Tuesday, March 31, 2009

Our Day at OHSU

Yesterday we took the next step in Maddie's kidney treatment...a kidney function test at OHSU. As a huge blessing to me, my mom came along with us for the day. I've only been to Doernbecher Children's Hospital once and I'd never been to the main OHSU hospital, so I was a little nervous about navigating the whole maze up there. Thank goodness my mom was there--it took two of us to figure things out! We had multiple appointments in multiple buildings and departments, so it was quite confusing.

We left home before 8:00am and headed up there for our 8:30 appointment in Pediatric Sedation. They put numbing medicine on both of Maddie's hands, while we waited an hour for it to thoroughly work (at this point she started getting suspicious about what was going to happen and told us "I ready to go home now!"...but oh, what a long day we had ahead of us!), and then they took us back to have an IV port put in. This is the part I was nervous about--I didn't want Maddie to have to be in pain or for it to take multiple tries--but Maddie was a pro! Mom and I distracted her by reading Where the Wild Things Are and, although she kept looking over to see what the nurses were doing to her, she didn't even make a peep when they put the IV needle in and bandaged it up. What a trooper!

Next we were off to another building, to the basement level (looked more like a dungeon!) Nuclear Medicine department where they injected some tracing dye (which I later found out is actually *radioactive material*!! Thus the "nuclear" medicine...) into Maddie's IV and they said, "OK--see you back here at 2:15pm." Um, this was at 10:15am! Gee, only 4 hours to kill!

Maddie was dying to go on the cool tram, so we rode that down to the new state-of-the-art OHSU Center for Health and Healing, which is where we went last time to see the urology specialist. (By the way, we just got the bill for that "consultation": $500 for the 20-ish minutes we spent talking to him. Man, I'd sure love to make $1500 an hour! Can I be a specialist when I grow up?!) My mom and I got fancy coffee drinks and we set up shop. We'd made sure to bring tons of things for Maddie--books, flashcards, toys, snacks, juice, Jello, and a portable DVD player. So once she was happy as a clam, my mom and I looked at each other and realized we'd both forgotten to bring a single thing for ourselves! No book, no magazine, no newspaper...and the reading material in the lobby consisted of Sports Illustrated and Newsweek from sometime in 2008 and other magazines of unknown origin. Nothing like staring out the window and twiddling your thumbs for a few hours on end! :-)

The highlight of the day was a little surprise for Maddie--Papa and our friend Cody Schuman meeting us for lunch! Cody is a chaplain for OHSU/Doernbecher and is a dear friend whom we rarely get to see and, let's face it, Papa is one of Maddie's favorite people in the whole world, so you can't go wrong there! :-) We all felt so guilty, though, because Maddie was on a strict regimine--no solid food after 8am, only clear liquids from 8am-noon and NOTHING after 12 o'clock. So she had to sit there, watching all of us eat our food, while we kept denying her anything to eat or drink. Poor girl! Papa cheered her up afterwards by taking her outside and giving her a tour of all the cool cranes, dump trucks and backhoes that were working on a new building across the street.

Then it was on to the main event. We took the tram back up the hill and found our way back to "the dungeon" once again. We were taken to a room with what looked like a huge MRI machine and told that they'd sedate Maddie with quick-acting anesthesia, she'd have an oxygen mask put on, and then we'd have to leave the room for the 45 minute procedure. My mom was holding Maddie on the exam table and they weren't kidding when they said the meds were fast acting--once it was put in her IV, she didn't even make it 10 seconds before she was slumped over and almost snoring! :-) It's a little scary to leave your baby in a hospital room, strapped to a table, but I knew she was in good hands. We waited what seemed like forever while they took photos of her kidneys functioning over time and then we got to come back in again. Maddie was so zonked out!! Totally limp, mouth wide open, like a rag doll. My sweet girl. And just like that, after only 7 hours at OHSU, we were done!

Given the OK to eat and drink again, Maddie snarfed down a raisin bagel, string cheese and cup of juice in about 5 minutes flat! Then off to the store to get her a popsicle, home for dinner and early to bed--for both of us! All that emotional tension and boring waiting really takes it out of you! I'm pretty sure I was already asleep when the clock chimed 8:30pm (and I'm the night owl in the family!).

We should get the test results by the end of the week. Please continue to keep Maddie in your prayers! :-)

Sunday, March 22, 2009

Tea Party

Today was a milestone day. Maddie's crib was taken down and now she's in her big girl bed full-time! Oh, my baby is getting so big!

