Thursday, March 5, 2009

The Shortened Version of a Very Long Story

Princess D was about two years old the first time we noticed something wasn't quite right with her ears. It was probably earlier than that, but since that was about 8 years ago, I can't remember all the specifics. Let's stick with vague generalizations and estimates for now. Most of this story will be as true as I can get.

What triggered me to think something wasn't right with her ears, was the fact that something didn't smell right. The poor little Princess loved to get hugs and snuggles from her Momma, but her Momma started turning her away because the Momma had a weak stomach. This means that the smell actually started bothering me so much that I wouldn't even let my own child on my lap for longer than I could hold my breath.

When there was drainage, I would clean it up. It wasn't fun - for any of us. Between Mr Nice Guy and I, we made several trips with her to the Pediatrician, and had her examined. Several times he turned us away, scolding us for our interest in trying antibiotics, expressing all the new data on why he can't just prescribe antibiotics anymore when we "think" something is wrong, because he couldn't really see anything wrong. My guts told me that if your kid's ear smells like something that is dying, then something IS wrong.

Looking back, this was the first major time that my "mothering instinct" was spot on, and the doctor was dead wrong. Unfortunately, I had only been a mother for just a few years and thought that anyone with a medical degree must know a heck of a lot more than I did. Plus, the way he spoke to me, I felt like I needed to just be quiet and trust what he said. This would soon change.

After a short period of time, and with my husband's urging, I decided to take my daughter to the Family Clinic here in town. We had since moved, so it sort of made sense that I should take her somewhere locally, and I hoped it wouldn't hurt the Pediatrician's feelings when I transferred the medical records of all three of my children. I just wanted someone else's opinion. I had given the Pediatrician a lot more credit than he deserved, apparently. I don't think he noticed we were gone. Or he was happy that the "whiner" Mom didn't come back.

Our first visit with Dr Foley was amazing. He actually asked me questions. Even better, he listened to my answers and my questions. He wasted no time in looking at my daughters ears, and then referring us immediately to Dr Benton, an ENT. I was taken aback. I wondered why on earth the other doctor had never even considered something like that.

Dr Benton was a great doctor with Princess D. He talked to her, not about her, and he made it a point to be very thorough, and persistant in taking care of her ears. Princess D's first time under general anesthesia was to place tubes in her ears, this happened shortly after our first appointment. I had tubes in my ears as a child, so it was really cool to be able to tell her what to expect. She drew a lot of comfort knowing her Momma had been through the same thing more than once and I think I stayed calm knowing that I made it through ok, so she of all people, definitely would.

Over the course of the following four years (give or take), she endured a few more surgeries to "help" with her problem. Her tubes went in, they were taken out, they were replaced, her adenoids were removed (more things we had in common!), yet still, lingering problems persisted. There was always at least one wet, weepy ear that never seemed to quite get all better. These various procedures HELPED a great deal - but eventually the signs of something wrong would return, or something else would come up, and we'd be right back in the exam room.
The last scheduled appointment we had with Dr Benton, was one of a little bit frustration, a lot bit worry. Princess D way laying on a table (usually she was in a chair) and she held so still for him (lots of practice!) that he was able to really get a good look with his microscope. He would wipe away moisture from her ear drum, and then it would return right before his eyes. For about 10 minutes he did this until he finally spied it. "IT" would turn out to be a Cholesteatoma, and the tiny pinprick hole of evidence was clear up near the top of her eardrum, almost impossible to see. We were immediately referred on. We were given two options. Option number 1 was to go with the only other doctor in the area that he felt could assist her further, or be referred to someone at OHSU in Portland.

I know many people who have had good treatment at Oregon Health & Science University, and I know Doernbecher Childrens Hospital there has a great reputation, but I had other things to consider. First... was my child's comfort. Second, was our ability to work these visits in around her "normal" life and not have it be terribly intrusive to our whole family. I chose local specialist over the 3-4 hour round trip hospital option

Let me tell you, I am SO glad I did. I have always known that if I needed to go to Portland, I could, and the new doctor made it very clear that we always had options, but after we counted the dozens upon dozens of trips we've made (many of them once a month and some every couple weeks) to see the new guy, Dr Stevens, I couldn't even imagine having been able to do that with a doctor that was a long distance away. Rescheduling was a breeze, emergency visits (which happen more frequently than I like) are always easy and stress free. I'm grateful I made that choice.

