Tuesday, July 29, 2014

Nora drama continued

Nora right before all this started - 4th of July
Well, it's been quite the adventure since I wrote that last post. I was thinking that Nora was on the road to recovery, and she was (and still is). But I did not foresee the drastic measures that would be needed to ensure that recovery.

On Wednesday I called the doctor again because of the vomiting and low grade fever. They had me come in and this time the doctor said, "It could have something to do with her kidneys. Let's send you in to the ER and do a blood test." So, dutifully we went to the ER. Sat in the waiting room for 3 hours. Got in to see the doctor, and after listening to our story and checking Nora out again, he said, "She seems fine, you should just go home. It's probably just another virus on top of the last virus." We pressed him, asking questions about things that weren't adding up, telling him that our doctor had said maybe it was her kidneys. Finally he said, "We can do blood work if you guys want to, but I'd be shocked... well, not shocked, but really surprised, if this had anything to do with her kidneys." I looked at Greg helplessly, I had this sinking feeling in the pit of my stomach. I felt like there was something really wrong, and now the professional was telling me there wasn't anything wrong, but I couldn't quite believe him. Greg wasn't going to back down though, "I'd like to do the blood work," he said.

So, they did the blood work and from that, the pediatrician from the hospital was able to make the correct diagnosis. When he came in to talk to us and told us about this syndrome called HUS, all of a sudden everything started adding up.

It turns out that Nora had HUS (hemolytic uremic syndrome). She had all the signs and symptoms, and we had been calling and going to the doctor (and the ER), but it had just been missed or misdiagnosed the whole time.

So, when she had the week of diarrhea - that was from E. coli (or possibly another bacteria). The toxins from the E. coli then got into her blood stream and started to break down her red blood cells. Thus the pale skin and lips. The red blood cells then clogged her kidneys and prevented them from filtering the way they should. Thus the lack of pee for days, and also the swelling in her cheeks and abdomen. Then when she did start peeing, all of those red blood cells were coloring her pee - resulting in the dark bloody urine. Without the right amount of red blood cells in her blood, her body was having a hard time getting the oxygen it needed. This resulted in high blood pressure and an elevated heart rate.

Grandma and Nora.
Picture was taken a few days after she had started peeing again.
Notice her slightly puffy cheeks and overall lack of color.
Her body had already dealt with the worst part (when she wasn't peeing) on its own. But now they wanted to admit her to the hospital and make sure that her lab results were continuing to improve, and that her blood pressure didn't get too high. So we settled in for a night at the hospital. They started her on blood pressure medication and monitored her throughout the night. (I always find this a lovely part of the hospital: "You're sick. Now get better. But don't sleep!") In the morning they drew more blood and all of the levels were going in the right direction. Her blood pressure and pulse were still quite high, but she was eating and drinking and very stable.

She wasn't getting any sleep though. As soon as we got her to sleep a nurse, or cleaning lady, or doctor would come in and wake her up. She was super cranky and asking to go home. Finally I put a sign on the door that said, "Do not disturb unless absolutely necessary. I need a nap!" And Nora and I settled in for a nap.

A couple hours later (the sign did indeed work) the doctor and nurse came in and told me that they had been in contact with the kidney doctors up at Doernbecher in Portland, and that they thought that Nora needed a blood transfusion. Her blood pressure and pulse were high because of her lack of red blood cells, a blood transfusion packed with red blood cells would give her body an extra boost, and help her heart rate and blood pressure come down. At that point the doctor told me that we would be able to drive Nora up to Portland since she was so stable, but later that changed as the kidney doctors insisted that Nora be transported by ambulance.

So into the ambulance we went. Nora and I, once again, in an ambulance together.

Now this whole time Wanda (my mother-in-law) had been with the other two kids. Greg had been going back and forth between home and hospital. At this point he was at home, so the doctor called him to tell him the news. He and the kids and Wanda decided to follow us up right away. So they quickly threw stuff into bags and backpacks and loaded up.

When Nora and I got to Doernbecher we were directed to our room. As soon as we turned the corner into our room there was my friend Sharlene, who just happens to be a pediatrician, waiting for us. I can't tell you how relieving it was to see a friend right at that moment. I didn't feel worried, or overly emotional, but as soon as I saw her I felt like I exhaled a little of the breath I didn't realize I was holding. We hugged and then the second thing Sharlene did was pull down Nora's eyelid and look into her eye. "Oh good," she said, "she still has some pink."

