"When I think of you, I feel like smiling"

Upon discharge I have a few follow up appointments. Here's who is following me:
Metabolics: Dr. Kozenko
Neuromuscular: Dr. Tarnopolsky
Dietician: Amy Pender
Pediatrician: Dr. Rosner
Nurse: (CCAC) Michelle
Case Manager: (CCAC) Julia
Occupational therapist: (CCAC) Sheri?
Speech Therapist: (CCAC) oral motor skill

So you see, I have quite the crew!

Upon arriving home My mommy was supposed to make my formula from a recipe given by my Dietitian. I am on the powdered Similac Advance, however my concentration is higher than normal. I need more calories than the normal kid in order to grow. My mom measured out 670ml of water and 12 scoops and mixed it all together and fed me for the day. The next day my dad made note that the instructions were written as "measure 12 scoops and THEN add water to a FINAL volume of 670ml". Dad is making my formula from now on.

Some of you may be thinking, my dad isn't perfect either! He actually slept through my 1am feeding last Sunday morning! Most of you are aware that I eat 70ml over the hour and every 3 hours. This is done to treat me like a normal baby and also so my sugars do not tank.
So going without eating from 10pm to 330am was a big deal! How did I fare? Well I woke up crying for food and I was awake for hours after just playing. Meaning I can keep my sugars! To make up for the missed meal, I was stuffed with 80ml for my feeds the rest of the day. I tolerated the increased volume, and had no pukes or spit ups.

I feel yucky!

I spent the entire day over my Grandma's shoulder

This past Friday I felt like hell! Since I've been home I have developed a cough, a throaty staticy sound accompanied with a motor like sound and tons of mucous! On friday I was so mucousy I almost choked myself to death on multiple occasions. The nurse came by and listened to my lungs, she said the sound is mostly in my nasal area but I did have some fluid in my right lung. The hope was that I would work it out on my own. Mommy was so scared that she said she'd take me to the hospital if I didn't sound better when Dad came home. I did and I got to avoid the hospital. The nurse came by monday and said that my lungs sounded better and that it was good I can clear it out on my own.

Which brings us to Tuesday! I was being a little fussy through my feedings over the last few days and this morning I was screaming and spitting up. Mom was concerned and asked Dad why I am so broken. Dad said that nothing is wrong with me, and I am just being a baby. After dad left for work I threw up my whole meal! Mom said that I must be constipated, so back on lactalose I go! Just before we left to go to my first pediatric appointment my mom remembered a little trick from a friend... Use the thermometer to stick up my bum to help me loosen what is stuck. So after 5 minutes of poking and probing I let a bunch of pooh go to my mom and grandma's excitement and astonishment. I am still backed up but at least a fare bit came out. Mommy gave me some Tylenol to try to ease my discomfort or put me to sleep... Didn't work. So off to my pediatric appointment!

My appointment was at the pediatric outpatient clinic at Grand River Hospital. My appointments will continue to be there as I need blood work every week. The blood tests I need are only done in hospitals! My mom and grandma packed my "duffle bag" and off we went!

At the hospital we ran into some old friends. Turns out that our McMaster neighbour's have the same pediatrician as me! We got reacquainted with Logan's parents, who happen to live a few streets away from us! We had to wait for the pediatrician as she was running a bit behind as she was also on call. So 3.5 hours later I had my vitals and blood results:
My lungs are clear and I am nasally, so the Dr. Has suggested Hydrosense, apparently a box with a dolphin on it.
Weight: 3.85 kg (8lbs 7oz)
Height: 22 inches
Ph: 7.278
Lac: 6.3
The blood nurse used a tourniquet on me which was against the doctor's orders, and as many of you know now, lactate has to be taken by "free-flowing blood" or else the result is inaccurately elevated. So in theory my actual lac level would be 3-4.

Mom has emailed Amy and Dr. Kozenko about my results and both are happy with my weight gain, Amy has since increased my feeds to 80ml. We just need to work out my poop first...

Jailbreak!

FREEDOM...

Tuesday after my Broviac tube was removed and I was swiftly moving through the recovery process, the doctor's came by to see how I was doing.  After some discussion on my progress, my mom inquired about the plans for discharge.  "What do you think about tomorrow?" the doctor asked.  Mom was astounded, relieved, happy, frightened, and all around overwhelmed at the prospect!  Home, I mean, a real home!  Not just 4 walls, and certainly no hospital curtains!  Could it be?

