Thursday, April 30, 2009

It's a Wrap!

As soon as Jeff gets here, we are outta here! :)))) Kate's chest x-ray looked terrific and that was our last hurdle.

One of her PICU nurses came by today to say hello and was shocked to hear that Kate was going home today. I told her it was the prayer and she said Kate's story gave her goosebumps. I do not take that lightly because there are soooo many babies and children who spend time in PICU here. The part of PICU we were in was actually PCTU (Pediatric Cardiac Thorasic Unit), which means it was only for kids who had received heart surgery. When they see a child in Kate's shape, make such a dramatic turn-around and leave the the hospital WEEKS before they predicted, they are shocked. In two weeks, Kate went from this:

To this:

Only God could pull that off! Even the timing of her going home today is so God! Jeff has been in Boston all week and is coming home tonight. Coincidence that today is the day Kate is ready to come home? NOT!

Thank you all so very much for praying for her, for our family at home and for me at the hospital. Thank you for walking this journey with us.

And now we head home, which I suspect will be a challenge the next few days as everyone adjusts. Jeff's mom and sister will be flying home to their families tomorrow and I'm sure they will be glad to sleep in their own beds (and give their ears a rest from the noise at our house). We are soooo thankful that they were willing to come and hold down the fort!

I'll post again after we get Kate home. I can't wait to see Jake and Zoey, whom I haven't seen since Easter. :)

So far, so good! :)

Kate has had her echo and her EKG and everything looks good so far. I think we are waiting for an x-ray and then some training (for me) for what to do after we are home.

She was totally compliant for her echo and EKG--bless her little heart. Everyone was all concerned about her flipping out, but I told them it was just the morphine yesterday that caused the meltdown.

When we took her downstairs for the tests, she was very nervous and her little eyes kept darting back and forth--but she did what she needed to do. Her relief was palpable when we returned to 'her' room. She is standing by the bed drawing now. I think she is so happy to be out of bed with no tubes to navigate!

Thank you all soooo much for praying so diligently for her. It is a miracle that we are going home so soon! She has astonished the doctors and nurses and I keep telling them that it was because so many people were praying for her.

For those who are new to the blog and wondering...yes, I will keep writing. I write the blog to document my kids' childhoods and to try to stay sane. :) Having the blog makes me feel like I still have SOME adult conversation. hehe

Wednesday, April 29, 2009

Katie-Bug's Last Night in the Hospital

Feeding her babies

Thank you all so much for the great suggestions for different thrush treatments and ways to improve the calorie count of tomato soup! I promise to try them out when we get home.

The nurse spent some time with me tonight showing me how to change her dressings and educating me on all her medicines. She will still be on the six meds she is currently taking. Good thing I have always wanted to be a nurse! She also explained how careful we need to be with her for awhile. I think it all sounds manageable.

"Goodnight, Mama."'s our last night at the hospital. This might sound weird but there is a little part of me that is sad that this special time with Kate is over. Yes, it was stressful, painful, tiring, but there were some very precious moments as well. The most vivid in my mind was the day she was finally 'with it' enough to know she was sick and that I was taking care of her. The love in her eyes and the way she reached for me was a gift that I will never forget. I will also treasure the nights she fell asleep holding my hand, like she is doing right this minute. Yes, it means typing with one hand, but I love the feel of her little hand in mine.

My heart is full of gratitude that God has allowed me to be her Mama.

"Goodnight, my precious girl."


New Tomato Soup Diet Plan

Do you know you can lose weight eating nothing but tomato soup? Maybe it could be the next big health and diet craze.

Not likely.

Kate is still only able to get liquids down. The white patch of thrush on her tongue is tenaciously clinging and not going away. Frustrating. She is soooo sweet about letting me put that yucky Nystatin on her tongue, but it doesn't seem to be doing mmuch good. I will ask them again today if there is anything else that can be done.

All I can say is "Thank goodness for tomato soup!"

Crazy Morning

Yesterday was her last day with this nasty ol' tube.

Whew...tiring morning. They came in about 9:30 to sedate Kate for her chest tube removal. She had a wild reaction to the morphine and started screaming, kicking and thrashing all over the place. Ugh. To 'calm' her down, they gave her another medicine that I can't spell--chloryll-something-or-other. It increased her mania. Great.

We had to hold her down to get the chest tube and central line out--she was shrieking and yelling, "No! No! STOP!" I felt so bad for her, and was thankful that they had also given her Versed to cause amnesia.

