Love is (a) Patient: Part 2

The first 24 hours are the worst. If your child is getting this surgery and  you  can get through those hours, you will have gotten through the worst your child will ever go through. Surgery itself is cake compared to this.

She cried. And cried. She arched her back and grimaced. She would sweat profusely through her pillow case and sheets. She didn’t speak. She squeezed her eyes shut but couldn’t get respite through sleep. She cried. And moaned.  And cried.

And  we couldn’t do anything about it; just be there watching her in pain.  And we couldn’t leave the room to use the bathroom without her startled cries and elevated heart rate (machine beeping at us)  pulling  us quickly back to her bedside. Sometimes she wanted me to hold her hand. Sometimes she hated to be touched. Sometimes she wanted a hand on her tummy. Sometimes she just wanted to scream in  my face and look at me accusingly for not fixing her pain.  

Charley adds: “She was reduced from her super articulate three-year old self, to a tiny baby without the ability to communicate anything except need. She would cry something that sounded like, ‘I want I want I want I want…’ but without a way to finish that sentence. It was almost a  full 24 hours before she learned, through the pain, to form a full sentence again. It was, ‘My legs hurt a lot.’”

I started to second guess my decision to have this surgery done. I kept thinking how much she has gone through, all to possibly one day stand or  walk. This was too much; I was a terrible mom.

The incision site was above the cast line.

The casts were not a spica, but instead full leg casts connected by a bar. This is so she will have more mobility later, but for right now it’s just hard to move her. You cannot move the cast separately from the hip or twist her or lift one side or anything you need to do! It’s so hard, and I’m so intimidated to even touch her.

My husband broke down again somewhere in the first  few hours. For some reason that made me stronger.  Because if he was the strong one, then I would break down.  I don’t know how any single parent goes through this.

Nurses, God bless them, were wonderful yet  we wanted them to all go away. They had to check her vitals every 15 minutes. So every 15 minutes Laelia screamed her head off. But it was different than when she’s throwing a fit or when she’s got a boo-boo. She was downright  scared. Her cries were desperate and hoarse  as if she were being tortured. Laelia couldn’t stand having the blood pressure cuff on her arm. So I took it off. Then a nurse came in to put it back on, but not to take her blood pressure–just to leave it there. So I took it off. Laelia was scared of it and in a lot of pain  so I asked it be kept off until they needed to use it. When I got the “it’s the hospital policy” line, I tried using her amyoplasia as an excuse. I said she was special and this hurt her. I lied through my teeth which is quite unlike me. (Also I forget that people have actually heard of her condition at this hospital.) The nurse wrapped it onto the bed rail and hit the top of it in frustration and left. She came back later with her superior who put it back on my daughter. I told them all that if they needed to take her blood pressure every 15 minutes they could darn well come in and do it themselves as opposed to leaving it on her arm  to go off automatically and freak her out the whole time it was on.  I was at my wit’s end and I made it clear that I would take it off as soon as they left the room anyway. I watched  that cuff try to take the blood pressure of the bed rail more than once. It gave me  a grim satisfaction.    

Lali  refused to keep the oxygen in her nose, so the doctor put it on the top of her head unintentionally making those who tried to cuddle her light-headed.  Despite being largely mute, she  was very particular about her own care.

Laelia also sounded like she had a bad cold. She was congested due to some  fluid in her lungs from intubation. And that meant she had to have breathing treatments done. Which she hated. A lot. And up until now things had been done to   her, so when she finally had the power over a part of her own care, she was  darn well  not going to  participate.  But when her breathing was affected by the junk in her chest we had to force the respiratory device into her mouth and tell her we wouldn’t take  it out until she breathed into the device. It worked, but the last thing I wanted to do was force more hardship on this little soul.


The respiratory therapist gave Lali a  gorgeous black-and-white  stuffed tiger as a reward for doing her first treatment. Charley gave Mr. Tiger a voice from then on out, throughout our stay.  Subsequent breathing treatments  were done after a few bribes or threats of, God forbid, pausing one of her two billion viewings of Finding Nemo until she cooperated. (I’ve now seen that movie more than the animators themselves. But I’ve got to  admit it was much preferred over half of what children’s programing had to offer. Dinosaur Train? Seriously?)