Yes it was!  The orders were written for a 9am discharge on Wednesday morning.  Now since there was little notice, it was crunch time to make sure we had everything together and ready to go.   Mom called up dad and told him the great news.  Dad had already made arrangements to come down the day of my release and finally it had come.  Mom slept at my hospital side one last time and we waited anxiously till morning.

Morning came and dad arrived at 7:30am! We started packing up all the clothes, stuffed animals, papers, and baby supplies we had amassed during our stay and proceeded to send them down to the car.  Meanwhile we were given the prescriptions for all my regular meds and were told to drop it off at the pharmacy downstairs as soon as the openned.  As nine o'clock ticked past, mom walked down to put in the order.  The pharmacy was SHOCKED... the prescriptions were written for one month doses at a time.  "This may take some time, check back with us around noon", said the pharmacist. 

Back in the room, we were getting ready to start the 10am feed.   Mom and dad opted to use my feed pump one more time so they could both keep their hands busy elsewhere.  Doctors came in to visit and give us more information on the discharge arrangements.  Dr. Kozenko came in to give us the emergency letter should we need to skip the triage line at Grand River or St. Mary's hospitals.  Amy provided us with the new formula to mix up using regular old Similac advance from the store.  Our nurse provided us with a care package of syringes and buckets to make my med and feed planning easier at home.

All the pieces were falling into place.  After my ten o'clock feed was done, dad and I decided to go for a walk to see and say goodbye to some old friends around the ward and around the hospital.  We stopped to see all the nurses we knew which was great.  They were all so impressed that I was going to go home!  We then made the grand trek across the hospital to see Dr. Kozenko in her office.  As always she was sooo happy to see me alive, awake, and well.  She spoke to dad for awhile about what to do at home.  Most important was to make sure I get treated like a normal little baby boy.  As we were about to leave, dad asked her if she wanted to hold me.  She hadn't done so in all the time we were here at the hospital.  She said of course, and for the first time, the hands that started my miraculous recovery, were able to feel and hold me tight.  She returned me to dad and we said our goodbyes.  Dad gave her a big hug and thanked he again for everything.  Back to the room we went. 

It was nearing noon and we went to check on the pharmacist.  She had completed nearly the whole order so it wouldn't be long now until we were making out great escape!  We finished piecing all our belongings together and we waited for the day's feed to come up from the kitchen.  While we waited we received some interesting news via mom's blackberry.

As it happens, our old friend Emerson, had to come to the hospital for a follow up with Dr. Potter.  Emerson stopped in to see me before his appointment and oh what a reunion it was.  The Rutledge family and the Reimer family once again in the same hospital room.  And this time we were able to leave it together!  We gathered everything up and walked out of the ward.  The 100 foot walk to the door seemed the longest distance I had ever traveled as it wasn't just any walk off the ward.  It was a walk away from a journey.  A journey, as long as any I will probably ever experience.   A journey with such ups and downs that no other will ever compare.  A journey filled with incredible moments both light and dark.  A journey we took together.

As we piled into the car, the reality of the day began to settle in.  We were on our way home.  Mom drove out of the parking garage and dad sat with me in the back.  One life being left behind, another just beginning.  All my love to everyone who has prayed, hoped, and wished for this day. 

On our way out we stopped for nurse cuddles!

Broviac begone!

Well, I don't know how I survived the night with my belly so empty, but somehow I did!

Jackie came by this morning to be with my mom during my surgery. As you guys know it's a big deal for me when I need to be off my feeds. My sugars may tank and bang ACIDODIC boy!

I was wheeled down the hall to the waiting area where my surgery was to be conducted. We waited there for what seemed to be years. We waited and waited and waited. The reception ladies thought I was soooo cute! They said I must receive a cute bunny for my enduring strength! Booya I scored a stuffie. I call him "Broviac Bunny".






After what seemed like more years my name was finally called and the anesthesiologist came out to get me. Wow! She was the same lady who was with the doctor who did my PEGasaurous. Mommy said she took great care of me last time, so she knew I would be in good hands. Mommy kissed me and said she wouldn't be too far away and would be back before I opened my eyes.

Jackie and Mommy waited in the Ronald McDonald Family room across the hall. We had been to that room so many times for breakfast and to do our laundry and we never knew there were surgeries being conducted across the hall! If we did, breakfasted may not have felt the same.

