Thursday, October 3, 2013


This is a video created by Neuroworx for a gala they held in September 2013.  I was fortunate to be able to volunteer for this wonderful event.  Furthermore, my son Noah who is a patient at Neuroworx, was also highlighted in this video.  He happens to be the adorable baby in the pool.

We started with Neuroworx a couple months ago.  For now Noah is only big enough to do pool therapy and some floor therapy.  We have already seen some great progress though.  A few weeks ago Noah started to put weight through his hips, knees, and ankles and actually try to stand.  His ataxic (shaky movements) have also seemed to calm down dramatically as well. 

We have been very fortunate to be a part of this wonderful clinic and have such amazing therapists working with our son.  The founders Jan Black-MS, PT and Dr. Dale Hull, MD are amazing and really make you feel right at home.  The stories and successes they share give mothers and fathers like us hope that our son will be able to sit on his own one day and down the road walk.

I cannot speak highly enough of this organization and all the help they provide for those struggling with any form of mobility paralysis or limitation. 

There are many other youtube videos about neuroworx as well as a facebook group and webpage.  You should really check them out if you are looking for a brain injury or paralysis physical therapy clinic.

Dr. Dale Hull himself was once paralyzed from the neck down from an accident and today is walking around the clinic cheering others on.  

Mystery Diagnosis

If you have ever found yourself wide awake into the wee hours of the night you might have come across a television show called Mystery Diagnosis.  One of those shows that seems to suck me in within 30 seconds of the intro playing.  Each and every time my eyes glue to the screen as I question if the child or adult with said diagnosis will be the answer to my sons "mystery diagnosis."  It never is but I keep hoping. 

About 4 or 5 months ago Noah started to exhibit a cyclical sickness or "attack" as his doctors like to describe it.  It would happen every 2-3 weeks and we can pretty much mark on our calendars now when to expect the next "attack."  At first all his docs chalked it up to constipation.  They all told me that because Noah was so backed up with stool that his body would spiral into some form of "fit" and his white blood cell count would elevate causing fevers, shakes, vomiting, and pain.  We aren't just talking about a simple 101.1 degree fever either.  104 or 105.2 is more the norm for him.  HOT POOP!!!!  (Should have named this post that!).  Well, no matter how much hot poop he had we always seemed to get him cleaned out with either a suppository, enema, or even an all night hospital GI clean out with this stuff called GoLightly.  None of which are great experiences but most do end up with some type of hysterical story to tell later (after we all shower and disinfected).  We have become pros at the poop patrol, making sure Noah has the perfect number of bowel movements a week all of which have to be the perfect consistency, color, and frequency.  We might pass the entry exam into a gastrointestinal school these days.  Noah was put on 1.5 cap fulls of Miralax a day (brings water into the intestine to get things running smooth) and a pretty intensive dose of medication called Erythromyacin which was actually an antibiotic until they found out that it makes the muscles in the intestines work harder and push the stuff down to its escape hatch better. 

It wasn't until he had another attack that happened to fall on the exact day Noah had his quarterly appointment with his developmental pediatrician where people really started to take us seriously.  I was sitting in her office with a screaming Noah who was burning up and miserable.  She brought in with her another doctor and as they were chatting away about doing another clean out Noah made damn well sure they knew he did NOT need it.  Within literally seconds we all hear a little grunt and even though he was fully clothed he was able to disperse his entire GI tract full of stuff all over the floor, my legs, the wall, the doctors shoes, and even sprayed up onto the table and stroller. 

I was mortified.  The smell was horrendous.  The looks on all our faces were priceless.  I wanted to laugh and cry and run away all at the same time. 

They still decided to do yet another stomach xray to see if they saw anything left in there.  They didn't!  They then proceeded to take me from one hospital wing to another as they did ultra sounds, blood work, and after a three hour long wait a call to inform me that they wanted to admit Noah for an all night observation to figure this all out. 

I was tired but what was I to do.  My husband was out of town.  My pants smelled like a sewage plant. My son was burning up again.  The stroller still had the aftermath of a futile attempt to clean it up using paper towels and hand soap.  I wanted an answer, a direction, something.  So I gave in and admitted Noah for an all nighter.  Thankfully my wonderful family and friends came to my rescue with clean clothes, food, and great company. 

Doctor after doctor came to our room.  All with different schedules and agendas.  All with different ideas and tests they wanted to run.  All with great enthusiasm and drive.  NONE of which actually came through with anything that they said they were going to do or test they were going to run.  No answers, no further tests, nothing.  All big talk until their shift was over and the buck got passed onto the next attending or resident doctor who had their own idea of what Noah needed.  I was one PISSED off mother the next day. 

Husband landed at the airport around midnight and came bright and early to re-leave me from my post for a couple hours until he had to go back to work again.  The whole day we kept waiting for someone to give us some for of plan.  Nobody had one.  I took matters into my own hands and went knocking on his developmental pediatricians door (not literally a door but her assistants desk worked just fine).  They actually paged her and I finally got someone to listen to me.  Nothing further was ever planned and every plan that was made was disregarded by the next doctor on shift.  Pointless and waste of time.  I demanded to be discharged asap....and we were.  Persistence is the key when it comes to staying in the hospital.  You want to be nice and friendly but you also want them to take you serious and not walk all over you or disregard you either. 

Fast forward five weeks to today.......

After many tests a CT scan was ordered to evaluate his stoma around his gtube site.  CT scan was clear of any findings.  His blood work was sent in and a immunoglobulin test was done.   We received a heart breaking call that day from his doctor informing us that his "preliminary" test results show that Noah "probably" has this totally rare and horrible disease that would cause him pain for the rest of his life and you and your husband are the carriers and would have a 25% chance of giving this to your future kids.  WE WERE DEVASTATED!!!!!! 

Three days later after finally getting a grip on things I get another call from his doctor letting us know they were "stumped."  It was NOT this horrible disease after all.  I was stunned and shaking and so thankful I could have probably passed out had I not been meeting a friend for lunch at the very moment my phone rang with the news. 

I learned a valuable lesson that day.  NEVER EVER EVER listen to what a doctor has to say if they use the words "preliminary or probably."  Just turn your hearing off and go on to have a nice day until you get the final results back.  It was a weekend from hell and one I wouldn't wish on anyone ever, no matter how much I might dislike them. 

Noah has undergone weekly blood draws, his attacks have come just as we planned every 2-3 weeks, his doctors have tried to reach out and get help from infectious disease doctors as well as rheumatology doctors.  More blood tests were ordered, more time we have to wait, still no answers.  Halloween morning is our first appointment to meet Reumatology.  From the sounds of it, it will just be a meet and greet with another list of future blood tests.

