Wednesday, November 19, 2014

A Mother's Worst Nightmare

*Trigger warning*  This post is about a sick baby.  Baby is still alive but hospitalized.  Please use discretion when choosing to read**


     Last week, a good friend of my husband's and mine woke to find that her six month old baby boy, Jeremy Jr., had gone into cardiac arrest.  They called 911 and baby Jeremy's daddy, Jeremy (hereinafter Jer) performed CPR.  Jeremy Jr. was recuessitated but lost a lot of oxygen so he has sustained "extensive brain damage" per the MRI he received.

     Initially, he needed to be on a ventilator as he was unable to breathe on his own but, now they have removed the tube and Jeremy Jr. is breathing unassisted.  He still has a lot of wires and such for various reasons but breathing on his own is a huge accomplishment.

     Mom, Alison, has had a few chances to hold him since the removed the vent and last night the hospital called to tell her that they moved baby Jeremy to a different floor! He is out of the PICU!


     I have started a GoFundMe (there's a widget in the dooblydo---->) to raise funds for Alison and Jer to help them cover the things that insurance does not which is very difficult to do when they are dealing with lost wages.  The last thing they need to worry about is money.  Please consider donating, or at least sharing the link: www.gofundme.com/jeremyjr

     Please hug your children tight and do not take any of your time with them for granted.
     


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Thursday, October 10, 2013

Updates Are Coming

Lots of changes are being made to update buttons, tickers, and such so that as I get back into the swing of blogging we're not surrounded by outdated things.  Check out the polls on in the sidebar to add your input!


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Sunday, October 6, 2013

Five Years

Warning* this is a heart wrenching story about a lost love one.

Today marks the 5th year without our dear friend Raf.  It still feels like I lost a limb.

I can still picture Ed's STUPID expression when he asked me why I was home from work- even though I had called to tell him what had happened.  The pure disbelief on his face and the heartache I felt when I had to tell him again.  On the phone I said, "Raf had a seizure in his sleep" and Ed, the optimist, interpreted that as "Raf is in the hospital and everything will be fine".  At home, I forced myself to say it- "Raf died." and watched as Ed fell apart like I had at work.  As those words passed through my lips, the raw emotion was overwhelming.  I had been avoiding those cold words all day but it's what Ed needed to hear to make it real for him.  All of it felt so surreal that I hoped I could just wake up and everything would be normal again.

I can still see him spinning around in his chair, facing me, while reciting his opening call script with that big goofy grin on his face.  I will never forget staring at his empty chair and hoping it was all a dream.  I can still hear his voice- especially him singing along to sublime in the van.  Pushing the van, that same night, was pretty hilarious.  Stupid van.  Stupid alternator- dying in the middle of a downpour like that.  It was awful but now I'm glad that I had those few extra hours with him that I would not have otherwise had had my van not decided to die at his house.

I can still hear him say, "Tell Samwise I said what's up" as we left work.  He always said that Ed reminded him of a hobbit and that was his way of saying, "tell Ed I said hi".  I can still see his face and that grin at the bar- OH MY GOD that grin.  He was so happy as his head bobbed back and forth to the music.  I'm glad that I have such an awesome last memory of him.

I wish I could forget having to explain to Adam why Raf wasn't coming to visit anymore.  Watching a 6 year break down into tears like that ripped me apart.  Logan doesn't even remember him which is bittersweet. He doesn't get to have the fond memories we do but he also doesn't hurt whenever he thinks about him.

He loved my kids and my heart hurts when I think about how he never got to meet Xander or Dean.  He'd think Xander was awesome, I know it.

A friendship that started 10+ years ago in a gaming store ended too soon.  We lost touch for awhile but when he turned up in my training class at work, Ed, Raf and I became very close.  He was family to us and we only had that closeness for a few short months but I cherish those moments that we did have.

R.I.P. Rafael Santizo October 6th 2008  We miss you homie and we will never forget you.

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Tuesday, October 1, 2013

Why is Informed Consent Important?

Why don't you just listen to your doctor, s/he did go to school for many years and they know what they're talking about!  If it wasn't safe, the doctor wouldn't have prescribed/done/said it.  Why don't you just leave the researching to the doctor?

