Update

First, I want to thank everyone for the phone calls, e-mails, texts, and BBMs. Knowing that we were surrounded by family and friends made this whole thing easier. The outpouring of support and love was truly appreciated and it is what really got us through this most difficult time. I wanted to write and let everyone know that Spencer is home. He is doing great. He is on very little pain killers, he's eating, he's happy and we are past the worst of it. He is still swollen but looks a million times better than he has in the past 4 days.

I am going to be going back now and writing about each day and what the obstacles were that we faced, including the surgery day itself. I will also be creating a link shortly to a slide show with pictures so that everyone can see what each day brought and how we dealt with it.

Again, thanks for reading and following...

Post Surgery Day One

I wanted to give everybody a short update on Spencer's recovery. His swelling has progressed throughout the day. He spends most of his time comfortably resting and sucking on his pacifier.
It has been a day full of highs and lows. He is drinking and peeing, which are good signs post op. However, the anesthesia is wearing off and he is vomiting intermittently. Spencer has also been moved from a constant morphine drip to an oral dosage every four hours.

The swelling is supposed to peak by midnight tonight (36 hrs post op) which we are definitely seeing, and I hope that it will start to subside, even a little overnight.

He is getting tremendous care from all the staff here at Sick Kids, especially the nurses. They are always smiling and comforting – even when they have to weigh "the presents" or dirty diapers which they do to monitor his output. They also take amazing care of the families and parents as they play a very key role in a child's recovery.

I will post another update as soon as I can.

We will also be posting some pictures soon on a separate page within the blog to document the entire journey from surgery to recovery and beyond.

Out of The Woods

I'm happy to report that Spencer is out of surgery. Dr. Phillips just came to tell us he did great. There were no problems and he doesn't anticipate any. Now we just deal with recovery. He tells us that he is no more fragile and if he wants to be picked up we can and treat him as we normally would. He is in ICU now and we will be able to see him in 15 minutes. Dr. Phillips also went on to say that we should see nice differences right away as he is not swollen yet. He will likely swell overnight but right now he looks most like himself. I'm anxious to see him and will post pictures as soon as I can.

An Amazing Letter From a Dear Friend

(This is Alana)

Last night at about 9:30 pm my doorbell rang. I wasn't expecting anyone and to be honest was so busy running around that I was sort of annoyed that someone was at my door. I figured that maybe it was a door to door salesman as we do get a lot of those. Needless to say it was not a salesman but one of my bestest and oldest friends Heidi. She had come to send her love and give me a letter to read while Spencer was in surgery. The letter was so incredibly powerful and amazing that I had to share it right now. (And frankly it has given me something to do to take my mind of this horrendous waiting)

So here goes...

The risks are low, but the stakes are high.
The expectation is perfection, yet the anticipation brings frustration.
The waiting is the hardest part, yet you know it will be all worth it in the end.
Today marks the first big steps on a journey that began 10 months ago.
It all began with uncertainty...why, what and how?
Over time, the answers slowly became clearer.
We know the what and the how, but the why is forever a mystery.
I think the why is because Spencer is special.
It takes a certain kind of person to be able to make their way through life while facing difficulties and thanks to your selfless decision, and putting fears aside, Spencer will hopefully have fewer difficulties to face.

The skilled hands at work will correct what nature failed to complete. Their expertise will be obvious once the scars have healed. It will all be worth it.

I'm sure you've cried a thousand tears. Tears from fear, tears from anger and tears from uncertainty. But just remember that by shedding those tears, you may have spared Spencer from shedding some of his own, at the hands of cruel and mean children and even adults. Your tears, mean less for him. Well done!

I am proud of the decision you and Steve have made to do this for Spencer and although this waiting is killing you both, you will be thankful and happy when it's all done.  When the doctor finally emerges and comes to tell you that everything was perfect, the weight of the world will be lifted from your shoulders. It's a hard burden to carry for 10 months. It's a lot of heavy emotions and confusing feelings to deal with, but alas, they are soon to be over and hopefully, never thought of again.