No one in the medical field and none of his 15 specialists he has on his team of doctors has been able to get to the bottom of this.  Only two have even cared to even try to figure it out with no luck.  The waiting is hard.  Seeing my sweet toddler in pain all the time is harder.  Not knowing what this is or how to even help him other than Tylenol or Motrin is the worst.

I wish the actual show Mystery Diagnosis was a real foundation that actually did try to figure out what was wrong with people and not just a show to show those who have already got it all figured out.

For now we just pray every 14th day after his last attack that he will somehow skip the next cycle or better yet that this was all a fluke and there isn't anything wrong with him and one day he just wont get sick for a very very long time.

Thursday, August 22, 2013

Blended Diet Part 2: How we got started

We Choose REAL FOOD!!!
This post will go into detail about how we started our Blended Diet and the steps that followed.  A pretty technical post that may bore those who are not looking to start this form of diet themselves.  :)

All of our ingredients and measurements are calculated to Noah's specific size (33" long), weight (24-27 pounds), and age (20-22 months old) and dietary goals (he needed to gain a couple pounds to start and then maintain for a few months).  We found a dietitian that was willing to help us out and we have had regular blood draws to measure his levels (calcium, protein, vitamins, minerals, ect) so that we can adjust his recipes accordingly.  Each person is different as well as their dietary needs.  Noah currently does not have any form of hormone issues, allergies, or dietary restrictions so we have been able to pick from a variety of food options in creating his meals.  The one are we had to watch closely was the rate at which he was to gain weight.  He is severely low tone and very immobile getting little calorie burning exercise a day.  We had to consider this in every meal so he didn't get too big too fast and hinder his movements or abilities. Noah also had eaten many real food items in his past and we knew that his body could handle real food. 

Goal:  Have Noah gain 2-3 pounds with a well balanced meal plan and then maintain that weight without gaining or losing more than a few ounces for an additional few months.  Then we re-access at that time.

  • Total caloric intake of 900-1000 calories a day.
  • 34 ounces of free liquid a day (24 hours)
  • 15-20 grams of Fiber/day
  • 12-15 grams of protein/day
  • Keep recipe well balanced  
Recipe Elements: 
  • Vegetables
  • Fruits
  • Protein
  • Grain
  • Fat/Oil
  • Liquid (preferably calcium fortified)
  • *Spices-optional
  • *Vitamins-optional
Challenge: getting enough calories to fit into the volume we needed.  Noah can only tolerate 4-6 ounces of anything in his stomach at one time so we have to make sure to pack in everything into that volume while still following all of the above "guidelines" 

Blender: You must have a really high end blender (Vitamix, Blendtech, Ninja) once you get into blending food like whole grains, meats, raw vegetables, ect.  It has to blend well enough to make it thin enough to flow through the feeding tube without clogging.  If you are starting like we did with baby food then you can use pretty much any blender.  We used the baby bullet and it worked great as long as everything you are blending is already the consistency of baby food. 

Tricks & Tips: lessons learned :)

  1. mix all liquid and soft foods first then slowly add in dry foods
  2. blend multiple times to ensure smooth texture
  3. use a strainer if you are not sure if there are any clumps
  4. have a towel, washcloth, or paper napkin around as there are messes
  5. scrape out blender you will be amazed at how much is still in there
  6. have a large space on your counter for this process
  7. save all baby food jars if you plan on freezing your own foods
  8. If you save food in the fridge for the next day measure out your meals and then let sit overnight.  Then the next day add in the extra water/fluid you will need.  Grains absorb fluids and make the meals really thick over night
  9. This is real food and can grow bacteria if not kept clean or cool.  Always put an ice pack when packing this food around with you.  Would you eat your breakfast food at 8pm if it has been sitting out on the counter all day?
  10. warming food before you feed it to your child makes the meal smoother and thinner 
  11. If you freeze your food/meals only fill the container partially as it will expand once frozen
  12. Aim for a rainbow of colors for his foods (veggies & Fruits).  different colors means different minerals, vitamins, and nutrients. 
  13. We opt for variety at all time but if your doctor is okay with a strict but balanced recipe then giving your child the same food each day is just fine.  But talk to your doctor or dietitian first.
  14. Certain foods make blends really thick-Avocados, bananas, quinoa, starchy foods, ect- watch out for these
  15. Certain foods make blends to thin (volume issue)- fruits (melons mainly)
  16. Certain foods are more prone to cause clogging issues- berries, whole prunes, things with tough skins or seeds, hard grains, ect
  17. Dairy milk froths when blended and can alter measurements
Equipment (other stuff you 'might' need):
  1. Blender
  2. measure cups and spoons for both dry and liquid goods
  3. a fine mesh strainer
  4. a spatula
  5. a cloth for messes
  6. 60 cc cath tip syringe(s)
  7. all your food and vitamins and medicines
  8. pump bag (if you go this route)
  9. If you plan to make ahead of time and save or freeze have your jars, bags, pouches, or cups clean and ready to be filled.

Week One:  We replaced one formula meal with one full blended meal.
  • we chose the easy route since Noah was still a toddler and went with baby food.  Not the cheapest option but since we both work full time this was the best option for us. 
  • He was still getting most of his nutritional needs through his formula this week.
  • 4 bolus feeds during the day (8am, 11am, 2pm, 5pm) over 1 hour and a 10 hour continuous feed during the night of water or water with formula to meet his free liquid and calorie goals. 
  • We still ran his BD meal over the same 1 hour time frame to start.  
  • 2-3 times a day about 30-60 minutes prior to each meal we would flush him with 1-2 ounces of water.  This helped meet his liquid goals as well as "clean out" whatever food was still in his stomach to make room for the next meal.  ***free water without anything in it does not digest therefore it absorbs in the body within 20-40 minutes and will not make you feel full or take up any room in the stomach for each meal. 
Recipe: (total of 150-250 calories needed for this meal)-high end if he vomited his earlier formula or not. We gave this one BD meal to him at 5pm each day to start. 
  • 1 ounce protein (Gerber meat-chicken, turkey, ham, beef...with gravy)-50 calories
  • 2 ounces vegetables (Gerber sweet potatoes, peas, or carrots)- approx. 40-50 calories
  • 2 ounces fruit (Gerber pears, apples, mixed fruit)- approx. 40-50 calories
  • 1/4 cup calcium fortified liquid (dairy, rice, soy, almond milk)- approx. 20-30 calories
  • 1 tsp oil (flax seed oil w/omega 3, olive oil, coconut oil)- approx. 30-40 calories
  • 1/4 cup grain (baby cereal-rice, multi grain, oatmeal)-60 calories
  • Vitamin D-400 units
  • 1/2 tsp Probiotics
Week 2&3: We continued to follow this same recipe for weeks two and three but started to experiment with different baby food options.  We also started to introduce 2 BD meals a day by week three at the 2pm and 5pm meals.

