The Latest

After a couple days of craziness, I think things might be settling down. I came home on Sunday to take care of some school work and teach my class today. I also had to take care of a few other odds and ends around the house, so I've been busy. I'm supposed to go and register Jacob for kindergarten now.

Jay called last night and said Katie Mei's regular cardiologist wanted to schedule a catheterization for later in the week because Katie Mei's drainage was around 160 ml. I asked Jay to please check with the nurse because the drainage has been much lower than that for the past several days and I was afraid the doctor (who has only showed up about three times in the past six weeks) was not reading the chart correctly. Sure enough, the attending cardiologist of the week came in this morning and confirmed that yesterday's drainage was around 42 ml and that they would plan to pull her drain tube tomorrow (Wednesday) morning.

So that's where we are. I'm elated that we're at the point of pulling the tube, but I'm also on pins and needles because pulling the tube leaves us no back up if things go badly. Of course, they could take her in for an emergency procedure like they did last time and put in another tube, but outside of that, she's on her own.

Please pray with us that we're at a really good place in her recovery to take that drainage tube out and see how she does without it. Pray she tolerates the fluid that remains in there, and that she will stay stable enough for a few days so they'll let her come home this weekend.

We are missing Jacob and Merrilee something awful now, as well. We won't bring them home until Katie Mei is home, so that's another reason to pray that she'll be home soon.

And finally, please pray regarding all the follow-up care she'll need at home. I'm going to have to give her medications around the clock, constantly monitor her for any signs of distress, and make sure she drinks enough fluids to keep up with the fluid she loses due to the huge doses of diuretics she'll be on each day. She's presently on three different diuretics and is given them each twice a day. If she doesn't drink enough fluid, she'll dehydrate very quickly.

And here are some photos from the last week and this week.

Love,

Petrie

Little Pleasures

Despite the fact that Ms. Princess woke me up at 3:45 a.m. and screamed if I tried to lie back down, I managed to stay awake all day.  I got laundry done early (like before 7 a.m.), got a shower, and even took a walk during her nap time.  I ventured out farther than I've ever gone, but it was still only about 8 blocks from the hospital.  I went to the U of Penn bookstore and found some children's books.  She wasn't completely impressed by my selection, but she really hasn't shown much interest in books yet anyway.  She'd much rather watch TV.  She had a TV in her room in the orphange.  I didn't see a single book there.  She'll have to get used to books in our family.  We're a library kind of bunch.  One of the books I bought was one that Merrilee had as a toddler.  It's a Maisy Mouse paint book.  The paints are on the insides of the front and back cover, and you just use a wet Q-tip to moisten the paint to color the pictures.  She was interested in that for about 15 minutes and then moved on to something new.  

The Childlife workers are celebrating Volunteer week and had the children decorate hands and put messages on them for a bulletin board they're making.  I made a hand that said, "Thank you for playing with me so my Mom could take a nap."  Think they'll guess it wasn't Katie Mei who wrote that message?  These dot paints were really neat.  I think I'll buy some when I get home.

After crafting, Katie Mei found an Easter Peeps bubble blower and a dish of suds on the kiddie table.  I showed her once how to use it, and when she got the grip and squeeze down pat, she was a bubble-blowing nut.  She used up all the suds and then smeared the drips on the table.  It was fun for her, and I love the fact that she's finding some activities that she enjoys.  Playing with the toys just seems to drag her down.  She's into interactive things, not static toys.  Unfortunately, much of what she likes requires other people to be involved.  This is going to be hard when I get back to homeschooling Merrilee and Katie Mei can't occupy herself.

Bubble-blowing fun.

Toward evening, one of the Childlife employees came by with a wagon full of stuffed animals.  She said they were donations (and there had to be at least 30 of them with a bunch more still in the playroom!) and she wanted Katie Mei to come and pick one out.  So she chose a black kitty and a went for a pink unicorn, too.  Tasha told her to take both of them since they had so many.  So our pile of animals continues to grow.  When we went back into the room, Katie Mei put the kitty on the couch and started playing with it, making it walk and meow.  But somehow, the meows turned into barking.  Hmmmm.  Then she immediately grabbed the two animals to her and started singing to them.  I grabbed my cell phone and got the last of it on video.  It was so cute.  She's not much of a stuffed animal fan, so this was a surprise.

And on a final note, I think I know what her problem was at 3:45 a.m.  She's got a molar coming in on the bottom left side.  Just what we needed; a toddler who is teething in the midst of recovering from heart surgery.  I've got her back on Tylenol around the clock for the night...I want to sleep!!!

