![]() Hey guys! As always thank you for coming over and reading the TubieStrong blog. I did want to dig into a pretty serious subject that isn't necessarily controversial but can be an extremely sensitive topic to talk about. As you can tell from the title, I want to talk about the decision on whether to put your child through a tracheostomy or not. With the "or not" meaning that your child will pass. As both Trent and I had to make that decision of - were we going to have Leo live or not. Being a fresh 22 year old, first time, Momma this question laid extremely heavy on me. Yet, I believe that any doctor asking you to play God and choose if your child lives or passes would be extremely traumatic for anyone at any age. I just couldn't fathom the fact that I was deciding whether a living human was going to live or not. Now, with Leo's case, you can read in his bio that he just never developed those innate functions, with one of those being breathing. He was completely dependent on a ventilator and after 4 months, they had told us we would need to make a decision whether to give him a trach or pull the tubes and have him pass. Now, Leo is my only child, I was in nursing school at the time anyways, and I have always wanted to be a mother. I knew that I had the common knowledge and determination to take care of my child with a trach. After speaking with Trent, he had concurred. Now, that doesn't mean that this decision is for everyone. At the hospitals we went to, they did an amazing job with knowing how fragile this decision was and that there are other families out there that have decided to choose the latter option. I don't have any other children besides Leo, but I couldn't have imagined training to pretty much be a full time nurse and staying at the hospital for over a year. I am not sure how trach training would go with juggling other children, a job, a relationship, and not going completely mad. Another example that I've heard or read in articles is that the prognosis for your child is not promising anyways, and it's much better in their minds to not put them through anymore than they would have to. Leo is an extremely complex kiddo. He has neuromuscular issues as well as not having the ability to breathe and eat on his own. Yet, at the end of the day, Leo is a sassy, little toddler that knows he's loved and is able to love back. It's subtle when he shows his happiness, but he definitely has an angry face and will tell you like it is when he's upset! Because I can still see his emotion, he is able to react to certain things I do, then that is what shows me quality of life. To me, sure he gets sick more often than the average child, and when he does get sick it is a more urgent scenario. Yet, I know once he gets better, we can sit in Mr. Bean Bag, put some Spongebob on, and he will be a happy toddler again. Which that brings me to my next point - It all depends on the parent's point of view on what quality of life actually means. Some parents think being on a ventilator is the point in which quality of life is not good. As for me, personally, I drew the line when doctors had considered putting a pacemaker in his heart. Both Trent and I felt as though that would be tiring on his little body to shock himself back to life only to do it again. (This was during a period in which Leo would have episodes in which he had his heart rate to 0 and then back to normal. They lasted only seconds, but he does have a long history of low heart rates, bradycardia, which brought the pacemaker conversation about) I do have a couple of lines that I don't want crossed in order for Leo to live. Those being - him taking in too much medication for pain, seizures, etc. to make him so sleepy that he isn't able to actually live and a pacemaker. I want Leo to be alert and awake and enjoy life with us. I, also personally don't want to put him through anymore surgeries like the pacemaker in order for him to just survive. I've seen him go through so much as a parent that I don't have the heart to keep pushing his body to do something that it obviously is no longer capable of doing. Unfortunately, there are also parents who are just not knowledgable enough to go through this type of training. It took around 3-4 months to be trach/g-tube trained, and it took me a couple more months after having him home to feel fully comfortable with Leo's needs. You can't be hesitant, and you need to remember plans A,B,C,D, etc. when things take a turn for the worst. Now Dayton Children's required there being 2 caregivers taught, and both my mom and Trent's mom are fully trained to watch Leo on their own. It's extremely helpful to have that extra bit of help, especially if Trent and I just need a little date night or something like that. Yet, some people aren't fortunate enough to have that kind of support. What I loved about my experience with Dayton Children's is that I could have said anything, and they would have fully respected either option if I were to choose a different one for Leo. So I guess what I'm trying to say is that there is no right answer. You're the parent, you're the only one that knows your situation, you're going by your standards of quality of life not anyone else's, and you know what you can handle/what your child can handle. If there is anyone that does read this and you are struggling with this decision just know that it's YOUR decision and no one else's. Again, this blog is to bring raw content and my personal experiences/thoughts to the table. Yet, since this was a more serious and fragile subject, I promise to even things out with a little more of a light-hearted subject next time. See you next time, all! P.S. The first picture above is one of the first pictures I took of Leo after his surgery. His face was all cleaned up and we saw it for the first time after almost 5 months! The below pictures are from being admitted after only being home for but 12 hours after discharging from the hospital for the first time. We called 911 in the middle of the night due to Leo having convulsing seizures, high temp, constant d-saturations, and extremely high heart rate. He had a nasty adenovirus and was admitted for another week after that.