My whole life's philosophy has been that everything happens for a reason. And when struck with adversity , it is hard to swallow those words, and not ask why. G-d only gives us as much as we can handle. You, Steve,Eidan and both your families are more than strong enough to help Spencer make a speedy recovery and go back to being his playful, happy self.

We will be thinking of Spencer and all of you today, and sending good vibes your way.

We're here if you need anything, just call, e-mail, tweet, text, or BBM...you're bound to reach us one way or the other :)

Heidi, Brian, Joely and Arley  <3

Surgery Today

Sick Kids Hospital, Toronto

Good Morning. Today is Spencer's Surgery. My name is Geoffrey Vertlieb and I am Alana's Brother. I will be guest blogging today, keeping you updated as the day progresses.

6:30 am 
Finally all checked in at Sick Kids Hospital. Waiting for PreOp. Surgery is scheduled for 8:00 am.

7:00 am
Spencer is in a PreOp Bay getting changed and having vitals checked.

8:00 am
Spencer has been taken into Surgery. He went in smiling.

To Participate or Not?

When I went for Spencer’s pre-op appointment I was confronted with a question and now I am posing it to you my readers.  Sick Kids Hospital is conducting a research study on a drug called TXA or Tranexamic Acid. This drug is routinely given by surgeons and anesthesiologists intraveneously to decrease blood loss during surgeries. TXA or Tranexamic Acid is a safe drug. In many studies there have been no serious complications. It is used in all types of surgeries including open heart and lung surgeries with no serious problems proven to occur. TXA is thought to reduce blood loss by preventing blood clot break down. However, results of past clinical studies evaluating whether TXA decreases blood loss and the amount of transfusions are not conclusive. The purpose of this study is to find out whether TXA does in fact reduce the amount of blood loss and the need for blood transfusions or whether it is the same as a placebo.

 If we choose to do the study Spencer may receive TXA through his IV once he is asleep. He will randomly be assigned to be in one of the three study groups. Two of the study groups will receive TXA but at different doses. One study group will receive saline as a placebo that has no drug effects. They say that the study will not affect his operation or his care. In total they are looking for 90 patients to enroll in this study.

 They say this study will help other children down the road undergoing the same surgery but Spencer will not directly benefit from participating in the study.

This is the chart we received…

Now I pose it to you, would you participate and why or why not? I am leaning towards no even though my pediatrician says he would participate and would let his child participate. My fear is what if Spencer needs the drug and receives the placebo. They say they will not hesitate if they feel he needs the drug but if you were a doctor and you know there is a study wouldn’t you try to honour the study first? I feel those seconds, and that’s all they may be is seconds but they might be valuable to Spencer and his well being. This kind of thing scares me. I would love to say that Spencer was a part of something bigger and have the ability to help others but does it have to be at such a critical time?

