Appointment with Ophthalmologist

On Tuesday, November 5th we met with Dr. Hutcheson to see how Bryce's vision was measuring and to get an idea of where he was before his surgery.  She dilated his eyes and put him through a bunch of tests, and so far so good!  Huge relief!

However she did say that about 50% of the children that have coronal craniosynostosis need eye surgery, so she wants to monitor him closely.  He will probably need to see her for the next 3-5 years depending on how he's doing.  So Bryce will go back to see her in February once he's all healed from his surgery.

Also if he does need eye surgery she said the procedure is pretty quick and he would be out of the hospital the same day.  Nothing compared to his cranio surgery.

On our way out of the hospital we happened to walk by the family services department.  We decided to walk in and see what it was all about and were so happy we did.  We learned they have something at Children's called Child Life Services.  We met the manager of the Child Life department and the manager of the social work department.  Both women were extremely helpful and encouraging, and the Child Life Specialist walked us around the PICU (pediatric intensive care unit) and explained to us that Bryce will probably be there for at least one night and then will be moved to the neuro wing.  We talked to her about Bryce's surgery, visiting hours, the type of room we will be in and so forth.  She encouraged us to rotate sleeping at the hospital and to have a plan for visitors, sleeping at home, friends bringing us food, etc.  She also talked to us about Kaylin, if we should bring her to the hospital, how and when to explain Bryce's surgery to her, etc.

In the meantime:

We had a wonderful Halloween!  Cinderella and her little cute mouse were so adorable and had a blast trick or treating.

Bryce is so strong and is sitting up so well now!  He loves playing with all his toys and grabbing everything in sight.  He's rolling over a ton and also enjoys being on his tummy a lot more now than he used to.  He's getting so big!

We have a plan

Bryce's surgery will be on December 10th at 7:30 in the morning.  We will have a pre op appointment with Dr. Myseros (Neurosurgeon) on December 5th.  We will also donate blood on the 5th at Children's in DC.  We are all O+ so hopefully nothing will be wrong with our blood and he can have ours.  We are only allowed to give 1 unit each, and Bryce only needs 2 units for his surgery so we should be all set.

I thought I would feel a great sense of relief now that the surgery was scheduled....

I am happy we have a plan and can schedule things but also feel nervous/anxious/sad because now that there is a date, it feels very real.  Most days I'm fine and am very positive about the whole thing.  Then I have days like today....I'm sad and nervous and angry that he has to go through this.

So since I have nothing positive to say I'm going to stop writing.  Anyone ever seen Debbie Downer on  SNL?  I feel a little bit like her today.  But I can't help but crack a smile at this skit.  Everyone is totally cracking up.  And who knew Debbie herself had a 2 year stint at Children's?!

http://www.nbc.com/saturday-night-live/video/debbie-downer/n11825/

Grateful

It was weeks ago that I sent the link out to family and friends about this blog and the response we got was SO amazing.  We are extremely lucky to have such wonderful people in our lives and couldn't be more thankful!  We've received visits, calls, emails, texts and so much love and support.  We truly are blessed to have so many people thinking and praying for Bryce.  Thank YOU!  We love all of you!

Bryce turned 5 months old on the 14th and is rolling over a ton,  loving tummy time and trying to sit up by himself.  He also loves to jump up and down either on our lap or in his exersaucer.  He likes to pull my hair (and Kaylin's!) and is still spitting up like a champ.  He's very into grabbing our faces as well.  Nothing makes him happier than a nice slobber on Ray's face.  It's so cute how much he loves his Daddy.  He probably looks at Ray and thinks, "Man, my Daddy looks just like me!"

We are still waiting to hear when Bryce's surgery will be scheduled.  I called earlier this week and talked to both surgeons' schedulers.   Hopefully we will have a date by the end of next week.   The plan is still to have surgery in about a month when Bryce is 6 months old.  It's less than a month away and the anticipation is not fun.

In the meantime we scheduled an appointment with the ophthalmologist.  We go to DC Childen's hospital on November 5th to meet with Dr. Hutcheson, and will (hopefully) come away with a baseline on Bryce's vision.

I was finally able to get some pictures of what Bryce's head looks like. When you look at him straight on it's sometimes hard to notice but looking at him from above you can definitely see how uneven his forehead is. His surgery will adjust the left side to be even with the right.

Plastic Surgeon Visit

I keep thinking these appointments are going to get easier but they don't.  Now that I know more, I'm more upset that we didn't insist on getting Bryce help sooner.  I keep going back to Bryce's 2 week appointment and wishing I would have done things differently.  I wish I would've insisted that they refer us to someone instead of just listening to the pediatrician and waiting to see what he looked like at 2 months.  I know I'm torturing myself but I can't help but wonder what Bryce's suture would've looked like so young.  We learned yesterday how great the endoscopic surgery is -- or could have been.  30-minute surgery, small incision, helmet afterwards -  and that surgery has better results in fixing all his facial abnormalities (his nose is crooked, ears are misaligned, chin is crooked) and is obviously less invasive.

