I'm a real boy!

Hi all!

Sorry I haven't been keeping up with my journal posts, it's been super busy here at Mac! Yesterday we started my final feeding plan of every three hours. That means I feed for an hour and then fast for two. This is the feed schedule of most babies! All my doctors are very happy to see me on this plan. Most importantly my glucose levels have been the best they've been in a long time! I had a 5.7 today :) All checks have been over 4 as well.

Since my feeding and sugars have been so good, I've been able to go for long walks around the hospital! Yesterday I went to visit my friends in the genetics labs. They live in a distant drab looking part of the hospital that I was sent to on the first day I was here. I got to see Dr. Kozenko and Dr. Potter. Also while I was there I saw Christina who was the lady who called my mom and told us to come to Mac in the first place. Everyone was sooo excited to see me out of my room! Dr. Kozenko is still calling me the miracle baby as I continue to marvel and confuse the experts. We had a great visit in genetics and most importantly we stepped outside just for a moment and had a breath of fresh air.

Once back in my room, my uncle Brian and Grandpa Philp stopped in for a visit. Now that my cords are to a minimum, both of them got to hold me for the first time! I was very well behaved and really enjoyed my time with them. I also got a sweet Pooh blanket and card from Bri and a Pooh bear from Leslie.






Kate, my OT came to see me and assess my muscle tone, head control, and talk a bit about my plan. She said she would like to try to do the bottle test next week again since I don't make sense to her. I hear there's a lot of that going around. So far my tone and head control are pretty good.

Meghan our regular resident came to tell us that the plan is for me to continue my feeding schedule and go for one last full blood gases test this afternoon. Once that is normal I will go down to only periodic glucose checks. If I behave over the weekend, I may be ready next week to get discharged! However I still haven't gained any weight, I have been sitting at 3.15 for the last week. Maybe my dietitian, Amy will be by today... I have been honoured with a few of Emerson's outfits as I am the "younger brother". It's been a pretty sweet deal!

My plan for home will continue to be regular glucose checks. I'll have a nurse come by to prep and administer my unique cocktail of vitamins. I'll be coming back to Mac for checkups and to visit Kate to work on my mouth skills. My pump will come with me and I'll keep my feeding tube but I'll be able to go for walks with mom and have more regular visits and a more normal home life.

Will keep you all posted on the plan as it continues to progress.

Thanks again for everyone's thoughts and prayers!

Yummy Chalky Barium

Yesterday I had to go in for the"swallow test". They sat me in a chair that daddy said looked like drop zone at canada's wonderland. They had some troubles strapping me in as I am a little man. Finally the contraption was made so I could sit without falling out of the chair. Mommy was real proud of me, as I was content and calm through the whole thing. She had to put on this massive heavy "gown" to protect her from the xray machine. I got my own piece of protection as well. Mommy was instructed to try different nipple flows and thin and thick formula. They had mixed the formula with barium so they could follow the liquid as it entered me.

Kate, the OT assessed me as I swallowed. She deemed my swallow as "inefficient". The liquid would pool in the pocket above the breathing and swallow tubes, however I would usually get the liquid out before it would enter the lung tube, but it would take me a couple of swallows to push it out. At one point a small bit of the thin formula went to my lungs. Kate will talk to my pediatric Doctor, Dr. Oravec, to discuss what my plan should be.

Daddy took some pictures of the whole ordeal, however he used Emerson's mom's camera and is a little tech newb.

Mommy's being outfitted in her giant robe, which weighed more than her!

Kate and Mommy trying to figure out how to affix me in this chair! I'm too tiny!

Hey it's me!

Mommy trying to feed me... hmmm don't think it's working!

Aspirated so I am done!

Yum Yum Barium!

Amy, my dietician added a few things to my formula yesterday. So we will see how this one goes, hopefully I will start putting on weight, as I have been stuck at 3.15kg for a while now. My parents are contemplating feeding me quarters or using another scale!

Within dark times there is always light.. My central line was heparinized last night so now I can leave my hospital room between feeds! This is good for 24-48 hours, then my line need will be revisited by my doctors. My parents took me for my first walk, which I promptly fell asleep for... Oops!






Dr. Tarnopulski ordered some blood to be collected from me for the Copper test. It had to be done intravenously rather than my usual capillary. Which means I was stabbed in my hand. I knew I had to upstage mommy's blood getting, so I was happy through the whole thing!

Enter Felipe

I have been an angry baby for the last few days, mommy and daddy have been trying everything to get me to calm down. Change me, play with me, leave me alone, soother, check my temp. They started talking about my feeds, wondering if maybe I wasn't getting enough feeds. Yesterday's weigh in was a fluke I did not gain my weight! That 0.05kg must have been some extra poo or water weight, since I am now back down to 3.15kg. I haven't gained weight this week, so they checked with nurse Heather to see if they could up my feed from 35mls to 40 each feed. She checked with the resident, Felipe who said "Yeah sure". So my feed was increased this morning. Mommy had an uneasy feeling the whole day as she was now worried that she may blow up my tummy from too much fluid. None of my regular Dr.s were here for the whole weekend and she was scared that the decision from Felipe may have been too hasty.

