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.

From Mother to Mother…

First and foremost I want to thank everyone for all the wonderful messages and comments that you have sent. The outpouring of love, support and best wishes has been overwhelming. I will address some of your questions later in my posts but for now I would like to share an experience that we recently had.

When I told my cousin about Spencer’s coronal synostosis she immediately told me that she knew someone whose daughter just had the same exact surgery and told me she would put us in touch. So the very next day I was given a phone number to someone named Deborah. At first I was really apprehensive about calling her as calling strangers is not something that I am comfortable with. But I quickly realized that I had to put aside my fears and pick up the phone.  It would probably be worth a phone call. Needless to say it ABSOLUTELY was. I could not believe how welcoming, supportive and forthcoming Deborah was. Our conversation flowed as if we have been friends for years. It turns out that her daughter, Chloe, has a different but similar condition. Her daughter had what they call Sagittal Suture Craniosynostosis (this is the condition where the suture running from front to back of the skull is fused) the surgery is not exactly the same however it is very very similar. Her daughter was only five months old when she underwent surgery. Deborah talked freely about the whole ordeal. She shared her fears, she shared information about the actual surgery and allowed me to go on and on with my questions, one after the other. It turns out that not only do both our children have similar conditions it turns out that Spencer will have the same surgeon as well, Dr. Phillips of Sick Kids Hospital. Deborah also shared many things that I wouldn’t have even thought about, like telling us that we should have clothes that don’t go over Spencer’s head for the first little while after surgery as it can be uncomfortable.  She told us that his sleeping habits (even though they may be great right now) will most likely change and that Chloe did not sleep well for about a month following surgery. She told us that I could rent a breast pump from Sick Kids and store the milk there for him. She told us that every single room has its own private bathroom, and bed for a parent to stay. The best thing Deborah did for me was send me a slide show of pictures she had taken of Chloe’s recovery.  I had some very scary pictures in my head of what Spencer might look like post surgery however looking at Chloe’s pictures was not so scary. She actually looked quite peaceful. Yes, she was very very swollen, and under heavy sedation but it wasn’t really quite as scary as I was thinking. I think she is a brave mother for taking and sharing these pictures and I hope I will have the strength to do the same.

Sick Kids Hospital & Surgery

I have to say that I feel extremely fortunate that we have the health care system we do and the most amazing hospital to deal with. Sick Kids Hospital does this surgery at least once a week. Although Coronal Synostosis is not a common condition, (it occurs 1 in every 2000 births) it is a common condition at this hospital which makes it easier to cope with as well. The team who will be taking care of Spencer is made up of Neurosurgeons, Plastics, and Ophthalmologists. They do the surgery the traditional way and not the endoscopic way. When I first heard this I was ready to find somewhere that would do it endoscopicly. This way is a much less invasive surgery that involves the use of an endoscope. The endoscope is a small tube which the surgeon can look through and see immediately inside and outside the skull through very small incisions in the scalp. The surgeon opens the suture to enable the baby’s brain to grow normally. This type of surgery is followed by the use of a molding helmet. The more traditional surgery is an incision that is made in the infant’s scalp from ear to ear. The shape of the head is corrected by moving the area that is abnormally fused or prematurely fused and then reshaping the skull so it can take more of a round contour. Over the years a perfect mold has been made (so there is no more Art in it) and they use that mold to create the “perfect” head. Surgery can last up to five hours. The baby spends one night in the NICU plus an additional 5 days in the hospital for monitoring. Another major fear that I have is that there is likely a blood transfusion that will be necessary during this type of surgery. I confronted the doctors about why the endoscopic surgery is not done here and they basically explained that in their research it is not as effective as the traditional surgery and it usually requires a second surgery later whereas they have found doing it the traditional way is one surgery, no helmet and very little complications later on. I have to trust that they know what they are talking about so traditional surgery is the road we are heading down.
In regards to the blood transfusion there is one thing that is comforting and that is that my husband and I will be tested to see if we are a match. If we are than they will bank our blood and give that to him instead of having to go to the Canadian Blood Service. I am hoping that my husband is a match as they will be able to use all of his blood whereas if I am a match they can use parts of my blood but not my plasma. We were informed that the Canadian Blood Registry is not currently using female plasma in surgeries and I’m not exactly sure why. This is one thing I am going to look into and post soon. 
Our next two appointments have arrived in the mail and this is what they are. On March 30^th we will be seeing an ophthalmologist to make sure Spencer’s optic nerves are still healthy and that all is progressing as it should. We had an appointment a little while ago because we were concerned that he was not seeing but we know now for sure he is as he grabs for things, recognizes people’s faces and is overall meeting all of his other milestones. He is even trying very hard to crawl. On April 13^th we will have our next Plastics appointment, where we can ask more questions and inform them of our decision to go through with the surgery. We have pretty much decided now that we will be going ahead with it and it looks like it will take place in June.

 

 

Spencer at one month

Spencer at two months

Spencer at three months

Spencer at five months