Sat August 24
I went for a run today. It was the worst run of my entire life except for maybe the time as a teenager when I fell and had rocks embedded in my knee. Today was over 90 degrees but there was a wind and I really needed to get out of the house after being home for 5 days without leaving except to hang out at a hospital. Running always seems to clear your head and you have nothing else to do but think and listen to Pink blaring in your ears. Half way through the run I started crying. I had no idea how much I had been keeping locked up inside. It was very cathartic and something I really needed. I feel better now, empowered. I can handle almost anything :)
This post will probably take me several days to finish. I just do not have the time right now. I will post the date I write each section, but, I will follow the events in chronological order.
Sofie's surgery lasted just over 2 hours and went very well. At some point in the pre op stuff it was mentioned that she would have a palatopharyngoplasty and not just a pharyngoplasty. The difference is that instead of her palate being just elongated and narrowed, they would be taking the prior palate repair apart and redoing it and elongating it and narrowing it. I missed all that. I don't know if I was out of the room, not listening or had just blocked it from my consciousness because it was more than I could handle. I didn't find out until 2 days later. Some things happen for a reason. She has over 100 stitches in her tiny little mouth :(
She woke up in the recovery room and proceeded to scream bloody murder for 2 1/2 hours. Nothing would touch the pain at all. She would fall asleep for 2 minutes and then wake up and scream. Her breathing was awful and she couldn't swallow so all she did was gurgle. Suctioning her was difficult with all the sutures in her mouth. We had been trying to stay away from morphine as it made her itch before. Not an allergic reaction, just itchy. It is a side effect. It was the only thing that worked and it would only give an hour of pain relief but could only be given every two hours. It was a nightmare and I felt so bad for her.
Sun August 25
We finally reached our room where the afore mentioned scenario went on for the rest of the day and all night. She was itching like crazy from the Morphine, but, the Benadryl seemed to take the edge off. She would have about an hour to hour and a half of comfort and then she would get agitated and start screaming. Her breathing sounded awful when she was sleeping. During the night her O2 sats dropped into the 80's periodically so she ended up on oxygen all night. The alarm on the O2 monitor went off all night and none of us got much rest, including Sofie. By morning we were convinced that we were staying another night. She was still on morphine and oxygen and I just couldn't see us going home that day at all. Suddenly, right before the doctors made rounds, she perked up. Jim and I were looking at each other with a stunned look on our faces. This child knows what to do to be sprung from the hospital. She continued to improve throughout the morning but we had to bribe her to drink. We told her we could disconnect her IV pump is she drank half of her apple juice. She did. The clincher to the deal was when she started riding the tricycle up and down the hallway towing her IV pole and pump. That is not an easy task let me tell you. She doesn't slow down to let you and the IV pole catch up. We made it home by 4:00 pm. It has been up and down since then. This is by far the most difficult and painful surgery she has had to date. It has been hard, hard on everyone.
Mon August 26
Sofie finally turned the corner today, or so I hope. She has perked up a little more. She is eating a little bit and is finally drinking fine. We are going to try just Tylenol and Ibuprofen tomorrow. She snores and coughs all night long and sounds like a freight train when she is breathing. She it irritable and angry and every time she has to take any medicine, it is a fight. My Mom and I had to hold her down today. I haven't had a full nights sleep or even half a nights sleep for a week now. Neither has Jim and neither has Sofie :) Ainsley is completely out of synch and stressed out. She is acting up and being very defiant. Today was better for that too. Baby steps.
I want to extend a very heartfelt and warm thank you to my Mom and Dad and Aunty Joyce who came down this week to help us with Ainsley and Sofie. We would have been lost without them. I am overwhelmed with their thoughtfulness and generosity of their time and love. We had a warm meal at dinner every night, dishes were done, laundry was even done and I didn't have to buy or go out to get any groceries. I love you Mom and Dad and Aunty Joyce and we truly appreciate all you have done for us and our girls. I am going to miss the muffins :)
I am not going to sugar coat it, this was the toughest thing we have ever done. None of the other 3 trips to the OR remotely prepared me for this. It is brutal and tiring. Nothing like her prior palate repair. She is very angry and keeps asking me WHY as she points to her throat. It breaks my heart. We will not know for 2-3 months whether or not the surgery worked. If it didn't, we will be going back to the OR again. She will be prone to sleep apnea and will not be able to breath through her nose for at least 2-8 weeks. Her voice and the tone of her voice has totally changed. I was not prepared for that. I am hoping that once the swelling goes down it goes back to normal, but, only time will tell. I miss her little giggle and her voice. This is so much harder to write than I thought it would be. Wow, this is hard. The words that she was able or almost able to say are much clearer now which is a fantastic blessing and very uplifting. The phrases and words that she did not say very well or properly have totally changed. It is like she is speaking a totally different language and none of us understand it at all. It is so frustrating for both her and us. All the things I used to understand or be able to figure out are just gone now! I looked in her mouth and almost started crying. I don't know why it is so different than the palate repair? She had just as many stitches for that surgery as she does for this one. It just really bothered me to see it looking so differently. How do you explain to a 4 year old who is much wiser than her years why Mommy and Daddy took her to have her mouth fixed again.........baby steps :)
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