Well... we made it! I couldn't be happier to have the surgery behind us! I had the best intentions of blogging while sitting in the hospital but to be honest, I was struggling with what to say. I still am! It has been an emotional roller coaster. Thanks to the outpouring of love and support, Brian and I were busy answering all of the amazing calls, texts, emails and Facebook media posts that by the end of the day I was too exhausted to write anything coherent.
It is absolutely necessary that I start by thanking EVERYONE who reached out to us and our families over the last week. I hope I've thanked you personally but if I haven't, I apologize! The amount of prayers directed our way undoubtedly carried us through the toughest hours. We are forever grateful to each of you for keeping Finn, his parents and his doctors in your thoughts.
In the efforts to help other cranio parents that are reading this, I feel I should give some detail about our experience. I have decided to leave out the nitty gritty details but if you are a fellow parent reading and want more information, I have timelines and notes galore so please feel free to contact me.
Overall we had a very positive experience. It's hard to say that this was a positive experience given the nature of the surgery and the fact that Finn is so little but it couldn't have gone any smoother. Obviously there were a lot risks involved and we cried... a lot... but the surgeons were very happy with the surgery itself and the outcome. We could not have been happier with the team of doctors who treated him. We are very fortunate to live in a major city with a Children's hospital.
The surgery was exactly 3 hours long. The neurosurgeon's part was first and took about an hour and 40 minutes and the plastic surgeon's about an hour and 20 minutes. I have to say those 3 hours went by a lot faster than I imagined they would. The OR nurse, Tammie, called us every hour, if not more, to check in and give us updates. That certainly helped. I will never forget Tammie's face. She was the sweetest woman and the one I handed Finn over to at the OR doors. She carried my little baby away! At about 8am they administered Versed which is used to produce sleepiness or drowsiness and to relieve anxiety before surgery or certain procedures. It is also given to produce amnesia so that the patient will not remember any discomfort or undesirable effects that may occur after a surgery or procedure. I am glad he didn't get upset when I handed him over but it almost made it harder. It was just a little weird seeing him so calm, with a stranger, in an unsettling environment. I guess I imagined something a little more dramatic in my head. Too much television :)
Here is the neurologists drawing of what they did to Finn's skull. I am sure it makes perfect sense to you :)
When surgery was over Finn went to recovery and we received a call from his new nurse to say that he was doing great. Her name was Chris. Not Kris. Chris. It was one of those things that made us smile and sign that his angel and namesake was watching over him. It was about an hour until we could finally see him. That part felt longer than the 3 hour surgery. But we knew he was okay and starting to open his eyes so we could officially breathe the biggest sigh of relief. When they brought us into his room in the PICU he looked like a perfect angel. (He actually looked like toadstool from Mario Brothers with his head wrapped up but his face looked unharmed.) He was very groggy but melted our hearts when his eyes cracked open.
That first day was uneventful for the most part. He slept A LOT as the anesthesia wore off. It didn't take long for the swelling to set in though. By night time, both of his eyes had swelled and were black and blue. It was heartbreaking. His first nurse, Rachel, was a darling and stayed on top of his pain meds. His night nurse was not quite as sharp. She may have been my only complaint with CHOA over the 4 days but in her defense she was treating multiple patients versus Rachel who only had Finn.
Wednesday was definitely the hardest day. Lack of sleep was setting in for mommy. Finn was also continuing to swell and bruise but was also gaining conciousness which made it harder for him to sit still. I think that may be one of the downsides of the older kids of who have craniotomies. He was growing less fond of the wires surrounding him and by Wednesday night had successfully pulled out his IV line, his morphine line and his arterial line. Three nurses tried 4 times to start a new one with no luck. That was a long 45 minutes. But his nurse for that shift was a sweetheart and handled it so well. We had him switched to oral meds and I was able to administer them myself. It was chaotic and exhausting but it was also comforting. I knew my little guy was in there under all that swelling and gauze. He was being stubborn and confident and I loved it. He slept well on Wednesday night and by Thursday morning was like a new kid! Or his old self. Either way, he was alert and sitting up and even cracked a smile!! It was the best feeling in the world.
The plastic surgeon's team came in that morning to remove his bandages. It was remarkable to see the difference!! By noon, exactly 48 hours post-op, he was walking around with both eyes open! I can't imagine how frustrating it must've been for him to not open his eyes for a whole day. He never seemed too bothered by it but that is just the kind of patient he was. I am in awe of him and his strength. He was such a trooper and I was one proud mommy.
(Don' t be alarmed by the enormous gliding Elmo balloon in the background. Thank you, Segars!!)
Thursday evening we were finally transfered out of the PICU. His nurse on the floor was in love and ready to take him home. He was eating a slice of pizza for dinner and trying his hardest to hit the Code Blue button on the wall beside his crib. Mr. Personality. It was truly remarkable. Aside from his outrageous hair do and black eye, you wouldn't know there was anything wrong with him. We are very grateful that they didn't shave off all of that hair. It hides the scar well!
We read so many accounts from cranio parents and they all talked about how resilient babies and kids are. I had hoped the same would hold true for Finn but you never know. I must say, he surpassed my wildest expectations!!
He (I) was very happy to be discharged early Friday morning and we went home to see his Cody man! And all of the flowers, toys, balloons and a fridge full of food. Mema kept the house (and Cody) in tip top shape. It was an emotional homecoming for me. We are so very blessed.
I am happy to report that we all slept great last night. I was asleep on the couch shortly after 9:30pm. Finn only woke up once. I gave him some Tylenol, rocked him for a minute, kissed his sweet little head and he was right back to sleep.
I have one last thing that I want to mention. The night before surgery we put Finn down around 7pm. We knew he would be up early on Tuesday so he went down a little earlier than normal. For those that don't know, Finn has been a great sleeper since day 1. (Mema can vouch for that.) He rarely wakes up in the middle of the night. But the night before surgery he did. Around 11pm he started screaming. I went in to comfort him and he was fine. He didn't have a fever and didn't appear uncomfortable. So I rocked him in his glider for a while. Not because I thought he needed it, but because I thought I did. I held his little forehead in my hand trying to remember what it felt like. I kissed the top of his head more times than I can remember. He just stayed there in my arms until I was ready to put him back in his crib. Eventually I did and he went right back to sleep. It was like he knew. (Or maybe it was his molars that we discovered this morning!?) But we'll never know. I am very pleased with the outcome of his surgery and do not regret making the decision to go ahead with it. But I'd be lying if I said I won't miss that old head. It was perfect just the way it was.
(After his first post-op bath!)
Thank you all again from the bottom of our hearts!
Kara, Brian & Finn
*I will try to post some before and after pictures when the swelling improves.
If you would like to see more pictures from the last week, please let me know and I will be happy to pass along the Shutterfly album. Some are hard to look at so I did not blast it. There are no pictures of the incision in the album but I do have them.
**Fellow parents - I have a detailed time line of the events and some tips for your hospital stay. Feel free to email me. karaduffy@gmail.com
*** Lastly, Cranio Care Bears is an amazing organization started by two cranio moms who sends care packages to kids in the hospital recovering from cranio surgery. They are always looking for donations!
http://craniocarebears.org/
"Can't see the line can ya, Russ?" - Clark W. Griswold Jr.