The next morning Laelia was still on IV meds, an epidural and a suppository. Finally she got some water and a couple bites of my breakfast pop tart (that she demanded) down so they switched her from the suppository to oral medication around lunch time. And Mama was the only one who could give it to her. So I had to squeeze her cheeks so hard it broke the capillaries in order  to force  one milliliter of medicine at a time through her teeth  until she’d had five milliliters. During her second dose four hours later she choked and  threw up all over me. Because the puke was on her IV, blankets and  pillow case it meant that  we had to move her to change those things out. And moving hurt her. She screamed in pain for half an hour straight after that. So finally after was seemed like hours, the doctor decided to  up her epidural medication and add two somethings to her IV. About five minutes after that happened, she stopped crying and announced, “My lips are purple. And I am so very pretty.” And then she argued about the  amount of strawberries the hospital had stocked.  She  was so  very drunk off pain meds. But for the first time in too long we were able to just enjoy her.

Charley and I were so very tired. Every little stress seemed to be magnified. The cafeteria had hours they were open  that never  corresponded to hours we were available, we never had one dollar bills for the vending machines, my cell phone only held 50 texts (40 texts caused large delays receiving messages) which meant I was constantly deleting all of my important messages everyday to allow more to come through, the lack of sleep hurt us physically even with trips to RMD house, driving through the ghetto almost resulted in accidents or death  of stupid pedestrians daily, and on top of these small issues, we felt personally responsible every time our daughter whimpered.

Many things are awful about surgery, but I think inability to sleep is the worst. Even when she was asleep she would cry. She would do a “crysleep” for ten minutes then wake up and cry out loud  and then fall back to crysleep. The crysleep sounded like a snore only with her voice box making a high whine sound every time she  exhaled while she grimaced. It was very  disconcerting.

Even in a deeper sleep than crysleep her heart rate was 140! That’s  the same as  I have when jogging!

Sleeping was impossible with all the  nurse interruptions, as unobtrusive as they tried to be.  Even the  guy who  came in to  empty the trash caused her fear and crying. We wished we could have had a heads up and  just moved the darn trash can to outside the room before he came in!   Another doctor came in at one point to look for something he’d left in the room earlier causing panic. Someone came in to lay a tray of food down. (I wish they could dress up in a different costume so she’d know it was food coming and not  someone coming to check her wounds. Maybe if they dressed up like  giant chickens? Shriners you can use that one. :)) One nurse, Wanda, came in  often to add meds to her IV or switch out the bag. Laelia screamed every time until I told her that Wanda was coming to “play with her machine” and she wouldn’t be touching Lali at all. That line worked better than, “She’s coming to add medicine to your IV.” Laelia finally was quiet every time Wanda came in after that.

There were moments of less pain. Not really pain-free moments, but starting Wednesday afternoon we had times  when we could talk to her and she would talk back. We were encouraged by the pain management brochure we were given  to talk with her about happy memories and future trips. So of course we talked about Disneyland. We sang the songs to her favorite rides like It’s a Small World and the couple of songs we knew from the Tiki Room.

We also read her lots of books.  I was getting encouraged when she could sit through a whole book even if she was crying the whole time. She wanted  me to read to her,  and would grab my hand if I  took the book  away thinking she was in too much pain. She would moan while I read, but I went through the fifteen books of hers we brought with us over and over again.

The second night was also hard. We decided to send me (Alexis)  to the RMD  house to sleep through my worry for a few hours,  then I would come back and switch off with Charley. I broke down in the elevator before reaching my room. And while I was telling myself she was fine, she wasn’t. Charley was with her the second night, so I’ll let him tell this story:

“The second night Laelia was given Valium to prevent muscle spasms. It was supposed to be the first of several regular doses, but she started reacting to it almost immediately. She wanted her blanket off, which I accommodated; then she wanted her gown off, which I helped her unsnap and remove. Then she just started clawing at her IV and the sensors on her chest and finger. She wanted them off, she wanted everything off, and she wanted to get out of there. I called the nurse and doctor in, and they confirmed that Valium could cause this kind of disorientation. The nurse helped me get her into my lap–it was the first time either of us had held her since the surgery–and after about 30 minutes of singing and talking about Disneyland rides, she calmed down. Then the nurse gave Laelie her first dose of Tylenol with Codeine, which helped knock her out and give her 3-4 hours of continuous sleep. During her whole stay in the hospital, it was the most sleep she ever got at one time.”

