Fiona was diagnosed with metopic craniosynostosis at 4 months old after me begging for a referral to a specialist from my family doctor. When Fiona was born it was very obvious when I look back that she had cranio, but the OB, the nurses and our family doctor told me that it was because she was breeched.
We met with a neurosurgeon at the Hospital for Sick kids in Toronto when she was 4 months old, he examined her and told us that the only way to fix her skull was with surgery, he told us all the things that could go wrong, I left the office in a fog’..I cried for hours. A month later we met her wonderful plastic surgeon Dr. John Phillips. He is so down to earth and made Keri (my husband) and I feel at ease. He answered all my questions. He told us that Fiona would be in surgery for 5-6 hours, he uses dissolvable plates and screws. Her surgery was set for Sept 26th 2007.she was 10.5 months old. The day of the surgery was full of emotions, handing your baby over is the most heartbreaking thing I have ever had to do, but once I got into the waiting room I felt a sense of calm, I knew she would be OK. I saw her in the ICU with her new forehead, she was beautiful.she started walking 2 weeks post op.
Fast forward, she is now almost 5, she is in kindergarten and is as happy as can be; she wears a helmet at school because we still could feel 2 large open spots where the bone has not grown back. She had her 3 year check up with Dr. Phillips in December 2010. He confirmed our suspicions. She didn’t heal properly, she had a CT done in January and to our surprise most of her skull from the coronal scar is still open, we were in shock. She will be having surgery this fall 2011, they are making titanium plates to put over the soft spots, she also had bone reabsorption over her left eye, they are making an implant out of PEEK material to help contour her forehead. She also had too much bone growth between her eyes so they will be shaving down the bone, they also are going to fix her scar, they are going to make it thin because it’s very thick right now. We were told this will be a 4-5 hour operation; she will be in the ICU for a night and on the regular floor for 2-4 days, she will have the drain tubes again. She is having this surgery on Oct 18 2011.
UPDATED: Fiona’s 2nd surgery
The night before her surgery I didn’t sleep more than 2 hours, I was so nervous. We had to set the alarm for 4:30am to leave the house by 5 to get to the hospital for 6.
We got to the hospital about 5:30 because the traffic was so light. We registered on the first floor then they sent us up to the 6th floor. We met with a nurse who asked us a ton of questions and took her vitals. Everything was perfect so we were sent to the 2nd floor.
When we got into the waiting area, there were a ton of beds with kids in them waiting to go in for surgery. The child life specialist we met a couple weeks before (Katie) came over and played with Fiona, they did crafts for about 45 minutes. About 7:30 the anesthesiologist came in to meet us, he was super nice. Fiona decided she wanted to smell the bubble gum flavor in her mask. A little while later Dr Phillips came out to talk to us, he went over what he was going to do and Keri signed some papers about it, he kept saying that he would take great care of her.
About 8:00 a nurse came out and said “Ok Fiona give Mom and Dad kisses and hugs”. I think I grabbed her so tight and just kept saying over and over “Mommy loves you”, then Keri gave hugs, she got up and took the nurse’s hand and walked in on her own. Once I saw her walk through the doors I lost it. I cried harder for this surgery then I did for the first one. Keri stood and held me for a couple of minutes, then the volunteer walked us into the waiting room to register with them so they can keep us updated.
They booked the O.R for 5 hours. The surgery only lasted about 2.5 hours, the other hour was all the preparation before hand.
About 11:30 I saw Dr Phillips walk into the room, he brought us into one of those little side rooms to talk in private. He told us that all the titanium plates and the PEEK implant fit like a puzzle, it was perfect and he didn’t have to do any adjustments at all. He said that she was in the ICU and that they would call us in when we could see her. He told us that he would check on her before the end of the day.
We finally got to see her around 1pm. Right when we walked in, I started crying I could totally see the difference on her forehead right away, her “speed bump” was gone, the indent about her left eye was gone and the top of her skull was not pulsating anymore.
The nurse that was taking care of her told us that she was really out of it. So I said “Fiona it’s Mommy” in a louder voice, she opened her eyes right away then went back to sleep.
I could see that her left eye was already starting to turn black. She had a drain tube in and 3 IV lines. The nurse told me that she was loosing a lot of blood (more then normal) and that they were going to watch it. In the evening, she was more awake, but very cranky. They had her on morphine drip and Tylenol suppositories. She was still losing a lot of blood so they did a test on the blood from the drain tube. Her BP was very low, They told us that her HB level was at 80 which was low, they were going to test it again and if had gone down to 70 then she would be getting a transfusion. I was so upset because I was told that the chance of needing blood in this type of surgery was 0-2%. But thank the Lord, she didn’t end up needed it.