Many of us have heard these questions over and over again and it can be frustrating when you're met with these questions after sharing a story of "misinformed" consent or forced medical care.

Informed consent is important for a number of reasons.  We should have all of the necessary information regarding risks, benefits, alternatives, etc before consenting to any procedure or treatment.  I talk about this a lot with regards to pregnancy and childbirth but this transcends beyond the maternal healthcare field as well.

Doctors, nurses, PA's, etc all do go to school for many years and they often do know what they're talking about but they are human beings and human beings make mistakes.  Sometimes doctors do not go to continuing education courses to learn updated information, sometimes providers have heard anecdotal stories from peers or have experiences outside of the norm and develop a bias that causes them to disagree with current evidence-based practices, sometimes they just aren't familiar with something and give inaccurate information based on guesses and assumptions, and sadly, sometimes they're just following the money.

Nobody is perfect- including those who work in health care.  They may talk big sometimes but don't let their confidence fool you, sometimes they are just dead wrong.

Dr. Google can be a very bad thing for some people.  It can often be fuel for people with Munchhausen's as well.  I agree that your typical hypochondriac probably should not Google their symptoms but for some of us, it has been a lifesaving resource.  I diagnosed my sons medical conditions before the doctors did- without me advocating for him, he would not be receiving the treatment he is today.
Photo courtesy of The Soft Landing

Of course, this doesn't mean you should never trust a doctor but a good, trustworthy doctor will always give you the information you need to make an informed decision.  If you ask a doctor for statistics, drug risks, or evidence to back up a claim and they "can't" or won't give the information to you, you cannot trust that doctor; fire them.

Last week, I visited a local emergency department for the worst migraine I've ever had.  I went to the E.R. with hopes that they would actually look into why I'm having these debilitating headaches- instead, they just offered treatment and then sent me home.

I was happy to feel better, however; before obtaining the treatment, I notified the provider that I was breastfeeding my 7 month old and that all medications would need to be safe- especially since my little one does not regularly take bottles and I was unsure as to whether or not he would take one for me.  Plus, I only had 8 oz of expressed breast milk and preferred not to introduce formula when I didn't have to.

She said she would let "them" know and disappeared.  A nurse came in to start an IV and some meds to treat the migraine.  While she was prepping the IV, long before she even added the drugs to the bag, I confirmed that they were not contraindicated for breastfeeding.  She said they were fine and explained what each was for: Benedryl to help calm and relax me, Toradol for the pain, and Compazine (she used the generic term) for the headache.  She explained that Compazine is actually an antiemetic but has an added benefit of helping with headaches- much like my son's hydroxyzine for his allergies also works to reduce his nausea even though it's not the actual purpose of the drug.

As I was in no condition to verify these things on my own, I was relying heavily on the staff to provide me with accurate information.  I nodded and let her go about relieving my pain as my mom sat along side me with my infant and toddler.  She had come with me so that I could breastfeed the baby as needed.

Shortly after the nurse left, a PA entered and introduced herself and let me know that I would be unable to breastfeed FOR 24 HOURS.

Confused, I told her that I'm fairly certain that I received Toradol after my c-section and I was definitely breastfeeding then.  Surely the nurses in the Mom & Baby unit weren't giving me something unsafe?!?!  She said that both the Toradol and the Compazine were not safe while breastfeeding.  Panicked, I insisted that I had been previously told that these drugs were fine.  She rushed off to double check while my mom packed up to bring the boys home and wait for my older children to get off the school bus.

I spent the next, actually, I have no idea how long it was but it felt like an eternity, alone in that hospital room experiencing the scariest drowsiness/grogginess ever.  I was in a state of sleepiness where, for whatever reason, I was fighting the sleep because every time I drifted off, I woke up terrified.  I've had Benedryl and Toradol before so I suspect it was from the Compazine which has a laundry list of scary side effects that I was never counseled about.

When the PA returned, her new claim was that I would not be able to breastfeed and would need to "pump and dump" for 48 HOURS!  This was even worse!  She did say that the Toradol was fine but that it was the Compazine they were worried about.

