
Future Doctor
We are back from Philadelphia with a princess in full leg casts. For those of you following the story, our daughter had surgery on both knees to try and straighten them. (Because of her arthrogryposis her knees are stuck in a bent position.) They did some releases in the back of her knees to straighten them as much as the contractures would allow, then they inserted eight plates into the fronts of her knees to stop them from growing. That way when the back of her knees grow, but the front of her knees don’t, it will straighten the knees over time.

As most of you already know we almost didn’t have surgery last Wednesday. In fact we were ready to go home every day we were there. And people were praying. Lots of people. And everything worked out. But it worked out in this miraculous way.
When I was a little girl I read this boring biography of Hudson Taylor. (Note: NOT boring if you’re NOT ten years old and it’s NOT required reading.) He’s the guy who prayed a lot and God provided, often last second or in a way that would make a good movie. Our last week seemed like that.
For reasons we cannot share yet, we needed this surgey to happen now. We had no idea what God was doing by delaying it. From all we knew it couldn’t be delayed or a lot of things would go wrong. So all we could do was pray this was happening for some great reason half the time and beg the surgery would just please work out the other half of the time. You see our daughter had a cough.
Thursday night I was lifting Laelia by her stomach and she coughed. But it wasn’t just one cough. It was a coughing trip. I thought I had squeezed the wind out of her or something. Then she finally said, “I just coughed like So-and-so at school!” Needless to say I yanked Laelia out of school the next day, cancelled the bus and mailed the form I was suppose to send with her that day. She had a very slight, occasional yet persistent cough all day.
Our good friends have a son who has the same condition as our daughter and who also fly the same 3,000 miles to the same doctor in Philadelphia. He had a cough once before surgery. He was fine and then the night before coughed just a couple times before surgery. That was all it took and his family was sent home to California. One slight cough and surgery was cancelled. Now Laelia had one slight cough. This was bad.
Saturday morning I called up Shriners to break the coughing news. Turns out I needed to run this by the anesthesiologist but they weren’t in on the weekends. I talked to a few people, was transferred six times, and finally the on call/charge nurse said to come on over. 3,000 miles and three airplanes over. So we did. And we prayed.
Sunday morning rolled around and we boarded three planes with the coughing monster. The weather had changed and we had hoped it was just allergies. She never had a runny nose or watery eyes or upset stomach or fever or sore throat or anything else. And she would be happy and hyper and fine and then once an hour double over and cough her head off. And it was a cough with a little something going on. Not a dry one. But still I’d forget about it until she’d do it!
Monday our appointment was at 2:00, but everything at the clinic ran late and we didn’t end up seeing anyone for three hours. Three hours! Finally we saw the doctor, his fellow and the nurses and told them in person about the cough. I guess no one I had spoken with on Saturday had passed the word along. At first the surgery was cancelled, and we started making alternative plans (that sucked). The nurse coordinator outright told us Laelia would not be getting surgery. It looked like Laelia and I would have to live in Philly for several weeks at one point. But they had to get the anesthesiologist involved for the final determination. Being after hours (now almost 6:00 pm), we had to come back the next day when he’d be around. So in other words, because of our late appointment we had one more night for the cough to get better.
And it didn’t.
So Tuesday morning she woke up coughing this horrible cough. She saw the anesthesiologist with the cough and he had her cough several times while listening to her chest. She was borderline with no other symptoms and even though we could hear something in the cough, they couldn’t hear it when listening to her chest. He had to pass us along to the head anesthesiologist who would make the determination on whether or not we’d be having surgery. Right before we met with him she coughed this wet, awful cough. We planned to pack our bags home that afternoon and try to get flights back that evening.
Then we met with the head honcho anesthesiologist. He asked her to cough. She didn’t want to. He asked her again. She coughed for him. And it was this beautiful dry cough. Then another beautiful, dry cough at his request. Then another! She didn’t cough again through our entire appointment with him, including a trip to the PICU for surgery instructions. I thought she was cured! It was a miracle!
As soon as we left the hospital she started back up coughing again. It was like everything she’d experienced for days was just put on hold until she could pick it back up again when we left. The same ugly cough was back! Surgery was scheduled for the next morning at 6:30 a.m. She had one more night to stop coughing or it would be cancelled. But at least we were no longer going home that night. We held out hope it would just go away. Maybe she would stop coughing!
Of course she kept coughing. She coughed all night. I couldn’t give her allergy meds since we may have surgery the next morning. I just waited it out with her and held her hand. I didn’t even know if I should prep her for surgery and scare her needlessly.
I had a very small panic attack that night which defied logic because I was ready to go home and at peace with surgery being cancelled. My panic was obviously not listening to how rational and peaceful I was. Charley noticed I wasn’t breathing and his reaction to that was to hug/smother me. I’m lucky to be alive.
(Note: I’ve never had a panic attack in my entire life. I think this was brought on by being woken up in the middle of a nightmare about not breathing and then my heart was already racing so fast it was just downhill from there.)
We arrived at the hospital at 6:30 sharp (3:30 a.m. California time) and she coughed in the waiting room. Once again I mentally packed my bags thinking we were going home.
Then she coughed up the elevator and through her dress change and during her vital checks. In fact she coughed up until the anesthesiologist entered the room. Then she was fine, as if she’d never had a cough in her life. And it was his decision to proceed with surgery after checking her chest for the tenth time.
It was like something out of a movie. If I had reached the right person who told me to stay home when I called Saturday night there would be no surgery. If our appointment had not been three hours late and I’d met with someone who listened to that awful cough on Monday there would have been no surgery. If she had coughed during our Tuesday appointment with the head anesthesiologist there would have been no surgery. If she had coughed during OR prep for the anesthesiologist’s final check then no surgery. When it really mattered, she became a perfectly healthy kid. But the rest of the time she was coughing!
Surgery went well. She opted not to have the knock-out meds and waved goodbye with such bravery as they wheeled her into the OR. She admitted she got scared and cried when they put the mask on her face, but overall she was very good.
Back in the waiting room I let out a breath I’d been holding for six days. I was relieved for a brief moment before it hit me that my daughter was in surgery. But five hours later and she was out. Her epidural had worked, her cough had cleared and they had gotten a few degrees of range in her knees! In the coming two years the plates in her knees will hopefully get her even straighter!

