Trying to stay joyful

We're tired of this, but we keep waiting. Katie Mei still has considerable fluid in the lung cavity, so it looks like another week here. She's doing well and is waddling all over the place. She likes to take her doll for walks and stroll past other people's rooms to see what she can see. She's got a pretty good attitude as long as she has a nap.

Yesterday was her 2nd birthday and the hospital staff gave her a doll and a teddy bear, as well as a Carvel ice cream cake. She's not supposed to have anything with fat in it, but they made an exception for a piece of cake.

I'm tending more toward feeling down in the dumps, and a lot of it has to do with the kids back home missing me and the fact that I haven't spent any time with Jay in over two weeks. We've passed twice as we do our switch-off here at the hospital, and most of that is information exchange.

Please pray for me to maintain a Godly, joyful attitude here. I pray hard when I feel it slipping, and God faithfully bolsters me and reminds me of his truths.

Love,
Petrie

A Better Morning

Katie Mei is eating this morning and is in a much better mood. Thank you all for keeping her in prayer. She has been playing games, coloring and just being a happier toddler today. I even got some laughs out of her.

She is off her oxygen now, as long as her sats stay at least above 88. We took a walk around the floor and got to enjoy the morning sunshine. It was wonderful to be free of wires and tubes. She is still wearing the heart monitor, but that is transmitted to the nurses desk and doesn't require the whole set-up.

No more vomiting this morning, and she's off the IV drop for now. Hopefully her belly will continue to feel well and she'll eat more after her nap.

This is a short post, but my brain is about fried and I just wanted to give you a quick update on her progress.

Love,

Petrie

Ups and Downs

I came back to Philly yesterday (Friday) and Katie Mei seemed much better than she had been. She was still showing signs of bowel discomfort and had a bad case of constipation. Also her sodium and potassium levels were low, so she's been given a high-salt diet and an oral potassium supplement which is like drinking straight salt water in a very high concentration.

After enough doses of this potassium, she has started throwing up. Everything she ate today came back up, and she is now back on IV solutions to bring the sodium and potassium back up. She is miserable from the vomiting and doesn't want to eat anything because (I think) her throat burns from the salt. She has been coughing a dry cough whenever she swallows and I don't think it's from any kind of congestion.

On a good note, the fluid in her lung cavity is diminished from yesterday and her oxygen levels are up. Her oxygen flow was reduced this morning and she still stayed right around 90%.

So she's doing okay. Not great because of the eating, but not bad because she's showing improvement and healing in the heart and lungs.

Please continue to hold her in prayer.

Love,
Petrie

Rough night and morning

I wish I had more detail, but all I know is that Katie Mei is not wanting to eat, was having some abdominal spasms last night and was curled in the fetal position because she didn't feel good, and her oxygen levels were in the low 80s without oxygen supplement.

Jay had them put the oxygen back on her and she went up to the higher 80s, but as of this morning she's on pain meds and still feeling bad.

A nurse reported to me this morning that she still has the fluid in her left lung which cannot be drained, but this is "not unusual" after the Fontan. I have come to hate the term "not unusual".

I am at such a low point and we all really need prayer for stamina and encouragement. This is so hard.

Love,
Petrie

Doing Better

As of this morning, Katie Mei has eaten a wonderful dinner and breakfast. Her potassium levels are fluctuating too high and too low, and she's on a diuretic to try to remove some of the fluid in her lungs. That's still not improved and is so critical for her oxygen levels. However, she pulled out her oxygen tube and her O2 sats stayed in the high 80s so the doctors said she could go without it.

Jay gave her a bath this morning and wheeled her to the play room where she got a little fun time playing with the dishes. I know she misses Merrilee and Jacob because they always make "kitchen time" fun for her. It's got to be lonely for her when she's been used to having lots of other children around her all her life.

She is otherwise continuing to improve in little steps. Please praise God for his wonderful works in her in the last 24 hours! I am so thankful that things are looking better today.

Blessings,

Petrie

Need prayers

Katie Mei is now with Daddy at the hospital and I am home. She is still not eating and drinking and that is seriously affecting her electrolytes. Jay tells me they are salting her food and I can only imagine that is going to make her want it even less.

She was moved from ICU to the step down unit yesterday afternoon after I left. She no longer has the constant 24-hour vigilance of a nurse, and I am concerned for her. The Momma in me doesn't trust the staff enough, though in my brain I know they are doing an excellent job. I had asked them to give her pain meds on schedule, but after I left the step-down unit put her on an as-needed program which I am not happy about. I asked Jay to change that today.

Please keep her in prayer for continued improvement. She was doing well with the right lung cavity drainage slowing down, but today I am told she has fluid on her left side now. That is bad because she does not have the chest tube on the left side so there is no external removal of fluid. I hope they do not have to take her back into surgery to put in another tube. The increased fluid levels mean lower lung funtion and thus, lower oxygen saturation.

I am feeling helpless and sad today, since I miss her deeply but cannot be in both places at the same time. Merrilee and Jacob need time with me, and they are both reacting to the upheaval in our family now. Please pray for them.

Love,
Petrie

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