I told her, that I wish I had known this before they gave it to me.  I would have refused treatment.

She went on to say that it was "category C" (a pregnancy categorization) and that it the risks were unknown.  I told her that if I would attempt to give him a bottle but I may have no choice other than to breastfeed him and I made it quite clear that I was not happy about this situation.

I came home and called the Infant Risk Center because they offer evidence-based information regarding breastfeeding and medication as per Dr. Hale's findings.

The person I spoke with said it is classified as an L3 (the proper lactation category) because the risks are unknown.  She then went on to explain that Dr. Hale says it peaks in the breast milk between 4-6 hours and that based on it's half life, half of it would be eliminated from the breast milk within 8-10 hours.  She also said that the quantity that passes into breast milk with one dose of Compazine is expected to be very low and that if I were to nurse my son, she recommended that I wait at least 8-10 hours.

I was able to get my son to take a bottle for the next 10 hours (thanks to some donated milk from a close friend) but at 11:58 p.m., he was unwilling to take another bottle so I had very little choice and was left having to nurse him despite the lack of safety studies on this drug.  I had to nurse him again at 5:00 the next morning and throughout the rest of the 48 hours as he kept pushing the bottle away, making it clear that he wanted nothing to do with it.

I find myself upset with the fact that I was misled and put in a position where I had to nurse my son and hope for the best that the medication would not harm him.  I do not believe anything malicious took place at the hospital but it is imperative that hospital staff (and all healthcare providers) be properly educated when it comes to breastfeeding and that mother's be presented with all of the information so that they have the option to refuse care if it conflicts with their child's ability to eat.

The nurse should not have been so quick to say it was safe if she wasn't sure.  There is no shame in double checking if she didn't know the answer.  Since she was very quick to answer, I assumed that the first provider had done her job in making sure the meds would be safe. What was more aggravating though was that the first provider came in with the PA and when I objected to having to wait to nurse, she said, "no, it will definitely affect the baby" in a tone that felt almost accusatory- as if I were crazy for expecting to be able to feed my son even though she was the very first person I notified that I was breastfeeding.  She knew and it appeared as if she had done nothing with that information.  On some level, I do blame her since I told her that it was likely that my son wouldn't take a bottle and the PA seemed surprised at this so, at the very least, the PA was not aware of the importance of a safe medication.  She did, however; know that I was a breastfeeding mom before she walked into my room because it's in my chart so I will never understand why that specific drug was ordered in the first place.  A booby trap perhaps.

I did not give informed consent in the E.R.  I couldn't have as I was given inaccurate information and I can only hope that that it wasn't done on purpose for my benefit because I would have gladly continued to suffer through the migraine if it meant I could safely feed my little guy.

This is the very reason why informed consent is important and why we should be in control of our healthcare choices.




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Wednesday, September 25, 2013

I've said it before...

...and I'll say it again!

I know I've had several posts about how I have been absent and hope to get back into the swing of blogging.  I always mean it but life as a mom of 4 boys has been very busy (who knew?).

I think I have a plan and it may involve scheduling posts so that I can just write whenever I have time and not worry about having them post all at the same time or in the middle of the night.

There is at least one blog post in the works right now.  I was about to post a very long winded story on the Improving Birth Wilkes-barre (NEPA) Facebook page about an experience I just had in the E.R. but it just felt like more of a blog post so I've decided to share it here and then link to it on the FB page.

That will be coming along shortly, as soon as I'm finished proofreading it a bazillion times.

Also, I suppose I need a new ticker for my newest addition!

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Friday, May 3, 2013

Randomness.



I'm pretty impressed as it appears one of my children have figured out how to post a blog from my phone. ;) So, I hope anybody who saw this enjoyed the startled picture of my youngest son and a random car pic that one of my other boys apparently liked. ;)

Friday, January 18, 2013

Win a Bitty Bee Changed Newborn Diaper!!

*Edit* I apologize to everyone about this post.  There used to be text here, I'm not entirely sure what happened but I didn't realize that there was now an empty post just sitting here and taking up space.

Incidentally, this giveaway is over now and I was lucky enough to win the diaper. :)

Sorry again for the weird post.


