Friday, June 24, 2011

How I ruptured my eardrum–by me, Miss Jennah!

A ruptured eardrum sounds a lot worse than it really is … although in my case, it probably is a lot worse than it really should be! It’s a wonder how sweet, innocent, little ol’ me managed to rupture my eardrum. It couldn’t have been from too much Lady Gaga, could it? No. Nonetheless, I will share with you my technique for rupturing an eardrum …

1. Have your parents decide that you need reconstructive hip surgery, which will put you in a spica cast for 6 weeks. This will keep you immobilized from the chest down (don’t worry, you head and arms are free!). Despite the nasty smell of the spica cast after the first week, you will begin to become accustomed to the cast. In fact, you will feel very secure in the cast and find that you no long need to use your leg muscles. It’s a great way to lose weight and muscle mass!

2. This is the most important step. About 1 week before getting the cast off, catch a cold from your brother or sister. If you don’t have a sibling, an airplane ride or trip to the Dr. may suffice.

2. After 6 weeks, have the spica cast sawed off. My mom couldn’t wait for this to happen since she was really tired of carrying me around in the cast and treating it daily with a vinegar wash. She tried to make the cast smell better, but it really didn’t work … shhh! don’t tell her!

3. Immediately after having the cast removed, SCREAM! and cry and scream some more! Because it’s going to hurt like crazy, folks! They will put you into a soft brace to help maintain your legs and hips in the same position as the cast, but it’s not the same! The soft brace is “soft” … it moves and so will your hips. The skin on your legs will have goosebumps big enough to slow down a speeding car in Dubai. Stop screaming only when no one touches you. You won’t want any hugs, you won’t want to be held, you won’t want to be fed. Most importantly, don’t move a muscle because it will hurt and it’s just really scary!

4. The first week out of the cast will take some work because you have to cry and scream a lot and not sleep very much. Also, since you won’t want to move or be moved at all, for fear of pain, you won’t be able to belch/burp/wind, so you’ll spit up a lot. Your spit-up and vomiting will be even more productive and messy if you managed to catch that cold earlier as mentioned in step 2. Since you can’t change positions very quickly to vomit into a bucket or off to the side, a lot of it will just shoot right back up into your nose and into the back of your ear. Prime recipe for an ear infection, wouldn’t you say?

My mom noticed my ear infection about 10 days after I got the cast removed. Since I can’t talk or tug on my ear like other children, my mom somehow figured it out when I flinched at the touch of my ear. Then she tugged on it again, just to make sure … OUCH! Gosh woman! Leave my ear alone and get me some antibiotics already! So we got to visit the Bellevue Seattle Children’s Urgent Care clinic for the first time ever! I was looking forward to the ride in the car …

Oh sorry … I’ve diverted from my step-by-step instructions!

5.  Continue to move around very little. With little movement, you won’t be able to help your ear relieve the pressure. You don’t want that ear infection to clear up too quickly! My friends with tubes in your ears, I’m afraid it will be very hard for you to accomplish this task since your tubes will help your ears drain … drats!

6. Once enough pressure has built up in your ear, let your eardrum rupture! They say that sometimes a rupture will heal on it’s own immediately, but if you have a case bad enough, you can get it to rupture again … wohoo!

I managed to do this since I’m sooooo good at not moving around. When my ear started draining, blood started seeping out along with the drainage. It was kind of messy! My mom thought it was just ear infection drainage, but I continued to cry and scream, and, most importantly, bleed from my ear a bit more. So we got to go to the Urgent Care clinic again! Only 5 days from our previous visit … fun!!!

I have some more antibiotics in the form of ear drops now. This should help heal the eardrum and keep it healed. The Dr. thinks I’ve ruptured it at least twice. I’m feeling better now and my mom can lightly touch my ear to get the drops in. I’m also starting to move my legs a bit. Best of all, however, is that I’m out of my soft brace! It still hurts to be moved around, but I can tolerate being out of the brace now.

I’m going to go back to my own pediatrician this week, inshallah, to make sure the eardrum has healed. Hopefully it has because I don’t want a patch on my ear, or worse, and surgical procedure!!! My mom would not be pleased. She’s so easily stressed out anyway …

Thanks for reading my long blog post!

Love to all,

Miss Jennah

Tuesday, May 24, 2011

2 more weeks!

I see my last post was while Jennah was in recovery from the surgery! So much for keeping up via the blog, eh? I know that many of you have put up with my bitching and whining over FB where I also have some crazy pictures of her in the car as well as the 5 “easy” steps to changing a diaper. As I’m sure you can understand, these past 4 weeks have been a bit hellish. We spent only 3 nights at Seattle Children’s and were released after forcing Jennah to have a bowel movement before the end of the day’s last rounds. I was ready to get out of there‼

The first week was absolutely terrible. She was on oxycodone (causes Jennah more constipation and nausea), acetaminophen, lorazepam (a muscle relaxer) and two types of stool softeners along with her usual seizure medications. I was drugging her with something every two hours around the clock. One of the worse things about her first week was the muscle spasms. They had cut through and lengthened 2 pairs of her muscles, the abductors and adductors, so they spasm as they begin to heal back together. The spasms looked exactly like her seizures. It was heart-wrenching not knowing if the pain had provoked her seizures or if they muscle spasms, or both. They were painful, no doubt, and she let us know.