After she was bandaged up, I tried rocking to her, singing to her, walking with her, lying in bed with her. NOTHING worked. She was hysterical with glassy eyes and it became obvious that we were going to have to let the medication run its course.

They wanted to get her echocardiogram done and took us downstairs. I knew she wasn't going to calm down, but we went through the motions of trying. My gut told me that she needed to wait until tomorrow to have all the exit testing done.

Thankfully, after another 20 minutes of hysteria, they came to the same conclusion. She stayed bonkers for a full hour and my arms were shaking after wrestling the little alligator for that long! Even after she calmed down, she has continued to be very grumpy and not herself.

Thank goodness for the Elmo DVD that our roommates gave us when they left!! It has kept her entertained (although I am definitely on Elmo-overload!).

Tomorrow she will get a chest x-ray, echo, and EKG to make sure things are okay and then she should get discharged. I think she and I will go hang out in our hotel room until Jeff gets in from Boston and he can pick us up around 7:30PM or so.

Finally asleep

Thanks for PFK!!

Tuesday, April 28, 2009

Fabulous News! :)

The nurse practioner just stopped by to tell me....drum roll please...CHEST TUBE COMING OUT tomorrow morning!!! WOOHOO!!! :)

If all goes well, we should be able to come home on Thursday!

It's a good thing because I am starting to get goofy. Last night, the cycling of my sound machine seemed to be saying, "Elmo's got ma-il...Elmo's got mail." Yeah...I've been listening to waaaay too many Elmo DVD's.

I also think I am snorer-dude magnet material. A confession...I cannot STAND the sound of snoring. If you wanted to torture me into giving up a national secret, it would be to put me in a room with the sound of snoring 24 hours a day. I don't know why it bugs me so much but it just drives me nuts. Our new roommate came today and his dad has been lying on the bench snoring for HOURS.

Just. shoot. me. now!

Kate is napping but the minute she wakes up, we are going for a walk! Ack! Every nerve in my body is vibrating.


Tuesday Morning Update

We have had a steady stream of medical staff in here today, so I haven't had a chance to update.

Kate had a good night and seems more like herself this morning. I think it's because she was able to eat the tomato soup last night, which made her thirsty, and she drank a lot before going to bed. HOORAY!!

She was awake past midnight. ugh.

They came to talk to me about the meds she will have to take for the rest of her life. Honestly, I think I will need to grieve a little for her about some of the things they said.
-No pregnancy
-Weekly blood draws for lab testing because of the Coumadin (gradually they should be able to get that down to monthly or every 5-6 weeks) They have ordered a finger poke machine so that I can eventually do her labs at home but that will take three months to arrive.
-Easy bruising, need to be extra careful with her re: falls, bumps, etc. No rough play
-No gym class when she is older, due to the possibility of hard bumps or falls

The hardest part to hear was the 'no pregnancy' and the Coumadin for life, that will require blood draws. (Coumadin is a blood thinner that she has to take to help prevent blood clots in her heart conduit.)

She is such a nurturer, that I know she will mourn the lack of ability to have children. Since she has such severe heart disease, it would seem doubtful that she would be able to adopt, either. She would never pass the medical requirements.

I know that God has great plans for her and that she will have a wonderful, fulfilling life no matter what her medical condition is. I just need to take some time to grieve for her losses. She is so utterly precious. I am so blessed to be her Mama.

Monday, April 27, 2009

Baby Mason update - please pray!!

Kate and I went down to PICU to see baby Mason tonight. I hadn't been able to talk to his family for several days. He has had a rough few days. His heart is okay but he has had some lung issues that required another surgery on Friday. His dad said that he updated their website, so please go there and read the latest. I don't want to get any details incorrect, so I won't try to repeat what he told me...just know that baby Mason really needs prayer. He is still on a ventilator and they want to get him off asap. His parents are really tired and discouraged.

7:00PM Update - Monday

"This is what I looked like at 11:30PM last night when my mom wanted to go to sleep!"

Kate's wound vac is O U T!! Yay! It was a very unpleasant experience for her...poor little tyke. The tape they used to keep it on her chest was as big as my hand. You know what it would feel like to have a band-aid pulled off your chest? Well...times that by 10! After they got the tape off, they had to take the sponge out of the wound. It was stuck to some of the skin. Owwww..... She will end up having a much wider scar there than the rest of her incision site. Thankfully, it's at the bottom of her incision, so it won't show.