I went through the day on more food and things were pretty uneventful with my insides. Katarina, Jackie, Bob and the boys came to visit. They brought us all a big care package full of books, movies, and sweets. Dad has stuffed himself on peanut butter squares!

Dinner time rolled around and we were invited to join the Rutledge family for Chinese food! Meanwhile my insides we're getting ready to send up red flares. I cried the blues for nearly an hour before Nurse heather came in to check my sugar and it was down to 3.4. As per the protocol we did another check 15 mins later and it was 2.7!!! Now this was the lowest read in awhile but mom and dad did their best to keep their cool. We checked again after my feeds and I was back up over 4. Phew!

Mommy and Daddy talked to nurse Heather regarding my crying. She said it was likely due to my low blood sugar level.. This sent up worries in my parents, they are now wondering if when I cry I have low blood sugar. Around 10:30pm I was still crying my eyes out and my parents were still worried about my feeding level. Mommy was particularly upset because unlike a bottle/breast fed baby who stops eating when full and continues eating when hungry, I cannot make that decision as I am on a feed pump and have my feed numbers mathematically figured out for me. What if my body is trying to grow but I am not getting enough food? I am on the same amount the Drs figured out 2 weeks ago.

Mommy and Daddy were freaking so the nurse had the resident, Felipe come talk to us about our concerns.... He said that there is a mathematical formula to figure out what people's fluid intake for the day should be based on the person's weight. He said for Ethan's weight he should be at 70-80mls an hour. We told him that Ethan is at 17.5 plus meds. So around 25 mls. This is a huge problem! Felipe said he would check over the notes to see if metabolics left anything about how they came to the rate. He came back and said that there's nothing really written in there but the team would talk about it in the morning. However, metabolics isn't in until Tuesday. AHhhhhhhhhhhh! On friday, my metabolics doctor, Dr. Potter told us that he was on call the whole weekend and that if we need anything to get someone to call him. We told Felipe this and he was very reluctant to make the call. My daddy asked if there is an issue calling people on call as this wasn't the first time we ran into this issue. He asked Felipe wouldn't it be better to call Dr. Potter and get the answers right then rather than waiting until Tuesday, as it was only 10:30? Felipe agreed and called the Doctor. Dr. Potter asked to speak with Daddy so that we could ask all the questions we had. Turns out Felipe's math skills are bad and I am actually on the high end of fluids for my weight. Dr. Potter also said that crying is the opposite of knowing if I had dangerously low blood sugar and that we would know for sure just by looking at me. My body would start to shake uncontrollably, I would go to sleep and you wouldn't be able to wake me and I would break out in cold sweats. Dr. Potter reassured that he is not concerned about my sugar levels as they have always gone back up so far. He also said that he doesn't have too much confidence in the glucometer machine they use here as its just a hand held machine. Apparently it doesn't have good accuracy under 4. It is the most accurate between 4-5. Which are the "normal" levels. He told daddy that whenever the machine reads a "low level" that we can request for the glucose to be checked at the lab instead. This requires a tube of blood rather than a drop, so we think that's why they don't order it every time. Daddy thanked Dr. Potter and mommy and daddy were able to sleep for part of the night.

I think I may be Superman!

4 weeks...

hi all,

ethan here again, using the blackberry again while we wait for a new wifi option.

started the day off right today with yet another scary low blood sugar!  i was down to 2.7 according to the lab results.  this sparked a little worry among the lab guys and i was required to endure a second bloodletting today.  as usual the extra heel poke didn't phase me.

nurse heather was on today but it appears she doesn't move as fast as the weekday nurses.  poor emerson had a seizure at 7:45 and she was standing outside the room.  she was talking to another nurse and didn't see the assistance light flashing over our room. Dad ran out to get them and made sure Emerson was ok. That was scary!

We got our replacement morning meds around 10. The vitamin C didn't make it until almost 2! Mom and dad are now in charge of mixing and administering my feeds and meds! Quite the responsibility.

Spent most of the day hungry and grumpy and crying more than my fair share. To make it better, mom and dad both played with me lots! Dad played rocket ship with me and mommy sang I'm a little tea pot :). I was very happy about the attention but peed on mommy anyway.

As a special gesture, dad went out to get a cake made for me and Emerson that reads "Happy one month birthday Ethan and Emerson" on it. I know all the adults can't wait to dig in. Maybe if my sugars drop again I'll get some icing :)

Well I'm hoping for a good night tonight as I don't think my mom and dad can take much more of this.

Love to you all!

P.S I finally got my bath! The nurse brought me a shallow bowl so I could sit my bum in it and get a nice wash! Oh I feel so clean!

Mayday! Mayday! Hospital Internet is down!

The hospital network is down for the weekend, blackberry to the rescue!

