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

And another week is past

Today is the start of week three. Katie Mei is doing so well as far as her attitude, spirit, and physical stamina are concerned. She loves to get out of the room and walk the halls, play in the toy room, push a little shopping car around and pull a doggie on a string. I wish I could do a better job of entertaining her, but she is just lonely for Jacob and Merrilee. Today while we were in the playroom there were two five-year-old girls doing a craft project and she just stood there and stared at them longingly. I know she wants to interact with other children so much, but in this cardiac care unit, the best policy is isolation. So we don't play with other kids and we continually smear her hands with antibacterial gel. She sucks her thumb, so I'm always reminding the nurses to swab down their stethoscopes or whatever they've let her play with. The little kids in this unit are at such risk for a mild infection becoming life threatening, and it isn't worth it to let the kids interact much.

Katie Mei's electrolytes have improved greatly since I got the potassium supplement off the menu. She was vomiting too much and I didn't feel it was worth using. So she's back to eating and her potassium is in a very good range now. She is also taking a drug that helps keep potassium in her body since she's also still on the diuretics for the excess fluid in her lungs.

So the lung fluid is still our biggest battle. I would love to never say we're going on week four, so please pray to that end. Pray for her lymphatic system to adjust to the new pressure in her venous system so less fluid would drain into her lung cavity. And pray for her oxygen level to go up as well. It's all related, and less fluid will mean more oxygen.

Tomorrow Jay is bringing the kids up and I pray we will have a wonderful time, that Katie Mei will be encouraged and the kids will get a burst of renewed joy from the visit. Jay and I are also looking forward to spending more than a couple minutes in passing as well. I am so thankful the hospital changed it's policy on child visitors this week. What a blessing!

Love,
Petrie

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