Monday, April 25, 2011

J has new hips!

We checked in at 7:15am and wiped Jennah down with an antimicrobial wipe before dressing her in a hospital gown. We met with 2 anesthesiologists and 1 of her orthopedic surgeons. Here is Jennah enjoying some last minutes of cuddling...

Finally, one of the anesthesiologists came by and told us it was time to give her our last hugs and say "see you later." I handed Jennah off to the Dr., right into her arms wrapped in her favorite purple blanket and Mr. Caterpillar. No tears ... yay for me!

We were issued one of the surgery pagers and proceeded down the corridor where we bumped into her main orthopedic surgeon, who looked like he had just finished breakfast. Good to know he'll be working on a full stomach! 

We were paged at 10:15 to learn that the surgery had begun. The sound of power tools whirr in my head. They expected the procedure to last 3 - 4 hours.
Just past 12:30, we were paged again and informed that they were just closing up and were beginning to cast. They expected her to be on the table for another hour.
At 1:30'ish, we were paged again and met with her surgeon. He detailed the procedure and showed us before and after x-rays. I never realized how terribly displaced Jennah's hips were until I saw her new, improved, bionic, no-way-getting-through-metal-detectors hips! Check it out ...

They've cut off some of her femur and stuck it into her pelvis. Hubby is yelling at me saying that this is complicated language. I assure him this is laymen terms! Anyway, let me know if you disagree ;)
OK, so there are chunks of her femur in her pelvis along with some allograft bone. You can also see the hardware in bright white. Not the oddly shaped big white thing that is supposed to protect the ovaries from radiation, but the plates, pins, and screws on both femurs. Stainless steel. Airport security will truly suck now!

It's nearly 4 PM now, and we still haven't seen little Jennah. She is still in recovery and we hope to see her soon  in her inpatient room where we will spend the next few days, inshallah.

Thank you all soooooo very much for the warm thoughts, messages, texts, FBs ... everything!!!

Sunday, April 24, 2011

Cold feet ...

Not because the cast will cover nearly every part of her lower body just short of her feet, but because she went into a giggling fit last night around 11 PM while my bro and I were watching Harry Potter and the Deathly Hallows. I don’t know what set her off, but she just started giggling and squealing so loud that grandma woke up and ran downstairs to see what was going on. Jennah was, and is today, so happy and in such a great mood. No pain, no constipation, just fun and laughter.

I wanted to pick up the phone and call the 24/7 surgery line and cancel this whole blasted thing. I’ve spent most of today preparing for tomorrow and the upcoming week’s madness. Make sure A & B have clothes to last the school week. Clean up the bedrooms so they have some place clean to sleep, get dressed, and brush their teeth. I don’t know how much of them I’ll see this week. I don’t know if they understand what is going to happen to their little sister. Maybe that’s a blessing, actually.

We are all spending a lot of time snuggling and cuddling with sweet little Jennah today. It’s going to be hard to do the same when she’s in a body cast.

Her last feed will be at midnight. Her last clear liquids at 4 AM. After I make sure A & B's breakfast and lunches are prepped, we’ll leave at 6:30 to get to the hospital in time for our 7:15 checkin. Then we pray and pray until we see her again, 6 hours later, inshallah.

I’d be happy if tomorrow never came …

Wednesday, April 20, 2011

Around the World in 6 Hours …

That’s what Jennah’s orthopedic surgeon calls it, “the ‘Around-the-World’ procedure”. I guess the “world” is the femur head. Jennah was officially cleared for surgery last Tuesday after spending most of the day at Seattle Children’s. Using my C.A.P. (Clinic Access Pass for unfortunately frequent patients), we were checked in for a day for clinic visits. We started out getting measured for her spica cast, which will go from her waist to her ankles. Crap! I just remembered that I forgot to request a color‼ I really don’t want hot pink … chime in your opinions now! I’m thinking purple? Aqua blue would be nice. OK, sorry … totally diversion there. I’m in a bad mood from studying, reviewing the hospital check lists and preparations, and my thoughts are everywhere, but I’ll try to limit the rantings …

So where was I? Yes, she’ll be in a spica cast for 6 weeks and then put into a brace, for which I did manage to request purple cushions! The brace will be removable for baths and we’ll wean her off within another 6 weeks, inshallah.

Then we went in for xray. We’ve had so many xrays that we should be issued a radiation monitor button. The usual …

XRay tech: “Mom, any chance you can be pregnant?”

Me: “Good lord, I hope not!”