Thursday:
 took some formula from the bottle at my 6pm feed, 25 mls. My parents stopped me as they didn't want to push me, however i could keep going because i loves it! The rest of my feed went through by pump.
8pm feeding and meds debaucle begins! The staff changeover time is at 7:30 and the nurses have to get vitals on each of their 4 patients before starting to take care of things like my foods and meds. It was 8:20 before my nurse, Donna got to my room with my formula and meds. She squirted my meds in the bag and tried to start the pump. Now since the Drs have me on bolis feeds the amount of formula that gets mixed with my meds is significantly less, the feed bag got clogged! I was screaming my head off as I was hungry! Finally she grabbed more formula and got that going at 9pm. Since my meds were wasted, they had to use my morning meds as the Pharmacy closes at 9pm and reopens at 8am. It was going to be close as my meds were scheduled again for 8am. They dumped my meds in more formula and had to re calculate my times, amounts and plan. There were no dr.s on staff, so I was lucky that my daddy is good with numbers and came up with a plan for me, that only had an extra 14mls going in to me. My nurse was really flustered, and didn't do my vitals, weight or bath. She remembered to do a glucose check on me and instead of using gauze to clot my wound she used an alcohol wipe instead! My level was 3.7, which is under my threshold so I need to be poked again, probably because I haven't eaten in 2.5 hours ... 30 minutes later I was down to 3.4, my sugar was plummeting my parents started freaking out. Nurse Donna tried paging Dr. Kozenko as Dr Potter was not on call until midnight. My parents ordered another sugar test 30 minutes later, sugar level was 4.2. Since everything was out of whack, mommy and daddy stayed by my side the whole night to make sure that the plan was followed. Daddy slept a little and mommy kept her steele eye look on Nurse Donna the whole night. We haven't seen Nurse Donna since....

Friday:
In the morning my meds were not up from pharmacy so I didn't get them until 10am. We decided to put them in syringes and shoot them through my feed tube while the formula is going through. Since my feedings got out of whack last night my parents didn't try bottle feeding me as the plan was supposed to be. Kate the OT came to see me for the bottle feed this morning. I coughed and she started getting red flags from this. She said to try again in the afternoon. She came by for my afternoon feed and put a halt to my bottle feeding as she noticed that this time I was holding the formula in my mouth then swallowing, she is concerned that I may asphyxiate myself, and has set up a 'swallow test' for Tuesday afternoon. This test requires me to sit in a chair surrounded by ultrasound equipment. They let me drink from a bottle that has formula and barium inside so they assess the swallowing to make sure there isn't a blockage and that the valves are working correctly.

Dr. Tarnapolski came by and requested mommy to have a blood test to see if she is copper deficient, meaning I wasn't getting enough copper in utero. He said it's a long shot but things are not making sense to him in my case. As some of you know Mommy has 'problem veins' and most of the time no blood comes out so she has developed a fear of blood clinics. However she said she'd be strong for me and went down to get it done.

I had some visitors today! Grandma Philp came to see me, and dropped off a small container of vegetables and dip as my mommy has been craving them. She also gave my mommy a nice necklace in the shape of a key that says 'mom' with diamonds. My mommy really loves it and will wear it all the time! Glenn and Joanne came by as well! They brought me a stuffed dog that looks like their dog Bonnie, I like her, she is nice and fluffy!

I was weighed tonight and I am still sitting at 3.15kgs . I also am patiently waiting for my bath.....

Enter the Bottle!!

Ladies and gentlemen we have achieved bottle feeds.  Now not to get ahead of ourselves here but yesterday afternoon I took in 7ml by bottle (and wore 7ml more) and today I just ate 13ml!  This is fantastic and my OT Kate is thrilled.  So the new plan is feed for 1 hour, fast for 1 hour.  My feeds have been adjusted to 36ml in one hour from 18ml in one hour to make up for the pauses.  Mom and dad have asked for a list of things to watch for in improving my feeding ability.  This is one HUGE baby step on the road to going home.

In other news, mom found me a Fischer price crib-side aquarium that plays some sweet classical music.  My Grandpa and Wayne are coming to visit today and probably take mom and dad to dinner. 

Please continue to pray for me and my roommate Emerson.  We're both making great strides and the nurses and doctors are very pleased.

Introduction to Occupational Therapy

Hi All, Ethan again.

We made the big move yesterday and are now happy roommates again with our old pal Emerson.  This has helped to reduce stress levels in both the Reimer and Rutledge camps.  The only scary part of the move is that the previous room occupant was "in isolation" and apparently we are not supposed to touch the curtains in the room as they haven't been cleaned.  The room also has this creepy wood paneling and a chair/bed that smells like rotten fish.

I am still puking, and since I am off my D50 when I do I have to have extra glucose checks to make sure my sugar levels do not go dangerously low... This adds up to extra heel pokes.  The Dr.s are a little concerned by my puking episodes, however they seem to understand the reasons I may be doing it.

The Occupational Therapist was in today to see me.  We tried all sorts of exercises to assess my head control, reflexes, alertness and tone.  She will read over my history as well to make a decision on whether or not I should try to take some formula from a bottle today.  She will be back in the afternoon after she makes her decision.  In addition to possible bottle feeds, I am also getting an updated formula that uses similac and MTC oil.

Now I know all the books, magazines, and experts say that babies only smile because they have gas.  Well, although I can't say I'm gas free, I do smile from time to time just because I'm content! 