Week Four: We stayed with the same guidelines as the prior weeks but now we started to add in adult foods.  We were still doing 2 BD meals a day and 2 Formula meals a day along with the continuous night feed of water and/or formula depending on if he met his calories and liquid intake. 

Recipe: (total of 300-450 calories needed for these 2 meals) 
  • 2 ounce protein (Gerber meats, tofu, ground turkey/beef, peanut butter, grilled chicken, roast)
  • 4 ounces vegetables- 2 oz of 2 different options (Gerber foods, edamame, kale, spinach, frozen mixed blends, grilled squash)
  • 4 ounces fruit- 2 oz of 2 different options (Gerber fruits, fresh fruits, prunes, applesauce, fruit cups, frozen fruit)
  • 1/2-3/4 cup calcium fortified liquid (dairy, rice, soy, almond milk, broth or stocks)
  • 2 tsp oil (flax seed oil w/omega 3, olive oil, coconut oil)
  • 1/2 cup grain (baby cereal-rice, multi grain, oatmeal, brown rice, quinoa, flax seed, Mill seed, hemp hearts, multi grain cheerios, couscous, whole wheat pasta, whole wheat bread, ect)- stay around 120-160 calories
  • Vitamin D-400 units
  • 1/2 tsp Probiotics 
***I started to run into volume issues once I went to two meals a day and learned to adjust my food choices depending on how juicy they were or how thick they blended.   Trial and error. 

Week Six: FULL BLENDED DIET (900-1000 calories/day)-

**We stayed with the four bolus feeds during the day but adjusted the times to fit his needs.  He is more gaggy in the mornings so we do a 4-5 ounce feed at 8am and then increase it to his now 6-7 ounce total dose/meals throughout the day depending on how he is feeling.  If he eats 6+ ounces in one meal then we wait 3.5-4 hours for his next meal (starting from the time he started his last meal).  Whereas before he was starting each feed 3 hours after he started the last one. 

**We still are giving him 2 ounces of free water in-between each meal and are still running him over a 10 hour continuous feed at night but now it is only water.  We still are unable to meet his 34 ounces of fluid goal during the day alone at this point. 

Recipe: (total of 900-1000 calories needed for these 4 total meals) 
  • 2 ounce protein (Gerber meats, tofu, ground turkey/beef, peanut butter, grilled chicken, roast)
    • this does not increase because it meets his protein goals with only the 2-2.5 ounces.  
  • 8 ounces vegetables- 2 oz of 2-4 different options (Gerber foods, edamame, kale, spinach, frozen mixed blends, grilled squash, ect)
  • 8 ounces fruit- 2 oz of 2-4 different options (Gerber fruits, fresh fruits, prunes, applesauce, fruit cups, frozen fruit, fruit juices, ect)
  • 1-1.5 cup calcium fortified liquid (dairy, rice, soy, hemp, almond milk, broth or stocks)
  • 2 Tbs oil (flax seed oil w/omega 3, olive oil, coconut oil, other oils)
  • 1 cup grain (baby cereal-rice, multi grain, oatmeal, brown rice, quinoa, flax seed, Mill seed, hemp hearts, multi grain cheerios, couscous, whole wheat pasta, whole wheat bread, ect)
  • Vitamin D-400 units
  • 1/2 tsp Probiotics
  • Multi-vitamin-currently Noah is on 1/2 of a child's Flintstones type multi-vitamin

I have also started to make my own veggie and fruit blends.  Here are my two first blends that I came up with.  I keep these in my freezer and then pull what I need out the night before to thaw in the fridge until I mix it into my meal blend.  (I plan on dong many more of these)

Simple Veggie Blend:

1 entire Costco size bag of Frozen Normandy-Stye mixed Vegetables
1 entire grocery store brand bag of shelled steamed edamame
1 entire grocery store brand of frozen kale
  • Cook everything according to directions
  • Blend 3-4 cups mixed veggies, 3 Tbl edamame, 1/2-1 cup kale, and 1 cup water in batches.
  • Pour into your freezer safe containers, label with date or keep note of the date you made these.
When I did this it made 34 (4 oz) containers.  I used cleaned baby jars to freeze these in.  Each container is roughly 45 calories, 2-4 grams of fiber, and 2-4 grams of protein.  I did not label these as I want to use them again in the future.  I put them in a box in our freezer and labeled the box instead.

Simple Fruit Blend:

1 extra large cantaloupe
1 regular sized can of Dole pineapple without the juice
1 regular sized can of pears with the juice
1 regular sized can of pears without the juice
3 regular sized apricots

  • Cut the Cantaloupe and remove all seeds.  Dice up the fruit in chunks and throw away the rind.  
  • open your three cans of fruit and drain the juice out of the pineapple and one pear can.
  • Cut apricots in half and remove seed
  • split into two batches of equal portions
  • blend away :)
  • Pour through a strainer before jarring.  The pineapple will leave a ton of fibers that may cause clogs in your pump tube.
This makes a ton of liquid and frothy volume.  I let it set out for a few minutes to let the bubbles settle.  I then poured into 23 (4 ounce) baby food jars.  I calculate each jar is roughly 60 calories. 

We are still in the learning process as you can tell but I think we are making ground on this whole blended diet thing.  We are currently making two days worth of food at a time and keeping them in the fridge ( I plan to expand this to a full week at a time).  I have personally found that using reusable baby food pouches is our best option.  We have recently purchased the Yummi Pouch which can hold 6-7 ounces of food at a time, opens from the top which I love, fits a 60CC cath tip syringe in the screw off port, cleans really easy, and the bottom expands as you put the food in it and it doesn't tip over while filling. There are many brands of reusable food pouches on the market right now.  I make 8 (6-7) pouches every other day right now which makes it really easy to bring to daycare and on errands.  I use a wine bottle freezer sleeve/pack to slip the the food pouch in while running errands to keep it cool inside his pump backpack. To fill these pouches I have found the easiest method is to either use a large 60cc or 100cc cath tip syringe or to use a measuring cup that has a long narrow spout.  

There are many many blogs, networking groups, websites, and books that offer a variety of other tips, tricks, and recipes.  I am not by any means an expert in this area but I still wanted to share with you our journey and how we got started.  I find myself researching new recipes daily and it is almost a game for me to find one that has the perfect amount of volume/calorie/guideline balance.  I notice a major difference in Noah since starting him back onto real food again. 

