(the above picture is Briella's feet with the physio tape that we were using to stretch her feet prior to her tenotomy)
This time last week, we were in hospital doing all the pre-op consultations for Briella's surgery last Thursday. It was a long day with lots of back and forth-ing. We saw a few orthos, as well as the anesthetist, the occupational therapist and the physio. We also had to get pre-op photos taken of Briella's feet. The plan was made to do the tenotomy with a local anesthetic as well as sedation, which would require an IV and also for Briella to fast from 3am until the procedure, which was scheduled at 10am.
With babies and surgery, I think that often the two hardest things are the fasting and the IVs, rather than the surgery itself. Babies can't go very long without milk, since their tummies are so small - and they don't understand why they are not being fed. That night, I attempted to wake Briella at 2:30am to feed her once more before she would have to fast, but she barely stirred.
As expected, Briella woke up starving hungry on Thursday morning and screamed for an hour before she fell asleep, exhausted. It was the first of at least 5 or 6 times for the next two days that she would scream herself to sleep :( I managed to take her to the hospital without waking her and keep her asleep until it was nearly time for the procedure.
The above picture is Briella in the smallest sized operating theatre gown that they had! I guess it would have fit an average 5 year old - it was double Briella's length!
As expected, they had great difficulty finding a vein for the IV and after four failed attempts, they decided to abandon it and to perform the procedure under a local anesthetic only. In retrospect, I wish I would have insisted on this in the first place. It may have spared Briella from the need to fast, and it would have spared her the pain of four failed IV insertions and the resulting bruises on her tiny hands. The things I will note down in case there is ever a "next time"!
It soon became apparent that the casts would not stay on, and therefore would not provide the best results from this surgery. Instead, they decided to make AFOs with a bar to hold the feet in position.
It was getting to the end of the working day when Briella's main ortho decided that even in these boots, her left foot, which is the more stubborn, was slipping out of her AFOs. Since the orthotic department was closing, we were given one more night of home leave and asked to come back on Friday morning.
On Friday, we came back to the hospital and spent over an hour trying to modify the AFOs in such a way that they would stay on her feet without slipping. Each effort required stretching and manipulating Briella's ankles which were still tender from the surgery the previous day. After exhausting all options, her ortho asked me what I thought about the spica cast. I told him that we better do whatever will give us the best results from the surgery - and while I wanted to avoid the spica cast, I know we do what we have to do.
Putting the spica cast was pretty traumatic for poor Briella - it took about an hour of stretching and holding her little feet to get them into the best position. As the cast goes over both the knee and the hip, it is far less likely to slip and therefore will hold her feet in a better position as it heals.
The first night was pretty rough, with Briella being very uncomfortable and waking every hour or two all night long. She has slowly adapted, however, and is sleeping much better now. She still is far more fussy than usual and I think it is hard for her to get rid of her gas. Before, we would bend her at the hips and rub her tummy, and that would most effectively get it out. Now, her hips are locked in a mostly straight position so she can't bend.
The cast will stay on for about four weeks, at which time we will have to remove it as we are travelling back to Australia for easter. It's not recommended to fly in a spica cast as flying causes you to retain a bit of fluid and swell. Hopefully we will have good results and by that time, the AFOs will stay on Briella's feet better. She will need some casts/splints/AFOs for the next four months, full time, and after that she will need to continue to use them for nights and naps.
Diastrophic club feet are stubborn and often have a high recurrence rate. This is just the start of Briella's "journey". Fingers crossed for a good outcome!
