Wednesday, June 5, 2013

Noah was featured in an article

The MAGIC foundation asked me to write an article about Noah for their summer newsletter.  You have to subscribe to be able to read the entire newsletter (all proceeds benefit the foundation and their wonderful cause).  However, here is Noah's specific portion for all of my friends and family to enjoy  :)

***(warning: no matter how many times I proof read the article before I sent it in, I did find a few grammar errors in the final article.  Hate when that happens!)

Monday, June 3, 2013


Dear whomever runs all things medical in this universe,

Enough is enough!  Yep...I said it....we are done!  I would like to go into details about all the hospital chairs we have sat in and all the aquatic cartoon animal wall murals we have stared at with either exhausted, teary, or blank eyes but honestly...I lost count.  I guess I could flip through the three inch stack of medical history forms from these past two months but just the fact that I actually have this stack makes me want to "Lash Out Irrationally"~Tim Allen's The Santa Claus

Noah just can't catch a break (as I knock on wood praying he actually doesn't break something now).  Seriously though, it started with his inability to stay hydrated/nourished which sent us on a few trips to the ER for fluids.  Then he got a cold/flu bug.  Then he broke three molars at once which again caused total refusal to eat/drink and back to the ER we were sent directly from his peds office. Then his adenoid/frenulumectomy surgery and then another ER visit for fluids and then an Ng-tube placement and then a G-tube surgery and now of all things a bowel obstruction, yeast infection around his stoma site, and some type of other infection they couldn't find in all FIVE trips down to radiology and ultrasound departments. 

After every visit the nurses always hand us his plastic name tag that sits inside a blue plastic wrist strap.  "Would you like to keep this for his scrapbook?"  they always ask.  "Um, no thank you" is always our reply as we hastily toss it directly into the trash container.  When he was born we kept this little tag as a cute reminder of our quick trip in the hospital to welcome him into this world.  Now the only thing these name tags remind us of are pain and suffering our son is enduring and how its kind of like he has a credit card directly attached to his ankle.  Each time they administer any form of medication or procedure they have to scan the bar code on his tag to "charge" his file to make sure we pay for every little cotton ball and syringe full of Tylenol.  It honestly does get a bit annoying.

I figured out this time though when Noah kept kicking his tag off that they could actually keep this hard sharp edged ankle torture device off my son and instead put a sticker on his thigh and cover it with a piece of bandage tape (Tegaderm).  SOOOO much better let me tell ya.  We of course still have to keep the plastic one close by so they didn't miss each and every opportunity of scanning its bar code but at least Noah was a bit more comfortable keeping it off of him.

The first overnighter I had packed two bags full of extra clothes, toys, comfort items (for both Noah and myself), light snacks, and 'survival pieces' I have learned to never go without when sleeping in a hospital.  When I got home after that first visit I removed all the perishables but never actually had a chance to unpack all the items because we were soon heading back to the hospital for yet another all night stay.  For TWO months now I have not been able to unpack these bags.  I started to wonder if maybe that was the reason we keep getting sent back.  As if a cruel joke was being played on us and we were setting ourselves up for the inevitable.  This last Saturday evening and literally the second my husband and I stepped foot back into our home after our latest hospital stay I blurted out in one sentence "illgowashNoahand gethimreadyforbedyouworkongettingeverylastitemoutofthosebagsbeforeyoudoanythingelse."  Lets hope this does the trick and we will not be seeing anymore hospital walls for the rest of the year...or even better....our lives :) A girl can dream :)

We have learned a great deal about hospital stays that I would like to share for those who ever find themselves having to stay multiple days in the hospital.