My night was fairly good.  Dad slept at my side and our neighbours are the friendliest and quietest we've had during our stay at Mac.  Since noise wasn't going to wake me tonight, I decided instead that I would have some sleepy poops and wake my self up! 

All in all, we're still making great strides on the road I call life.  Thank you all so much for your continued support and prayer.  I need to take a moment though and ask you all to think and pray again for another.  My roommate Emerson is still having seizures.  We feel so much for him and his parents and are with them every step of the way along this journey.  Please include him in your prayers for us.

Off my sugar high.. On to modelling

I have been taken off all my sugar solution and am just on the specialized formula.  The Dr.s and nurses will monitor my sugar levels very closely for the next few days to make sure it doesn't drop.  So far my glucose was 5.1 this morning, the next glucose check is at 2:30pm and will give us a better indication where it lies.  If my sugars stay consistent over the next few days, they will cap my central line and eventually take it out.  They don't want to leave it in longer than I need it, as they are prone to become infected, and that's the last thing I want to add to myself.

Something called "The Occupational Therapist" will be in to see me sometime today.  As we found out from Andrew Rutledge, these people are not here to find me a job, as their name may suggest... they are apparently people who evaluate sucking and swallowing reflexes.  They will evaluate me feeding from a bottle to see how I do and how my blood gases and sugar is effected.  My mommy is extremely scared for this as the only thing I did before I started this roller coaster was eat myself to sleep, which eventually ended up in my acidosis.

As you all know I had my "modeling" session yesterday.

Jennifer Wessels was the photographer. She has a professional photography company, and is starting to do some work for an organization called "Helping Hearts".
"Helping Hearts is a project created by Melissa Knowles & Michelle Regner with the goal of being able to provide free photography sessions for families with children who are suffering a life-altering illness or disability. Over the last couple of years we have acquired an entire team of photographers who are dedicated to donating their time to Helping Hearts because they believe in sharing the gift of photography with as many families as possible." Their website is http://helping-hearts.ca/#/home/

It was a fantastic experience for me, my mom and dad.

Ch ch ch Changes...

Hi All,

Dad and I had a great sleep in our new room last night.  The chair dad has now is a little wider and looks like new!  I slept quietly all through the night and right up to my morning blood work.  Nurse Krista came in this morning and gave me my heel poke.  She had to fill a "green top" and a gasses tube.  To make her life hard I decided this was no time to be a bleeder.  3 pokes later I had given enough to go back to sleep. 

Blood work continues to look good so Dr. Potter came to see us and we have changed my Dextrose solution so we can reduce my levels a little slower as I go down the last 1ml per hour.  Previously my solution was 50% dextrose at 1ml per hour.  We are now using 10% Dextrose at 5ml per hour.  Same sugar, more volume.  The plan was to drop my D50 to 0 at 11pm tonight.  The new plan is to drop my D10 by 1ml every 3 hours.  This will let us control my final descent! 

Once the Dextrose is off entirely, Dr. Potter wants to watch my glucose for a few days before making any feed changes.  The plan though is to explore Bottle Feeding while still in hospital in hopes that I can manage this for when I get home.  The discussion continued today regarding my return to Harding st. and mom and dad were elated.   I may need to go home with a feeding tube and a pump like I have here.  Only time will tell. 

Mom, dad, and I have been reading all my guestbook entries and on behalf of the family, we so very much appreciate all the support, encouragement, thoughts and prayers!  I feel stronger by the day despite still puking now and again, to my mom's chagrin. 

Looking forward to meeting so many of you soon!

Puking and counting

So I puked on my mommy again today... on 4 different occasions this morning.  I think I am starting to cause her to stress out because I seem to be puking a lot.  We'll have to inform the doctors on Monday and see what they say. 

My D50 was decreased to 2 this morning, unfortunately I puked a few times before my first glucose test and was down to 4.  My test at 2:30 put me back up to 5.8.  They are attributing the drop to my puking episode.  Nurse Jackie warned us that we will have to watch real close once they wean me off the D50 to make sure that my sugar levels are still okay especially if I keep puking.

Mommy has been upset the whole day as I haven't poohed since last night.  As you all know, I am quite the pooh machine so the lack of it on the outside of me is unusual.   She is hoping everything is okay, and has reported it to my nurse.

I had a lot of visitors today.  My 2 grandmas came to see me around lunch time.  This is my sleepy time and was in the midst of a nice deep nap.  Presents were given to me from my Gramma Reimer; mommy showed me tonight and I am excited to wear my new outfits and play with my toy!

My cool uncle Brian came to see me with Paige.  I like her as she is the only other girl other than mommy who hasn't tried to poke me or stuff things down my nose!  I am just so used to all the nurses doing those things to me!  I woke up and had a nice visit with them.  Mommy tried to pawn my diaper changes off on my Uncle but he would have nothing to do with it.  I am thankful that mommy caved and changed me!  No pooh yet.

On to my next visit with my Grandpa Reimer, Wayne and Great Uncle John.  I went sound to sleep! Great Uncle John stayed with me so that Mommy and Daddy could get out and have some dinner away from the hospital.  I was good and slept through the whole thing.