I have also met a wonderful tubie friend who is in the process of starting her own line of Complete Tube Fed Meals.  I can't wait until she is in full production :) Check out her website and her adorable Chief Inspirational Officer: JustFood

Blended Diet: Bye Bye Formula

compare to a tiny apple
Noah's eating has been a yo-yo of a journey as you all know.  He started out on breast milk, then was drastically switched to formula.  He was introduced baby food around 4.5 months old and took to it really well and then over some time all oral eating started to decline.  Yada yada yada....(insert many months later)...(add in surgeries)...(with a dash of oral aversions and GI complications).....and now he has the infamous G-tube (feeding tube directly in his stomach).  It's a small "button" that has a cap that is attached to him at all times (the balloon part is inside his stomach).  Yes, we change it out if the button gets old and no it doesn't hurt him at all.  It has a plug that keeps it closed when you do not have a tube/extension attached to it.  As you can see the tube is really narrow and the button is very small so it's not like we can just push a steak through it.  You are extremely limited as to the texture and consistency of food that can be pushed through the tube, past the button, and into his stomach.  Liquid of course being the easiest.  Doctors are very quick to put children on feeding tubes and yet there is very very very few ways to get them off the feeding tube.  ***hint:  Looking for a profession?  Become an experienced Medical professional that ONLY deals with getting children OFF feeding tubes.  You will make millions!!!  No lie.

When Noah was put on his feeding tube at 1 1/2 years old it was because he stopped eating orally and never really could drink orally anyway. This was a means to keep our boy hydrated and nourished.  We were given a choice of either pediasure (dairy based) or Bright Beginnings (soy based pediasure type drink).  Basically a high calorie formula.  How many "typical" 1 1/2 year olds do you know that is still surviving solely on formula or breast milk without any other type of food or drink given.  Not too many I am sure.   Why should Noah?  A question that haunted me since we left the hospital.

Have you ever read the ingredients on a can of pediasure?  Um...water, sugar, more sugar, stuff I can't pronounce, and even more stuff I have never heard of.  And this is what the medical field was telling me over and over and over was the best choice for my son.  I just didn't get it?  He was eating many types of baby foods and ground up dinners that my husband would make for the family.  He never once had an allergic reaction to any type of food including all those that they tell you to be careful of.  He loved spices and avocados and beets of all things.  Then BAM....insert gtube....and then take away all real food?!?  Can you see why I was so put off by forcing my toddler to now only consume formula.  It just wasn't right and I could tell that Noah's body also didn't agree with his new forced diet plan.  He got constipated every single day, he threw up more days than not, his reflux was horrible and his GERD/Sandifer's Spasms intensified.  He was always full of gas.  He was always crying during therapy or tummy time.  He didn't like to be hugged tight.  He was always sickly looking from always feeling like he needed to vomit of from constant bouts of vomiting.  He would wake up every single night.  Not always crying but usually tossing back and forth from discomfort.

We had to rework our lives and everyone who ever watched him to fit in his new feeding schedule that was so strict that with the slightest alteration you would be sorry to not have a puke bucket handy.  Here was his "formula" schedule that we lived by.

8am, 11am, 2pm, 5pm: 4 oz of formula dripped in by pump over 1+ hours while he was sitting angled upright to prevent puking or reflux.  Then he would have to continue to stay in that upright position for more than 30 minutes while we prayed he didn't puke.  Then if we were daring enough and had a towel handy we could then try to lay him down for a nap or to play on the ground and again say a prayer he wouldn't lose all that went in him and choke.  He never just lost a little bit.  If he gagged or refluxed hard enough he would have three rounds of projectile vomiting.  I am sure every inch of everything we own has been a victim by now.  Then we had to "try" to give him free water in between meals to increase his fluid intake and again hope he didn't lose it.  Then we also had to slip in two different types of medications to reduce the acid in his reflux so his throat wouldn't get damaged from all the vomiting.  We would have to line his crib rails, under his bouncer chairs, and under his high chair with towels.  We even had to keep a towel draped over the backseat of our car when he was sitting in his car seat.  If we won the feeding lottery he was able to keep that 4 ounces in him and he/we would have 1-1.5 hours to get in as much as we could with play or therapy or errands before we had to start the cycle all over again...every single day.  Those were good healthy days.  Toss in a running or stuffed nose, a cough, an upset stomach, constipation, teething, fevers, crying fits, too tight of highchair belt, or just too hot of weather and the whole process got much much harder and the rate of keeping in any of that formula would literally be an act of God. We just kind of expected him to throw up and it became a new norm for us and we had the whole Operation: Puke Patrol down and could do it with our eyes shut and one hand tied behind our backs.

None of this should be normal.  None of it should sound right.  None of it should ever happen.  Our lives should not be turned into fear of feeding our child and then sorrow for not being able to keep anything in him.  We told any medical professional that would listen.  All of his many many doctors.  Nobody would ever consider that it was the formula. All they did was make us change the type of formula.  "Try a non- dairy based one, try a soy based one, try a special anti protein one, ect."  We tried to listen to them but we knew...I knew! It's the formula that isn't working not my son's body. I am not against formula in general but for Noah specifically it just wasn't working for him and I needed to figure out what would.

a great book to get you started
I took a very controversial and highly debated route and switched Noah over to what in the tube world is referred to as "The Blended Diet"  BD for short.  Basically, real food, blended very thin, and fed through the tube instead of the formula.  Not rocket science but try finding one medical professional that promotes such a diet is like finding a needle in a haystack. Yes, many are intrigued with the idea of the BD and some will even give you the go ahead to try it.  However, nobody is really there to help you get started and you pretty much have to research it all on your own.  Most insurances will not cover a dietitian for the BD either.  Thankfully there are networking sites full of BD families and even a couple books now published that help with some of the in's and out's of starting and living with a BD. 

Not sure why doctors and therapists are so hesitant to learn and promote the BD.  A variety of reasons have been brought to light but no real definitive answers.  Some are too scared of causing their patients to have an allergic reaction.  Some are nervous that the families will not take on the full responsibility of the BD and harm their child's bodies.  Some are afraid parents will just throw in PB&J's or Mac and Cheese for every single meal and call it good.  Whatever the reason is I have not had a single doctor get excited about me even mentioning the idea of starting Noah on the BD.  So, I didn't tell most of them and really would only talk to his Dietitian up at Shriner's (because my insurance would not cover a dietitian) and she and I would work out the logistics  to the BD...because their are many.  She has been a lifesaver for me and has been the only person I could turn to for help coming up with recipes to fit Noah's specific needs.  Since meeting with her I have been given a few other food ideas by a couple of his doctors that I have admitted doing the BD with.  Not full recipes but ideas of different foods.  That has been helpful. 

So active these days
I will go into all these logistics in a separate post for those who might be interested. For those of you who are just looking for Noah updates I am proud to say that we are currently two months into the process of a blended diet.  We had to start slow and transition him (doctors orders) but now I wish, for our own situation, that we would have jumped in head first.  It has only been in the past five days where Noah has been on a full blended diet with little to no formula. 