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![]() Welcome back to the blog, everyone! I am so excited to dive deep into this topic that I have for you guys. As most of you all know, I have been weightlifting since I was 14. So almost 10 years now! Anyways, I want to give a basic breakdown of the past decade in my athletic career, where I am now competitively, and what my future plans are. Especially now that I'm going to nursing school, working full time, and a full time Momma! To make this somewhat brief, I started weightlifting competitively around age 15. I placed 7th at my first Youth Nationals in the 58k class. (I was literally like 53.3k, but my then coach didn't have me cut) I then competed as a 58k again at Junior Nationals when I was 17. I may have placed 6th? Then after 5 years, I decided to break out of my extremely toxic athlete/coach relationship (I will not be talking about that as the situation doesn't deserve any of my energy after years of healing myself) At that time, I was 19, and I went on to drop to that 53k weight class, find quality coaching, and compete at a higher level with a whole lotta fire in my belly. I placed at my first Junior Nationals when I was 20. Throughout those couple of years, I also competed at the local/state level often. I had hopes to making a USA team, but... at 21 I found out I was preggers with my Leo. ;) Now, 18 months later, I am in the 49k weight class (only because my wisdom teeth surgery fudged me up so bad that I couldn't eat solid food for almost 2 weeks and I dropped from 121 to around 113). Then I thought why not! Let's drop a few more lbs to compete lighter. My 4ft 11in frame fits the 49k lifter body type more anyways. I also want to mention that "Mom strength" is real. I've broken almost all of my pre-baby PR's while cutting to a lighter weight class. So with all of this being said, here is a low down on what goes on in a day now that I'm not only an athlete, but a nursing student, full time worker, and Momma. I wake up around 6:30AM, set up medical supplies for Leo's nurse, grab my breakfast (I use MyFitnessPal to track my meals/meal prep the night before, so I don't have to worry about making anything before work). After that it's 8 hours of sitting behind a desk, nothing too exciting. Around 4:30 when I come home I will immediately take my vitamins/pre-workout. They usually take an hour or so to kick in, so in between that time I hang with the Bubs and/or do some homework. Once I'm ready, I will train for the Catalyst Athletics' free WOD downstairs in my basement. Takes about an hour.... After that it's dinner time, snuggles with my Hubs and Bubs then I study/clean until around midnight so I can feed Bub at that time. Then I finally go to bed around midnight/1ish. In college I heard that you have 3 things - Sleep, Social, and Study. Yet, you can only choose 2 to do well in. It's somewhat true for what I am going through right now except it's - Work, School, Weightlifting, and Momma. There are days when I'm downstairs longer than anticipated, and I have such mom-guilt for leaving my Bubby in his room; so I lack in the Momma factor. Then there's times when I just sit and lay down with Leo and watch a movie, but then I lack as a nursing student because I know my ass needs to study. Then there's days when I don't go into work because I need to take Leo to the hospital - great Momma, not a reliable worker. There is absolutely no such thing as perfect balance. Let me tell ya that. You prioritize what you think is right in the current moment. I have to really think to myself sometimes and say, "well when was the last time I read Leo a book before bed time?" so I plan to cut my training short or make that day a rest day. Or if Finals/exams/research papers are due soon. I get quick Leo snuggles, maybe a quick sauna sesh and I study for the majority of my night. And just because Leo is disabled, it doesn't matter. I'd still have to make priorities between these things in my life even if he were average. Like MANY other mothers have to. So those picture perfect, insta moms - I praise you for handling it all with such grace and beauty because I sure as hell don't. The purpose of this blog/my social media isn't to fabricate my life into something that makes it seem as if I have it all. Because I don't. I lose my shit all the time, and life is just hard. But I do want to say that though it's hard taking on these roles as an athlete, momma, worker, and student. You can do it. It's all about prioritizing and choosing which role you want to excel in, in the current chapter your life is in. Well that's a wrap guys. Keep coming back to see what my future goals are for lifting AFTER nursing school! I mentioned a few accounts/people that I follow to better myself as an athlete on my Insta post. I truly rely on other people on Youtube, social media, etc. when it comes to my training since I do it 100% alone, so here are their names and why I follow them. Thanks all for the read, and until next time! - @catalystathletics: I follow their FREE daily wod. You just have to sign up on their website. They also offer many other weightlifting programs that may better suit your goals. @simplymander: I follow her because she taught me EVERYTHING about macros. I would literally cut 10lbs