and tricks found on the blog and unexpectedly I had a terrible suspicion I had not thanked the web site owner for those secrets. The people are actually for this reason happy to see all of them and have now really been having fun with them. We appreciate you turning out to be simply thoughtful and then for pick out this kind of incredibly good things millions of individuals are really wanting to learn about. My personal honest apologies for not saying thanks to you earlier.
I抦 impressed, I have to say. Really rarely do I encounter a weblog that抯 each educative and entertaining, and let me let you know, you’ve gotten hit the nail on the head. Your thought is outstanding; the issue is one thing that not enough individuals are speaking intelligently about. I am very completely satisfied that I stumbled across this in my search for one thing regarding this.
Youre so cool! I dont suppose Ive read something like this before. So nice to find anyone with some unique ideas on this subject. realy thanks for starting this up. this website is one thing that’s wanted on the net, someone with a bit of originality. useful job for bringing one thing new to the internet!
Spot on with this write-up, I really assume this website needs much more consideration. I抣l in all probability be again to read rather more, thanks for that info.
The next time I learn a blog, I hope that it doesnt disappoint me as much as this one. I mean, I know it was my option to learn, however I really thought youd have one thing fascinating to say. All I hear is a bunch of whining about something that you possibly can repair in case you werent too busy in search of attention.
A powerful share, I just given this onto a colleague who was doing a bit analysis on this. And he in actual fact purchased me breakfast as a result of I found it for him.. smile. So let me reword that: Thnx for the deal with! However yeah Thnkx for spending the time to debate this, I feel strongly about it and love studying more on this topic. If possible, as you develop into expertise, would you mind updating your blog with more details? It is extremely useful for me. Large thumb up for this blog publish!
Youre so cool! I dont suppose Ive read something like this before. So nice to search out somebody with some unique thoughts on this subject. realy thank you for beginning this up. this website is something that’s needed on the internet, somebody with just a little originality. helpful job for bringing one thing new to the internet!
I抦 impressed, I have to say. Actually rarely do I encounter a weblog that抯 both educative and entertaining, and let me tell you, you’ve got hit the nail on the head. Your idea is outstanding; the issue is one thing that not sufficient people are talking intelligently about. I am very blissful that I stumbled across this in my search for something regarding this.
Your house is valueble for me. Thanks!?
There may be noticeably a bundle to find out about this. I assume you made sure good factors in options also.
Can I simply say what a reduction to search out somebody who truly knows what theyre talking about on the internet. You positively know how one can bring an issue to gentle and make it important. Extra folks have to read this and perceive this facet of the story. I cant believe youre not more fashionable since you positively have the gift.
After I originally commented I clicked the -Notify me when new comments are added- checkbox and now every time a remark is added I get 4 emails with the identical comment. Is there any manner you may remove me from that service? Thanks!
There are certainly loads of details like that to take into consideration. That could be a great level to deliver up. I supply the thoughts above as basic inspiration however clearly there are questions just like the one you convey up where a very powerful thing will likely be working in sincere good faith. I don?t know if greatest practices have emerged around things like that, however I’m positive that your job is clearly recognized as a good game. Both girls and boys really feel the influence of only a second抯 pleasure, for the rest of their lives.
OhHEa2 It as nearly impossible to find experienced people about this topic, but you sound like you know what you are talking about! Thanks
You have a very good layout for your blog i want it to use on my web page too
Wow, superb blog layout! How long have you been blogging for? you make blogging look easy. The overall look of your site is fantastic, let alone the content!
There are definitely plenty of details like that to take into consideration. That is a nice point to deliver.
Im obliged for the post.Really looking forward to read more. Awesome.
This is very interesting, You are a very skilled blogger. I have joined your feed and look forward to seeking more of your fantastic post. Also, I have shared your site in my social networks!
This is very interesting, You are a very skilled blogger. I ave joined your feed and look forward to seeking more of your excellent post. Also, I have shared your site in my social networks!
It’аs actually a great and helpful piece of information. I am happy that you shared this useful info with us. Please stay us up to date like this. Thanks for sharing.
Very good info. Lucky me I came across your website by accident (stumbleupon). I have book-marked it for later!
Thanks so much for the blog article.Really looking forward to read more. Great.
This is one awesome article post.Really thank you! Really Great.
It’s best to take part in a contest for top-of-the-line blogs on the web. I will suggest this site!
Loving the info on this web site , you have done great job on the posts.
You could definitely see your skills within the paintings you write. The sector hopes for more passionate writers like you who are not afraid to say how they believe. All the time go after your heart.
Thank you ever so for you article post.Really thank you! Awesome.
Pretty! This was an incredibly wonderful post. Thank you for supplying this info.
Hey! I simply would like to give a huge thumbs up for the great information you’ve gotten here on this post. I might be coming back to your blog for more soon.