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Friday, February 10, 2012

Cakes by Jodi (Allergy-friendly!)

     So, I was sitting here earlier, wondering why in the world I haven't posted about Cakes by Jodi.  Jodi offers wonderful fondant cake/cupcake/cookie toppers along with cakes, cookies and pastries.
     How did I find Jodi?  It's actually a pretty funny story.  When Logan was diagnosed with food allergies a month before his last birthday, I entered a state of full blown panic when he announced that he wanted a Barney cake.  How could I tell this kid who is accustomed to getting whatever he wants on his birthday cakes that he could not have a Barney cake?!?!? His food allergies aren't his fault and I didn't think he'd understand that I wasn't being mean.  I was determined to get him his Barney cake- even if I had to make it myself.
    As his birthday approached, I searched for a bakery that would do an egg free cake.  None of our grocery stores (or Walmart) will because their cakes are premade and shipped in frozen.  I found ONE place that would do it and that's our local natural store- The House of Nutrition.  I contacted the baker and she was going to make us a cake with Barney colored sugars.
    My next task was to find something to decorate the cake with- and I'm not a baker or a cake decorator so it needed to be easy.  I couldn't find any Barney cake decorations or small Barney toys.  I checked Target, Toys R Us, Party City, and a handful of grocery stores and came up empty handed.
    One day when we were driving home empty handed, I turned to DH and asked, "why haven't I checked Etsy? I'm SURE I can find a cake topper there!".  When we got home, I set out to do exactly that.  I found several but this one stood out the most:
http://www.etsy.com/listing/79360894/kai-lan-edible-fondant-cake-topper
     I contacted the shop owner to ask if she could do a Barney topper.  At some point, I happened to look at her shop location and my jaw just dropped.  She's local to me!  My next question was, "Are you really in Dallas? Could I possibly pick it up instead of having it shipped?  I just looked at your Facebook and see that you do cakes too-do you do egg free cakes by chance?".  Well it turns out that she too has a kid with food allergies so she's all too familiar with egg free cakes!  Jodi saved the day at that point and created a Barney cake for Logan that he was very excited over.
     To give you an idea of how talented she is, I provided a picture and asked for her to alter it a bit.  I wanted Barney and BJ's hands to be closed and holding some balloons. This was the original image:
and here is her end result:

     Her work is truly beautiful and the cake was delicious!  Since August, I've tried some different cake recipes and found one that I like so I'll be making Xander's cake but I turned to Jodi again for our topper because I still haven't tried to work with fondant on my own (though I hope to soon).  I gave her the birthday invitation that I created for her to use as inspiration and she did beautiful work again.
     The invitation:
     The cake topper:

     I couldn't be happier with her work and I love that she's so close by so I don't have to worry about shipping costs.  We hope to have her make Adam's cake topper too.  She has made this journey through a life of food allergies easier.

     Please go check out her Etsy and her Facebook.





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Tuesday, February 7, 2012

Win a Beco

I haven't hosted any giveaways myself lately but for all of my fellow babywearing parents, I wanted to share this Beco Giveaway that I found!  There's 18 days left so there's still plenty of time to enter.  Good luck!


(The button will be in my sidebar too incase this post gets lost.)

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Wednesday, December 28, 2011

Don't sit by me!

I'm often amazed at the lengths we go to to avoid other people.  Dh needed some bloodwork done today so we are sitting in the hospital lab.  When we first walked in, I noticed that there were quite a few people here....all with a chair or 2 between them.

This is something we see often but why?  Why is it so awful to sit next to a stranger? I can almost see it in a hospital setting because people may be sick but I've witnessed this very thing in a variety of places so I'm going to assume that illness was not a deciding factor here.

Think about how much space is being lost by sitting like this.  When more people enter the room, either they have to sit next to you anyway or they'll share your discomfort and have nowhere to sit.  We, as a people, need to learn to coexist better with our neighbors.  It's not going to kill you (in most cases) to sit next to someone so maybe we should try to break this trend.  Take the chair right next to someone instead of sitting 2 chairs away (unless you know your sick, then avoiding the spread of illness is preferable).  I'll try, will you?

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