![]() 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.
1 Comment
Susan Rhoades
10/14/2020 06:31:06 pm
You are doing a wonderful thing with your mommy blog❤️❤️❤️
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AuthorPresley T. Cruz Archives
January 2021
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