This week alone Noah has made strides.  I mean that when I say it.  He is sleeping through the night completely.  He has found his voice and is really letting everyone know how much he likes to hear it.  He is so much stronger I can't even describe it.  He is consuming four times as much food per feeding than he was in half the time= more free time to play :)  He is so much happier, doesn't have really any gas, is going potty unaided daily, has energy like I have never seen before, and the MOST rewarding thing of all.  We are now FIVE full days vomit free.  We have been able to cut out one of his reflux medications and we can actually lay him down on the ground mere minutes after feeding him.

Yes, the process of a BD is tedious to start out but it has literally changed our lives for the better.  It has been one of the best decisions I have ever made for my son.  It's almost been a little miracle for my family.

****Update (one week after drafting this post) Noah has run into some major constipation issues. The motility of his GI tract isn't functioning properly.  I am pretty sure it has something to do with one of the foods I was putting in his BD.  Recipes have been adjusted, we have cleaned him out, we have started using Miralax daily again, and I now know what signs to look for to prevent future GI issues.  This should be a warning to all of you who chose to start the BD.  Make sure to keep them going regular.  If you find that their motility is slowing down then you need to take action immediately to prevent a total shut down..  Also, makes sure to add a fair amount of fiber to their BD.

I still stand by my last statement that the BD  has been a lifesaver and the best decision we have made for Noah.  Even with this past weeks hiccups.  Learning as we go :)

Tuesday, August 6, 2013

To Those Who Chose

This is my unofficial disclaimer to those moms and dads who share 50% of the same DNA as their Special Needs child(ren).  This post is different. This post has a very specific audience that I would like to express my gratitude towards at this time because I feel that they need to know as much as we do....

Since being handed my official "welcome to the special needs world" entry card I have been privileged to witness many acts of kindness, read many blogs, seen thousands of networking and forum posts, and made several wonderful friends.  There are so many emotions that swirl around and change from day to day for anyone dealing with any form of hardship in life.  The highs are high and the lows are low.  The one thing that stays constant is that for those who gave birth to their special needs child they do what they need to do, every day, to learn, understand, face, and grow each day with the news they were handed about their child.  Yet, we are not alone.  There are these additional angels out there. These are the angels that chose to be a major part, if not the most important part, in the life of a SN child and took on this role I thank you!

Through marriage, adoption, foster care, a friend or family member, no matter the chose to pick up your special needs entry card and slip it safely into your pocket and take on whatever highs and lows came your way.  You chose to be there for every sickness and smile.  You chose to endure every fight and phone call.  You chose to love unconditionally and stand hand in hand with this child that did not come directly from your I thank you!

Caring for any child is hard.  Caring for one who comes with 10+ doctors, over 50+ appointments each year, a medical history 5" thick that you have to memorize, a constant flow of onlookers, and a conclusion that the local hospital is your second residence is very very very hard.  It takes a special kind of person to take all of that on especially when you had a choice not I thank you!  

I want to say THANK YOU over and over again.  You may be a grandparent.  You may be a step, adoptive, or foster parent.  You may be a sibling or extended family member.  You may be a nurse or  you may be a friend of the family.  To the child you love you are their world, their lifeline and the one who holds a special place in their special heart...and they thank you! 

Friday, July 19, 2013

Double Ear Infections=a Milestone????

Sick little Bobaloo
It started about 9 days ago when I noticed Noah was sleeping more.  He normally stays awake until 7-8pm but was falling soundly asleep around 5pm and I couldn't keep him awake.  I noticed a new tooth was coming in and chalked it up to this.  Then last Sunday we were meeting some friends for an outdoor concert that was in the mountains.  I naively thought that since it was in the mountains it would be cooler instead of the blistering heat that stood in the valley.  I was beyond wrong.

We were surprised that Noah actually slept in which was odd but woke up relatively happy.  We loaded the van with his arsenal of stuff but decided to leave his many cool packs/towels/fans at home since we were after all heading into the mountains.

Two seconds into his carseat he threw up everywhere and we couldn't get him to stop.  We were fighting whether we should continue to go or not but after he was cleaned off he seemed fine, so we cleaned the van and headed out.

We loaded his stroller full of his many bags and met up with our friends to enjoy a nice afternoon of music and fun.  We lasted all about five minutes...if that.

Noah started to fuss and cry.  The weather was much hotter than I had expected so Jer and I took turns carrying him indoors where the air-conditioning made for a much  more enjoyable experience.  However, when it was my turn Noah just screamed bloody murder and I didn't know what was wrong.  He was burning up and his face was as red as a lobster.  I sat on some couches in the basement of this lodge trying to pretend to all those walking by me that I had things under control when I honestly didn't. 

Needless to say we loaded back up in the van and headed home a mere 40 minutes after we arrived.  The entire 50 minute ride home was full of retching and gagging and screaming and whimpering.  I felt so bad for our little man. 

The second our garage door shut I had Noah out of the carseat and stripped down to a diaper.  105.7 was what the thermometer was reading and the puking that followed brought me to the conclusion that Noah had the flu. 

For four days straight Jeremy and I fought a losing battle against this fever.  We were running off literally a couple hours of sleep each night and rotating motrin and tylenol every few hours just to keep his temp below 105.  Noah's bedroom floor became a campsite made out of towels, buckets, and cool rags.

We struggled with bringing him to his pediatrician because in the past 20 months of Noah's life we have received the exact same treatment plan for every fever or chill.  Keep him hydrated, give him tylenol or motrin, do cool baths and cool wrags, ect. 

Working full time means that I have less opportunities to get Noah to an unscheduled appointment. However, after the third day of this temperature reappearing every few hours despite the fact that we now had a way to keep him well hydrated (gtube), I knew it was just time to take him in. 

I woke up that morning and to my surprise Noah's temp was only at 99.9.....much lower than the past few days.  Did his fever just break?  Do I take him in now?  He actually felt so much cooler than normal and he didn't puke once in the past 30 hours....maybe he is on the mend and it was only a simple flu bug. 

So, I went to work and Noah went to his aunts house for the day.  Everything was going okay until I get a call that Noah was in this total scream-fest out of the blue.  I dropped everything I was doing at work and rushed him to the doctor.  Jeremy met me there because we knew something was just not right. 

As murphy's law would have it we pulled up into the parking lot of the doctors office to have Noah smiling, and kicking happily, and cutely babbling, and acting like he just pulled one over on his parents.  It was ridiculous!  All these days of struggling on what to do, if what we were doing was right, if we were bad for not immediately bringing him back into yet another doctor, leaving work last second.....uh.  Then when we finally do take him in Noah is all happy and chipper and a total angel.  Even the receptionist commented on how cute he was and how well he was doing for be "SO sick" as I had stated to her over the phone. 