The anesthesiologist told Jackie and Mommy that I was in recovery. She also informed us that she tried to put an IV in me for my dextrose solution, but my veins kept collapsing, so I went through the entire procedure without an IV . The anesthesiologist hoped that everything would be okay with me and I wouldn't need any more surgeries as my veins are extremely difficult to work with! Yikes!

Mommy was a little worried as I had never been off my sugar for this long before, but right now we couldn't do anything about it. We just had to put our energy into waking me up! 30 minutes went by and I still wasn't awake. The nurse who was monitoring me tried to stay calm but mommy could tell she was getting a little concerned. The nurse, mommy and Jackie tried talking to me, tickling me, pet me, and shook my arms. Finally I stirred! I had to make it a bit difficult for mommy I guess!

I was wheeled back to my room, and food was started about 30 minutes later. My sugars had stayed constant. Yay!

The morning after Broviac begone!

I was groggy for most of the day because of the anesthesia, so I slept most of the day. Hello night! Time to play!

another npo

my broviac is supposed to come out tomorrow, which means i will be in the operating room at 1030am. i will be sedated again and on iv fluids starting at 3am tonight. jackie is going to spend some time with my mommy tomorrow so she doesnt go crazy waiting for me. please wish me luck tomorrow!

My tummy is so empty! Mommy's trying to calm me down

The nurses finally got smart and kept the blood pressure cuff on my bed! I am the only one small enough to use it in the ward!

My LOA

Hi all!

Yes, as you have no doubt guessed, I'm writing this to you from the comfort and safety of my bassinet snuggled between my mommy and daddy in their very own bed. We're home on a LOA pass!!!

Here's how it all went down.

On Thursday morning mommy was having a really rough week and asked daddy if he could take over. Dad was at work but was able to shuffle a few things around and relieve mom for some much needed re-charge time. Dad came down at lunch time and brought along some work to keep caught up.

Once dad was settled in he had an idea. He started to plant the notion in the team's minds that maybe we should try some time at home! The pediatric doctor covering the floor this week thought it was a great idea! They discussed the issues with my meds, feeding, and broviac tube and ultimately decided it should be no problem!

Thursday night came and grandpa Reimer was able to stay for the night to let dad go home and back to the office the next morning to grab some more work to do over the weekend. While dad was working out the details, mom was at home basking in the recently cleaned house. As it happens, Grandma Reimer has snuck over to our house and cleaned like the dickens! Thank you so much Grandma and Grandpa Reimer, you've certainly made this week a lot smoother!

Friday came and went with yet more details and discussion about my escape. Then Saturday morning! My LOA (leave of absence) was approved! My meds for 36 hours arrived in brown paper bag and a big bottle of feed was promptly delivered to our room. Mommy drove down first thing in the morning with the car seat and all the pieces we're in place. We said our goodbyes to the nurses and off we went.

The car ride home put me to sleep but it was such a nice feeling to be outside, the sun on my little face, the wind passing through an open window to my left, my dad watching over me. It was a magical moment. We drove to the Mcdonalds on the 401 where mom and dad stopped for breakfast. Mom had pancakes, dad had a McGriddle and I had some formula by the syringe! My first McDonalds trip!

We got home shortly after 10 am and I finished the rest of my 10am feeding and was sitting comfy in my new swing that my Grandma Philp spoiled me with. We also sat on the couch in the loft and watched kitchen nightmares on rogers on demand - oh that Gordon Ramsy, what a card.

Now the only catch to feeding me is that the hospital policies prevent equipment, like my pump, from leaving the hospital. No one else will be using it in my absence, but policy is policy. Now community access has pumps, but they can't provide them to you until you're officially discharged. So..... How do I eat you ask? Well my loving and patient parents have to push 65 mls of formula through my tube slowly over an hour. EVERY 3 HOURS! Not fun, but they do it because they care :)

While home we went for a walk to the marble slab creamery. Mom tried on the baby bjorn carrier that Grandma Reimer found for us and it worked great! We had a great walk and returned home to get more food going. As we sat and ate lunch, we watched poker on TV - somehow I think I'm going to like that game!


Later for dinner we all sat upstairs watching the movie Role Models. Mom and dad enjoyed a home cooked meal while daddy pushed gently on my syringes. What a nice time we had!