Same conversation every time. I don the lead apron, which sadly I recognize are new since our last visit a few months ago. I take off Jennah’s diaper and she proceeds to urinate, as usual, on the table despite my pleas for her to pee beforehand. The girl just does not listen to her mom’s instructions! :)

Our next visit is with the surgical team … our surgeon, a resident, a physician’s assistant, and his nurse (who won’t be in the surgery, but she’s awesome). While waiting, Jennah took the opportunity for a nap in my lap and I finished my homework due later that evening. The “Around-the-World” procedure consists of the following:

• Bilateral acetabuloplasty – reshaping of the hip socket (acetabulum); nails may be inserted to help shape and then removed after a year or two
• Bilateral osteotomy  – reshaping the femur heads
• Bilateral tenotomy – cutting of abductor and adductor muscles to manually loosen the tone and, hopefully, prevent dislocation again in the future.

Procedure, including anesthesia, will last upwards of 6 hours. Anticipate at least 4 days in the hospital post-op. Expect a lot of discomfort and pain. She’ll have an epidural put in. Expect recovery to last throughout the summer. Good times. Pray a lot.

Then it was time for our P.A.S.S. (Pre-Anesthesia Surgical Services) appointment. The most non-invasive appointment of our day and Jennah loses it. She screamed bloody murder through the whole meeting and all the way through the halls as I tried to calmly carry her (32 lbs of screaming, wobbling Jennah) to the outside. You can see the poor kids in the surgical waiting area thinking, “What in the hell did they just do to her behind those closed doors???‼!”

After calming her down and forcing some lunch into her g-tube, we went back in for her blood draws. She jumped a bit at the prick of the needle, but simply sighed and smiled. Thanks, Jennah …

Finally done at Seattle Children’s, we cruise back to the eastside to get her cleared by her pediatrician, who happens to be at the farthest practice we could find! Another long wait and Jennah takes a nap on the table … poor thing. After some more poking and prodding, she is finally cleared for surgery on Monday, April 25, Inshallah!

OK, I'm in a slightly better mood now ...

Friday, April 8, 2011

It's never easy

My thoughts are occupied with Jennah's upcoming hip reconstruction. The pre-op appointment is coming up on 4/12 (inshallah) where we will discuss details of the procedure and the dreadful recovery period. Our hospital stay is scheduled for a minimum of 4 days (ISA), just for pain management. I also know that she'll be in a spica cast, from her waist down to her knees, for 6 weeks. There will be bone shaving and muscle cutting involved. I keep visualizing the pelvic area of my cadaver back in anatomy lab ... we had to use power saws to cut through bone. It was loud and generated an amazing amount of heat. The muscles, specifically the psoas, looked like the shredded meat you get in a good quality burrito. Surprising easy to slice with a simple flick of a sharp scalpel. Jennah's hips were improving back then and we thought surgery was off the table.

It's never easy and never gets easier to have a child with profound disabilities. As she grows, we overcome some issues and gain others. Her seizures are well controlled now and she is more aware. More awareness equate to more emotions, desires, and temperament. It's easy to tell when she's happy and comfortable. It's torture when she's crying and can't communicate what she needs or what hurts.

Some may wonder why we are pursuing the reconstruction. She will not walk, she will not even stand. Maybe she'll sit some day, inshallah, and this could only help. It will also definitely aid in proper hygiene. Simple hip abduction is taken for granted until you try to change Jennah's diaper. Many of you know how obsessive I am about hygiene in that area, so this is just borderline selfish for me! But seriously, imagine in the puberty years (ISA), how important it will be to keep the area clean. Finally, pain management. The odds were about 50/50 that she will suffer from juvenile arthritis. But with her new found awareness, those odds are more likely that she will indeed suffer the pain of juvenile arthritis and pursuing reconstruction at an older age can be more painful and risky with more blood loss.

I guess I'm sharing all this (too much, perhaps?) info to convince myself, again, that we are making the right decision. I've prayed for months ... maybe over a year now ... for guidance on a decision. Her therapists and doctors (orthopedic surgeon, neurodevelopmental, pediatrician, neurologist) all agree that now is the right time to do it. So why do I still hesitate? Because I look at this every day:

When will I see her play and smile like this again after the procedure? This is what I dread most. Will she smile while she’s in the cast? Will she laugh and dance around when we turn on Lady Gaga’s Pokerface (her favorite song … blame the uncles)? This is what pains me … but that’s probably nothing compared to the pain she will have to endure. A pain she didn’t ask for, but we are knowingly inflicting upon her. It just doesn’t seem right.