Huge Turnaround Late This Afternoon

I am so glad to report that prayers were answered at 3:45 pm today. After watching her be so sick all day yesterday, and being sad to see her so depressed and unresponsive today, I was thrilled when she "came back" at 3:45.

Her sodium level had gotten very low, to the point of the doctors worrying about her having seizures, so the nurse was preparing a sodium drip. Before the IV was even set up, Katie Mei turned to me and looked me in the eyes. She hadn't done that at all today. She started to babble a tiny bit, and even wanted to eat her cheerios and rasins. Her oxygen level started to climb and her chest drainage immediately slowed down. It was amazing. It was instant change. I can only attribute it to God's hand; He answers prayer! Even the nurse and staff was shocked at how it happened.

She is now resting comfortably. I need to go back and check on the results of her latest blood test, but I'm positive her sodium level is back up. She's been dosed up good.

Thank you all for praying, and please continue to hold the many other families in your prayers. Can you believe one local mom who's baby is in the CICU here actually went home today and cooked huge amounts of food for the rest of us tonight. I had a delicious home cooked meal, including salad and garlic toast. It was heavenly. She truly blessed us all even in her own time of need. I am so thankful for her graciousness to all of us. I have found a beautiful family in the other parents here, and am so enjoying their presence. I am uplifted many times a day, and have the opportunity to pray with others, for others, several times. It is a gift I never would have known if we hadn't brought Katie Mei home. Blessings abound!

Love,

Petrie

Difficult Weekend

Katie Mei has not been doing well this weekend. She spent most of yesterday (Saturday) vomiting. She has not eaten and kept down solid food since Wednesday. Her chest cavity is also still draining a lot of fluid and hasn't decreased since Friday, thus they cannot take out the drainage tube. Last night she was given an anti-emetic for the vomiting and today she took formula and a little yogurt, but still has no desire to eat. She just wants to lie there with her eyes closed. It's sad to see.

On a positive note, she returned to normal heart rhythm late Friday night and was taken off the pace maker, so she's been holding her own since then. She's had some minor arrhythmias, but nothing anyone here is concerned about. She also had the heart tube removed (that was for administering drugs directly to the heart if needed) and had no problems with that.

Our big prayer request now is that she get back to eating solids and that the drainage would decrease dramatically.

Thanks for holding us up,
Petrie

Pink Fingers!

Day two

Katie Mei is doing pretty well considering the trauma her body has just experienced. She's on a pace maker for the time being because her heart just won't keep it's own rhythm. She drank lots of pedialye and formula this morning, so she's satiated that way. I'm thankful she's able to keep the fluids down.

We're still seeing more chest drainage than we'd like, so her chest tube will probably stay in another day. Hopefully she'll do better by the end of the day and into tomorrow.

Thank you all for praying and thinking of us.

Love,
Petrie

She is in the ICU

Well, it seems like a dream, but she's out of surgery and Dr. Spray just came to talk to us. He said it was "routine" and nothing out of the usual for him. Waaaaaay out of the usual for me, but I was glad to hear there were no surprises. He said she tolerated the procedure well and she's in ICU now getting rewarmed (oh, that sounds so icky to me). He said the her O2 levels went lower once he did the surgery so he had to close up the fenestration somewhat so there wasn't so much blue blood flow between the heart and pulmonary artery.

He also said her heartbeat was strong after surgery, which is great. Once the heart has been "turned off" for awhile, it sometimes doesn't want to get back to work, so that was a concern we had. Hope it keeps up the job it's supposed to do.

We won't be able to go back and see her for about 45 minutes to an hour. They're going to try taking out her breathing tube and get her set up with all the wires and whatnot. I'll post more when I can.

Please keep her in prayer for no kidney damage, no brain damage, no excess fluid around the lungs and heart, and stable heart rhythm. She still has a lot of recovering to do, and we are told that it sometimes take three days or so before fluid starts to accumulate, so she's not out of the woods yet.

Love,
Petrie

She's in surgery

Just a quick note to let everyone know that Katie Mei went into surgery at about 7:25 am, and is still in there. We got an update that the surgeon was right in the middle of it at 9:30 am and everything was going well. We expect another update in about ten minutes, so I'm going to head back to the waiting room. I'll post when I can.

Love,
Petrie

From Icicles to Popcicles in six days!

Hard to believe it was in the 80s yesterday! Just one week ago we were blasted with 8" of snow and it got down to the single-digits. When they say March comes in like a lion, I believe it must be a deranged lion with distemper or something!

Yesterday it was hot enough for the kids to wear shorts, and we found out that Katie Mei does not do well in the heat. Her hand and lips were very blue, and she was really struggling to breathe. So we had to bring out the popcicles to keep her cool. She wasn't interested at first becuase she does not like cold stuff in her mouth. I showed her how to lick a popcicle, but she still didn't want to try. So I had to pull the old switcheroo. I acted like I had something in my fingers to give her to eat, and when she opened her mouth I stuck the popcicle on her tongue. After a couple times (she doesn't catch on fast that it's a trick) she finally got the flavor of grape in her mouth and she was intrigued. So she stuck out the tip of her tongue and let me rub the icy treat on it. She decided it was good, and took over the task for herself. Alas, the girl likes popcicles!

I was delighted that she did get to experience a nice warm day yesterday, and we're having another one again today. She goes up to CHOP on Wednesday to prepare for open heart surgery on Thursday. There will be a long period in the hospital and afterwards inactive recovery which means no playing outside in the sunshine. So a few days of soaking it up now is such a blessing to us.

Please keep her in prayer during this time, and give thanks that we have access to such wonderful care at CHOP.

Love,

Petrie