As evening approached, mom and dad worked out who would take which overnight feed. It's 4:40am and dad is half asleep but still pushing food in me :)

We go back to Mac around noon on Sunday...Dr. Kozenko is off call and Dr. Potter is back on call on Monday.  We'll get an update on the goals hopefully on Monday.

Thank you all again for your love and prayers! And a special thank you also to Scott Nosal, dad's boss, without him, this weekend would not have been possible!

"She blinded me with Science"

My bloodwork on Wednesday:
Lactate: 6.7
Glucose: 4.8
pH: 7.47

Dr. Kozenko is stopping my daily blood work as there seems to be no correlation with anything.  She says that my lactate will just be what it is, and that the glucose and pH levels are what matters most as they can kill if they get too low.  Usually a high lactate means a low pH (acidic) however my pH has been consistently normal even though my lactate has fluctuated from 2 to10 in the last few weeks in Ward C.

Dr. Tarnopolsky came by today and told us that he has "good news and bad news". Please don't use the word bad news in a hospital!  The good news is that my serf test came back negative. This we were told is a very good thing as this has a 100% result in death!  The bad news is that we still don't know what I have.  His clinic will run testing on the parts of the mitochondria that they can do locally.  Starting 3 weeks from now, new technology is emerging that allows for studies to be conducted on the remaining 80% of the mitochondria that was not able to be tested before.  Dr. Tarnopolsky doesn't think I'll come back with anything that they already have a name for, so it is good that this new technology has come for me.

The Puzzle goes on

As you can see the pokes didn't work in my head today so I got the arm treatment

My lactate is still up. The last blood work was 8.2. The Dr.s have no idea why the numbers are fluctuating when they haven't changed anything. I am so gaseous I hate feeding so I scream through the whole "meal". Venting was working but now it is not making me a happy camper, however its been helping in the puking department.
I am still stuck at 3.4kg, so my dietitian has upped my overnight feeds as they don't want to see me fall further behind. I am just barely on this infant growth cart at about 3 - 5%.

Still no tests have confirmed any diagnosis, however Dr. Kozenko believes the closest thing I may have is pyruvate carboxylase, but she says that she has no idea as nothing else other than my acidosis has been typical of it. However here is the definition.... Does it sound like me?  "PC deficiency results in malfunction of the citric acid cycle and of gluconeogenesis thereby depriving the body of energy. The citric acid cycle derives energy from carbohydrates, while gluconeogenesis produces carbohydrate fuel for the body when carbohydrate intake is low". If any one wants to know what gluconeogensis is, it's a metabolic pathway that results in the generation of glucose from non-carbohydrate carbon substrates such as lactate, glycerol, and glucogenic amino acids. Also the primary lab Dr. Tarnopolsky had done with my muscle showed that I was 8 percent efficient in complex 4 mitochondria. This I am informed, is not good at all, this kind of result is of the fatal disorders kind. Both tests are off to be analyzed for some answers, we wait.

Dr. Kozenko told my mommy that she has also changed some procedures in their metabolic clinic because of me. I may save some lives yet!

The missing weekend update

Hi all!

Ethan here.  I can't believe I forgot to post on the weekend.  After I promised to do so on Friday. 

As many of you have come to know, not much change happens on the weekends.  In general, it's simply a time to relax and progress while maintaining the status quo.  This weekend was no different... until my dad got in there and messed with things again.

The plan was for me to eat at a a different rate for the weekend.  I was doing 55ml in one hour and fasting for two all day.  Then, starting at midnight I was going to do 30 ml per hour every hour to make up for an overall shortfall of calories over a 24 hour period. 

For those of you who have now grabbed out your abacus to follow along, here's my calculation:

I should be getting 65ml every three hours.

65 x 8 feeds = 520ml per day

I was getting 55 from 10am to midnight (5 feeds) and 30ml every hour from midnight to 8am then a two hour fast.

55 x 5 feeds = 275
30 x 8 = 240
275 + 240 = 515 <--- close enough to 520 :)

So here's where the wheels fall off the wagon.  I was having "trouble" tolerating 65mls in one hour.  But in between I was given time to digest and clear my tummy.  So in a three hour span I was getting 65ml and moving it through the old digestion track.  Now over night I will get 90ml in a three hour span.  90ml > 65ml, therefore my forecast is over-full tummy with a chance of puke.... I hate being right.

Through the night I puked at 2am and 7am.  In the morning, Dr. Kozenko called to talk to daddy and they discussed my tolerance and how to proceed.  Dad pushed to resume a more normal feed schedule but couldn't convince everyone that this was the right course of action.  We did modify things so I was only on 25ml per hour overnight which I tolerated much better. 

