The first surgery was 2.5 hours behind schedule, because it took the anesthesiologist that long to get an IV into Kayli's veins. Kayli is a very hard stick, because her veins are the size of a hair and they are deep. The anesthesiologist had difficulty even with an ultrasound! The best person to access an IV in Kayli is usually an anesthesiologist or a NICU nurse. The NICU nurses are experienced in getting IVs in the tiniest of veins, as they work with premature babies who have similar vein sizes as Kayli does.
The orthopedic surgeon went into the heel cord release with a hope to correct Kayli's club feet with a 50% correction in ankle position. We knew the likelihood of her getting Kayli's feet to position at 90 angles would be slime, but we had hope to get her as close as possible to the proper position. The ortho surgeon decided to apply an "I" shaped incision rather than going in percontaneously (small hole for instrument incision). She needed to have a clear view of the tendon, as there was scar tissue to work around from Kayli's previous club feet surgery. The surgeon had a good view, and released/cut the tendon so that it has no contact with her bone. This procedure was to release any positioning restraints that the muscle implemented. Once the tendon was released, Kayli's feet did not release from the poor positioning. Xrays were taken in the OR, and the test revealed Kayli's joints were progressing into the club foot typical malformations. No matter the tendon release, the position of her feet are not easily correctable. Kayli's ankle position was only correctable at 20%.This was disappointing news. Kayli's feet ARE better than they were prior to the surgery, and we are still able to get her in AFOs so she can stand again in her stander (which she loves!), but her AFOs will need more adjusting now. Kayli will have her very own pair of High Heel Wedges now! Once out of her casts (in 3 weeks), she will be sporting high heel wedges (braces). We will visit the corrective joint (MAJOR) surgery discussions as Kayli's function deems necessary. The surgeon who once thought Kayli was minimal/non-functional, has now declared she believes Kayli may one day, need in some way need more functional foot/ankle positioning...and is anticipating reviewing Kayli's needs in a year! It was a beautiful moment, when I heard the hope in the once disbelieving dr's words and tone! The surgeon was pleasantly surprised when she saw and heard another dr's accounts of Kayli's abilities to feel pain, knowledge of what was happening to her, and responding as any other "typical" person would. Kayli has made another surgeon a believer in her! <3
Kayli's wedges (afo's/braces) will be molded in 3 weeks when she gets her casts off. She will have the wedges within 24 hours and will wear them 23 hours a day to maintain the corrected positions. She is no longer allowed ankle physical therapy/range exercises because her ankle will likely break if forced out of her current joint positioning.
The next procedure was a little complicated, because the resident ENTs were unavailable to examine and/replace Kayli's clogged ear tube in her left ear. This compromised the test results. Kayli's left inner ear is "dead" in the audiologist's words. She has profound hearing loss in her left ear. Her right ear is ever so slightly diminished from her previous results. She continues to need aiding in her right ear. The audiologist is referring Kayli to another audiologist who specializes in Cochlear ear implants because he believes Kayli's hearing may be correctable at the inner ear level. The ABR (test) audiologist is sharing his results with his colleague, and I will set up an appt to further discuss the cochlear treatment options.
After surgery: Kayli's heart rate was pretty high and she continued to cry. The surgeon said the pain is typically not bad with this surgery, but Kayli was showing otherwise. She was given Fetanol in surgery, and twice after surgery, and Tylenol (IV form). She did not find comfort until they gave her large doses of pain meds. Her casts appear to be too high on her thigh, and are causing red marks and pain. I have a call in to the ortho office, requesting consult on the new cast positioning.
Kayli had a good night last night, and went to school today. She cries out in pain when you touch her casts, but relaxes when she is not moved. She was without food from midnight yesterday morning, until we started feeding as we left the hospital last night (apprx 5:30pm). She is tolerating her feeds well, and has stayed in Ketosis! :D