So I came back from the Ronald McDonald house  Thursday morning to find out that my daughter had a Valium trip that make her want to take off her own skin while my husband held her and cried into her hair.  Laelia looked miserable and so did Charley so  I  kicked Charley off  to the house to sleep off his trauma while I took the next shift. He had to leave through Laelia’s painful cries which was hard. But she settled down after a bit.  

During this time I got a text from Ryan’s mom.  (Back story: This is the family we went to Seattle Children’s hospital with  to get our amyoplasia diagnosis. The same place that gave us no orthopedic hope for my daughter. Which directly  led to our AMC support group  contradicting them and sharing  about Shriners in Philly  which ultimately lead to this very treatment course we  are pursuing.)  Ryan was scheduled to have the exact same surgery that  Lali just had that morning. (They worked it out so we could have the same surgery week together.) Well  Ryan had just flown all the way to Philly from California with both parents in tow only to find out that  his surgery was cancelled due to slight congestion. Which sucked.

By Thursday afternoon before 2:00pm Laelia’s epidural and catheter were removed (not as traumatic as I would have expected, just a quick pull for both) and we were allowed to go back to our neglected fifth floor room. More magical medicine was given to Laelia so she  slept the whole way there even when her bed got bumped pretty hard into the door. That evening after two more viewings of Finding Nemo it was becoming obvious that Laelia was in more  discomfort than usual without the epidural helping. The nurse brought some Tylenol with Codeine and I forced it once again down my daughter’s throat through her teeth. It took about twenty minutes to kick in. Once it started working, it worked well. There was no doubt when it kicked in. :)

Laelia was doing better, inviting all the nurses to Disneyland with her when we got home and generally saying demanding  things like, “I wanna go to Disneyland now! DADDY DON’T LAUGH!” :) But I was sure there was no way we were making our flight the next day. She still had such a long recovery ahead of her. It still hurt to touch or move her. And she  hadn’t pooped in a week! Tomorrow I had to figure out where we would stay, how to change  our flights and how to avoid blowing  our trip  budget to smithereens.

Needless to say I was shocked in the morning when our doctor came in and we were discharged that afternoon! (More to come in the next blog, Love is Kind.)

5 Responses to “Love is (a) Patient: Part 2”

  1. Bethany says:

    This story is bringing tears to my eyes, but I’m amazed by your bravery. All three of you.

  2. Suzanna says:

    Aww. I tear up for her (and you) because I can somewhat relate. It must have been frightening, stressful, emotionally straining, and even a bit sickening to be so helpless with your baby going through so much. I want you to know that I do pray for you guys, all three of you.

  3. Tam says:

    thanks Alexis IM TERRIFIED! I will very likely be doing this alone. and in taxi cabs. but hey we have not even gotten a date yet, or a date to get a date to get a date.

  4. Tracey says:

    After reading your journal entries about her insane amount of pain post-op and having had a femoral osteotomy in May, I’m fairly convinced her epidural wasn’t working 100%. My first 36 hrs post-op from the femoral osteotomy was 100% pain free bc of the Epidural. I have had an epidural fail to work and I couldn’t sleep more than 1/2 hr a time either. My epi failed when they did my first fixator on my foot. That was so traumatic that when I was talking to anesthesiology before my femoral break I requested no Epidural because if I didn’t have one I’d get all the drugs I requested but w/ the epidural they *usually* say “no oral pain meds, you shouldn’t need them you have an epi” but this anesthesiologist convinced me that I needed the epidural. But I still questioned how good he was at his job :-D He said he is normally an OB anesthesiologist and 95-100% of his epidurals work. So I figured well if pregnant women haven’t fired him for poor work I’d give him a chance. When he walked into check on me after surgery I could have kissed him. This anesthesiologist was at Erie and the anesthesiologist I had in 2008 is no longer working at Philly. I’m sure she is good but that epidural failing to work right…ughh!!

  5. Laelia Sky » Blog Archive » The cough that prayer cured. says:

    [...] as hard as her recovery has been, it was not as hard as the surgery she had a year and a half ago when her epidural failed. That was much [...]

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