They then had to change the dressing around her central line, which is in her neck--near her hair. Another huge piece of tape--this time about half the size of my palm, but of course, stuck to some of her hair.


More good news for today is that we happened onto something that she is able to E.A.T!!! Yeah!! Of all things, she likes tomato soup and ate a whole bowl!! It's a small bowl, but it's the most she has eaten in one sitting since her surgery. She slurped it up with lots of cute sound effects, including a big 'aaahhhh,' after each spoonful. :) She is trying soooo hard to swallow the solid foods that she puts in her mouth. She occasionally gets something down and then opens her mouth and points to it so that I can cheer for her. She knows we all want her to eat and she is trying to please us. My heart hurts for her. She has had some Coke today, but didn't guzzle it like I had hoped.

They told me that for the past three days, she is averaging 30% of her caloric needs and 90% of her protein. I doubt today will be any better, even though she ate the soup because she hardly drank any of her high calorie milkshakes.

Her creatine levels started rising yesterday, which means her kidney's are a bit stressed. They are not at an alarming rate or anything. If the creatine levels go up again tomorrow, they will counter it with some medicine.

I have asked for a different medicine for the thrush, but haven't gotten an answer. She still has it--it's visible on her tongue, and I'm sure it's in her throat, since she still can't swallow. She obviously wants food because she puts it in her mouth, but then can't get it down and ends up spitting it out. She keeps trying though, bless her little heart.

My brother's wife came to visit today and her father is a doctor. She said that when he heard about how Kate was almost done with surgery but started to bleed (and they had to put her back on the heart/lung machine and open her heart up again), he said, "And she's still alive?? That's amazing because that is how most patients die during a surgery. The procedure itself goes okay but then some bleeding starts and that's when we lose them." I am soooo thankful that God preserved her life and allowed us to keep her with us.

"Graham and Tatum, thank you for the pretty pictures!"



Someone asked about Zoey and what type of surgery she is going to need. She has a condition where her fibula is much smaller than normal and she has a little foot that turns totally sideways when she walks. Without her brace, she walks on the inside of her ankle and limps very badly because her leg is 2.5 inches shorter than the other. You can read the post about taking her to the orthopedic surgeon here.

11:45AM - Update - Mon, April 27

I have been waiting to post with the results of Kate's x-ray this morning, but so far, I haven't heard anything.

The Occupational Therapist came this morning to work with Kate to see why she isn't swallowing any food. Her best guess is that the thrush is still making it too painful, combined with the episode where she gagged. It probably really scared her and she is afraid it will happen again.

I am going to try to mash up some of her favorite foods and see if that will help. The dietitian is also going to send up some high calorie/nutrient rich drinks so that she will have a variety. There was no talk of putting the feeding tube back in.

Her wound vac is still in, but hopefully someone will come and remove it today. It has to be checked every three days, so I know they will get to it.

She is losing weight, which makes me glad I worked hard to fatten her up before the surgery. Her face is looking thinner and she seems pale, but hopefully the thrush will start to clear up soon, enabling her to eat. Every day that she doesn't eat puts her a day further away from having her chest tube out.

Please pray for no infection. Her chest tube is always a risk, and she still has her central line (IV) in. The IV is the biggest risk for infection as well as a blood clot because it feeds directly into her new heart conduit. They have her on aspirin and coumadin, which will continue after we get home. Of course, the longer we stay here, the greater the risk for sickness and not-nice bacterial infections that are always traveling around hospitals.

Jeff left for Boston today. He said he thinks his mom is feeling better. Please pray for her and for Jeff's sister as they handle the household this week. There is a lot to remember and the noise level at our house can be hard to adjust to, even when the sounds are happy ones. ;0

Kate's spirits are good, so we are just hanging out and playing with her toys. I'm planning to take her outside in a little while when my brother's wife comes to visit us. I'm sure Kate will love to get outside. NOT.

I have been having some very sweet moments with Kate that I will treasure forever. She looks at me sometimes with eyes full of love, reaches for me and puts her arms around my neck. She also has been wanting to hold my hand and it's just soooo precious. I am thankful that she is so good-natured and sweet and we are just having some wonderful bonding time. Since there is basically nothing to do all day, I have her held captive. haha She is loving being the queen bee. I'm thinking we could have a rough re-entry to reality when we go home!