of weight a few days out from a meet because all I knew how to do is make myself sweat to lose weight. I didn't have much knowledge as far as nutrition, tracking food, and what/how much I should eat in order to cut weight HEALTHILY. I also aspire to have the kind of positive energy she has as well. @aimees2cents: Since I follow Catalyst, I have to follow Aimee, right?? But seriously, she provides such truth in her social media, and with having such a traumatic relationship with my first male coach I really look up to her/respect the content she provides her followers. @alyssaritchey: I've followed her journey for so long and as a fellow 49k'er, I feel like we have similar body types/mechanics. She is one of the few women who I really try to mimmick/learn from technique wise with lifting. Some people may see that more as comparing myself to her, and I wouldn't necessarily disagree with that. I just use comparison in a healthy way to better myself as an athlete. She also hosts the bittypodcast which provides great, free content for athletes. @coffeeovercardio: I mainly follow this group for the community. I've connected with such strong women in this group, and with the quarantine it's hard to stay connected to people like that. Everyone just empowers one another and that's the kind of positivity I'm trying to surround myself with. ![]() Good Monday afternoon, all! I wanted to share a little bit about my life as a college student. Many people are aware that I'm a nursing student, but they don't know that the end goal is to be my son's nurse. Let me explain. Before I started working for a home health company, I had no idea that there were clinicians such as nurses, PT's, OT's, and others that would actually go into a patient's home to work with them. I was only 18 at the time I started working for home health as a clerk, so now I'm more knowledgable as far as the behind the scenes goes for home health. There are many rules, regulations, and certain precautions (especially now with COVID) that clinicians must take when entering a patient's home. Before Leo, the goal was to be a PEDS nurse at a hospital. I wanted to work the floor and had NO desire to work for a home health agency. Yet, with Leo's circumstances, there is a way for me to be my son's nurse and work for a home health agency. So pretty much get paid for what I'm already doing now. To share a little bit of my current experiences with school, I am completing the last of my pre-requisites for an RN program this semester, but I have been on the LPN waiting list for almost a year now at Clark State Community College. Honestly it's whatever program will take me first is the one that I'm going to stick with. (IT'S SO TEMPTING TO JUST GET A $20,000 LOAN TO GO TO FORTIS OR HONDROS then finish next year, but you're girl doesn't have that kind of money) Ideally, I'd love to get into the LPN program this 2021 Spring semester, and after 2 semesters be hired to be Leo's nurse. Then continue my education while working as one of his nurses. Isn't it so cool that they give you that opportunity?? It blew my mind when they told me that I can finish school and get paid to be a stay at home mom. Yet, I don't mean to downplay the role as a caregiver to a child like Leo. Our current home health nurse (who is a complete angel) stated that Leo is their agency's most unstable case. My first thought was, meh... Really? Because I have been with him since birth, I know him, I know when he's getting sick, I know what triggers him, what will cause him to get sick, and what to do in emergency situations. So with the knowledge that I've acquired of taking care of him for 18 months, I can't wrap my mind around the fact that he is the "most unstable" case. Yet, it's true. One trip to the ER, I explained to the nurse that I had to give Leo emergency breaths all the way to the ER as his oxygen level plummeted. She just looked at me like I was crazy and even said that she would think I'd be more rattled. I never am because I have had quality training, and I know my son. But like I said, that's not a reason to underestimate the skill it takes to care for Leo. I will say. If it wasn't for Leo, I'm not sure I would be finishin nursing school. I am comfortable with my job, I love my hours, and it gives me OK pay for not having a degree. I am not grateful that my son has had to go through so much, but in a way I am happier with myself after being given this great motivation to finish school. I'd do anything for my child, and finishing nursing school is something I owe to both him and myself. If you are in a similar situation as me, I would highly recommend you consider working towards your LPN. Even if your child isn't in as extreme circumstances as Leo, I think it's a great option to be with your special needs kiddo if they require home health. Well that's a little bit about me and the student life. I only do it part time, but it's HARD balancing everything out. I'm not saying it's easy. Be ready to have even later nights and less time for yourself, but it will be worth it in the next year or two. I'll be sure to keep you all in the loop in the next couple months as I get further into the program! ![]() I don't mean to get too into it with this blog today, but I wanted to express my thoughts as a grieving