By the end of the second week, after dozing off during both of my classes (luckily my professors both understood and pitied me), I was ready to throw in the towel and quit my studies. In the four years that I have spent earning this degree, through Jennah’s infancy and seizures, through the move to Dubai and back, I have never wanted to quit so badly. Through the support of my husband and classmates, I’ve come back around and am still expected to graduate in 2 weeks! Don’t get me started on how much these next two weeks of projects, papers and finals is going to suck …

So, it’s been 4 crazy weeks. I have not had more than 90 minutes of consecutive sleep in 4 weeks … well, aside from one night where Jennah had a bit of a cold and slept for 4 hours straight! I just hope she didn’t get any bed sores from that stretch of immobility! Anyway, I am tired. Exhausted, really. I don’t know if there is really a word to describe my physical being of exhaustion and mental stress. My complexion is shot, my hair is greasy, I have more eye wrinkles than my mom, and my pants are falling off.

BTW, did I mention that Jennah’s cast is to be removed on the day of my last final exam? No telling how she’s going to react to being free, but put into a brace in a different position. I expect she’ll be sore and have more muscle spasms. Nothing ever comes easy. Luckily, I just learned that hubby will be in town that week … phew!

On the bright side, Jennah is laughing and smiling again, despite her nasty-smelling cast. She really is such a trooper and just so incredibly sweet.

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.

Thursday, March 24, 2011

Hip surgery update

We've moved the date up to April 25. One month to dread and stress over it.

I think I'm going to start tweeting again ...
I really should try to sleep more ... oh well.

Tuesday, March 22, 2011

VEEG report!

Jennah hates getting her scalp abraded

I am thrilled to report that Jennah’s last 24-hour VEEG shows NO seizures … wohoo‼‼ Of course, this doesn’t really mean that she is completely seizure-free, just that she didn’t have any during the course of the study. However, as a bonus finding, the EEG shows that she has a marked improvement in her background waves … this is absolutely phenomenal‼ So if she is having any seizures, then they certainly aren’t harming her and they aren’t worth increasing the medications to treat. Any change in meds is usually very disruptive to Jennah, so it’s not worth rocking the boat in this case.

Finally got all those electrodes glued on!

Our hospital room at Swedish before we messed it up.
We got to take the cute blanket home!

We also went in for her preschool assessment today! It makes me realize that she really isn’t a baby anymore … she’s real little girl! It was so cute to see her in a school environment. Of course, she met the special needs requirement with flying colors … in fact, you can say she excelled at how needy she is, lol! It’s funny because when you hear “assessment”, it’s usually, “gosh, I hope my kid is good enough”. In this case, it’s “is your kid really truly delayed?” With all of the procedural and paper work stuff they have to do, she won’t be able to start until the summer program and she’ll be ready for the fall school year. This is just fine with us since we have the hip reconstruction coming up …

While we were at the assessment, the orthopedic surgeon’s office called to schedule the procedure. So as soon as I got home, we got Baba on the webcam and set a date … May 5. Not something to really look forward to, but we do what we have to, right?

Thursday, February 24, 2011

We left Dubai for this??

We arrived back in Seattle again on Christmas evening. It was friggin' cold! We left 75'F weather for this? What were we thinking?? Not to mention an array of insurance issues, doctor appointments, back to classes for me, and A & B in a new school again.

Fast forward 2 months to Feb 24 ...
we're doing as well as we can hope considering our hectic situation! A & B have done AWESOME! It was amazing to see how well they have adjusted to the cold weather, new school, and being away from their dad. They are amazing kids.
I'm back in my classes at UW as well. I did become quite ill with bacterial pneumonia shortly after the new year. It had to have been a combination of airplane travel, jet lag, stress, and sheer denial that something was seriously wrong since we just had a lecture on the topic in my diagnostics class.
Jennah is also doing well. She's back on her horse twice a week, even in the frigid cold. We've ironed out the insurance issues and have met with her orthopedic surgeon and neurodevelopmentalist. Next up is her 24-hour video-monitored EEG on March 14. Once we get the OK from that, ISA, we will go ahead and get her reconstructive hip surgery scheduled.

We had a crazy amount of snow these past few days. The 4Runner rules the roads. The kids LOVE the snow, but are poorly equipped. We went to REI in an attempt to find waterproof gloves without success. A is wearing her leather knee-hi boots to play in the snow ... and so is B. He doesn't realize they are my goddaughter's hand-me-down boots. Hopefully no permanent damage done. ;)

I personally miss Dubai terribly. I miss the warm weather and the coffee mornings with mums. I miss the coffee shop at school with the expansive view of the swimming pool and chatting with my dear friends. I really miss my hijaab and my husband, too. Patience is certainly a virtue.

At least we are near family and other old friends here. Also extremely comforting to know that Jennah receives consistent therapy and is among great medical care here. This is definitely the better place for her.