Thursday, June 21, 2012

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.

Tuesday, June 12, 2012

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?

Friday, June 1, 2012

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 21st so now we just wait…

Wednesday, May 23, 2012

Anesthesia Appointment...


Spencer at 8 and a half months...
Today Spencer had his anesthesia appointment. It was a quick appointment where they checked Spencer’s base health, meaning his blood pressure, his heart rate, his chest, and his weight. I’m happy to report that they were pleased with all. Spencer is right where he should be and is physically ready for the surgery. The anesthesiologist didn’t really tell me anything I didn’t know before going into this appointment but she did say that they had to inform us of the risks. The risks are small but of course there are risks with any surgery especially one as big as this on such a little baby.  There are risks of bleeding which they handle with a transfusion which I already knew and then there was one I did not know about. That is a fatal one called an air embolism where air can get into the blood stream and if not caught quickly can cause death but has not occurred at Sick Kids during this surgery yet and more importantly never with Dr. Philips throughout his entire career as I understand it. So I have to say that Spencer is in good hands and still trust that the outcome will be worth the risk. Even though he is so cute now the condition of Cranio Synostosis is still evident and will probably get worse as he grows. The doctor today was so sweet and told us that they treat every child as if it is their own. They are all so gentle, calm, caring, and more importantly skilled. They make sure he is in no pain and that he doesn’t even have the IV poke until he is under so that gave me some comfort as well. I did learn one thing today that I did not know previously and that is in regards to the blood. The doctor said that they basically treat the blood as if it is a drug; this way they do not give too much or too little and they check and recheck 3 times with 3 different people ensuring that the blood in the OR is the blood intended for Spencer and not another patient.

 I can’t wait for this whole thing to be over. Next week we have the CT scan and then that will be it until surgery.

Monday, May 7, 2012

An amazing e-mail...

Hi Alana,
Don't know if you remember me my name is Cassy we met at Sick Kids in the opthalmology clinic. My son Eli is has Saggital Synostosis. I have been following your blog and noticed that Spencer has a surgery date. Eli has one also, June 7th a few days after his birthday, his birthday is June 2nd so at least he will be able to enjoy it. So glad to hear that both of our boys don't have any pressure and both have healthy optic nerves. YEAH BOYS!!! I just wanted to tell you how much I am enjoying your blog. I know that I only met you for a short period of time but you know whatt they say. "Actions speak louder than words." and your actions through your blog shows a lot about you. And I am accurate in saying that I can tell that you are a very giving person to share you and Spencer's story and journey. I can't even begin to express to you how much you have helped us through this. I just wanted to say thank you for your time and effort with all of your research and most of all your bravery for sharing your and Spencer's story. Please keep posting during Spencer's recovery I would love to continue to see how he is doing. Eli is now crawling and into everything. The good thing is I'm losing weight as I am chasing him all day long. LOL!!! So have fun when Spencer starts.
I'm not very computer savvy but I will figure out how to send you some pictures of Eli's journey. Thanks soooo much for all that you are doing.
Thinking of you and Spencer
Cassy
Dear Cassy,
First of all, of course I remember you. It was a pleasure meeting you and Eli. I'm so glad to hear that your son doesn't have any pressure and has healthy optic nerves as well, what a relief. I'm also glad that I could help you through this most difficult time. Thank you for your kind words. It is not easy to write all the time but knowing that I am in fact helping people makes it a bit easier.  Now that we have a surgery date it makes everything all the more real. But I am going to continue this no matter how hard, so that I can help as many people as possible and create awareness about Cranio Synostosis. Spencer will be having two appointments in May, one being his anesthesia appointment and the other being his CT scan. Has Eli had these appointments yet? If so, how did they go? I would love to stay connected with you and be kept up to date with Eli's surgery and recovery as well. On a happier note Spencer is doing the army crawl as well and is probably days away from crawling. I can't wait, he is such a busy little boy already. I have a feeling he is going to be my trouble maker and get into everything...LOL...
Anyway, please do keep in touch and I wish you all the best with everything.
Thinking of you guys as well.
Alana

Wednesday, April 25, 2012

The Date Has Been Set!