After a terrifying experience comforting Nora as they put in her IV (note to self: that should have been Daddy's job), they started her transfusion. Slowly, all night she got the blood she needed. Throughout the night I would get up to comfort Nora whenever I heard her crying because they were checking her blood pressure or some such thing. Very early in the morning I looked at her with my bleary, sleep deprived eyes and thought, "She looks kind of pink for the first time in weeks!" I couldn't be sure though, since I still had my early morning eyes. But sure enough, when I got up a little later, Nora once again had her color back. She also was extremely swollen on one side of her face (the side she had been resting on), but they assured us that the swelling was normal and would go down, which it did. Her blood pressure and pulse came back down. She was still on the blood pressure meds (and will be for a little while), but other than that her body seemed to be doing well.

Blood going in. Face looking pinker.

They continued to monitor her throughout the day. The kidney doctor (and a bunch of interns) came and talked to us. He was amazed that no one had done a stool sample when she had bloody diarrhea. He just shook his head when I said that I didn't think the doctor's believed me when I said she wasn't peeing. He said about half the kids who have this have to be on dialysis for a short time. He said he was glad she wasn't in that half. So were we. The nutrionist came and talked to us about Nora's new - low sodium, low potassium, low phosphorus diet.  They checked her labs again in the afternoon - especially looking at hemoglobin levels and percentage of red blood cells. Everything had improved just as they'd hoped. So, to our surprise, they told us we could go home.

Late in the afternoon they discharged us. As the nurse was going over our discharge paperwork, she told me, "This is the shortest HUS summary I've ever seen. It's not uncommon for kids to spend weeks in the hospital for this."

We spent that night at Wanda's house. The kids slept on the floor together, and stayed up too late giggling. When I went in to take a picture after they had fallen asleep, I found that Leesi had fallen asleep with her hand reached out to touch Nora's head. So sweet.

Sweet sleeping siblings - together again.
The next morning the kids picked berries outside in the morning sunshine. And things felt just about perfect.
Raspberry girls. Nora's face still slightly puffy from transfusion.
Nora still tires easily. She will need to be on blood pressure meds for awhile. She plays a little more quietly than usual. But tonight she ran around with the Elisa a little bit, so she's getting her energy back. Her appetite is back with a vengeance

Through this whole experience I felt a huge amount of peace carrying me through.  I just took one step at a time, doing what I could do, and leaving the rest in God's hands, trusting that He is good. (Right now, I can just hold Nora and try to get her to sleep. Right now, I just need to sing to her as they poke her. Right now, I get to enjoy my other kids for a few minutes. Right now, we have to ride in the ambulance.) I had started to congratulate myself on this sense of peace, until we got back home, and I logged into Facebook for the first time in days. I saw comment after comment saying, "praying for you." And I realized that hundreds of people had been praying for us. It was beautiful and overwhelming. And I was so thankful.

There were so many other ways that I saw God's goodness through this whole experience too. Little things that weren't "necessary," but were just God's gifts to me. Here are a few of those things:

Greg was in Portland on Wednesday for work when I found out that I needed to take Nora to the ER. But Wanda had, spur of the moment, decided to drive down to see us, before she even got the phone call about us needing to go back to the ER. So she was here in time to take the big kids to their swimming lessons, and I could leave to take Nora to the ER.

I'm thankful for people who make hospitals beautiful with artwork, for the pianist in the hospital lobby, and the pink hydrangeas planted outside. The beauty fed my soul.
Pink hydrangeas (one of my favorite flowers) outside the Springfield hospital. 
I am thankful for the playroom down the hall so that the kids could play together for a little while when they came to visit.

I am thankful for all those who came to be there for us when we got to Doernbecher. Sharlene came (and brought chocolate). Her presence was very comforting. Alan brought lots of food and drinks. The Kind bars he brought gave me the energy to make it through the second night of light sleep. The Hammersborgs came to see how we were doing. Rolf cracked us up by donning the full medical isolation outfit before coming in. Uncle Rick came to make sure Nora was okay. He was very relieved to see Nora standing, looking out the window when he came in. He was expecting lots of tubes and cords.

"What? Sarah, why aren't you wearing this?"
And of course, I'm thankful for Wanda caring for the big kids the whole time. She was the perfect person to be there for them. 

And my heroes, Stead and Sarah, who came and cleaned our house so that when we got back home there wouldn't be a pile of dishes (swarming with ants) waiting for us, and kids' toys everywhere. They really went above and beyond the call of duty. 

And most of all, that Jesus carried Nora's little body through this ordeal. I trust Him with her little life, and I am so thankful that He has entrusted us with her care for a little (or hopefully a lot) longer.    

Lots to be thankful for. 
Jesus loves me this I know.
For the Bible tells me so.
Little ones to Him belong.
They are weak, but He is strong. 