We have pooh!  Mommy is soooo happy!!

2.5 and counting

McMaster gets quiet on the weekends.  We don't see as many doctors, the specialists go home and generally the labs shut down.  So not much activity. 

Here in room 3C5, life goes on as usual, I get my regular 6 hour interval heel poke and we alternate my regular food and special med food.  So far we're still on course for my sugars to be reduced to zero.  Speaking of which, we just dropped it to 2.5 ml per hour and my first blood test came back with a glucose level of 5.3! I'm doing great!

Dad has been learning the procedures for my feeds.  So far he is proving that nurses deserve a great deal of credit for the fantastic job they do.  Dad has spilled some formula, clogged the feed bag, and let air enter the line twice.  He is learning but still needs an adult to help him out.

I have been tolerating my feeds better now and only spit up a little bit.  My mom and I are working on ways to make this easier on me and she's taken to wearing her black vest as a protective coating while she pats my back to burp me.  She also sits me up regularly to make sure I get some different positions in during the day.  She's taking such great care of me I can't imagine not having her around!  Can't wait to take her home with me!

My mommy took a picture of my Broviac site to make sure we have something to compare too next week, as the nurses only clean the site once a week. We need to make sure that it doesn't get infected!

We had a visit tonight from Emerson's parents saying that they were going to have a photographer in on Monday who is building a portfolio.  They offered to get us on her list of kids to photograph.  We'll get some nice pics and a CD for free!  Should give us way more content to send up to the site. 

Tomorrow is also a busy day, we'll keep dropping the glucose and I have a bunch of family showing up!  Also, mom wants to do the laundry so I have some clean sleepers.  I have a tendency to soil them almost as soon as a new one goes on.

More on my sugars tomorrow, keep your fingers crossed!

The weekend arrives

Good morning all,

Yesterday we resumed my dextrose reduction and now I'm down to 3.5ml per hour.  Glucose readings are still steady at 5.6! That's great news all round.  Over night, daddy stayed with me and tried to sleep but I decided that 4am was my time to shine.  I got him up and cried until he changed my bum.  Then as I was wide awake daddy stayed up and cuddled me for awhile.  We listened to music on daddy's blackberry until it was time to go back down for a nap. 

We read a bunch of visitor comments today and I was so happy to hear from my family and friends.  I had no idea how many new pals I was making.  Uncle Jan and Jay are coming today for a visit and I hope they came ready to play!  Based on my feeding schedule, they should be here just in time for the end of my meds.  Maybe I can puke on them today!

Mommy and I are sitting together and I'm hiccuping like a beast.  Mommy doesn't like it when I do this because I only seem to do it with her.  Yesterday, mom helped me learn to suck my thumb.  This was good news as I often spit out my soother and can't find it again.  The only problem I still have is when I suck my thumb I make a claw hand and usually scratch my face.

For those of you who wanted to keep up with Emerson, I have the link handy, do you want it?  I'll give it to you!  Ok, here it is.

www.caringbridge.org/visit/emersonrutledge

check him out too, he's my best pal in here!  Keep praying for him too, his parents are still without answers much like we are.

Thanks for reading, we'll talk again soon!

Onwards

My lactate level was down to 2.5 with this mornings blood work.  They are continuing with the plan of weaning me off of the D50.  This time it will go down by 0.5 every 12 hours.  I am currently at 4 ml/hr and they are checking my glucose level to make sure that it doesn't go too low, so far I have had my 30 minute and an hour check and the glucose level was 4.8 both times.  They will check again at 2:30.

Nurse Debbie is off today so I have a new daytime nurse.  Who has managed to bleed me like a bleeder person, lost my formula and my D50 solution.  Dr. Potter and Amy came by and when my parents told them about the lack of organization Dr. Potter excused himself to go bust some heads, and Amy took Dad to show him where everything was kept so mommy and daddy can keep tabs on them.

Just had a visit from Emerson and his parents!  They just received a prescription to take Emerson out for a walk... yes 'prescription'.... We are very proud of him, as he has made great progress this week, keep it up Emer we are rooting for you chunky monkey!

1 boy 3 diapers

Good morning friends!

Last night was a quiet night.  A wonderfully quiet night.  Daddy stayed by my side again and we slept fairly well for the most part.  I did wake for about 20 minutes around 4am and daddy cuddled and rocked me back to sleep.  Adrian our neighbour didn't cry or get angry at all!

Then morning came.  Daddy woke up to find me bundled up like a newborn again.  Debbie said yesterday that our night nurse Phylicia likes to bundle little ones up tight because she used to work in the neonatal unit.  She had me bundled up soooo tight that I was just a big ball of sweat!  Daddy unwrapped me to let my skin breathe for a minute and the nurses arrived for the pound of flesh.   By pound of course I mean 4 mls and by flesh of course I mean blood.

Just as they started my blood work mommy showed up!  Her favourite time of day is BLOOD TIME << severe sarcasm warning>>

My blood letting went better today than usual and they were able to get a good capillary sample from my foot.  Once they were done I settled back down with mom.  I was still being a little fussy and mom thought maybe I needed a change, thus began DIAPER #1.