The surgery is usually only performed on babies up to 5 months of age but it all depends on what the suture looks like.  Unfortunately for us, Bryce's suture is completely closed from the top of his head all the way down to his eye.  So the endoscopic surgery is definitely not an option.  In hindsight I kind of wish now that I didn't know all the wonderful parts of that surgery. We had a shred of hope that the endoscopic procedure might still be an option, but now know we're planning for an open surgery.  No matter how much we learn about it, it doesn't get any less scary.

Dr. Rogers asked us if we wanted to know all the details and we said we did, so I guess we had it coming.  It's just hard to hear that he could have had an easier surgery.  But then again, maybe not.  Ray keeps reminding me that his suture could've been completely closed when he was born.  We have no way of knowing, so I guess I should stop torturing myself.  Mom guilt sucks.

Things we learned from this appointment:

• Dr. Rogers agrees with Dr. Myseros and wants to do a unilateral frontal orbital advancement to open up the coronal suture that is closed.
• He would like the surgery to be closer to 6 months of age, so around mid November
• Bryce needs to see an eye doctor to check his vision
• He tilts his head slightly, which we thought was due to the torticollis but it's more likely because his eyes are offset (ocular tilt) and that's the best way he can see :(  Problems with vision are likely as Bryce gets older.
• After surgery and Bryce's forehead is straighter/more even we will probably notice his facial abnormalities more.  Fabulous.  
• Dr. Rogers said there is no way of correcting it because his entire face is shifted.  It probably won't be severe enough to try to correct down the road.
• We could still put Bryce in a helmet after surgery to help with the flatness on the back of his head if we want.
• His scar will heal very quickly and should be very thin. His hair will not grow on the scar but if his hair is long enough it will cover it up.  Dr. Rogers said if his hair is a short as Ray's we'll be able to see the scar. (Ray says chicks dig scars)
• The eye doctor he wants us to see is booked until December, but Rogers is going to get Bryce in.  Good to know people I guess :)  Dr. Rogers wants us to have a baseline prior to surgery.
• Next steps are to see the eye doctor, schedule the surgery date, and find out when we can donate blood.  He said blood donation is 2 weeks prior to his surgery date.  Very soon.
• Dr. Myseros and Dr. Rogers will follow up, discuss their opinions on how to approach Bryce's surgery, and get back to us on when/how to proceed. 
• On a lighter note, Dr. Rogers is quite good looking!  Even Ray commented on his looks!  But I guess good looks are a criteria when you're a plastic surgeon.  He likes to talk, explain all the research he's done, his approach, the doctors he's worked with, his time at Boston Children's Hospital, etc. etc.  He's obviously very intelligent and the head of plastics for a reason. 

Dr. Rogers worked with Dr. Proctor who is in this video. Explains all the different types of craniosynostosis, treatment, etc.  Great video:

http://www.youtube.com/watch?v=8l53va7jAzI

Can you feel the brother sisterly love? They melt my heart every single day!  Bryce is so in love with his big sister and as you can see the feeling is mutual.  They're so sweet together. 

Bryce weighed 17lbs 8oz yesterday.  10 days short of his 5 month birthday.  He is a tank and definitely fits his nickname, B Chubs.

Second Appointment with Neurosurgeon

On Thursday, September 19th we met with Dr. Myseros and reviewed Bryce's scans.  Ray and I had viewed the CD at home and could very clearly see that the suture was closed.  So we knew we would be discussing surgery options and where to go from here.  We had several questions typed up for him and after he told us the basics of what his part of the surgery would entail we went through our list.

• The next step was to see Dr. Rogers, the plastic surgeon for a consultation (we made that appt for Oct 4)
• The optimal time for Bryce's surgery would be when he was 6-9months old (mid November-mid January)
• Bryce would have a surgery called a unilateral frontal orbital advancement
• Bryce has Coronal Synostosis
• Bryce's left coronal suture is closed
• Dr. Myseros's job was to cut into his skull and open up the suture enough so it wouldn't close too early again
• Dr. Myseros starts the operation.  His part should take a few hours and then Dr. Rogers finishes.  He said the operation should take about 5-6 hours total.
• Bryce will be cut, ear to ear, across the top of his head. Huge surgery, huge cut, very scary but I know he's going to be ok.
• His hair will only be shaved in the area where he makes his incision.
• All is well with his brain.  He will be adjusting his skull so his brain can continue to grow and his head shape will become normal over time.
• Recovery time in hospital is typically 3-5 days.  Once Bryce opens his eyes he can go home.
• He said he may or may not need a blood transfusion, just depends on how things go.  He said we would get more information about how to donate blood from Dr. Rogers at our next appointment.  
• Typically after surgery we will have a 2 week follow up, then a 6 week then go from there to see how often he will need to be seen.
• He said 10% of kids need another operation.
• Bryce shouldn't have any issues playing sports, getting hit in the head, etc. He should be fine just like any other kid.  He should have a normal life!  Phew!

