September 17th

Johns Hopkins’ farmer’s market.  I got ginger-pear lemon aid for Katya.


She was in the middle of a lab draw when I came back. Two nurses, the Child Life Specialist, two clowns, and mum, all working hard to get her through it. She was so scared and needed a lot of support. Katya tried hard to be brave!

207 211 And then we took her out for a walk.12036436_10204875548314967_4260360127743130174_n

September 16th

“Strep is negative. Fever spiked badly while she was out getting abdominal X-Ray. It is finally back down with Tylenol. She still shows her throat hurting, specifically in the hollow of her throat but has done better about eating and drinking a little today. She was really happy when Chad showed up and decorated her room and eat a snack (ice cream sandwich) with her!! So glad he could come and it seems to be good medicine for her!” ~Mum’s Facebook

Chad came by to cheer us up, and to see Katya and Mum. Mum and Chad did shadow puppets,174

Chad decorated,

180 181

203 196

mum talked on the phone,187

I took artsy pictures,186 195 201

and Chad read to Katya.


It was nice.

September 15th, in Pictures and Words

On September 15th, they were going to discharge Katya. They were going to discharge us that morning, but when we protested because Katya was spiking fevers, having horrible diarrhea, still not really being able to eat or drink and had a swollen forehead, the hospitalist Pediatrician decided to “humor” us, and said that she would keep Katya in the hospital until after lunch.

Mum and I knew she shouldn’t be discharged, but we did not know what else to do because we had protested strongly already. So we began to pray that God would bring clarity to the situation.  Meanwhile, for lunch, we took Katya for a wheel chair ride down to the cafeteria.130 And on this particular day, we finally explored the old part of the hospital.132

We really enjoyed going out with Katya.

Just as we got back to the room, Child Life was gathering up a group of kids for a “build your own pillowcase” activity, held in the Great Room of the hospital.135 147

While Katya made a pillowcase–well, she supervised–I admired the view. This is the back side of the Children’s House from 11 stories up.

Katya had been rather listless all day, and it was just getting worse. Along with that, she began to feel very, very hot.134

As soon we got back to our room, the nurse showed up with discharge papers in hand. We asked the nurses to take Katya’s temperature before discharge because we did not have a thermometer at the Children’s House: it was high–over 102 with Tylenol at peak dose.  The nurses eyes got wide and she said she was going to call the Doctor’s. The “after lunch discharge” was put on hold until “maybe after supper”. By supper, Katya’s temp was even higher–over 103–and so the discharge was officially cancelled. We thanked God for bringing clarity to the situation!

Katya was put on isolation as a precautionary measure, while they tested for C-Diff and whatnot.  After that, nothing much happened for the rest of the evening. There’s a lot of waiting in the hospital–waiting for nurses, waiting for teams to show up, waiting for food.

Because of the fever and general crumminess, Katya had to have labs that night, which she hated.  This picture is of Katya in bed, rocking back and forth in fear. Behind the nurse, not visible, is the VAT lady getting ready to take Katya’s blood. Mum is encouraging Katya, and Nurse Nicole has gently put her hand on Katya’s back. 160

Because the labs came back normal, everyone except Mum and I thought the fevers, crumminess, and diarrhea were ‘just viral’. We had our serious doubts. Like Mom told the Pediatrician, “This is not like any virus I have ever seen before.”162

Heading Home

We’re heading home tomorrow. It’s really weird. We have routine here. As soon as Katya got out of the hospital, normal started happening. It’s almost like she was never *in* the hospital to begin with.

Normal is obviously very tenacious.

We’ll just have to wait and see how things go once we’re really home.

Frankly, I’m a bit nervous about going home. I haven’t done well keeping up with things while I was here in Baltimore. I thought I would blog, journal, do my math homework, practice my violin, and finish a stack of job applications.  I didn’t do well with any of that.  I have my reasons, of course, good, valid reasons–but I’m still behind.  “Reasons” don’t change that.

I’m also worried about going back to the “daily grind”. I’m concerned that I will just begin vegetating at home, just sitting on the computer not doing anything interesting or useful. That’s why I love being in Baltimore with Katya because, however hard it might be, I usually feel useful. I have a purpose, and am doing something meaningful. At home, what do I do, now that most of my volunteer stuff has died down? I make supper and hold the fort while mum runs people to appointments. Also useful, also meaningful, also hard, but… less fulfilling, somehow. It’s definitely less interesting.

I am going to be doing MOPS this winter. I’ve never helped with anything like that before, but some of my friends are the best in the business at child care, so I’ll have lots of advice. :-)

Anyways, I know you mostly read my blog to hear about Katya, and she is doing well. I am sorry that I don’t have more pictures up. I have 513 pictures on my camera, and that is going to take a long time to download and sort through, so y’all just going to have to wait.

Oh, she had her post op appointment with Dr. D. yesterday. He was in fine form, and styled a dark grey suit with a pink silk tie and a flamingo lapel pin–not as flamboyant as it sounds, really.  Dr. Erin came too, and boy, can that woman rock scrubs! Infectious Diseases came in–I.D. for short– and it always cracks me up how enthusiastic they are about their field of study. I mean, these guys (and girls) can get positively bubbly about bacteria and viruses. Found strep in the stroganof? Hooray! Gangrene in the gonads? Is this awesome or what?!  They really like seeing what grows in the petri dish.

Anyways, Katya got a provisionally clean bill of health–we have to see how she does once her course of antibiotics is done, if the infection will come back. Dear God, please, no.  And we’ll be back here in 4-6 weeks for Katya’s eye appointment.

So tomorrow we’re headed home.

September 9th-11th, October 2nd

Since Katya got out of the hospital on a trial basis yesterday, October 2nd (hooray!) it only seems fitting that I catch you up just a wee bit on the beginning of her hospital stay. This is Katya after surgery, her first night in PICU. The nasty red line is a drain tube.katya 014

Katya’s forehead: katya 018This is a really neat sheet Child Life had typed up and posted where everyone could see it:katya 024

It helped a lot. Everyone did really well relating to her.

Katya felt fairly well that first day. Dr. D had left orders that she could advance her diet as fast as she wanted, so she was able to eat popsicles and Italian Ice.

katya 025

The next day (Sept. 10th) she got an IV out of her foot. Child Life did really well prepping Katya for procedures, and she coped with everything really well.katya 034Our PICU view:

katya 032Then she was moved up to the floor.  Our breathtaking 10th floor view:katya 058

Mum and I ate supper with Katya. Chick-fil-A brought supper in to the Childrens House. I took up residence on the window ledge.katya 047

On Friday I brought Chad to visit.katya 056

Katya enjoyed seeing Chad, even if he did annoy her a bit. But I think a bit of healthy annoyance can be a good thing.

Fast forward to Oct. 2nd–

This is Katya getting out of the hospital yesterday: Katya out of Hospital

It was a bit bitter sweet– it’s sad to leave all her wonderful nurses and Child Life staff. But it was so nice last night to see her sweet face on the pillow next to me. Katya’s doing really well! She’s only a wee bit shaky about eating and drinking. We hope we can go home soon.