1. Buddy up to each and every single nurse/staff member and be EXTRA nice.  You can call it brown nosing but I like to think of it as insurance that you and your child will get treated as somewhat VIP's.
2. FOR YOU: Pack a hoodie, eye mask, ONE earplug, your own pillow (an extra one you dont care about washing all the time), slip on shoes, socks, comfortable pants, an extra comfortable shirt, electrical device chargers, toothbrush, face wipes, chapstick, lotion, and light snacks.  For you woman...don't forget to throw in some spare "monthly" items as well cause more than once the stress of it all has put me in an unlucky situation.  It would be wise to pack some pain meds and stomach meds for you as well if you suffer from a weak stomach or tend to get headaches from constant beeping sounds, overhead lighting, or lack of sleep (cause you won't be getting much). 
3.FOR YOUR CHILD: favorite toys and blankets that can be washed, favorite movie or music, favorite binkie or chew toy (many of them) two comfortable outfits that can be easily put on and off. Pack some food just in case and if they are tube fed pack all the emergency kit stuff as well as the special type of formula they are on (cause chances are the hospital will not carry it).  Dont waste your time packing diapers or wipes unless your child is sensitive to other wipes then make sure to pack like two whole packages of them with you cause you will go through these for everything.  You will not be allowed to use your own medication so save time and do not pack these.  However, it is wise to type up a list of medications they are on and have that with you at all times including doses and intervals.  Include all the vitamins and otc medications as well. 
4.Hospital food is not good on the stomach no matter how "good" others might say a particular hospital cafeteria might be.  The stress, lack of sleep, and greese/carb overload that is in every single item will eventually catch up to you.  If someone calls and asks if they can bring you anything always say "Yes, if you don't mind I would love some food."  Choose healthy options even if you dont normally eat all that healthy.  I promise it will make the stay much more comfortable.  Also, drink tons of water (which the staff will always be able to get you). 
5. Just because you are staying in a hospital does not mean that you can turn your "parenting skills" off.  Nurses are assigned to your child but it will be up to you to make sure your child is comfortable, not stuck alone, entertained, clean and dry, and safe.  Depending on the cause for the stay the nursing staff will normally come in every few hours to check vitals or administer medication but otherwise it will be up to you to track them down for everything else.
6. If you need something always ask and do not be afraid to ask.  Warm heated blankets for yourself or child, extra pillows, water, some places even provide juice, soda, slushies, ice cream, babyfood, crackers, cookies, and granola bars.  Always ask.
7. White Noise is my saving grace.  Of all the hospitals I have stayed at with Noah each and every one of them has a tv set up in the room.  There is normally a "white noise" channel that has a black screen but a constant rhythmic tone flowing through it.  At first it might sound a bit annoying but for an all night stay this sound will drown out other patients, night staff chatter, hallway vacuums,  pump machine hums, and outside noise (if you are lucky enough to get a room with a window).  I don't think I could ever sleep if it weren't for this white noise channel.
8. You can turn off lights at any time.  If a light is bothering you or your child turn it off.  Don't be afraid to.  If the staff needs a light they will turn it on when they have to.  This also means the computer screen that is in the room. If the light on the computer is bothering you just push the button to turn it off.  I promise the staff will not mind (or at least they never have once i finally go the guts to shut everything off).
9.  If you are in a room with a window but no curtain ask for one or ask for them to pin up a blanket to block out the street light.  If your room has a track around the door but no privacy curtain hung up then ask them to call maintenance to put one up.  The track is there for a reason and you should be able to get one with no problem.
10. Shift Changes:  This is the hardest part of staying in a hospital in my opinion.  Most staff works 12 hours shifts that I have come across.  Nurses usually work from 7 to 7 and the tech staff usually works from 6-6 (just examples).  If you get administered at the beginning of the shift you can feel like they become your friends by the end of it...and then they vanish!  Just like that.  On the rare occasion you will get a goodbye but most of the time you will just get a new "hello" from the new shift and feel like you have to start the whole process over. It really does feel this way.  Start a new "relationship."  Make sure they know your child's specific needs and routine. ALWAYS ask a ton of question with each staff change so that you both are on the same page.  You can have an amazing nurse and then get switched to a new nurse that got in a fight with their spouse the night before and comes in all groggy and edgy.  Nurses are people too and just like you or I they have their good and bad days too.  If you are planning on getting discharged and it is coming to the end of the shift then plan on staying for at least another few hours because you will more than likely be parked until the new staff gets up to date on your plan of action and they finish their initial rounds.  I have found that when you are woken up at 6-7am with the new shift change a doctor usually comes by and I always ask them if/when we will be discharged and then with each and every staff member that comes in after that I remind them of this time to keep them on track so that we dont end up getting discharged at midnight again (this has happened). 

***bonus:  If your child had any lab draws the nursing staff should be able to pull these up if you have not been able to speak to a doctor in over 24 hours.  If you need to speak to a doctor then just ask...but be prepared cause you will receive a bill in the mail for every single doctor who steps food through your door (even if only to introduce themselves because they are covering another doctor while they went to lunch). Yep...we got a bill once for a $200 "hello".  Nothing you can do about it either.

Needless to say we are thoroughly finished and exhausted with hospital stays and visits.  If you are a praying person then please pray that our Noah will have a better rest of the year and that the only bag he will be packing is one to go on a much needed vacation :)

Ankle torture device...heading in for adenoid surgery.  Had we known it would lead us to another month of hell we would have cancelled it for sure.

After his G tube got surgically placed...obviously he was not a fan and wanted to express his discomfort. 

Sometimes you have those moments when cuddly friends make everything better.