A little bit of knowledge for anyone still reading (Princess D reads this blog!) a Cholesteatoma, in simply laymans terms, is a benign tumor, or growth, inside the middle ear. It can be there from birth, or it can just show up later. In her case, it showed up later. It's not really clear when it showed up, but it appears to be sometime between all of these events. The way I like to describe it is, the eustachian tube didn't equalize pressure properly, so her eardrum "sucked back in" and formed a pocket of skin -a sac - which no doubt collected debris and dead skin. Then this pocket of skin makes it's own little miserable, growing tumor. This causes infection of course. And, as a cholesteatoma grows, it releases enzymes which eat away at bone.

Typically anything that "eats bones" sounds scary. In this case, it's EXTRA scary, because Cholesteatomas, left untreated, can eat their way into the brain covering and cause meningitis, or brain abscess, they can chew up the bone over the facial nerve and cause facial paralysis and it can and will erode away the mastoid and hearing bones.

Princess D's fourth surgery was major. She still calls it "Surgery #4". If any new surgery is planned, she guages its importance and significance by asking how it compares to "Surgery #4". During surgery #4, she had a Tympanoplasty with a Canal Wall Down Mastoidectomy. Dang, that is an obnoxious term. Short definition: The bony partition next door to the middle ear was removed in order to 1) eliminate the cholesteatoma from that area, and 2) to provide easier access in the office post-surgery (for years) so the area can be cleaned and observed easier. Cholesteatomas DO tend to reoccur, and finding them early is key to preventing further hearing damage.

Surgery #4 was long, and it was frightening for me. Nobody really knew how much damage this tumor had done inside her ear, how big it was, or what it had damaged in the process. She came through it quite well, although the massive amounts of infection they had to clear away meant that she was at risk for problems. They got "most" of the Cholesteatoma. Apparently it was pretty well involved in the area around her cochlea too (you remember what that is? The snail shaped apparatus that is the auditory portion of the inner ear?) and you can't mess with the cochlea without risking complete hearing loss.

Speaking of hearing damage, she did end up losing a couple of hearing bones. The stapes is the only one that remains. This of course means we get the frequent, "Huh??" when giving directions or trying to speak to her. Our family has learned to look at each other when we speak, or we'll just have to repeat ourselves. It's ok, I've had to do that for years already (3 sets of tubes, was it?) because of my own mild hearing issues. D does suffer from a moderate degree of hearing loss, it was expected, and yet it's amazing how much she CAN hear even with hardly anything left in her right ear to hear with. The surgery also involves the nerve that affects taste, so occasionally things will still taste funny to her.

Following surgery #4, I monitored Princess D very closely. She had a gel-type packing inside her ear canal to keep the canal "open". (If you don't like graphic stuff... skip down to the parts AFTER her first picture now!) (Don't say I didn't warn ya) (Last chance...) Anyhoo, the way they had to cut her ear canal made it look like someone had used her ear to deposit coins! The cuts went straight up, and straight down. Since the bone behind all of that was removed, it was imperative to hold the canal open while the stitches healed so it wouldn't collapse. The packing and the stitches were painful for her, but it certainly wasn't the most painful part. Behind her ear, they had made an incision from top to bottom (they were very careful - you can hardly tell now) that ran the full length of her ear so they could move it forward and go in behind the ear itself to open things up and get out all the cholesteatoma and eroded bones.

Unfortunately, there was SO much infection in the ear, that chances of some infected material still remaining inside were very high. Within a few days, D complained of more pain, worsening headaches and she started running a fever. Unfortunately, Dr Stevens wasn't available and neither was Dr Benton. I took her to the clinic here in town, and of course they didn't know what to do with her or where to look, but they said nothing looked infected, so they sent her home.