I received a call from Sick Kids Hospital today. It was Alan George, the coordinator for the Cranio Facial Clinic. He called to tell us that we can have June 21st as a surgery day if it works for us. He also went on to say that Dr. Dirks, the neurosurgeon we saw was not available and therefore we would need to go ahead with another surgeon. At first I was concerned about this. I was comfortable with Dr. Dirks doing the surgery so I was nervous about what he was going to say next.  But then he told me that the new neurosurgeon taking over Spencer’s case would be Dr. James Drake the Chief of Neurosurgery. I was quite pleased.  Alan asked me if we wanted to meet with him first before setting the date so I then asked, “Do we have to? If he is the chief, I am more than thrilled that he will be performing the surgery and really do not feel the need to meet with him.” I’m very reassured that Spencer will be in good hands with the Chief of Neurosurgery.

When I looked up Dr. James Drake this is what I found. Dr. Drake was born in London, Ontario, and educated at Princeton University (1969-1974), Royal College of Surgeons in Ireland (1974), University of Toronto (1986-1987), and Royal College of Surgeons of Canada (1987). Training included a research fellowship funded by the Medical Research Council of Canada (1986-1987) in Hydrocephalus. Assumed his appointment in the Department of Surgery, Division of Neurosurgery in 1988, and has been on the surgical staff at The Hospital for Sick Children in the Division of Paediatric Neurosurgery since then.

I think these credentials speak for themselves. So now we know, Dr. Philips will be doing the Plastics part of the surgery and Dr. Drake will be doing the Neurosurgery part of the surgery. Knowing that these doctors are both very capable, educated and skilled doctors eases the mind a little about what our baby is going to be going through.

After this part of the conversation ended Alan George (the coordinator) went on to tell me that he had some other bad news. Spencer’s blood is B +. I am A+ and Steve (my husband) is AB+ which means neither of us is a match for Spencer and he will have to receive blood from the Canadian Blood Service. This upset me a great deal. I know that everyone says that the blood service is safe and reliable however I do have my doubts. Unfortunately now we won’t be able to control what he gets, we won’t be able to build up our iron to help him. We have to put our faith in the “system” and pray that every drop he gets is safe and untainted. Alan explained that if he gets either of our blood the “antibodies we have will cause clumping and will do more harm than good” so Canadian Blood Service it is.

We have two more appointments coming now. One is a CT scan which will be some time in May and an Anesthesiology appointment also to happen in May.

Other than all this Spencer is progressing amazingly well. He is such a happy, outgoing, energetic little boy who is going to be crawling any second! Can’t wait for the fun to begin when he doesn’t sit still for a second! 

Spencer at 8 months

Monday, April 16, 2012

Out of the mouth of babes…


I took my older son skating this week for his final lesson and I had a very interesting and shocking experience that I wanted to share with everyone. Usually my husband Steve comes with me but he had a prior engagement so he couldn’t come this time. This made it harder because that meant I had to put Eidan’s skates on and all the other gear as well as watch Spencer at the same time. Spencer was having a fussy afternoon as he is teething so I had to hold him. I got Eidan ready, took him to the door where he goes on the ice, I put Spencer in a cute snowsuit with a hood and proceeded to watch Eidan’s lesson. A little girl came up behind me, she could not have been more than 4 years old, and asked if she could see the baby. So I of course turned Spencer around and the girl talked to him, made him laugh and was really sweet.  But the next thing that came out of her mouth blew me away entirely. She looked up at me and said every so sweetly “why is one of his eyes bigger than the other?” I was dumbfounded. I couldn’t believe that she even noticed. I don’t know if the hood emphasized it or if she was just extremely observant. I did not know how to answer her. All I could think of was that “now the decision is made FOR SURE” surgery is the only option since a four year old picked up on it. Thank goodness he is too young to know or this for sure would have upset him. Luckily I did not have to explain as the little girl’s mother called her as it was time for her skating lesson! I don’t know if I even had an answer to give her. To an adult it’s easy to say he has Cranio Synostosis, explain it, say that it will be fixed and it is cosmetic but what do you say to a 4 year old? All the while I am wondering if my older son Eidan who is also now 4 has ever noticed anything about his brother. He has never said anything so I don’t think he does but you never know what runs through their heads. This also makes me think about how many adults we see and what they must think of Spencer. I find now I am very self conscious for him and I am constantly watching people’s faces as they interact with him. I am also wondering about what people will say or not say when they see the scar that he will have after the surgery.
Eidan and Spencer