Since it was a last minute appointment the doc was running a bit late.  I finally told Jeremy to leave and go back to work since Noah obviously was okay now.  After some convincing he did and I waited another 15 minutes until our doc came in. 

Noah was all super cute and adorable and continued to make a big liar out of me.  UNTIL....Dr. Z took a long look in his ears and pulled out what could only be described as a cherry sized mound of earwax (not literally but it was still massive).  After digging his way into his ear canal he noticed that Noah had a major ear infection in one ear and a minor ear infection in the other. 

Of course like any mother might feel I left the office with mixed emotions. On one end I felt horrible for not getting him into the doc beforehand.  On the other I felt happy that Noah had something that could actually be treated. 

This is a milestone for Noah.  In all 20 months since his birth and throughout every single hospital stay we have had he has never once been prescribed antibiotics for a simple "typical" child condition.  Not saying that we are celebrating this because double ear infections are not fun for anyone involved. However, it was an ear infection that lead to a high fever which in turn made him nauseous and caused vomiting.  It wasn't some crazy hormone imbalance or undiagnosed virus or infection or backed up GI tract. 

Noah got sick....just like any other child could with something any other child gets.  We left the office with a real solid treatment plan of 6ml of Amoxicillan 2x daily for 14 days.  This is the first time ever that we left a doctors office with a definite plan of action and one that had a start and stop date and an outcome to look forward to.  WHAT A RELIEF!!!! 

Thursday, July 11, 2013

G-tube: Hydration & Nutrition

Happy Little Guy
Food and Water.  Two things every human needs in order to survive.  As a parent providing for their child, keeping them well nourished and hydrated is the primary responsibility from the moment they are born. Most new mothers debate whether they should breastfeed or not and then some struggle with whichever decision they do end up wanting or having to do.  Yet, they know that in the end their child will be receiving the nutrients they need in order to grow and develop.  Most mothers and fathers are told that participating in the feeding of their newborn is key to form a strong and stable bond...along with many other debatable observations and antidotes written about or spoken of by doctors, therapists, or parents alike.   Whatever reason is behind a persons desire to be there to feed their child, simply put...they are getting hydrated and nourished. 

Have you ever had a single moment or memory of being near a child as they consumed some form of nourishment that you played a direct role in providing for them?  Either from your breast or bottle or even a homemade meal that you cooked specifically with them in mind?

Now...take away their mouth.  What would you do?  How would you feel?  All that preparation and time you spent?  All that effort!

Maybe I got a tad bit dramatic in the picture I wanted you to see but at least I left you with the same stumped and baffled feeling that so many in this world are faced with.  For a variety of reasons many children as well as adults cannot orally consume food or drink and therefore cannot eat in the typical way that most humans do.  Noah among them.

My husband, our families, as well as myself literally fought the feeding battle multiple times a day to try and keep Noah away from dehydration.  The weight of it all sat on our shoulders like a million rocks that kept piling on with every feed, day, and week that passed.  Topic of conversation between my sister-in-law (Noahs daycare provider) and myself would always be about the spoonfuls or ounces that went into him, if they stayed in him, and how many fully wet diapers were being produced.  There was even a point where we kept logs but then the logs became a pile of rocks of their own and in order to survive we had to brush off the rocks we no longer had shoulder space to store. 

Noah was always borderline and never once looked like he was in danger of being malnourished or dehydrated.  His low tone always kept him looking like a happy chunky baby.  His pediatrician nor any other doctor ever had a concern about his nourishment either.  His BMI was a tad low but never too concerning to call him failure to thrive.  He continued to grow and was very long for his age.  But we knew as his parents that something just wasn't right.  Yes he looked healthy but he was always slightly lethargic.  We blamed the seizure medication or teething or a flu bug.  We blamed the weather or the strain of therapy.  We blamed his near blind vision and his delays.  Occasionally he would have a "day" where he would have all this energy and do something that would blow us away...and then it was gone.  We knew he had this energy storage somewhere.  We knew that the state we always saw him in was not the state he should be living.  He had more in him that was desperate to come out but we didn't know how to tap into it.

Around the age of 12 months Noah was consuming on average 8-12 ounces of baby food a day along with about 21-30 ounces of formula.  Not a ton compared to normal standards but enough to keep him growing and staying our little chunkamonk.  It was a fight to get this much in him and more nights than not I laid awake counting calories over and over to make sure I met our daily goal...which I never did but was always super close.

A few months ago we started what I like to call our "three months in oblivion". Completing another round of intensive therapy at Now I Can but missing many of the days due to sickness.  In and out of the hospital 8 times in two months with simple surgeries and common colds.  Therapy, getting your adenoids taken out, teething and the sniffles should not put a child in the hospital...but with our Noah it did.  We couldn't keep him hydrated.  He was never what the ER docs like to call severely dehydrated but enough to need three trips to the ER for emergency IV fluids.  Severe=debatable.

A sip here and there just wasn't cutting it.  Intermittent spoonfuls of baby food while praying he would "sleep drink" as he normally did was not winning us the war.  We kept hoping that getting his adenoids out or upper frenulum clipped would help his mouth start to work like the docs told us it might...but it didn't.

After the third trip to the ER for fluids we were forced to put a nose feeding tube in him just to have a way to keep him hydrated while he healed from the surgery.  Well, the nose tube made feeding him worse and we eventually were scheduled to get a stomach feeding tube put in (g-tube) just 10 days later.  I felt defeated, like my 19 months in fighting this war was over and I stood on the losing side with my flag dragging behind me like a toddlers woobie.  I cried, I maybe had an extra glass of wine a few too many times, and then I just gave in.  Nothing else I could do.  You cant win a war without the tools to do it.  We needed new tools and a gtube was the next option for us...the only option really.

So, here is my honest opinion about the gtube.  I have an unhealthy relationship with the whole thing.  One day I am in love with it because I know for certain Noah is hydrated and nourished and thriving in his development, but the next day I want to break up with it and throw it out the door and run screaming into my pillow how much I hate it.  Then I sit up, pull myself together, and recited all the good things it is doing for not only Noah but my marriage, our family, and our extended families lives. 

Sound Sleeper these days
We have freedom now.  Instead of all those weighted rocks on our shoulder we now only have a three pound backpack to carry around, and only when he is hooked up to his feeding pump.  The second the gtube got surgically put into his stomach it was like a bulldozer came and scrapped every single rock away from us.  We have yet to waste a single moment or wink of sleep worrying about if Noah got enough to eat, if he stayed hydrated while at the pool, or if his medication actually reached his stomach.  We can do things now.  Like go to the lake or shopping for more than a couple hours.  We can go on long car rides up the canyon now and finish projects.  We  both are able to get a really good nights sleep because the pump is providing him with water and calories and doing all the heavy lifting while we slip into slumberland. The pump is like his Nanny who takes care of his tummy while he gets the rest he needs as do we. We no longer have to force Noah multiple times a day while he is awake to eat, chew, and consume food and liquid his little mouth can't handle right now.  We are no longer the alarm clock that wakes him from every single nap as we try to sneak in a bottle to have his natural sucking reflex take in a few ounces.  We are once again the good people instead of the ones who cause him discomfort and pain and make him throw up or force his throat to work in a way it can't yet.