Dad also made a point to vent me regularly, it's like burping but without all the satisfying sounds.  This worked to keep me happy and puke free during the day. 

ahhh relief!

On Sunday Grandpa came to visit and brought cousins Jim and Peggy from Calgary to see me!  I slept for most of the visit but it was nice to see some new faces.  They also dropped off some sweet new toys for me to continue to show off to the other inmates... i mean patients.

Well back to the grind.  Everyone keep thinking positive thoughts of home!

"Are you surprised at my tears Mr. Lebowski?"

So I've been crying like a beast.  All day, all night, when I'm eating, when I'm fasting.  While I'm sitting, while I'm lying down, while I'm going for walks.  Doesn't much matter to me, I'm just gonna cry.  The doctors aren't sure why I'm so miserable but they have alot of theories.  Some think I might be lactose intolerant, others say I might be suffering from acid reflux.  Some say I'm eating too much, others say the food is wrong.  A recent X-ray I got today showed a buildup of "Diaper muffins" a.k.a. poop, in my bowels and digestive track.  That could explain some things, or it could simply create a whole new batch of questions. 

Since the answers are no forthcoming, we continue to wait.  I am now on regular head pokes for blood since apparently that produces the most accurate Lactate results.  since starting the head pokes my Lactates are 7 and up, the most recent was 9.6!  That's almost as bad as my days in the Critical care unit.  The oddity is that my PH level is staying normal, in fact it's actually very good! 

So medication-wise I'm now on reflux medication, tylenol for pain, stool softeners, oval for gas, my regular mitochondrial vitamin cocktail, copper, and levo-carnitine.  Seems like quite the chemistry experiment going on in my tummy. 

The nurses have been trying to vent my tummy to remove some gas also.  This is done by using a large syringe with the plunger taken out.  The syringe is attached to my tummy tube and the contents are allowed to back up into the open syringe.  Any gas is then free to escape as bubbles and the good stuff stays in the syringe and can be re-inserted into the tummy!   Sweet deal :)

Daddy came to stay with me again so mommy can have a break and go sleep in a real bed for the weekend.  Just in time for daddy's arrival, I had started my tylenol and so I finally stopped crying.  Hopefully the weekend will be smooth sailing.  Sadly, discharge still appears to be a distant dream.

I'll keep you all posted over the weekend!

results from my 6pm head poke

glucose: 3.7

ph: 7.4

lactate: 7

amy and dr. kozenko were going to change the composition of my feeds, however their written orders didn't make sense to anyone to make my new formula. so i am still on my previous formula tonight.

what does this mean? we'll find out in the morning when my doctors come back.

I am sorry, you said what? My head?

Monday Emerson got to go home and was discharged from the hospital! He has been seizure free for the last week! We are happy that he got to finally go home! However we are saddened that we have lost some really great roommates!

I also started on 2 meds for my spit ups and puking episodes. The Dr.s believe that I may have reflux and given my situation they need to do something about it.

Monday it was found that the ward glucometers that have been checking my sugars are totally wrong. My sugars are going to the lab now, which means more blood from my foot. They are pretty low. 2.8, 3.1, 3.2, 3.4. The last one was 2.2. Although they are attributing that to the sample having sat for 2 hours before it was analyzed. They did it again this time from a venous sample! It was 3 and my lactate was 9. Not good. I puked and spit up with every feed over the course of the night. Another venous blood test was ordered this morning while I was feeding. My glucose was 3.7. However they still used a tourniquet on me, which elevates the lactate, which mommy had mentioned both times the sample was taken. So the dr has ordered my head to be poked at 6pm tonight as it is the most accurate way to get the lactate level. Free flowing blood only.

What goes in... must come out

Hi All,

Ethan here again.  The weekend was for once, smooth!  The doctor's decided to use the weekend as an opportunity to re-introduce food into my diet.  Having struggled for a few days on no food at all, and only the D10 dripping in my veins to keep me company, I was not a happy camper!  As a result of my crying, inability to sleep, and general grumpiness, my mom  and dad made the bedside trade Friday night.