Love,

Pet

Just tryin' to lighten things up

Coloring is not her favorite thing to do, but sometimes I can get her to spend a few minutes occupying herself with crayons or markers.  Mostly she likes to take the pens from the nurses and scribble on their notes.  She pulls this trick on all of them.  She reaches out her hands and acts like an innocent, curious baby who doesn't know what a pen is.  And as soon as they say "Oh, you little cutie.  Do you want to see my pen?" she snatches it away and starts scribbling on the nearest paper surface.  Fortunately she hasn't learned yet that it's possible to scribble on other things.  I have a feeling she'll figure that out at home on our walls or something of more value than paper.

Katie Mei acting shy, but enjoying the xylophone bells during music sessions in the playroom.  She doesn't just jump into any activity; she always stays back from the crowd and observes for awhile before deciding she's willing to participate.  She's going to be our deep thinker who investigates matters thoroughly before making decisions.

She's a very curious child and she learns routines and rules very quickly.  Nurses are always amazed at how cooperative she is when they have to do any procedure on her, including painful stuff.  She cries during blood tests and when her chest tube is flushed, but never fights or pulls away.  She offers her leg for blood pressure checks, lifts her arm for the thermometer in her armpit, offers her foot for the pulse-ox tape, and takes all her meds very well.  She's got the use of most of the medical equipment down pat.  I think she could probably do her own echocardiograms now if she had to.

She would spend hours on my lap each day if she thought I'd let her.  This is a common position for us (minus the psychedelic light thingy on her forehead), and she loves to climb on my lap.  That vinyl-covered couch is my bed we're sitting on.  

 She demands a lot of my attention, and I'm glad she enjoys it--great for the bonding and attachment. However, there are lots of times when enough is enough and she's mad as heck because I won't hold her like that anymore.  She's gotten very possessive of me, and when an adult comes in to talk to me and she wants my attention, she often pouts or starts to cry quietly.  Gonna be trouble when she gets home and I start lovin' on my other two!  

You can see the chest drain box on the floor next to the crib.  That's what I kicked over today!  Fortunately it only dumped out the water from the water seal and not the slimey chest fluid.

We walk these halls for as long as we can before a) we have to get hooked back up to the vacuum, or b) I go nuts doing the loop more than six times.

Singing to her baby. This girl loves to sing.  She has started picking up books and singing, which I imagine came from the few weeks at home when she went to church and saw us singing from a hymnal.  I don't know where else she'd come up with holding up a coloring book and singing toward it.

This is Ms. Naughtiness.  We go through routines like this all the time.  She loves to try to play tricks on me, and even when she makes me mad by doing this, like doing it when I'm trying to change her clothes or diaper, she always seems to get me to start cracking up.  Just watch the devilishness in her eyes.  She's got a streak, and doesn't hesitate to use it.  She's mostly a very happy, funny child, but she can throw a tantrum.  The good thing is that if I get her laughing when she's mad, she gets over the mad pretty quickly.  She has a tendency to always try to do the opposite of what I say, so if I tell her to sit up, it's an automatic invitation for her to flip herself back.  She loves this game and we do it almost every time I put her in the crib.  

Hope you enjoyed the lighter side of things today.  We all need a lift from the weather and the tedium of this hospital stay.

Love,

Petrie

Change of Plans!

No one can convince me that prayer doesn't get God's attention!  The heart catheterization was cancelled today and the doctors have decided to try a different drug therapy.  The plan is to use diuretics (the one she's been on all along, as well as a much more powerful one) to "dry her up" as they say, and give her Sildenafil (fondly known as Viagra) to dilate the blood vessels.  The idea is that if the blood/lymphatic vessels in the lungs have higher pressure than they should, they will relax and be able to heal wherever they are leaking.  Supposedly the healing takes place rather quickly and the drainage will stop.  Then, she will either be able to just stop  the meds and the drainage will not recur, or she will continue on some low level of diuretic and Sildenafil for a time after going home.  In either case, we're hoping to be looking at decreased fluid drainage in the next few days.  Once that drain tube can be taken out, she can go home.

So please keep Katie Mei in prayer as we try this new approach.  Risks of the Sildenafil are low blood pressure, changes in heart rate, and a slight possiblity of vision or hearing problems.  So far, after her first dose tonight, she's done fine.  Hope we get good results.

Love,

Petrie

Easter Morning

It's not the greatest background for Easter photos, but Katie Mei did get an Easter basket today thanks to my friend Katie.  I had seen the basket at a shop in Leonardtown during Katie Mei's shower, and Katie went out and bought it and filled it for Katie Mei.  Here are some of our morning photos.  I'm also posting the questionable Peter Cottontail we met on Friday.  Of course, now that Katie Mei sees him on the computer screen, she's all smiles and waves.   Wonder what she'd do if he walked through the door right now.

