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. 

5 comments:

Cathy Friesen said...

Beautifully told. Thank you Jesus!

Caleb Fields said...

This was an awesome read. Thank you for sharing. We will continue to be praying.

melissa said...

How scary! Glad to hear things are doing better. :)

Lara said...

Wow, that was quite the journey! I love how God gave you the peace as you need it. So glad she is on the mend!

Krista Dearey said...

My goodness! What an ordeal! I'm so thankful she's doing better! Praise God!