Major thankies for the article. Really Cool.
I truly appreciate this post. I?аАТаЂаve been looking everywhere for this! Thank goodness I found it on Bing. You ave made my day! Thank you again
personally recommend to my friends. I am confident they will be benefited from this site.
There is obviously a lot to know about this. I assume you made various nice points in features also.
You ave made some good points there. I checked on the web for additional information about the issue and found most individuals will go along with your views on this website.
I抦 impressed, I must say. Really rarely do I encounter a weblog that抯 both educative and entertaining, and let me tell you, you will have hit the nail on the head. Your thought is outstanding; the difficulty is one thing that not sufficient people are talking intelligently about. I’m very joyful that I stumbled throughout this in my seek for something relating to this.
Very neat blog article.Thanks Again. Great.
The account aided me a acceptable deal. I had been
I truly appreciate this article post.Really looking forward to read more. Cool.
Thanks again for the article post.Really thank you! Fantastic.
pretty helpful material, overall I think this is worthy of a bookmark, thanks
Major thanks for the blog post.Much thanks again. Awesome.
I think this is a real great article.Thanks Again. Fantastic.
I think this is a real great article.Really thank you! Really Cool.
Spot on with this write-up, I seriously think this web site needs much more attention. I all probably be returning to see more, thanks for the advice!
I truly appreciate people like you! Take care!!
This page definitely has all the information I needed concerning this subject and didn at know who to ask.
Watch the strategies presented continue reading to discover and just listen how to carry out this amazing like you organize your company at the moment. educational
Outstanding post, I believe people should larn a lot from this weblog its very user friendly.
I truly appreciate this article post.Really looking forward to read more. Awesome.
Muchos Gracias for your post.Much thanks again.
is excellent but with pics and videos, this website could undeniably be one of
you have an amazing blog here! would you prefer to make some invite posts on my weblog?
That is a good tip particularly to those new to the blogosphere. Simple but very accurate information Thanks for sharing this one. A must read post!
very good submit, i actually love this website, carry on it
design your own hoodie
Thanks for another wonderful post. Where else could anybody get that type of information in such an ideal way of writing? I ave a presentation next week, and I am on the look for such information.
You are my inspiration , I own few blogs and very sporadically run out from to post .
Utterly indited written content , thankyou for information.
Link exchange is nothing else except it is only
Wow! This could be one particular of the most beneficial blogs We ave ever arrive across on this subject. Actually Great. I am also an expert in this topic therefore I can understand your hard work.
Some genuinely choice content on this site, bookmarked.
Major thankies for the blog article.Really looking forward to read more. Want more.
This tends to possibly be pretty beneficial for a few of the employment I intend to you should not only with my blog but
Really nice blog! posts are relevant and quality! I publish a blog too and I hope to get the same result one day Bye, Slevin!
Im grateful for the blog post.Really looking forward to read more. Great.
It’s best to participate in a contest for the most effective blogs on the web. I’ll advocate this site!
Strange but true. Your resource is expensive. At least it could be sold for good money on its auction!
Thanks for sharing, this is a fantastic blog.Thanks Again. Awesome.
I’аve learn a few just right stuff here. Certainly price bookmarking for revisiting. I surprise how so much effort you place to make this type of magnificent informative site.
Wow, amazing weblog format! How long have you ever been blogging for? you make running a blog glance easy. The full glance of your website is fantastic, as well as the content material!
This is a topic that is close to my heart Cheers! Where are your contact details though?
I really love your website.. Excellent colors & theme. Did you develop this web site yourself?
I truly appreciate this blog. Really Great.
I think this is a real great post.Really looking forward to read more. Will read on
Thank you ever so for you article.Much thanks again. Really Great.
Simply a smiling visitant here to share the love (:, btw outstanding design. He profits most who serves best. by Arthur F. Sheldon.
Your style is so unique compared to other people I have read stuff from. Thanks for posting when you ave got the opportunity, Guess I will just book mark this page.
online druggist’s no one-time you will coerce how to use. cialis on line Zjfmuq odhfzv cialis 5 mg tadalafil 10 mg
Some really good content on this site, appreciate it for contribution.
This is one awesome blog post.Really thank you! Fantastic.
Wow! This can be one particular of the most beneficial blogs We have ever arrive across on this subject. Actually Great. I am also a specialist in this topic so I can understand your effort.
Very interesting info !Perfect just what I was searching for! аЂаWashington is the only place where sound travels faster than light.аЂа by C. V. R. Thompson.
If you are free to watch humorous videos on the web then I suggest you to pay a visit this website, it consists of really thus funny not only videos but also extra information.
Say, you got a nice blog post.Really looking forward to read more. Want more.
I went over this web site and I believe you have a lot of good info, saved to fav (:.
Of course, what a magnificent site and educative posts, I surely will bookmark your site.Have an awsome day!