Noah has THRIVED since the gtube.  As much as I hate that we can't sit down and eat some fish crackers together I love the fact that Noah is starting to enjoy food again but at a much much much slower pace.  We still work with him daily trying to feed him orally but it is a really slow process and we are taking this first few months and intentionally going slow with it.  Normally I jump in head first but all that energy was sucked out of us all and as much as Noah needed the break from feeding torture, we also needed the break to find our sanity again.  We hated feeding time as much as Noah did but afterwards we were the ones who had to carry around the worry and guilt every single day and night.

Liking Food Again!!!
It has only been 7 weeks since Noah got his gtube.  In that time he has put on three full pounds and is even more chunky than he already was.  He is starting to try and sit on his own now.  He is grasping things with an urgency I have never seen before.  He is starting to track across midline back and forth and really trying to attend to objects now.  He is laughing nonstop and babbling more than we have ever heard.  He is tolerating things so much better and longer.  Feeding therapy is just that now...therapy and not a fight so he actually enjoys it once again.  He is sleeping better and napping longer.  He is starting to like certain toys better than others and we found he really loves and adores fuzzy blankets rubbed on his cheek.  He has this energy that wont stop now and is starting to try and stand while in his door frame jumper.  He hasn't been sick once in 7 weeks which is like a new record.  He has even broke two new teeth and hasn't thrown a massive fit about it.  We are no longer in oblivion anymore.  We actually have a truly happy and healthy family and are starting to find ourselves again.  We are calmer and more relaxed, rested and humorous again.  As much as I can say I hate the gtube I can't because the gtube gave us our livelihood back.

Yes, it was a major and massive learning curve that took time and research to fully accept.  In three weeks we had it down to a science and even started what the "Tubie" world calls the "Blended Diet".  Noah is once again getting real food in his tummy which has helped dramatically with his reflux, gag reflex, and overall composure.  

Look at Noah try to sit on his own and use his arms
My advice to all you who are struggling with this decision and are currently in your own feeding war.  Take the time to fully research it, talk with your doctors about it, watch youtube videos on how to take care and maintain a gtube, and get comfortable with the idea before you totally disregard it.  All those moments where you tell yourself "If only I had known..."  This is one for us.  We are not kicking ourselves for fighting our war because it allowed us the sanity to know we did all that we could.  However, seeing what Noah has accomplished since getting fully nourished and hydrated is beyond our wildest imagination.   Its a very tough decision to make but at this point in our family we made the right choice.  He may always need it, he may surprise us and get it out in a few short years.  At least we know that our baby boy is getting all the essential vitamins, minerals, fluid, and substance his body needs to perform at his best and wow us with his next move. 

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. 

Friday, May 17, 2013

Adenoidectomy+Frenectomy = (G-tube minus Ng-Tube)

Adorable as ever noogie and all
 On 4/30/13 Noah went into his first surgery.  Surprisingly this was his first actual surgery even though he has been in hospitals and doctor offices every single month since he was born.   Before this surgery Noah had been sedated twice in the past for his two prior MRIs.  This time however he was actually given anesthesia.  I was unsure how he would react to this and the surgery.  I had anxiety for weeks leading up this surgery and exactly one week later I am still full of anxiety and fear. 
A few months ago I had gone ahead and scheduled an appointment on my own with an ENT (Ear Nose Throat doc) for Noah.  Nobody including his special needs pediatrician had ever mentioned Noah be seen by such a doctor.  I however knew he needed to.  Since birth he snored and snorted and always sounded like he had shallow breathing even though every oxygen monitor he had ever been hooked up to (12+) had always shown really good levels (thankfully).  As I have mentioned endlessly Noah to date still in unable to drink liquids while he is awake and I have always felt like there was/is an underlying reason to think about in addition to his oral aversions and sensory issues.  He always accepted liquid in his mouth using many forms of cups ect however he just could never actually swallow it without acting like he was drowning or in pain.  

One day I caught a bit of a cold myself and my nose was completely stuffed and I was trying to drink my morning coffee when I realized that it was incredibly hard to swallow and breathe at the same time.  It dawned on me that this might be what Noah is also feeling. 
The ENT gave Noah an exam and didn’t see much but Noah started to snort and so he sent us for a throat x-ray.  The x-ray showed that Noah’s larynx and his adenoids were vibrating off each other because of his low tone in his neck and throat.  All this vibration caused his adenoids to swell very large and were blocking his airway.  His tonsils looked normal and of good size so the ENT decided it best to remove Noah’s adenoids only at this time to open up his airways and hopefully in time he would be able to drink feeling safe someday.  

Then, during his most recent session at Now I Can, one of the amazing therapists was watching me give Noah a bottle while he was asleep.  She was very intrigued and noticed that all of the muscles that would be needed to get one to swallow were working normally.  Then the next day I tried to give him a bottle while he was awake and she noticed that he was unable to wrap his upper lip around the bottle nipple. 

In all the exams from every single doctor and therapist Noah has seen not a single one of them noticed that Noah had a very prominent upper lip tie.  I remember once when he was first getting his upper two teeth I noticed how large and tight this frenulum seemed and showed it to his general pediatrician who said it was normal.  When I was 11 years old and going through the braces stage I too had to have my upper frenulum clipped so that my upper teeth would be able to move together and reduce the pencil width gap I then sported. I put in a call to the ENT and asked if it would be possible to clip this upper lip tie at the same time he was already under anesthesia for his adenoidectomy.  He agreed and an extra ten minutes was added onto his surgery time.  
Ninja jammies!!!
The morning of his surgery we were to arrive at 6am for check in.  This was a very early start as I had to wake up around 4:30 to be able to get us both ready and to the hospital in time.  I was the first to arrive and check in but within literally 15 minutes the entire room was full of families and small children still in their jammies not knowing they were all going to be knocked out and have something removed in a couple hours.  I felt bad for every child that hour.  