Tuesday, July 22, 2014

Nora drama

For the last two weeks Nora has been battling one thing after another. First she had almost a full week of very intense diarrhea. From that she ended up getting dehydrated and stopped peeing, which then led to bloody pee and a bladder infection. We had numerous trips and calls to the doctor, and one trip to the ER. The poor baby. She has just not been herself. Her coloring is what my mom (who visited this weekend) described as "grey". She needs to be held constantly. She asks to go to bed, and doesn't even want a book first. She started antibiotics on Thursday, and now still (5 days later) she is not quite right. But we are thankful for the little improvements we see. Yesterday she spent much of the morning playing quietly, which was a nice change from needing to be held or lying on the floor. This afternoon she had a low-grade fever and threw up again, which was a step backwards and got me worried. But then she ate a lot at dinner and seemed happy. We are hoping and praying our little sweetie can make a full recovery soon.

Saturday, July 12, 2014

Zoom Went the Car

Sometimes Jonathan and Leesi like to type on the computer. I open up a Word document for them, and just let them go to town. Mostly it ends up looking like this:
But last time, Leesi and Jonathan sat together and they ended up with this cute little story:
Zoom   went    the       car         oh no  the       car        crashed         in           to     a   big                             truck     it      was       night      the    car     broke down            the       tow truck                                came     it      towed    the         car    went         to    bed     
Clearly Elisa was the brains of the operation. But I think Jonathan contributed a little too. She had help spelling a few of the words. But for the most part, they did it all on their own. 

Summer Fun

We've been on some fun adventures already this summer... here are some of our memories.

 Seattle Day Trip
We realized that we had never really taken the kids around Seattle at all. Seeing how it's so close to my parents, we decided to take a little day trip. First stop: Seattle Center. When we caught our first glimpse of the fountain, Nora stood up in the stroller and squealed with delight. Then, as we got closer, she decided that it was better to watch from a distance. Leesi also was hesitant to run around in the bowl of the fountain. But Jonathan got right down in there; he loved running around down in the fountain, just on the brink of getting wet. 

A little later in the day, the big kids and I rode the water taxi over to West Seattle. They were pretty excited about being on "a boat." But when I tried to get them to venture up to the top deck out in the open air, they were NOT going to do it. I finally coerced them up to the top, but they couldn't wait to sit back down on a seat inside. Maybe they were scared by the instructions given over the speakers at the beginning of the trip about what to do if someone fell overboard. Still, they loved it. 

Later on in the evening we went to the Mariner's game with my family. The kids liked seeing Safeco and were excited that they each got a train as a special giveaway (especially Jonathan). My parents took them home and put them to bed after the second inning, which meant that we got to stay and enjoy the rest of the game with my brother and sister-in-law!

13th Anniversary trip to Bend
For our anniversary Greg and I got out of town and headed to Bend. We stumbled upon the Bite of Bend one day and got to watch a cooking competition (Top Chef Bend). We decided spur of the moment to go white water rafting, super fun! Did some "mountain biking" using our road bikes, which we had brought along. Enjoyed the great outdoors and each other. 

When we got back home the kids told us, "Mommy, Daddy, come see! Close your eyes... now open!" And there on the kitchen counter was a beautiful butterfly cake and homemade cards, it was very sweet, and they were very proud.

Fourth of July
For the fourth we went over to a friend's house. The kids had a great time playing in the slip'n'slide, and watching a few little fireworks. Nora enjoyed her watermelon.
I love how in these pictures you can see the excitement on Jonathan's face and the smoke still in the air from the fireworks.

Beach Trip
Just this week we went to beach with Wanda. It coincided nicely with my birthday, which was lovely. We had to stop at the Cheese factory, of course!

We had beautiful weather, sunny and 70s... but on the beach it was a bit windy. Luckily Wanda brought an umbrella which we used as a wind shield. At one point it blew away and Greg had to run down the beach after it. A little later, it blew away again. This time none of us noticed right away because we were busy with other things. None of us, that is, except Jonathan. He saw it blow away and ran after it just like Daddy had done. When he finally caught it though, he couldn't bring it back. Finally, I noticed him struggling with the umbrella and ran to help him.

The kids can play in the sand for hours. They decided to make me a birthday sand cake with pretzel candles. I sang "Happy Birthday to me" and blew out the candles. Then we all ate the pretzels... the sand added a little extra crunch.

Everyday Moments

Nora with the water sprayer. 
Nora walking around Costco with her new backpack.
She had to have one since the big kids were both getting them.
We heard, "That backpack is as big as she is!" from about twenty people.