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.

The Night of September 8th

I finally have access to a real, working computer, PTL.  Blogging everything at once is far too overwhelming, so here are two pictures from the Night Before Surgery.  I spent about 2hrs braiding Katya’s hair so her surgeon would not have to cut it. Here we are en-progress, charity katya braiding

and here we are all done. It was very bitter sweet. Katya was so pleased with her braids, and kept jumping all around switching her head back and forth to make her braids and katya

I haven’t seen her jump like that since.

Tips for Hospital Survival

Or “How We Are Surviving”

  1. Develope a routine. A routine is much like a tradition– it tells us what we are and what we are expected to do. Routine is the mother of normal, and normalcy is comforting, even if “normal” sucks.
  2. Keep positive. Keeping positive does not mean that you can’t cry or be realistic. For me, it means that in situations where I can either laugh or cry, I choose to laugh.
  3. Communicate kindly and clearly. Speak instead of shout, and say what’s really bothering you, not just what you *think* is bothering you. Your family is stressed, too.
  4. Talk to the other families. It’s refreshing to hear about someone else’s struggles.
  5. Make normal happen. Drag it kicking and screaming and force it into its new hospital shaped box. Mum and I watched a movie on Netflix this weekend. It took us two days to get through it, but it was really great to do something together besides  talk medical stuff. Later this week we’re hoping to leave Katya with daddy for a bit and go out– anywhere, really– with the volunteer van driver. We’re really looking forward to it.
  6. Don’t think about home too much. You are needed in the present, in the hospital. Dwelling very much about another time and place, and all the things you are missing, isn’t going to help anyone, and will sap your emotional energy.  For me, “very much” is the duration of one Skype call, two viewings of the “events” listing on Facebook, three minutes of serious thought.
  7. Trust God. I could have mentioned it first, but I mention it last because trusting God, and believing in His Goodness, is essential for everything.

Katya Yesterday

The most liquid we got into Katya at one time yesterday was  60 ml. of cranberry juice. She’s still not eating or drinking anything approaching normal amounts.

Katya felt just well enough to be bored, but not well enough to do anything. When a kid came bouncing past her door on an exercise ball, Katya burst into a fit. Of giggles, which turned into a puddle of tears. Katya loves bouncing on exercise balls. So the nurse went and brought a wheel chair that would support her head, and padded it up with pillows, and we took Katya for a ride. It was the most excited I’ve seen her all week.  I mean, if mum and I get a bit stir crazy after spending most of the day in one room, imagine how Katya must feel after several days of staring at the same ceiling.

We took her out to the little garden between Bloomberg and Phipps, and Katya sat for awhile feeling the breeze and listening to the water.  She also wanted to go to the play room, and she made a bead string.

Later that evening, she got to have a tub bath, which she enjoyed very much. Overall. I think she had a good day. (please excuse any typos, because I cannot fix them. Also, I still can’t post pictures.)

Continue reading

I Wish I Could Blog

I know; here I am. But not really. Pecking away at an I-pad, with no ability to upload pictures or access saved drafts, isn’t very satisfying. All the “real” computers I have access to aren’t cooperating. They are simply too old to be of use. I don’t know about the free Hospital computers, because the family resource library is only open Monday-Friday, and I missed it yesterday.

I sat with Katya this afternoon so mum could get out of the hospital. She’s not eating very much yet, but she drank a can of v8 juice and ate a bowl of carrots for that she’s eating more, she’s in good spirits, and has stopped lying in bed with tears silently rolling down her face into her ears. I mean, shes not her normal, bouncy self yet, but yesterday she chuckled to herself, and she’s been more smiley and conversational today. Katya, I mean, not mother. This iPad isn’t being very cooperative.

Dr. Dorafshar is delivering exemplary care, as usual. He’s been to visit Katya three times since surgery, even when he was very tired himself. Actually, everyone on Katyas team has been doing a great job.

As for me, I’m tired of things being weird, and shuffled. I miss not having mum around at night. I miss being able to use a real computer. I’m tired of sharing a room with people other than my sisters. I don’t miss our house, so much, but I miss the privacy it affords, things like multiple bathrooms that aren’t adjoining the sleeping space. I want to be able to go into my own living spaces without a camera watching me.

Continue reading

Katya’s Patching Surgery

She’s doing all right.  Miserable, but alright. I haven’t seen her yet. When mum and dad got her up at 5, I couldn’t go back to sleep for ages. The bed was too cold, both poetically and literally.

Mum and dad didn’t get  back from the hospital until 9:30ish, because Dr. Dorafshar was delayed by an emergency liver transplant, and so her 7:30 surgery was bumped back for two hrs. There was a terrible moment when a Fellow came out, and told mum that the surgery was canceled, because Dr.D was too tired to do it. Mum says her heart sank, and her head spun. Every hour had come to this, and all the months of planning were wasted.  But in two minutes, a nurse came rushing in, and hoped that Katya hadn’t had anything to eat or drink, because the surgery was back on– Dr. Dorafshar had cancled an adult patient instead.

All day we’ve been waiting for  news, and praying. And now that we have good news, I don’t know what to do with myself anymore than before. Possibly less. I want to have a good cry, but my body won’t quite cooperate. I want to sing, or jump, or shout, and I have a headache. I didn’t before. I know how to fight through stress, but I hardly know what to do with relief, especially when I don’t have my mum around to hug (mum and dad are with Katya)

And Katya is okay! Well, in a lot of pain, and with bruises all over her poor little arm from where they tried and failed to start a central line, but she’s not dead, and I can’t see her yet.

“Thank you, God” just isn’t adequate.

A Breezy Skirt

I’ve finally got another “J” skirt (from “Stylish Skirts” by Sato Wanatabe” made up, in a very light and thin fabric with a raised grey dot. I like how it turned out, and how it actually looks better  un-ironed!

(I see that I neglected to take the size sticker off my shirt before Kristina took this picture. Don’t look too close! :-) )Stylish skirts j 011

The waistband turned out especially well, I think. When you are cutting the waistband out, double check the measurements to make sure you have enough width for your three casings. The measurements given in the book are just a bit off. Fortunately for me, because I cut the waistband out on the selvage (thereby not having to iron both edges under) I was able to use my 3 1/2″ quilting ruler as a pattern.

Stylish skirts j 014

I’m really looking forward to wearing this skirt! And may I just say that I love this pattern?!