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

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

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

Beautiful, sub-freezing blessings

Despite the cold temps and the fact that I drove home from North Carolina in the snow storm that brought it, I love this snow and the joy it brings the children. I absolutely loved playing in the snow while I was growing up in Michigan, and I know how much my kids are delighted by it. It's fun that I can't buy at the store, it's exercise, it's not too dangerous, and it gets them out of the house. What mom could ask for anything better? Well, maybe something that didn't track so much water onto the kitchen floor and required a little less clothing. But really, can we get any better than free snow??? And around here, it comes infrequently enough that it always stirs excitement and anticipation. We all love it; we just don't love driving in it while it's coming down with 35 mph gusts and additional sleet. But that's over, and today was a beautiful day!

Snowball fight yesterday while it was still snowing.

Katie Mei was totally unimpressed with the blowing wind and snow yesterday.

Loving this stuff!

Merrilee was the workhorse today.

Clobbered Merrilee with a snow ball!

There are benefits to being the baby in the family!

We have icicles!

Mom said I could taste it.

Eeeeew~Way too cold!