This is the part where my intuition kicked into high gear and I insisted that someone see her who knew what a post-op mastoidectomy was supposed to look like. By the next morning, we had visited another doctor who again, was intimidated by all the packing and just looked around a bit. He felt that no signs of infection were present in or around her sutures and we were shooed out the door. I was finally able to make an appointment somehow with Dr Stevens to see us (as he was back in town now, but it was a surgery day at the hospital for him) because I explained that my little Princess was now vomiting and appeared very ill and her packing was pushing its way out of her ear. I did not believe for one minute that she did not have an infection... and whatever it was, it was bad.

Just hours before we were able to see Dr Stevens, Princess D proclaimed that something was draining. This was bad news... because it meant that her packing was loose, and she needed immediate attention. It got worse though, because her packing had stayed in place. It was the incision behind her ear that ruptured and was making a mess all down her neck and into her hair. It was the scariest thing I've ever seen, right up there with carrying my Firstborn down to a river with two broken bones in her leg in order to reduce swelling because she couldn't stand the ice packs. Egads! The drama around here!

Princess D was seen immediately. I do not recall how we ended up in Urgent Care - that whole week was a blur. But her ear packing was removed, her incision cleaned, and somehow she landed on a bed with an IV for hours to pump antibiotics, and to rehydrate her. She had to have anti-nausea meds pushed into places that she is still traumatized by to this day. She was such a sick little girl. Mr Nice Guy and I just sat there and cried right alongside her. We felt so helpless.

Princess D :: 2nd Grade

Within another week, after we knocked out the massive infection, she was able to go back to school. The kids in her 2nd grade class had all made get well cards and sent them home for her during the 2 weeks she was gone. She began to make progress again, but she felt like she was constantly being babied and occasionally we butted heads over the issue of "no water in the ear... ever" rule. It wasn't easy on any of us.

Over the course of the next 2 years, she was back in for 3 more visits to the operating room. She had a skin graft done, where they grafted her own tissue over her eardrum that had perforated at some point. Success rates are at 90% for that kind of surgery, so we were a bit surprised when the graft failed. She likes to keep us guessing, you know! A second graft was done using something other than her tissue, and it has held tight since then. She also had tubes place in her eardrums again and a method was used to help enlarge the opening of her eustachian tubes. At one point she scared the dickens out of everyone in the operating room (during a very quick procedure) when she stopped breathing and they had to rapidly intubate her. The next surgery included removal of her enlarged tonsils as her surgeon believed that they were causing a lot of her breathing difficulties. She has snored a LOT less since then!!

This past year, has been one of anxious expectancy. This is the longest she's ever gone without a visit to the hospital. We do visit her doctor frequently, and for the last year, and every time we wonder what next? Her regular visits are in order to clean out her middle ear (she no longer has a self-cleaning ear, like the rest of us regular people, so appointments must be kept to stay on top of it) and to try to keep it dry inside. She isn't allowed to ever have water in her ear, as there is literally just a large empty space on the other side of her ear canal (a man could fit his thumb in there if the ear canal wasn't so narrow). She has fitted earplugs that she got to help "design" by choosing her favorite colors of silicone and she wears them in the bath, the shower, during water ballon fights and at the pool - if we ever let her near one.

Just yesterday, [this blog written on Monday! Today is Thursday!] I took her in on an emergency visit because she has had four days of really bad headaches. There appears to be a large amount of pressure built up between her eardrums and her sinuses. Her ear hasn't been staying dry like it should for the past year, and whatever is causing pressure is pushing fluid into her middle ear through her tube. We didn't just learn of the moisture, we have been fighting the wet ear for the past year, but it isn't doing any better no matter what different measures we take. She now has a new surgery scheduled for March 19th, where they will literally remove the wet tissue and encourage it to grow back as dry skin. (Encourage? Like... cheer at or applaud? I don't know.) They will also remove the tube that is currently allowing all the drainage through.

Please keep her in your thoughts that day as she endures Surgery #8. She probably won't have much pain afterwards. In a way she's blessed with not feeling much pain, but on the other hand it's not good for someone to not feel pain because then your body can't tell you when something is wrong. I'm praying that this will be very uneventful, but my guts are telling me there might be just a little more to this one. Please pray that I'm wrong... sometimes I really like being wrong.

