*** July 13, 2004 ***

We arrived at the hospital for surgery at 5:00 am.  They gave Leah some stuff to swallow to make her drowsy.  She became absolutely tipsy and was singing and laughing.  Everybody in the pre-op waiting area was delighted by her antics.  The Nurses gave her a "Best Baby Award" sticker.

The pediatric ENT surgeon inserted the silicone tubes in both her ears.  He said everything went fine and she was resting comfortably.  He also drained fluid from both ears, there was more in the right ear than in the left.

The orthopedic surgeon started around 9:15 am.  The surgery took about 1 hour 45 minutes.  Pins were inserted...  one in the top of the foot and one in the bottom of the heel.  She also lengthened two tendons by using a zigzag cut and moved another tight tendon on the outside of the foot that was pulling the foot out.

One of my main concerns is that the FSS has a characteristic of malignant hyperthermia (MH), which is a reaction to anesthesia due to muscle contractures.  It has not been diagnosed in Leah, but could become an issue during surgery and may be life threatening.  I spoke with the anesthesiologist before the surgery and he assured me he would use a type of intravenous anesthesia that was non-MH.  He will try to use a laryngeal bag for oxygen but it may not work due to the cleft palate.  He may have to intubate manually, but that also may be difficult due to the size of her mouth, at which point he will use fiber optic.  There were no problems with the anesthesia.  After the surgery, the anesthesiologist informed us that the intubation for her cleft palate repair will be very "challenging" and he wants to be informed as soon as we have a surgery date.

When I went back to the recovery room, she was crying and thrashing around a good bit.  It took about 3 or 4 of us to hold her down so that the nurse could finish hooking her up to the monitors.   Finally, I got to hold her, which was very difficult because of IV tubes and monitor wires hooked up everywhere.  Leah couldn't decide whether she wanted me or her Grandmother to hold her, so we were passing her back and forth a lot trying to keep her calm.  Leah appeared to handle the surgery very well.  She wasn't concerned about having a huge cast on her leg.  However, she wanted to be held all the time.  My mother and I had to take turns holding her and sleeping with her.  Whenever the nurses came in to check her vitals, she would start crying, and being moving about.  Moving about was okay, but she was still hooked up to an IV and monitors, plus we had to keep her leg elevated on a pillow to reduce swelling.  It didn't take her long to start taking a bottle again, which was a good sign.

We went home the next day and spent a couple of days holding her and comforting her.  After that, it was all over.  She was pretty much back to her old self.  And didn't let the fact that she had this huge cast on her leg stop her from doing what she wanted to do.

*** August 2004 ***

This month was spent preparing for Leah's cleft palate surgery.  I've been doing a lot of reading on Malignant Hyperthermia and I am petrified that something is going to happen to cause problems with her airway.

Leah has been trying to crawl and she can sit up by herself.  I have a play area set up for her in the living room while I'm at the computer working.  She entertains herself very well and doesn't seem to mind that I'm not giving her attention 100 percent of the time.  She is a very happy baby and appears to be content.

*** September 9, 2004 ***

We arrived at the hospital the night before for Leah's cleft palate repair surgery.  I was still nervous and stressing over the Malignant Hyperthermia issue.  My mother and I tried to get her to sleep in the crib, but she wasn't having any of it.  We took turns sitting up holding her all night.  She got a little sleep, I think, but she wasn't happy if we moved her at all.

She was taken back for the surgery a little after 8 am.  The nurse called around 10 am and said the surgery started late around 9:30.  A few minutes after that, the anesthesiologist (the same one from her surgery in July) came out and told us that they had a problem with intubating her for the surgery.  It took a team of five anesthesiologists a total of 90 minutes to insert the tube down her airway.  The reason is because her airway is very small and in an anterior position.  After the intubation, her airway was swollen.  The tube will probably stay in overnight in case there are difficulties, and she will be on a ventilator.  The concern is that if the tube is removed from the airway immediately after surgery, and there are breathing problems later, they won't be able to get another tube down.  And, of course, all of this was complicated by her small mouth.  The anesthesiologist has never seen a case like this in all of his years of practice.  It has been more challenging than he thought it would be.

At about 11 am, the plastic surgeon came out and told us the repair went well.  She should stay in arm restraints for two weeks, and must not be allowed to put anything in her mouth.  Unfortunately, because of the airway problem, she will have to remain in the ICU longer than anticipated.  The surgeon will be relying on the intensivist care team in the ICU to monitor her closely and advise him if there are problems with fresh bleeding around the sutures.  The team must be careful not to touch the nasal passage or the roof of her mouth so as not to disturb the fragility of the repair.

I was finally allowed to go back to see her in the recovery room.  I have to admit, I wasn't prepared to see her with the tube in her mouth.  She looked so pale and it was about all I could do not to snatch her up and hold her in my arms.  Unfortunately, I was not able to because her head needed to be kept as still as possible because of the tube.  The surgeon cautioned that it should not be moved around and not disturb the sutures.  Her blood pressure and blood gases were a little low, but her oxygen sats were good.  She was sedated and on pain medication.

She was moved to the Pediatric Intensive Care Unit (PICU).  Her meds were changed in the hopes of raising her blood pressure.  She was considered to be in "critical care status".  About 4 pm, she started to wake up and was thrashing her head, and arms and legs.  She pulled the vent tube out of her the holder in her mouth..  Fortunately, the doctor was nearby.  Not a big deal, but it was enough to scare me to death.  The sedation they had her on was a temporary sedation and she woke up every couple of hours, so we had to monitor her very carefully and try to keep her still until the next dose of medication took effect.  She was also oozing blood and fluids from her mouth and nose.  Normally, a child with a cleft repair would be swallowing any fluids, but in Leah's case, it was all coming out her nose and mouth.  When the respiratory therapist tried to suction out the tube, her heart rate and respiratory drops.  Paralytic medication was recommended, but the doctor wasn't prepared to start it yet.

The orthopedic surgeon came by.  She had heard that Leah was in ICU and came by to check on her.  She had forgotten that I had told her Leah would be having her cleft palate surgery.  She was concerned about the swelling in Leah's arms and legs because she was still wearing a cast from her foot surgery.  She advised us to monitor it very carefully.

She started resting more comfortably around 8 pm.  She does fine, so long as she isn't stimulated.  She rouses a little when she hears my voice or my mother's voice.  Her blood gases are better and a chest x-ray was taken, which was okay.  At one point, she tried to open her eyes and reached her arms out for me.  It was heartbreaking because I couldn't pick her up.  I think it got to the nurse too. 

There were several episodes of the monitors going off, but there was nothing serious.  Mostly when the nurses or therapist would try to suction the tube, or move her, and then she would get upset.  My mother and I decided to take turns sitting with her.  We weren't allowed to sleep in the room, but one of us could sit in a chair, and the other would sleep in the family waiting room.