I asked the nurse if we could sleep us in her room that she was going to be transferred to, but they told me that she was going into the “observation room” when she went upstairs, there is a nurse in the room at all times, they did set up a bed for me so I could get a couple hours sleep. Keri went to his sisters. When I finally got settled in, my cell phone rang. It was her ICU nurse, she told me that Fiona was asking for me. I went downstairs so fast, when I got in there, she was crying. She kept saying she wanted to go home. My heart was breaking. She was scared. I finally got her settled down and back to sleep, at that point I had been up for 20 hours straight. I was exhausted but running on adrenaline and tea.
About 7am Fiona was brought up to 8C (plastics/burn ward). Her eyes were starting to swell shut. She had a low grade fever, her BP was finally stable. They gave her some apple juice. She threw up probably about 6 times during the first day on 8C. They gave her gravol when they gave her the morphine. They had to keep giving her the Tylenol suppositories because she would not take the oral meds, she would spit them out or throw them up. She hates taking meds.
The night was rough, there was 2 babies and another child in the same room.
Fiona was pretty miserable. She was not peeing too much, they were worried about that, but she did start drinking and slowly eating. They removed her drain tube, it was in an extra day because of all the blood she had lost. Keri and I went for breakfast at that time because I just didn’t have it in me at that point to watch it, I was a total mess. The child life specialist and 2 nurses were there. They told me that she was more angry then anything. We got to take her for walks in the wheel chair, she liked it but she got tired easily. The night was hard, she couldn’t get comfy.
Day 4 (Friday): She would NOT take any pain meds, so they decided to give her a half dose of morphine in her IV, the nurse came in to put it into her IV and Fiona started saying “my hand is wet”, so the nurse looked at her IV and saw that it had fallen out, and the nurse from the night before had already taken the one out of her foot. I started freaking out because I thought that they were going to have to stick another IV in her. The amazing child life specialist worked with Fiona and told her that she had a choice, it was either taking the antibiotics by mouth or they had to put another IV in. After a ton of tears she decided to take the meds orally. It took a long time to get them into her, but she did it. This was day 3 of her eyes being swollen shut. We gave her a bath with the nurse’s help, we finally washed her hair, she liked it. She hated getting her eyes done every few hours, they had to wipe them they put ointment in the lids, she cried every single time.
About 8:00 that evening she was laying in her bed listening to her DVD player and she said “Look Mommy, my eye is open” I have never been so happy in my life. She wanted to get out of bed right away and go to the playroom. She drew a picture and after about an hour the other eye opened. I knew the next day we would be going home. It was still tough getting the antibiotics into her.
Day 5 (Saturday): Home day!! Fiona was happy when she woke up, her appetite was still not where it should be, but she was drinking a lot. The dr on call came in and told us that even if she only had one eye open they would have sent us home, but when we examined her he was surprised that both eyes were really open wide. Her bruising is pretty bad, it’s all over her forehead, her eyes and the top of her skull, even her eye ball is bruised.
We got home and I had to get her antibiotics from the pharmacy, it took me forever to get it into her, she is so anxious about it. I have to threaten her with having to take her back to the hospital to get an IV (they told me to say this) but it works.
I got her settled into bed and propped up some pillows, then I hear her screaming…..I ran into her room and her nose is bleeding like crazy, I tried to stop it and a huge clot came out and then another one, I freaked out and called the nurse on the 8C ward. She called the plastic’s dr on call and they told me to take her to sick kids ER. I was so upset because we had just gotten released. We took her in and her vitals were fine, they think it was because they hospital was so dry. I’m going to put a humidifier in her room at night.
Overall, I found this recovery so much tougher then the first surgery, she is older and can tell me how she feels. It was so emotionally draining. We had a lot of bumps during the recovery, I’m sure there is so much more that I’m leaving out, I’ll type if I remember anymore.
Dr Phillips or his fellow checked on her everyday, they were happy with everything. Dr Phillips saw Fiona when she was walking with her eyes swollen shut. He was so nice to her but she would turn away from him. The day before the surgery, she told me that when she saw him she wanted to throw a fish at him, he thought that was funny.
All the nurses thought Fiona was awesome, she has such a personality, she was super nice to them until they had to touch her, then she would yell at them and tell them that she wanted to throw garbage at them.
I’m so proud of my little girl, I know it was tough on her but now this is finally OVER!