In honor of the occasion, we stopped by IKEA today (after having a wonderfully fun breakfast date with my parents at IHOP in Vancouver) and picked out a little table and chair set and an art easel that has a chalkboard, whiteboard and roll of art paper. One of these will probably find a home in our living room and the other in her bedroom, so for today at least, the table and chairs are in her room. While we were at IKEA, she fell in love with a new play tea set (which my mom, being the sucker she is, lovingly bought for Maddie to use at her house!) and she would have been content to stay at IKEA all day...playing tea party, trying out all the big girl beds and play tables, testing out all the toys. I'd been meaning to save it until she was a bit older, but today I brought out the Beatrix Potter's "Peter Rabbit" ceramic tea set that I've had since childhood. (Thanks, Mom, for convincing me to save it for my own little girl!) Maddie's in heaven now, narrating a tea party for her and teddy in her new big girl bedroom. Oh, how I love having a little girl! :-)

Friday, March 20, 2009


Just a quick note...

After talking with our doctors, we decided to go ahead and schedule the kidney surgery for Maddie. She'll have a kidney function test at OHSU on March 30th, then the real wait begins. And I mean a LONG wait! They only had one date available in July, but it was too close to the date of our vacation, so instead her surgery will be August 17th. Um, yeah, that's 5 LONG MONTHS of waiting. (We are on a cancellation list, so I'm crossing my fingers that something opens up a lot sooner!) Oh well. Just pray her antibiotics keep her healthy until then and that the surgery is successful! :-)

Wednesday, March 11, 2009

Maddie's kidneys--update

Hi Everybody. Yesterday we spent most of the afternoon up at OHSU, meeting with doctors about Madeline's kidney problems. Maddie's doctor, Dr. Steven Skoog, is the chief of pediatric urology up there, so I know we're in great hands. Most of the information was what we expected to hear, so that was reassuring.

Maddie's left kidney is significantly smaller than it should be, but he said we'd never really know if that was due to a malformation in the womb or due to scarring from infections over time. We'd been told previously that her right kidney was enlarged (trying to overcompensate), but Dr. Skoog said he thought it looked fairly normal. The previous procedures Maddie's had done focused on the physical form and structure of the kidneys/bladder but it didn't tell us much about how they're actually functioning. So our next step is to schedule a test to determine the input/output from the kidneys and what percentage each kidney is functioning at. Even if the small kidney isn't functioning that well, Dr. Skoog didn't seem to think it would be a long-term concern (since many people live on just one kidney anyway) as long as we fix the other problems. He did mention, though, that our next child will be at a higher risk for also having kidney reflux.

As far as treatment, we were given two options. One procedure is minimally invasive, where they'd inject sugar molecules near the ureter valve (which is not functioning properly and is allowing urine to reflux back up into the kidneys) to essentially create a dam, blocking urine from backing up. He said this is a day-treatment option with quick recovery (no incisions), but that it only has a 75-85% rate and that's on reflux that's Grade 2-3. Maddie's reflux is Grade 3 (moderate) on the side with the somewhat normal kidney and Grade 4-5 (severe) on the side with the small kidney. Of course, we could try this option first, but we'd have to wait 3 months afterwards to see if it worked and it's like a 50/50 chance since her reflux is more severe. I'm hesitant to put her through something that most likely wouldn't work.

The second option is surgery, which is what I was expecting him to recommend. The surgery is similar to a C-section: she'd be given an epidural to numb her lower body, but still be awake (hmmm...wonder how well that would go with a 2-year-old for a couple hours! Not sure if they'll allow us in the operating room with her or not). They'd make an incision across her abdomen, but not through the stomach muscles, then detach and re-attach the tubes between the bladder and each kidney so that everything would be flowing properly and there'd be no more reflux. Recovery time is 3 days in the hospital and then taking it easy at home for a few weeks--he said kids are good at naturally limiting their activity, based on what feels okay to them. Surgery is 98-99% effective.

Keith and I are going to talk it over with a few doctor friends of ours, but we're leaning towards going ahead with the surgery and just getting it over with. The first opening for surgery would be June 15th, so it's already a ways out.

One thing the doctor did mention is that when we start seriously potty training, Maddie will be at an increased risk for urinary tract infections (which is what likely caused all this in the first place) since she'll be learning to "hold it" for longer periods of time, giving the refluxed urine time to breed bacteria. That makes me a little nervous. He said we could still try potty training, but take it more at her own pace instead of the rush method (and I was JUST about to buy a book on 3-Day Potty Training that worked for Maddie's cousin!). Oh well--I'd rather she take a bit longer at potty training than get infections over and over. I just want my little girl to be healthy again! Please continue your prayers. We appreciat everybody's support!! :-)