Thursday, March 24, 2011

Advocate THIS...




To all the nurses, doctors, and more recently- secretaries, who have in some way contributed to the health issues my son has dealt with, I am waving a middle finger salute at you!
I have written a lot about Lucas' past surgeries and other health concerns; there are many scrapbook pages and journal pages that I simply cannot share on my blog because they are so very personal and represent very strong emotions that I am not sure will ever get any easier to deal with when it comes to my baby boy. This particular post may seem a little angry, or outright accusatory- after all, it is these very doctors and nurses that I am complaining about to whom I should be thankful for all that they have done for Lucas. So here is my disclaimer: YES I acknowledge the fact that ya'll saved Lucas' life as an infant and you have done great things for him. Now I am going to commence a major bitching session about you and healthcare in general and I am going to say a lot of things that many other parents have felt as they watched their infant or child go through surgeries or recieve devastating diagnosis after diagnosis with no real answers- if you don't want to hear it, please go back to spying on your facebook friends.



To the nurses and pediatrician who failed to identify Lucas' imperforate anus before he went home from the hospital (it was most definitely visible had you actually looked at his bottom), you suck! I will never, ever stop asking myself how life would have been different if this had been recognized before we took our baby home from the hospital. His colon wouldn't have ruptured, he wouldn't have had to be on life support for the first 3 weeks of his life- what if we hadn't taken him to the ER that third night at home when we simply thought he was "breathing funny"? My son suffered unimaginable pain and multiple surgeries because you were too busy to do your job right, and every single day I carry a doubt in my mind that perhaps it is all my fault, that somehow I should have been able to see that something was not right. Being that I had not (at that time) spent any time at all examining what a newborn's anus is supposed to look like, I guess I shouldn't feel that way. So, here's to the healthcare professionals responsible for my eternal "what if" questions that I can never answer, your own personal middle finger salute!
To the pediatric surgeon who saved Lucas, you did a miraculous surgery on a less than 5 pound infant, you are an amazing person! Follow through after that surgery? Not as great. You have so many patients that I had to recite his medical history almost every time we came to your office. At three years old my son could barely talk and was having potty training issues and your only suggestion to me was to come back when his speech improved and that he had "normal bowel function". Excuse me Dr. Amazing, but sh*tting your pants and not knowing how it happened is not normal bowel function. I would like to inform you that thanks to a simple facebook search I found a support group of parents with children who had the same health issues as Lucas- and guess what?! Almost all of those kids have been to gastroenterologists to treat their diminished bowel function, almost every single parent of a child who had a colostomy as an infant said that their child faced bowel incontinence issues. Dr. Amazing, you have a lot of time-outs, groundings, and poopy underwear to clean because these are the punishments we gave our son when we believed that his accidents were a behavioral problem because of what you told us. Here is your own personal middle finger salute!


To Dr. Amazing's secretary, I have really, really enjoyed this two month run-around with you, but honestly- I am out of breath. And patience. It would be sooooooo freakin' awesome to actually get Lucas an appointment with that gastroenterologist I found out he needed to see through facebook (thank you Dr. Amazing), but I can't seem to get an appointment because they need a copy of his medical records. That you were supposed to give me. Two months ago. I know it must suck that Dr. Amazing moved his practice to Texas and left you behind, but seriously get me the damn records. Of all the sh*t I have to advocate for, getting my sons medical records should not be one of them, enjoy your middle finger slaute ma'am!

Six years ago, a doctor told me that my son would most likely live a normal life and that after a few more surgeries life would go back to normal. For the most part it has, and I am very thankful for that. It still amazes me today that I still have to advocate for my son to get the medical care and attention he needs. Because of a simple medical error and healthcare professionals who were too busy to recognize a birth defect, I will always blame myself for each and every scar Lucas has. His scars have become my scars, they aren't visible on my body but rather on my heart. This post is for every parent who has ever felt let down by a nurse, doctor, or other healthcare professional. I'm not sure when it gets easier, but somehow a little bitch fest every now and then helps, thanks for listening!

5 comments:

mooremaline said...

I love this very well written and so right on the money I am battling with Autums medical records for her teeth after they found her bone tumor ( maybe I should say I found) and all her teeth went bad I was to blame not her medical problems doctors need to get real babies and children need them and there time not just that the doctors want there money I recently changed dentist cause they told me Autum would need yet another surgery to cap more teeth that were rotten I set up the appointment and decided to get a second look see by her new doc guess what nothing there we were just after are dental insurance and to put my daughter through yet another unneeded surgery so I will do the wave with you cause I surly understand love you all and you are in my prayers

Hello, I'm Vicki said...

this is so well written - and to be honest if people don't like what you're saying then tough!!! you have every right to be angry for your child - good on you is what i say. I hope that he continues on doing well, and it makes me sick that paperwork on children is not read before appointments, it's shocking really.

4 a penny, 4 a pound said...

What a powerful post. Having worked in and amongst the medical field for years, while not being a medical professional, I have a very jaded view of medical professionals. I am so sorry about the trials you went through with your son. It is clear that you are what my friends and I call a "lioness mom". I hope your son is doing well. I just found your blog page from a link on tipnut.com, and I'll definitely be back!

Lara said...

Moms are the most fierce and loving people. I'm so glad that your son is doing better. Never mess with a Momma Bear!

JenKercheff said...

Aww, I had no idea you went through this with your son. I'm so glad he is doing better! You have every right to feel this way and to say how you feel. Hell, I went off on them in person and if I thought someone wasn't taking care of my daughter right while she was in the NICU for 2 months, I DEMANDED different nurses/docs..etc. LOL. That being said, I also thanked over and over the great docs & nurses we had. Those precious little babies can't fight for themselves, so us momma bears have to do it for them!! :-)