The CT Feed and Sleep

Yesterday morning at 7:00 am I left my house with Spencer awake and happy with high hopes of a successful feed and sleep CT scan. First let me explain what a “feed and sleep is”. In order to do a CT on a baby they need to be asleep so they don’t move. They can achieve this two ways. One is sedating them with a drug that will put him out for about two hours or the mother can nurse the baby and try to put him down naturally and pray that he stays asleep during the scan. We decided after much talking that we wanted to go the “feed and sleep” route as it is a five minute scan. When we got there Spencer was exhausted and hungry so I fed him. I swaddled him as I do regularly for his nap and then I took him into the room with the scanner. You would think it is loud but in fact it is just a quiet hum so I figured we can do this. After all, it is only a five minute scan. Of course, Spency will sleep for five minutes. If it was Eidan (my older one forget it because I couldn’t even really get him down for a nap in his own crib) Spencer is such a good napper I figured we had this in the bag. So, I put Spencer on the table, he stays asleep, phew. They wrap him with a blanket, they put a cover over him so he can’t fall off the table if he does wake up, then they put the lead on him and me. He’s still asleep. I’m so happy! The machine starts, he is still asleep. The machine goes a little louder and faster and starts making cool air. It seemed like it was eternity but oh oh, Spency is stirring. Oh, no, an arm is out! He’s awake and he starts to cry. It seemed like such a long time so I was hoping that he had done it even though he had woken up. The technician came out and said he was 14 seconds away from being finished so unfortunately we will have to try again.  I am so discouraged. A nurse came into say not to worry. They have a 99% success rate with the feed and sleep so not to stress. I got Spencer back to sleep very soon after and decided to try again. I put him down, the machine started and boom he was awake right away. A no go! The nurse again comes back told us to go for a walk, feed Spencer his cereal and we’ll try again in a little while. So Steve and I agreed. We took Spencer for a walk, we fed him breakfast. We took him to the Family Centre which is a carpeted library and let him crawl around a bit. He started to rub his eyes and get cranky so back upstairs we went with serious high hopes. It is now 1:30 so it is his usually afternoon nap time. This time the nurses decide that when he is sleeping, they want to take him into the room and try and get him down. They believe that he smells me and that I am his food source therefore maybe being away from me might help. I knew deep down that this was very wrong as I put him down everyday but figured that they were the professionals and they weren’t really giving me a choice. So after me holding him in a good sleep for 15 minutes they take him, and sure enough within a minute I can hear him screaming at the top of his lungs (which he rarely does). I waited a minute and then decided I am not happy with this so I go in and take him back. Again a no go! I was seriously getting discouraged. I called my mother who was watching Eidan and told her what was going on. She was at my sister’s house so that my nephew and son could play together and she was also upset but convinced us that all was fine and that we should persevere! As hard and as frustrating it was we needed to at least give it one more chance. My sister said the same thing so Steve and I talked and agreed that we would try one last time and if it didn’t work this time we would rebook the appointment and have to sedate him. Again, we go downstairs, we eat lunch. I feed Spencer a good lunch of Yogurt and Fruit. He eats well, he poops, we change him and decide to take him to the “playpark”. Inside Sick Kids Hospital is an area where parents can either drop off children or stay with them and play. It is about five little rooms with all kinds of toys, books, instruments, computers, and wonderful volunteers. We decide to go in, Spencer has a ball, he is crawling around, he is playing with all kinds of age appropriate toys, and it is now 2:30. After about 20 minutes he is exhausted. I figure this is it! We go back upstairs to start the whole process one more time. This time he falls asleep so so fast in my arms. I wait about 7 minutes and tell the nurse we are ready to go. This time I am talking to the nurse and Spency is completely out. I bring him in the room and this time they start the machine right away. There was a different technician. She was really sweet but stricter. The man in the morning let Spencer keep the pacifier and this one said we had to take it out. So my heart dropped figuring that once she takes it out we will be finished but….I put him on the table, he’s asleep. They wrap him…he’s still asleep. They put my lead apron on….he is still asleep and snoring away. They adjust the table…he’s still asleep. Lastly, she takes out the pacifier and my heart stops but he stays asleep. All the while I am shaking and shushing him at the same time. The machine starts making that wind again and he’s asleep, no movement at all…..”Oh my g-d” I am thinking. How much time has gone by? I’m trying to look at my watch and figure out how much time has gone past. The machine is moving back and forth but he is still sleeping! Then it stops and I thought “Are you finished….did he do it?” The technician comes out with two humongous thumbs up saying he did it! The table comes out and he is still sleeping. The man undoes the covering with a loud velcro sound and wakes him up! I don’t care! We did it!!!!! What a relief. Spencer did it!   I was so happy I could have jumped up and down with him (but of course I didn’t. I felt like a new person and Spencer was looking at me like why are you so happy and loud and why am I awake again? But it was all good. Steve and I gave him a thousand kisses and made our way back home.

 This was the last appointment before we have the surgery on June 21^st so now we just wait…