mother to a person who has never gone through something like this. We weren't under the impression that Leo was going to need a trach, be ventilator dependent, and never gain those innate functions. He is now slowly learning to express his emotions, we are working on expressing his happiness (because he definitely doesn't need taught on showing us how angry he gets! Clearly from this ornery picture!) I also want to preface this by saying that I am incredibly thankful to have a baby as sweet as Leo to still love on. We have almost lost him a handful of times and each time he is sick we become fearful. We are absolutely filled with gratitude to still be able to take care of and raise him. Yet, we are grateful for what we've been through, and I want to share some of my personal thoughts on his trach journey. And why saying the term, "There is a reason for this", may be hurtful and the absolute last thing someone wants to hear. Yes, I know most people meant well when they would say that there is a reason for this, there is purpose in the pain, but would you be able to take me saying that to you when it's about your CHILD's pain? Do you think having 2 renown hospitals go through months of testing all to tell you nothing can be found for your child? No diagnosis, no cure, being in complete unknown? And lastly, do you think I want to hear you say that after having a doctor give me the choice to have my child live or not? (Another blog post I plan on diving deeper as deciding on a tracheostomy for your child is incredibly heavy, especially when it means life or death.) I couldn't stand when people would tell me that this was for a reason and good was going to come out of this. As I was going through this decision, and it wasn't the decision (I knew I was going to have Leo with me no matter what) it was seeing my child in pain after 2 surgeries. It was seeing him go through something that I made him go through to live, and hearing the doctors say that his prognosis isn't good with or without the trach. It was grieving for my child knowing that he wouldn't have a normal childhood and also grieving for both Trent and I knowing we aren't going to enjoy parenthood like everyone else. Nowadays, I am pretty level-headed with where Leo is, he seems to be progressing, we are happy, and love taking care of him at home. He seems like a normal toddler to us with him being so sassy! We just have a different routine than everyone else. He gets fed through the G-Tube, gets his meds, breathing treatments, and just has more doctors appointments than most kiddos. But other than that, when he is feeling healthy - he is just an adorable, little babe like everyone else! Yet, when you are going through the stickiness, it just plain sucks and I seriously questioned my faith, medicine, and everything that humans look to for guidance/comfort. As horrible as this sounds, I felt as if I couldn't lean on God because He allowed it to happen, and I had many conversations with God that I am not proud of. Yet, I'm not perfect, and He doesn't expect me to be. With struggling in my faith, I also struggled with believing in science. Like, seriously you guys? Leo CANNOT be the first baby to have gone through this. With all of these medical advances, there is absolutely nothing you can come up with? Nothing you can tell me to not even cure him - just tell me what's wrong. Nothing. So what is there to believe in after both seem to fail you? All of this hurt and disappointment then to have someone tell you it's for a reason. No. Sometimes it's not. I work Sundays, so I have to listen to my sermons online at my office. I keep going back to this one series. It's 3 parts that he had actually extended for years. The first is titled, "It Will Happen", then "It Had to Happen, and lastly "I'm Glad It Happened". I'm still working on the last one. Yet, it's more so about being glad of what came out of what you are going through. So I can understand that, but there isn't a day that goes by that I wouldn't trade this life for a normal life Leo could live. From the titles you can probably get the gist - bad things will happen, bad things had to happen in order for your life to go a certain way, and learning how to be grateful that said bad things happened due to how your life turned out and what came out of everything. He didn't speak about a reason for these bad things happening. Instead he spoke of the revelations that would come. Revelation over reason, and I've tried my hardest to have faith in what has come out of everything rather than be pissed all the time about why Leo's life is the way it is. He has touched so many lives, I am now FINALLY finishing nursing school because of him, and I have learned true gratitude. So if you happen to know someone going through something somewhat similar. Just know that this is bigger than what you realize. Even if you don't have words to explain how you feel or what you want to say - that is saying something. And it's a whole helluva lot better than saying that things happen for a reason. I don't need a reason. I need a shoulder to cry on, a friend to lean on, and someone I can talk to without trying to tie a reason to everything happening. |
AuthorPresley T. Cruz Archives
January 2021
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