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

Just call her aqua-lung

Well, this girl is just continuing to flow. She is back to where she started with the drainage and it doesn't seem to be abating. We are on day 28 today. The doctor said "She's not even close to going home." So we continue to wait. She is tolerating the albumin infusions twice daily, and will probably be done with them after today. I haven't gotten the results of her blood work yet. Her x-rays are wonderful, showing nicely inflated lungs and no residual fluid. The chest tube is working well, obviously, and she's not in any more pain except when someone comes to flush the tube. She's not taking anything for pain now, though. Not even Tylenol.

Katie Mei is starting to talk a bit more, with some not-so-well pronounced words for going to bed "nigh-nigh", cold "toad", hot "hassa", "gentle", "hello", more "mo", and lots of grunting and pointing. We're getting there. She still babbles a lot and some of it sounds Chinese. But when I ask simple questions in Chinese like "What do you want to eat?" or "what is your name?" she does not respond. My pronunciation isn't perfect, but it's no worse than hers. She is just in that period of language confusion as she trasitions to English. Merrilee did it too, and refused to even listen to spoken Chinese when she came home.

Yesterday evening Katie Mei and I were looking at photos of our family when she took a picture from me, pressed it to her lips to kiss it, and then hugged it to her neck. It was a take-my-breath-away moment. I am so thankful for that little touch. She misses her family, which means she knows she has a family. I am so in love with this child, and these little things just make my heart fill with joy. I can't wait to get her back home.

Thank you all for your comments, prayers, and encouragement. It means so much to me to have your comments pop up on my cell phone (which gets email) through out the day. Even if I don't respond, my heart is warmed by them and I am thankful.

So we continue on into our second month now, and will be here over Easter. I'm disappointed, but we'll get through it.

Love,
Petrie

Things might be looking up

This weekend the drainage started to taper off and today's x-ray showed that it is indeed less fluid in the lungs and not a clogged tube! She is doing well and her oxygen levels are in the mid to upper 80s. This is all very good news.

On the down side, she's back on the IV because her albumin (protein) levels are low. I was so disappointed this morning when the news came. But the doctor wants to try to bring the levels up. She also said albumin helps regulate fluid in the veins, so this might help with the fluid output as well.

So this is where we are today.

Please pray for the albumin levels to come up, the drainage to stay low (IV fluid will increase her fluids levels, so she's got to have a diretic immediately after each IV session), and that none of her other blood chemistry gets out of whack. My heart's desire is to have her home for Easter next weekend, so I'm adding that to the prayer requests as well.

Merrilee and Jacob are doing well at Grandma and Grandpa's house. I'm so glad to know they'll be able to hang out there as long as needed and that they'll be able to enjoy warmer weather than they would have at home.

Thank you for keeping us in prayer and thinking of us.

Love,
Petrie

Blessings,
Petrie

Week Four

As of yesterday, we are going on four weeks. I had really hoped we'd not go past three, but that's no longer an option. We had setbacks this week that will probably keep us here for at least another additional week. Katie Mei's drainage tube sutures slipped out. pulling out the tube, and she got air in her lungs which partially collapsed her right lung on Wednesday. She had to be taken in for a surgical procedure to put in another drainage tube under her right arm, and this new tube is very painful. So she's back on oxycodone and is not feeling very happy. She is alert and active, but in pain much of the time. This has caused her to breathe poorly (gasping breaths called splinting) and now her oxygen levels are low. We had folks in our room all night last night being fretful over this. They even called in the x-ray and cardiothorax surgical team members to check her out at 3 and 4 am. It was yet another night of no sleep.

Home life is also complicated now. Our cat is dying and Jay had to come home to take her to be euthanized. Then he's going to take M &J down to my parents' house for the rest of our hospital stay. It has just gotten too difficult to try to organize child care and other activities while I'm here. I cannot do it any longer and though many people have been so helpful in watching them, it still costs me much time and energy to organize it, and I just don't have the expendable energy any longer.

Katie Mei is not doing any better as far as the lung fluid is concerned. She is still producing a lot and there is no end in sight at this point. So we wait.

Love,
Petrie

No improvement

Hi,
I'm just going to give you the short update that things have not changed. Katie Mei still has a lot of fluid on her lungs and cannot go home. She's doing all right otherwise. She wants to walk around and hang out in the playroom when it's open. But otherwise she's just bored and not having any fun.

I'm not having fun, either, so I"m going to take a break from blogging for awhile. It's been 18 days, and I feel like there isn't anything else to say. I will let you know if there's good news, though.

Thank you for keeping us in your thoughts and prayers.

Love,
Petrie