Mom started my change and was surprised!  I had FILLED this one!  I had filled it so good she took one look at dad and said "you need to come do this one!" After cleaning me up and getting ready to put me all back together...  DIAPER #2.  Without warning I made another generous donation!

Dad started over again.  Taking away my old diaper, adding a bit of my no sting rash spray and powder.  Then just as we were finishing up.  DIAPER #3!

Suffice it to say, daddy was both proud and annoyed.  The doctors are happy that I am a poop factory and thankfully the hospital system has a near endless supply of diapers just for me.  I'm getting pretty close to a pack a day!

The doctors are getting ready to do rounds soon.  The big news is that I'm still not holding down my med/formula concoction so they are going to decide if there is a better way to administer some of my medications.  The current plan is to still reduce my dextrose, slower than before though, and wait patiently for my skin and muscle biopsy results. 

Side note -- one of the doctors here looks like a Bollywood Neil Diamond.  "Forever in blue jeans babe."

Thanks for stopping by!

BIG trouble in little ward C

Ethan here,

Oh what a night.  I have another baby in my room named Adrian.  Unfortunately, Adrian is also not a happy camper between the hours of 1am and 4am.  I'm getting pretty good at sleeping through his screaming but my dad, who stays by my side at night, isn't.   

- Nurse Debbie is back with me again this morning.  We took a quick sugar sample at 8:30 and I was at 5.1 on the glucometer.  This was a good thing as overnight I had a drop to <3.8.  That number scared the doc a little bit and they put my Dextrose intake back up again.  I was down to 4ml every hour from 6ml earlier that day.  I'm cruising at 4.5ml now and we'll be revisiting this after the doctors do their rounds.

Nurse Debbie says I look a little puffy today.  As a result, they couldn't do a heel poke for my morning blood test.  Instead they went for A VEIN!!!  Mom doesn't like to watch this part.  Dad likes to be helpful but also doesn't like to hear me scream.  My veins generally do not cooperate with this type of testing.  As with past attempts, they tried my arms, they tried hands, they even talked about poking me in the head.

They will talk to the metabolic dietitian, Amy about my feeds as they changed my formula the other day and may be a contributor to my puffyness.  They will try to reduce my dextrose a little slower.  They were a little overzealous yesterday about my progress and may have went a little faster than what I could handle.
  
This morning my lactate level was up to 12.  The Dr.s are suggesting that the increase may be due to the nurses using a tourniquet on me.  I also had my glucose checked and it was less than 3.9 .  The Dr.s have decided to recheck it at 6pm tonight.  I was weighed this morning and have increased to 3.10kg.  However we are not sure how much of that is fluid and how much is me.

My Grandpa Reimer and Grandma Philp came by to visit me. My Grandma just gave me a stuffed monkey named Springalings!

I want to thank everyone for believing in me, it makes the days seem a bit brighter to know that I have love, prayers and support from my family and friends.

Tubaluck

My D50 has been turned down to 4.5 and my glucose levels are still stable (just scored a 5.2).  Nurse Debbie just told me that I am down to 1 blood gas test a day, however I still need to be on frequent glucose blood checks to monitor my sugar.

I mentioned in my last update that I had been puke free... that changed this morning as a few of my meds were given through my feed tube all at once... which I hate, so I puked, conveniently when Dr. Potter (My new on call Metabolic Dr.) was here to see me and mentioned that I had been doing well with no pukes.  *sigh*... I just hate those meds.

I got lots of presents today from Heather and Sean!  A few new outfits, a couple of hats and some slippers!  I even got a new stuffy named Tubaluck, I like him, he's very colourful, and he sits as my guardian on top of my bed.

I just had a long nap after my visitors left and now I am awake and a little fussy, just wanting some cuddles.

Urgent Update:

I just pooped on mommy's shirt!

Also my roommate Jordan and his mother just gave me a token of an angel that they were given in 2007 when they were in the very same bed as we are now.  Jordan was then told that he would not live as he was born without some of the important abdominal muscles that we all take for granted.  It is now 4 years since then and Jordan is back and healing following a surgery that has helped to correct the problem.  The token is another wonderful example of the love and support we are being blessed with here.

Thank you Jordan.

Doctor Turnapulski was also here to discuss the testing we did last week.  He has ruled out something called the Sco2 disorder that has no survival rate.  He is continuing to look at the mitochondrial disorders as those are the most likely at this stage.  More "good" news!

Mommy has changed her shirt and is cleaning me up.... whoops, just peed on her too. Sorry mom... anyway, typing and being cleaned don't go together. 

Ethan out!

Making Changes

Hi everyone, Ethan here.

Yesterday marked the start of a lot of changes for me.  We are slowly trying to bring down my intravenous sugar intakes today.  I'm down to 5 ml per hour from 6ml.  Sounds like a small step forward but for me it's a huge leap. 

We have switched my medication and are now including it in with feedings.  The hope is that I will be able to eat it without throwing up!  So far we have been successful.  24 hours puke free!

Yum Yum can't you see my bright yellow med/food concoction in my tube!