I had a great Easter gift myself.  Jay came up here yesterday and stayed with us girls for the day, and then Jay and I left the hospital for the night once Katie Mei was in bed.  It was a wonderful break for me, and Jay and I really enjoyed leaving some of our stresses behind and treating ourselves to a night without beeping hospital machines and crying babies in the next room.  It came to an end all to soon, but it was a truly enjoyable evening.

We are still praying that Katie Mei's fluid output would slow down before Tuesday, but it's not looking like it's going to right now.  Her lung effusions for yesterday was 240ml.  Yes, that's right, well over her average of 140ml.  It's going to take a miracle for her levels to drop below 50 before Tuesday.

I hope you all have had a blessed Easter as you celebrate the new life we have in Christ.

Love,

Petrie

The was a GOOD Friday!

What a wonderful, joyful day I had! My best friend Katie showed up unexpectedly and spent the WHOLE DAY with us. I was so surprised to see her and just cannot believe she made the 3.5 hour trip up here just to be with us. Other than Jay, she is the only person from home who has come to see us. I am so thankful and just overwhelmed with happiness! It was a beautiful day of friendship, and it was even more delightful because Katie Mei got to spend time with Aunt Katie and make friends with her. If anyone has really supported us in this adoption and helped us through tough times, it has been Katie.

To add to the fun, the (big, scary-looking) Easter Bunny stopped by and gave Katie Mei a gift of Color Wonder paper and finger paints and markers. It was a perfect give since Katie Mei loves to use her Color Wonder paper exuberantly and we were almost out of it.

After the Bunny showed up, Tyler from Childlife came and took Katie Mei on an Easter Egg hunt. Of course Katie Mei wasn't aware of what was going on, but she enjoyed putting the eggs in and out of her bag a few times. Then Tyler and Meredith showed up to drop off an Easter basket filled up with Play-Doh, crayons, hair ponytail holder, bubbles, and lots of other fun stuff. It was so sweet. And all of this stuff is donated by different groups around the area. I wish I knew who cares enough for these kids to go to all this trouble. It really does mean a lot to us. So if any of you out there reading this blog are folks who have donated or volunteered to work with children while they're hospitalized, I want to whole-heartedly thank you. My daugher and myself are so blessed by what you've done, and you've made our stay here much more bearable. We love you; thank you.

I hope all of you have a joyful Easter weekend!

I will end this post with a prayer request. Katie Mei is now scheduled to have another heart catheterization on Tuesday. The doctors are at the point where they feel they need to take another look to see if there's anything correctible that might be causing the continued lung effusions. Please pray that the effusions stop before Tuesday and the cath can be cancelled unless there really is something that needs fixing. I do not want her to undergo the catheterization again, since it comes with the risks of infection, stroke, and other such things. So if the Lord wills it because the doctors can correct something, then I want it to happen; but if it is unnecessary because there's nothing concrete that can be changed, then I pray she won't have to have it. Please pray for this with us.

Blessings and Happy Easter,

Petrie

Junk food works wonders

So it's not so great for her health, but when I opened my bag of barbecue chips tonight, Katie Mei decided to use all the sign language she's ever learned to get some. We tried while we were in China to teach her to sign "more" and "please" and "thank you". And guess who absolutely refused to use any sign language and would rather go hungry than sign for more?

Well, tonight, she changed her mind. I sat down with my chips as she ate her (boring) Kix cereal, and she immediately dropped the bag and started babbling something I couldn't understand. I reminded her that she could not have the chips because they were Momma's and that she had her own snack. Then she sat quiet for a few seconds as I turned back to the TV, munching away on my chips. After a minute I realized she was saying something else and I turned to find her signing for "more" and quietly saying "mo, mo". How could I refuse??? After three months of trying to get her to do this, I could hardly deny her the reward for communicating so effectively.

Of course, this had to happen on the one day I allowed her to get to her limit of 20 grams of total fat on her low-fat diet. She had a hot dog today instead of all the boring healthier food. I even had to get the nurse to call it in, becuase the cafeteria refused to send up a hot dog for a two-year old without direct orders for a health-care professional (choking hazard, you know.... They argue about giving her peanut butter sandwhiches, too.) So she had 15 (yes, hot dogs are apparently loaded with fat here!) out of her possible 20 grams. And then with the other foods she ate, she was at 19.5 grams for the day. So I only let her have the tiniest chips, and she very eagerly continued with the sign language. I was so delighted!

Now I'm wondering if she'll keep doing it knowing that it gets her what she wants. We'll add in the sign for water tomorrow and see if she picks it up.

Love,
Pet