Friday night we started to add the feeds.  At first we went 5 ml for one hour every hour.  The food moved so slowly my dad thought it was turned off and called for a nurse to make sure it was still running.  4 hours later I was tolerating just fine and they went to 10 mls per hour.  4 hours later to 15, and then by morning, 20.  The deal was once I was tolerating 20 ml an hour for 6 hours I could go back to feeding every 3 hours! 

All was progressing well and I had graduated all the way up to 3 hour intervals.  I was tolerating it just fine and found myself content!  Oh the feeling of food in my tummy!  How I do fondly remember thee.  I can only imagine the wonders of future meals that I may have.  Each meal, although familiar, still seems more enjoyable than the last.  It's as if my tummy was waiting patiently through the toils of IV fluids and has since pulled away the rug of hunger and .... .... ugh... PUKE!

Ok, so in the midst of my new feeding bliss I puked.  Now mind you, not so much to be too concerned about, but there it was.  I had painted my sleeper and the surrounding bed area to my immediate left a nice bright yellow colour.

Once dad had finished changing my clothes, we sat together and played on the computer.  We checked my sugars following the puke but there was nothing negative to report.  everything was still in the normal range and time was ticking on towards my next feed. 

For my second "normal" feed, daddy and I sat in the chair and watched Harry Potter and the Order of the Phoenix.  Not a bad film, although having not seen the previous movies I was a bit lost.  Anyway, I was enjoying the film and absorbing away when... ... ... PUKE.

So this one was about the same size as the first, same colour, but now I was upright! PROJECTILE!  --  Daddy looked down at me to survey the damage.  I had turned another sleeper to the colour of banana popsicles.  Dad changed me, notified the nurse of my transgression and we returned to our movie.  Miraculously, despite my sitting in Dad's lap, he walked away unscathed by the whole ordeal.

The evening came and went and we proceeded to Sunday.  My feeds continued on schedule and now it was time to talk about my IV.  They had kept it running at 3 mls to make sure it stayed open and active.  Now that my feeds are ok, dad asked if I could become wireless again.  The nurse spoke to the team and from on high the orders were written, and so written, it was done, my broviac tube was capped and between feeds I was able to escape. 


By now mom had returned to the hospital and together with daddy we went for a walk!  With my killer sunglasses on we left the building and stepped into the light.  We took a few cool shots in the sun of my and me with our shades and then promptly went back inside.  My skin isn't ready for sun... or SPF 30, all in good time.  

Mom and dad played some cards while I napped until 6:00 pm rolled around and dad had to make tracks back to KW.  Mom was super sad to see him go and so was I.  We know he was to work to keep our house, OUR house, but we miss him alot.

Surgery/MRI

Hello everyone,

My apologies for not updating sooner, I was pretty groggy from my surgery and really angry that my tummy is empty and gurgling constantly.

The day of my surgery I was put on D10 solution through my broviac line.  It was a good thing that the dr.s left this open so I wouldn't have to be poked again. My sugars were being monitored every hour, as I do not show symptoms of low blood sugar when indeed they are low... I am tricky that way.  I started off the day getting glucoses in the 5s, then 6s then 7s.  Mommy was getting scared that I was going to go the opposite way of too low.... and going too high.  She was assured that even 7 was considered normal. 

Around 8:30am, Mamet, my resident told mommy that she was going to try again for the MRI.  Dr. Kozenko came by before my surgery and told us that she had talked to radiology and tried to make them understand the severity of my case.  She told them about my blood gases and sugar levels.  They need to do the MRI to see if there was any brain damage due to my low P.H level.  She explained to mommy that normal PH level is 7.35 and at my "dark day" I was at 7.03 .  She explained that once it goes to 6.80 the cells shut down and you die.  So I was REALLY acidic and on my way.  However I made the miraculous jump back up to normal in the morning. The Doctors are pushing for the MRI to see if I sustained any brain damage due to the low PH level.
As I was being wheeled to surgery for my Gtube, mommy was told that I will be getting the MRI right after my surgery, so I will still be sedated. Mommy and I were grateful that all the right people came together and made this happen for us SOMEHOW! This NEVER happens! :)

The surgery and the MRI procedure went without hiccups and I was in the recovery room by 2:30pm.  Mommy was told that my MRI results would be read that day and sent to my Doctor the next day, as I was so ill, I was considered a priority reading.

Mommy came to meet me in the recovery room

I was groggy for the rest of the day, so I slept, which meant I was awake the whole night, and kept mommy awake too, as I was starting to feel my tummy grumble from being empty for so long.  I was up the entire day today too, and I was NOT a happy camper!  My tummy is soooo empty and mommy keeps telling me that she can hear it gurgle every 5 minutes! 