My nurse today is Debbie.  Debbie reminds us of Enseign Ro Laren from Star Trek.  She has been taking great care of me and is working on making my bum feel better as it has become very sore from all the diapers and toxic poop I create.

The big news today was that the metabolics assistant doctor came by and mentioned that they were making plans for managing my feeding at a home care sort of level.  This means that if they can manage to get my IV down to nil and take it out, and my sugar levels stay constant, I MIGHT GET TO GO HOME ! ! ! ! !

My mom and dad aren't counting their chicken just yet but we're all excited.  The next plan is to try and send me for an MRI this week.  Booyeah, brain scan! 

My little buddy Emerson had a good night seizure free last night.  We're all really excited for him and his parents! 

Well it looks like I have visitors, my friends Sean & Heather are here to see me. 

Signing out for now!

NG clogged again

This morning began with my NG tube clogging again, it's been replaced and the meds have been given to me, which I promptly puked up. My blood test has been taken and my potassium level is low.  The Dr.s are calling it a fluke in the blood processing and tried to take more blood from me to double check, but I was having nothing of it, no more blood from me!  The nurse gave up and will try again this afternoon.  There has been talk of finding a better method of administering my medications as I do not like them, especially the neon yellow one.  They are trying to space them out so I don't have to take them all at once, but I still don't like it and end up throwing them up.  We are waiting anxiously to see what the Dr.s come up with.

The move to Gen Peds

Mommy and Daddy had to leave the Ronald McDonald House this morning as they are closing for renovations.  They have been put up down the street in the Visitor's Inn.

While Daddy was checking into the hotel, mommy came to see me.  She walked into my room and was surprised that in my bed there was a girl!  She was worried sick about me, where did I go!  Mommy was told that I was moved to the general pediatric ward last night. She was upset that they just moved me without notice.  She texted dad to tell him where I was so he wasn't confused as well.

I got my first blood work done at the Gen peds, and it came back with a low PH level and a higher lactic level.  Daddy was beside himself, upset that I was moved to Gen Peds and I had gotten my worst blood results in days.  What seemed like days went by for my next blood test in the afternoon.  My blood results came back better. 

They tried to take blood from my arm, I am not used to this method and screamed my head off.  Mommy and Daddy had told them to do heel pokes, but they weren't listening to us at first.  Only a small amount came out of my arm and then they decided to get my feet going.  Success! 

I have also learned how to rip out my NG tube, and am now on my 5th tube, due to med cloggings and from the one I yanked out today.

Emerson's parents came to visit us, they too had been moved to the Gen Peds ward, and were less than thrilled with it, as Emerson was still having seizures and his mommy has to run to find a nurse when he stops breathing. Emerson's mommy told us that there were a few really critical babies who got rushed to the ICU last night and they needed our room, so both of us were moved to the Gen Ped ward.

My New Roomate

Since I have been doing so well, my mommy and daddy went home for a quick shower yesterday.  Don't tell them, but they were beginning to smell!  The Dr.s are still confused about what I have and we are hoping the tests come back soon so we have answers.  Dr. Kozenko said she will be on call for me this weekend, as I misbehaved last weekend.  The nurses have been taking good care of me, when mommy and daddy have to leave me at night, the nurses often sit with me when I start to complain.

I have a new roommate.  His name is Emerson.  Emerson is a day older than me.  He had a stroke when he was first born and is continuously having seizures.  I hope the dr.s are able to find out what is causing them and he is able to go home soon as his parents are worried sick about him.  We keep eachother company and communicate through cries and coos.

Rewards

Last night my blood pressure dropped and my blood chemistry numbers reached an all time worst. A desperate call was made to Dr. Kozenko, who told my nurse and Dr. Gilleland to start me on an infusion of Bi-Carbonate. The orders were to give me more than the hospital protocols deemed as the limit for an adult person!

So here I am, my blood chemistry levels have been the best they have been while I have been in the hospital!

I am showing my parents, my family, friends and the Dr.s and nurses that I am a fighter.  Plus mommy and daddy have been teaching me to be a cage fighter, I've been learning blocks and jabs. As a reward Dr. Kozenko has allowed me to start feeding, although it's through this annoying NG tube that they shove through my nose so I can swallow.  It hurts a little in the beginning but I am strong and I only complain a little bit.  Also as an extra perk my all my IVs were taken out now that I have a nose tube! I am starting to look like a REAL boy again.... Except for my jaundice, who is sticking around because my body is so weak. I was finally allowed out of my Giraffe for some snuggles with my mommy and daddy, they were made to promise not to interrupt all my wires!

My medications are up to 16 different ones, mostly vitamins and some experimental meds.  Most of them are in pill form so my nurses have to crush them and dilute them in water, which doesn't work, they still remain solid and clog my feeding tube. I can't even start to list all the ones they are trying on me. They seem to change every so often once the doctors have a meeting and talk about what the solution to my puzzle could be.

The Dark Day

After a turbulent weekend, this Tuesday started like any other.  I was resting and mom and dad came back to the room to see me.  They had been staying in one of the resident's rooms where doctors can sleep between shifts.  Dad was being crafty and to make sure he didn't lose the room, he was holding on to the key for dear life. 