No cough!

Epidural working!
One of the first things Laelia said after waking up from surgery was, “The next one to have surgery will be my brother. I’m gonna hold his hand and make sure he’s alright. I’m going to give him his medicine too!” (She seemed a little thrilled with that thought so I gave her a look. She quickly amended,) “Because I love him.”
Someone is happy that this is her last big surgery for a while.
The first day after surgery everything went right that could go right. Everything. Then the day after that things went wrong. Laelia’s epidural had slipped a bit. The doctor recommended they pull it out and see how she did. We’ve made some stupid decisions before, but this one had two hard days of consequences to it. She was in constant pain. And they threw every medicine they could think of at her. She had IVs in both hands and was on morphine, Valium, Tylenol, Codeine, something for the itching, something new for the panicking and something strong to help her sleep. As the first hard day progressed and they could not get on top of the pain they finally started doubling all doses. She went 35 hours without sleep because of pain. She made the nurse cry. She made us cry. She was darn pitiful. Finally, since she was eating, drinking and pooping, I asked them to discharge her and we would be right down the road and come back if there were any problems. We took her back to the Ronald McDonald House. Just being outside the hospital worked wonders. She got her first real sleep and so did we. Four solid hours. She woke up a new girl!
For as hard as her recovery has been, it is not as hard as the surgery she had a year and a half ago when her epidural failed. That was much harder.
Sunday night we took two long plane rides home. We’d only been home about twenty minutes before she threw up all the contents of her stomach, including her pain meds. She had a painful, sleepless night last night and a painful morning all morning. I finally snuck enough pain meds into her food to get her resting again this afternoon. She is refusing pain meds and it’s hard to get them into her! It’s my four year old verses my sanity! She cries and cries that her legs hurt, but when I offer her pain meds she won’t take them and spits them out. Also they have me doing physical therapy with her already (if you can imagine this please say a prayer for me and for her) so just add that to the torture. All and all it’s been a hard week.
But we knew it would be bad going into it. What we didn’t expect was any of the good times. It was downright thrilling to have to make the pediatric crutches Laelia uses longer because she had gained a couple of inches overnight! Laelia was also praised for being the sweetest little thing in the PICU. And she was so diabolical even through her pain. She had a speech about what hurt and what she wanted done about it that she threw at anyone entering the room–even the janitor! She directed her menu like a queen. When she was transferred out of the PICU she had me first take her to every floor of the hospital on her way to her recovery room so she could tell them all that she had just had surgery in an attempt to get presents out of the Shriners staff who seem to always walk around carrying goodies. (If it weren’t for all the medical stuff this place would be Kid Heaven!) She walked out with a monkey from the OR, a bear from PICU, a doll from the therapy floor and a doggie from somewhere. It is a privilege to be this little girl’s mommy. She is a joy!
Today Laelia stood up tall by herself with the help of crutches and her casts. She looked at me and asked through gritted teeth, “Mama? Am I tall enough for the big rides at Disneyland?”
That little player is determined to get a trip to Disneyland out of this thing too.