Dr. Kozenko and Amy came to see my mommy and me this afternoon to share the MRI results and the plan to reintroduce me to my feeds.
The MRI did not show any damages or abnormalities!  However it did show a high lactic level in the cells.  The MRI confirmed that I do have a metabolic issue, but my brain structure is normal!

The plan for my feeds is at 1:00 I was put on 5mls/hr of pedialite which I am told is like gatorade just yuckier.  At 7pm I started 5mls/hr of my formula and every 4 hours my feed volume will be increased by 5mls.  The goal is to have me back on bolus feeds every 3 hours on Sunday.  Which will bring me up to where I was before my surgery.  My meds were also reintroduced at 4:00pm.... I am tolerating my meds and feeds very well so far.  I am still really angry about my grumbling tummy and I am making sure that everyone knows it...

Mommy has called Daddy to come this weekend so she can go home and get some sleep and some quality time at the hairdressers.  Maybe if she's lucky I will post a picture of her when she comes back to me on Sunday!

Finally awake after my anaesthesia

Introducing me!

NPO

My peg tube surgery has been booked for 11am tomorrow morning. I will be going NPO at 3am. This means I will be off my feeds and meds for awhile. The nurses will be checking my sugar levels every hour.

The surgery doctor did not agree to the MRI. He does not want me to be under sedation any longer than absolutely necessary.

I am a little scared but mommy told me I am strong and brave and I will get through this.

Kate, the OT came by to play with me a bit to take my mind of off my impending surgery!

Update: This is me this morning as I wait....... HUNGRY!!!

Daddy's gone!

So lots and little has happened over the past few days.

1. Daddy had to leave us and go back to work. It made my mommy and me sad, but we understand that it had to be done, but we misses him.

2. Dr. Kozenko has taken over as my metabolic doctor on call. Dr. Potter finished his on call duties over the weekend.

3. My sugars have been consistent (over 4 and during the day 5). Mommy still has to continuously train my nurses on how to get a proper reading.

4. I am doing great with my feeds, however I think I am feeling this thing called "hunger" and its making me unhappy. Mommy mentioned to up the calories in the formula and not give me more volume because she knew I'd puke because I had an extra 6 mls on top of my meds.. So of course the pediatrician wrote orders to up my feed volume by 5 mls to 65 mls... And I puked.. So now I am back down to my feed volume of 60mls.

5. My weight is now 3.25kg.... Which is 7 lbs! Amy was happy, however she wants to see more weight gain over the next few days.

6. My surgery is being booked for a "peg tube". This means my feed/med tube will be attached to my belly and not my face.
- I won't pull the NG tube out of my nose.. halting my ability to feed.. Which causes my sugars to tank and my acid to go up.. While we will need to rush to the ER to get another NG tube.. With the peg tube mommy and daddy can replace if it ever pops out
- its a bigger circumference tube, so my meds shouldn't clog it... Which happens frequently with the NG tube. Like last night my mommy clogged it and I needed a new one stuffed in my nose.
Mommy and I are a bit scared for surgery as I will need an anesthesiologist and I will be off of feeds for a few days.. We have been reassured by my dietitian Amy that my sugars will hold up.

7. Dr. Kozenko also mentioned doing an MRI if we go in for surgery for the peg tube. Mommy and Daddy agreed to this, however only if it's done at the same time, so I won't have to be put under twice. We are told by the doctors that for both at the same time would be a long shot.... We are hoping that it works out for both slots and we may be able to get some kind of prognosis with the MRI.

8. We love Jen! Jen is one of Emerson's mom's friends. She surprised us with a scrapbook of my hospital stay! She printed off my journal/photos/guestbook from Caring Bridge and facebook and put together an awesome scrapbook! We are eternally grateful for the love and support this has shown us!

9. Please also send your prayers, love and support to my buddy Emerson. He has some tests left to do and so far he is still without answers.

10. Deb, the team leader on Ward C is REALLY into scrapbooking. She made Emer and I cutout boy shapes in the form of us! We have put these outside our door in the hallway leading into our room. Since we got ours, little cardboard children have started to sprout everywhere. Unfortunately only to the ones who have been or will be in the ward for a long time. *sigh*

As you can see, my little person has no hair... there isn't any "white blonde" paper