The doctors said they were going to meet with mom and dad to discuss my situation.  This was going to be later in the afternoon however we had already been given some pre-warning that the news was not going to be great.

The afternoon came around and the doctors asked mom and dad to go with them.  I laid back and relaxed as they left the room. 

Dad here, Ethan wasn't around for this part so our story-teller will be me for a bit!

The doctors took us to a room they called the family lounge.  The lounge was an 8x8 room packed with 2 couches and 4 chairs.  We were sat together on the loveseat and Dr. Kozenko, Dr. Gilleland, our nurse Jen, a social worker and several assistants poured into the room.  Total population count of the room was up to 9.  With square footage at a premium, the discussion began.

Dr. Kozenko started the discussion by explaining in broad terms how the cells of the body process glucose and convert it into energy.  She drew us a map of the cells and walked us through the process.  They have suggested that Ethan has a break in the cycle at the point where Lactate acid is converted back to glucose.  There are two enzymes that are responsible for this process and sadly neither of them can be synthesized.

Dr. Gilleland spoke next.  He mentioned that he had been reviewing Ethan's case data and wanted to bring us up to speed.  He recounted the tale of Ethan the puzzle in his own words to make sure we were all on the same page.  He then discussed the prognosis.  He reminded us the enzymes that appeared to be missing cannot be synthesized and ultimately this meant that there is no cure.  He reiterated by saying "There will come the day that you will leave this hospital without Ethan".  This brought a swell of tears to the back of my eyes.

Fighting the tears and rubbing Leeanne's back, I understood this to be the likelihood.  He went on to say they will continue to do whatever they can to continue the stabilization of his blood chemistry.  He then noted that based on his prognosis, there are certain issues that needed to be discussed regarding life saving measures.  He noted that if Ethan began to deteriorate, they could use breathing tubes or other means of resuscitation however based on his prognosis, these measures would not change his outcome.  He asked that we think about whether we wanted to put him through the added stress given the expected outcomes.  Dr. Gilleland and Dr. Kozenko reminded us that hope was not lost and that there is a chance that his body will simply grow and adapt to complete the cycle that is currently broken.

The doctors finished up by recapping the whole visit to date and left Leeanne and I to discuss things.  Our discussion took the form of tears dampening eachother's shirts.  After some time we discussed the issues and decided that it didn't make sense to put him through anything that wouldn't ultimately change his outcome.  We were resolved in our decision but saddened to have to make it.

This day had become the darkest day of our lives.  Both our parents came and Leeanne's brother came to visit.  We sat around the coffee shop table not saying a whole lot and sharing glances of love, support, sadness and hope.  In this time, our family grew a bit closer and we each tried to comfort and strengthen one another.

We returned to Ethan heavy hearted but resolved to treasure what time we were going to have together and hold and play with him as much as one child could ever stand.

Shawn out, I'll hand things back to Ethan now.

Mom and dad came back to the room, I could tell they weren't happy but I knew they loved me very much and that we were going to be together through whatever they threw at us.  The dark day still had a ray of hope.

Ethan the Puzzle

I was becoming a puzzle for all the Dr.s and nurses.  I had generated a lot of questions but no answers.  The Dr.s believe that after looking at all my organs and vitals that I must have a metabolic disorder as I was looking good but my chemistry was out of whack.  The Dr.s believe that I could have a rare metabolic disorder as they tried to give me everything that could help with others, but I just didn't respond to any of them. 

Dr. Kozenko drew some blood from me on Friday night for genetic testing for the GA1 disorder and sent it to health Canada.  My parents were told that the results take 2-3 weeks.
I had a skin biopsy today where they cut a piece of skin from my back, I was told it was just a little scrape.  This part of me was sent to the states somewhere so my cells could start growing and hopefully generate some answers.  This takes about 4 weeks, in 2 weeks we will know if the sample is good and cells start to grow.

Tonight I was taken into surgery at 6:30pm to get a central venous catheter in my neck, which enables the nurses to give me fluids and the hope is that they can use this line to get blood from instead of heel poking me everytime.  I was put to sleep and a breathing tube was inserted into my nose.  My Dad waited for me to come out of the operating room, while my Mom was waiting for me in my hospital room.  Hours went by and Mom was getting worried that something must have happened because it seemed to be taking a long time.  At 9:00pm dad went back to the room to tell mom that I was out and in the recovery room and I would be back up in 20 minutes.  The line was a success, although it didn't work for bleeding back. 

So I best get used to heel pokes....

My First Weekend at McMaster

My first weekend at Mcmaster was a scary one for me, my mom and dad.  My blood chemistry was a rollercoaster, and the nurses and Dr. Kozenko worked hard and fast to try to get my blood gases as stable as possible.  Everything they tried to give me just didn't seem to work.  I was taken off feedings and I was given a saline/dextrose solution through my IV instead. The Dr.s and nurses kept changing my solutions to get a combination that seemed to keep me relatively stable.  My IVs would periodically stop working so they had to keep finding new veins in my head/feet/arms.  By the end of the weekend I was somewhat stable.  I was still very sleepy, hardly waking for my standard heel pokes.