Alexis & Princess D :: windy day at the beach :: 2008


Livy said...

I know all of this has weighed heavily on your Momma heart. I remember her last surgery and how hard this was on all of you too.

You hang in there Sassy and Sassy Jr. I'm praying that all goes smoothly with this next surgery. I really do wish I were home Lexie. I'd take on your zoo so you could just hang out with Princess D and help her recover...

Love you my friend. Livy

Angela said...

I will be praying for her. ((hugs))

Angela said...

Father God, I praise You for the strength, the courage and the dedication that YOu have placed within Alexis as a mother. Father, I lift her up to Your throne where she is able to receive grace and mercy in her time of need. Father God, I pray for her mind set, that she will be able to take every thought captive and bring it to the obedience of Christ Jesus. I pray that You will keep the evil one far from her family, I pray that You will commanded angels to be in the four corners of that operating room to protect, to guide the Dr.'s and to bring peace as they operate on Princess D. Heal her oh Lord and she will be healed..Save her oh Lord and she will be saved for You are the One we praise...You are her great Physician..Her help comes from You, the Maker of heaven and earth..amen amen amen

I just REALLY felt led to come here and write out a prayer..((hugs))

Beth E. said...

Bless her little heart! I'm so sorry she's had to go through so much AND now has another surgery. I will be praying for her. Please keep me posted.

Anonymous said...

Momma, it was Surgery #6 that was bad, not #4!

- Princess D

The Bagenski Family said...

Ugh, don't ya hate being right when it's bad news? I will pray for your little angel for all to go smoothly, for God's hand to be on her and the doctor and for this to be the final time with the final fix for this ongoing issue!

Much love to you, Lexie.


Misty said...

oh my goodness... i can't believe it!

Katie said...

Love how you have your own editorial staff..(ahem)

Lexie and D I love you both and will be praying hard on the 19th!

Amydeanne said...

I'm actually tearing up Alexis. Hugs to you and your baby.. Princess... I'm so sorry you guys have to endure this. Praying that all will go well and that it will be dealt with in the best possible way!

Farm Chick Paula said...

Bless your heart Princess D.... I can't even imagine. And I always thought I was being punished for something wvry time I had tubes put in... Jeez! Hope this kid has a break soon!

Shabby Olde Potting Shed said...

Princess D,

I'll be praying for you on the 19th!
You've been through so much!
If I were you.... I'd milk this for ALL IT'S WORTH.... ya know what I mean? heehee
In all seriousness you're very, very brave and your Mom is a very blessed lady to have you!
Holykisses from Arkansas!

Susan said...

Wow, you've been through it!

My heart goes out to you and your precious little girl.

Please count me in to be praying for her next surgery.

I'm believing it will be her LAST!!

By the way, my son has a brain tumor and has had 2 brain surgeries and treatment. I know the pain of watching your child go through it, and feeling so helpless many times.

I'll keep you in prayer!

Rachel said...

I've been through Surgery #4 (or is it #6?) myself. Plus the usual assortment of adenoids/tonsils/tubes fun.

All I've got to say is HANG IN THERE Princess D. You're a tough chick :)

And Momma... I know it's awful to see your kiddo go through this (I'm a mom now too, and it's a rough thing to watch)... praying you can give it all to Him who has shoulders big enough to handle it. And who already loves your little one more than you can imagine. *and I imagine that's a LOT*

Many prayers,

Jen (a.k.a. motor mouth) said...

WOW. Thats quite an ordeal you are going through. I will pray for the wisdom of the doctors, peace for you and a speedy recovery for the princess!
On a side note, Samantha had meningitis when she was a week shy of 3. It was aseptic viral meningitis. They did a spinal tap etc. It was awful. So I can't imagine your baby being so prone to meningitis. Thats gotta be scary for all involved!
Praying for you Lexi!

heidi said...

(((Alexis & Princess D))) What an ordeal. Praying for you guys!!

Miriam said...

She is precious and beautiful and man-o-man has your family been through the wringer! Love and prayers.