After Noah got weighed and dressed in this adorable little hospital jammies, which made him look like a karate kid, we were then escorted to the surgery waiting room.  I was alone at this point as my husband had to work and I had told my parents to come up once he was taken back for surgery.  Thankfully, my sister-n-laws (Noah’s care taker during the day) neighbor works at this hospital and had come in especially for Noah.  This made me feel so special and helped tremendously with my anxiety and fear.  She walked me though all that was going to happen and took him back for the surgery herself.  While waiting in the surgery waiting room with my parents she not only called me once but twice within the 35 minutes surgery to give me updates.  I felt like a VIP and was very thankful for her guidance and help.  The surgery really did only take 35 minutes and that was from knock out time to post op.  I was then called back to see my poor baby in this dazed and screaming post op state from the surgery and anesthesia.  I felt so bad and then I saw the blood stains on the sheets and felt even worse for my little man.  I could tell his was in so much pain and so confused.  

Our “hospital angel” then led us to the 23 hour overnight observation area where we had to stay because they wanted to keep an extra special eye on Noah since he has neurological issues.  This was a total blessing in disguise because there is no way I could have handled Noah at home that first night without an entire team of nurses and aides there to help us.  His lip looked like he had just received a collagen injection from the frenulum removal and his entire face was just puffy.
Noah did NOT have a very good recovery.  He was so uncomfortable and out of it that he just screamed and screamed and screamed.  I felt bad for the other kids recovering and having to wake up to blood curdling screams.  Thankfully our Angel as well as my parents were there to help me “try” to calm him down.  They kept him hooked to an IV in his foot and were able to give him some stronger pain meds that finally helped calm him down and fall asleep.  

The funny part of this entire adventure/horror story is that Noah has always hated being on his stomach.  Tummy time in our house started in infancy as torture time and then later on turned into “I’m just going to lay here in protest and not do anything other than sleep or cry or chew my thumb.”  However, literally the second out of surgery he was flipping wildly from back to stomach and since then this seems to be his preferred position.  All this tummy time has really encouraged him to put weight on his arms and the one good thing that has happened through all of this is that Noah is now able to sit in his floor bouncer without the huggabebe pillow and can actually balance himself. 
The first night was rough…really rough.  Up every 20 minutes and almost a total refusal to eat or drink which is to be expected.  It literally took me 23 hours to get in enough food and fluid to allow us to leave the hospital and go home instead of staying another night.  In retrospect, I kind of wish we did spend one additional night there.  As soon as I got Noah home, and after two bags of IV fluids and three doses of loratab, Noah was happy and cooing and hungry.  He ate an almost 300 calorie meal which never ever happens. Then out of pure exhaustion both he and I took a long nap on my bed where I slept too long and didn’t wake up before he did to feed him his “sleep bottle”.  As soon as he woke up everything started to go downhill.  He was thirsty but awake and couldn’t drink anything.  He was hungry but overly hungry and wouldn’t eat anything.  He started to cry and scream and so his throat started to get sore and raspy.  He kept banging his face into the floor or mattress and kept hitting his upper lip which would cause more pain.  Every time we tried to sit him up or lay him on his back he would cry harder like we were poking him with needles or something.  This lasted for two entire days and nights and both my husband and I were just spent.  

I had taken the day of the surgery as well as the following day off work to be with Noah and my husband took the next day off work to be with him.  We took turns trying to allow each other to rest when we could but still….we were plain exhausted.  On Friday, the next day, we took Noah to his care givers house but that was not a very good day either.  His food intake was going up but his liquid intake was dwindling further and further.  

Feeding Noah while he sleeps is impossible unless he is sound asleep on his back so that we can position and feed him correctly so that he does not aspirate.  Since he refuses to sleep on his back since surgery we have had to try and turn him over covertly and pray he doesn’t wake up.  Prayers were not answered and he has woke up more times than not which means no bottle…less fluid…and approaching a dehydrated state again.  

heading out with battle wounds and arm braces
Fast forward a few days: Totally dehydration now:  Made a call into his doctor who rushed us to the Rapid Treatment Unit at Primary Children’s Hospital for what we like to call “The Noogie” insertion.  When Noah was just 3 months old he got his first nose feeding tube aka Ng-tube aka Noogie.  We hated it so badly that we spend every moment weaning him off the stupid thing.  We have spent literally 13 months trying to keep the stupid noogie away.  Like a bad nightmare it was now back in our lives to taunt and torture our whole family.  We had to endure another overnight stay and I got to watch Noah puke and puke and puke because the first day of having a noogie is like gagging on a funny straw that has been shoved down your throat.  It was another night of no sleep and watching Noah try to adapt to another oral issue.  Keeping in mind he was only one week post op from his last surgery.  Poor dude.  

We have now had the Noogie in our home for exactly 8 days.  We have found it to be a love hate relationship.  We hate knowing that Noah hates it.  We hate that it has made him not eat a single thing by mouth since it was put in.  We hate that it gets caught on everything.  We hate having to keep Noahs arm in a brace to prevent him for yanking it out (which he tries constantly).  We have the process of it all and the care and management of the adhesives and syringes.  However, this is probably the first week since we weaned off his last noogie where Noah has been well hydrated and we have seen an increase in energy in him that we just love.  We no longer have to struggle to feed him bottles when he is asleep and can actually let him, as well as us, sleep uninterrupted.  We have been able to get all medication in him which is nice.  Plus, eat time we do try to feed him orally it is more for practice and not an anxiety stricken task to force calories into our son.  Like I said love/hate.  

AMT mini-One
Monday morning we have yet another 1-2 day stay scheduled in the hospital when Noah will be getting a permanent G-tube placed into his stomach.  We have chosen to go with an AMT mini-one button with a 14 french size tube.  We will be using both continuous feeds through a pump as well as bolus feeds through a syringe using gravity to flow the formula into him.  Currently we are using Bright Beginnings soy drink that is 240 calories a can since he has a milk intolerance.  However, this is all on our wish list and things might change mid surgery as they commonly do.  G-tube feeding will be new to us and we do have our hesitations, fears, but also positive outlooks as well.  It is the best option for Noah at this time and though we have fought this since he was an infant I regret not doing it sooner.  I have joined all the tube feeding networking sites and educated myself to the nth degree about g-tubes and maintenance.  

Monday starts yet another chapter to Noah’s story and another hospital stay and medical history line to his already too long list.  Praying that for the rest of this summer (and year) we will be able to stay out of the hospital, away from IV fluids, and miles from the ER.  I feel prepared and ready and I have a really good feeling about this surgery and what will come out of it.  I am not going in with irrational expectations like I did with his first Ng tube.  I will take it a day at a time and work hard to get Noah to eat orally as well as start to drink orally while awake.  Already with the noogie I feel a weight lifted off my shoulders knowing he is fed, hydrated, and is getting his meds.  The g tube which I might have to now call his “goobie” will allow Noah to have his throat and cheek back and once healed will be a discrete reminder to us that Noah is healthy.

Here is a link to an instruction Handbook about G-tube options and care that was given to us at our G-tube assessment appointment.