Other questions we asked that Dr. Myseros said have to be answered by Dr. Rogers:

• Scarring - how long it will take to heal, scar to fade, size of the scar, etc
• Will Bryce need to see an eye doctor
• I asked if his nose will be touched or if adjusting his skull will make his nose straighten out

We also asked about the risks of his surgery which Dr. Myseros went over in detail with us.  He explained in depth his part of the surgery and how careful he is.  It's a little too intense and complicated to type about but I know Bryce is in great hands and will be ok.  I never thought I would be writing a blog about my son having to see a neurosurgeon or a plastic surgeon.  But I am so grateful that we live in an area that has the best doctors and care I could ask for.  That truly is a blessing and our experiences so far with everyone has been top notch.

By the end of our meeting his secretary had us scheduled to see Dr. Rogers, and again Dr. Myseros gave me a hug.  He said, "I'm glad I didn't make you cry this time, and don't worry Mom, he's going to be ok."

CT Scan at Children's

Friday, September 13th - CT scan

Bryce's scan couldn't have gone any better, what a relief!  Grandma came in to watch Kaylin (thank you Grandma!) and Ray and I headed to Children's hospital in Rockville, MD for his 11am appointment.  We left at 9:30am and got there pretty quickly by10:30.  We filled out some paperwork and they took us in right away.   I can't say nicer things about the people who work there.  Everyone was fantastic!

We went into the room, they dimmed the lights for us and I fed Bryce.  As planned, he fell asleep as I fed him, I swaddled him up and the nurses helped me put him in position for his scan.  Ray and I got to stay in the room throughout the scan.  The scan took only a few minutes.  He was perfect.  He remained sleeping and still the entire time, he didn't spit up and the scan was a success!  Deep breath, huge relief!  

When the scan was over the nurses checked with the neurosurgeon to make sure they were readable (which they were) then we headed to the waiting room to wait for the CD.  

The entire process from the time we got there until the time we left, probably took 45 minutes to an hour at most.  We would have had quite a different day if we had gone to Fairfax Hospital and Bryce had been sedated.  Again I couldn't be more thankful for Dr. Ku and her husband for reaching out to us and encouraging us to go to Children's Hospital.

The lines that you see are the open sutures in his head which allows his head to grow and take shape.  As you can see the suture on the right side is normal, but there is no suture on the left side.

4 month well check

September 10th - 4 month well check with Dr. Ku

Bryce weighed in at a whopping 16lbs 7oz.   I love having a chubby little guy and it cracks me up that he's the complete opposite of Kaylin when it comes to his size.  He is the happiest little boy and we are so lucky to have such a sweet little son.

We updated Dr. Ku on all Bryce's appointments and she reassured us that we were in great hands with Dr. Myseros and Dr. Rogers.  She told us that her husband is the head of radiology at Children's Hospital in DC and that he knows both surgeons very well.  She told us they're the best at what they do and that Bryce was in excellent hands.  I can't hear that enough!

I told her I had spoken to a nurse at Fairfax Hospital where Bryce was scheduled to have his CT scan.  The nurse explained to me that Bryce was going to have to be sedated for the CT scan and that since he had reflux he couldn't eat 8 hours prior to his scan.  Ray and I both weren't happy with having him have to go that long without eating and were very hesitant that he had to be sedated for the scan.  I explained to Dr. Ku as I did the nurse at Fairfax that if Bryce had a full belly he would fall asleep easily.  Also that he never spits up when he's sleeping.  He only spits up when he's upright and moving around.  Dr. Ku explained that if he did spit up while he was sedated he could get fluid in his lungs.  So we agreed we would listen to the nurse and her and not feed him.  Dr. Ku asked us why we weren't heading to Children's Hospital for the scan and I told her Dr. Myseros sent us to Fairfax probably just because it was closer and he deals with both hospitals.

The next morning my cell phone rang and it was Dr. Ku.  She told me she spoke to her husband about Bryce and that he said they could do the scan at Children's without sedation.  I was shocked to hear her voice on the other end of the phone but was overjoyed with her news!  No sedation, yes!  She asked me a bunch of questions about his scan that I didn't know the answers to and then said she would check on everything and call me back.  She called Myseros's office to get the script sent to Children's, and Fairfax Hospital then called me back.  I called Ray and we quickly made the decision to go to Children's.  Why sedate Bryce when we didn't have to?  It was an easy decision and I was so thankful she spoke to her husband.  I was on and off the phone with her all morning and could not be more grateful for her help.

Later in the day her husband, (the head of radiology at Children's) called me and gave me the name and number of who to call to schedule Bryce's scan.  He also gave me his cell phone number, and told me to call him anytime with questions or concerns.  WOW!  When I got off the phone with him I started to cry.  I couldn't believe he was now calling me, checking in to see how we were doing and going out of his way to do what was best for our son.  It was the best feeling to know that we had such fantastic doctors in our corner and looking out for our precious little boy.  Grateful to say the least and a day I will never forget.

This all happened on a Wednesday, we made an appointment for his scan on Friday at Children's in Rockville, MD.


                                                                           First day

And in other news...Kaylin started preschool this week!  She absolutely loves her teachers and is having the best time with all her new friends. Yay!