I truly appreciate this article post.Thanks Again. Really Great.
Really appreciate you sharing this post.Really thank you! Cool.
Simply a smiling visitant here to share the love (:, btw great pattern.
https://webartdesign.ch/
https://slowholidayblog.com/
https://louchebeme.com/
It as actually a nice and useful piece of information. I am satisfied that you shared this useful tidbit with us. Please keep us up to date like this. Thank you for sharing.
https://peterhicksmusic.com/
Tremendous details thanks a lot for publishing. The truth is in all of the content on this blog you will find something to understand.
Major thankies for the article post.Thanks Again. Keep writing.
You have brought up a very wonderful details , thankyou for the post.
https://italy-hotels-holidays.co.uk/
I truly appreciate this article post. Will read on
https://przystansoling.pl/
https://euroconspe.es/
https://musagokmen.com/
I as well as my guys were actually digesting the nice ideas from your web blog and immediately I got an awful suspicion I never thanked the web blog owner for those tips. All the men were definitely joyful to study all of them and already have in reality been taking pleasure in them. I appreciate you for truly being well considerate and then for making a choice on these kinds of incredible guides millions of individuals are really desirous to learn about. My very own honest regret for not expressing appreciation to you earlier.
I want to show my affection for your kind-heartedness in support of folks that really need assistance with this concern. Your special commitment to getting the solution all-around had been unbelievably insightful and has frequently made others much like me to get to their desired goals. Your amazing helpful suggestions signifies a whole lot to me and somewhat more to my fellow workers. Many thanks; from all of us.
I precisely desired to appreciate you yet again. I’m not certain the things that I might have implemented in the absence of these opinions documented by you regarding my subject matter. It was a intimidating condition in my opinion, however , viewing your specialized manner you managed the issue forced me to weep for joy. I am thankful for the help as well as expect you really know what a powerful job you are doing instructing others using your site. I’m certain you haven’t met all of us.
I wanted to create you one very small word to say thanks once again for all the splendid methods you have featured in this case. It’s quite strangely open-handed of people like you to grant publicly what many of us could have advertised as an e book to get some cash on their own, certainly considering that you could possibly have tried it if you considered necessary. Those creative ideas likewise served to be the good way to fully grasp other people have similar eagerness similar to my personal own to know the truth lots more related to this condition. I know there are lots of more fun moments ahead for folks who browse through your blog post.
I have to get across my gratitude for your generosity supporting those individuals that require help on this concern. Your special dedication to getting the solution up and down came to be quite advantageous and has all the time allowed workers much like me to realize their objectives. This warm and friendly information implies so much to me and still more to my peers. Best wishes; from everyone of us.
Thank you for every one of your efforts on this site. Ellie take interest in making time for investigation and it’s easy to understand why. Most people hear all of the powerful means you create very important guides by means of your website and as well as improve contribution from people on that article and my simple princess is actually studying a whole lot. Enjoy the remaining portion of the year. You’re the one performing a wonderful job.
I happen to be commenting to let you be aware of what a nice experience my princess encountered checking your webblog. She discovered several details, most notably what it’s like to possess a great coaching mood to let other individuals quite simply know certain multifaceted matters. You actually surpassed her expectations. I appreciate you for showing those warm and friendly, dependable, explanatory and also fun thoughts on that topic to Mary.
A lot of thanks for all your valuable work on this web site. My daughter really loves working on internet research and it’s really simple to grasp why. A lot of people notice all about the dynamic method you provide good tips via this web site and therefore attract contribution from other individuals on that situation and our favorite simple princess is undoubtedly studying so much. Enjoy the rest of the year. You have been conducting a terrific job.
I in addition to my pals ended up examining the great helpful hints located on your web page and so all of the sudden got an awful feeling I had not thanked you for those strategies. The people are already absolutely stimulated to learn all of them and have in effect definitely been enjoying these things. We appreciate you really being simply considerate and also for selecting these kinds of nice resources most people are really desperate to understand about. My sincere regret for not expressing appreciation to earlier.
https://event-tent.net/
to be using? I am having some small security problems with
Wow, marvelous blog format! How lengthy have you ever been blogging for? you made blogging look easy. The total glance of your site is wonderful, let alone the content material!
south korea jersey ??????30????????????????5??????????????? | ????????
Very good article.Thanks Again. Keep writing.
Wow! Thank you! I permanently needed to write on my blog something like that. Can I take a portion of your post to my blog?
This web site really has all the information and facts I wanted concerning this subject and didn at know who to ask.
I think this is a real great blog post. Great.
Normally I don at learn article on blogs, however I wish to say that this write-up very compelled me to check out and do it! Your writing taste has been amazed me. Thank you, quite nice article.
This is one awesome article.Thanks Again. Cool.
Thanks again for the article.Much thanks again. Will read on
site link on your page at suitable place and