Sunday, April 26, 2009

Mommy update - Sun

Since you're asking... :)))

Snorer dude must have checked out because I had one night of peace and quiet last week. A new snorer then took his place. I know this because it was a gentler snore and there was a change in cadence. :)

That snorer either checked out, or I have slept through the snoring the past two nights. :) I was told there was a thunderstorm last night--I didn't hear it.

About the question on the pain for thrush...I can ask if there is a throat spray?? She is on pretty strong pain meds already, so I don't think ibuprofen would help. They are having the speech therapist come tomorrow and evaluate her. I guess the speech team can tell if there is something going on in her throat that is causing her to gag and/or not want to swallow.

Great suggestion on the Coke. I will try that tomorrow because she loves Coke. She must have had it in China because she KNOWS what a Coke can is. She is not big on anything cold (popsicle). She refused ice cream today. She really never had anything cold in China and hasn't gotten used to it yet.

Your prayers for me not to be tired have been very effective. THANK YOU!! Coffee helps, too. :) Although, I have to say it is almost impossible to get a decent cup of coffee up here. I always time it wrong and get the pot that has been sitting and sitting and sitting. Gross.

Kate, on the other hand, has not been sleeping all that much. The little stinker was awake past midnight last night. It's currently 11:20PM and she is staring at me bright-eyed. I turned HGTV on, thinking she would get bored and fall asleep, but nooooo.... She also took her diaper off around 10:30 but I didn't realize it because she was under her blanket. When I went to change her diaper, I saw it and then realized that the bed was wet. She grinned at me and thought she was so very clever. It was so sweet to see her smile that I just grinned back. She has been holding my hand all night. Wah....

Talked to cardiac nurse - 10:15PM Sun.

Just a short update...I was able to talk to the cardiac nurse and asked how long Kate's chest tube fluid output needed to be below 45cc's for her to get it out. She told me that Kate's fluid output has probably been lower because she is not eating. With a fontan surgery, they won't consider pulling a chest tube until a child is eating well. It gives a much better indicator of chest tube fluid output.

Disappointing news, but I know that God is working all for good in Kate's body. He always has good reasons for what we consider to be delay's and unexpected bends in the road. I know He is trustworthy and always is FOR us.

The little guy next to us is going home tomorrow, so could you please pray that we get a good roommate? His family is so sweet and we have enjoyed them.


9:30PM Update- Sun.

Kate continues to be brave. She has to take so many yucky tasting medicines and I feel so bad for her. She opens her mouth willingly for each one, though. It's amazing.

She ate less today than yesterday. :( I think she is totally burned out on the milkshakes that she has been drinking, and it must hurt too much to swallow anything else. We did find out that Cheetos melt in her mouth and she can get them down. Not exactly brimming with nutrition, but anything we can get down her is a triumph. She really does try. She wants the food but she chews and then holds it in her mouth. She eventually ends up spitting it out and trying another bite, which also gets spit out. Poor baby! I am so hoping the NG tube doesn't go back in.

Chest tube fluid output so far (with three more hours to go until we get a final number):
34cc's !!
She has to stay under 45cc's to have a chance of getting her chest tube out.

I am pretty sure her wound vac will come out tomorrow, since they didn't do it today. It will so great to have one less tube to deal with when we try to get her out of bed! The tubes get so tangled and then they pull at the wound entrance site.

She wasn't too energetic today--probably due to not eating much for the past few days. I took her outside with the help of a student nurse. Kate didn't want to go out and spent most of the time eyeing the student suspiciously. She doesn't trust anyone in a white lab coat or scrubs! It was so warm outside that I knew it would be good for her to get out. She only took a handful of steps, though, and is so wobbly standing up that I have to steady her or have her hold on to something. She can't stand alone. (For comparison sake, there are kids walking and running all over in the playroom with their chest tubes still in. She is definitely struggling more than some of them.)

Leaning on a bench while giving Mom a wan smile.

"My Mom made me come out here, but I've decided not to like it and I don't feel like smiling."

"My big sisters came to play with me tonight and they are so much fun!"

She fell asleep around 8:00PM tonight holding my hand. wah. So sweet. I had hoped she was out for the night, but alas, the nurse came in and woke her up. Drat.

There is nothing sweeter than holding a child's hand--even one with Cheeto dust on it.


1:15PM Update - Sun.

Opening her mouth for the yucky medicine that helps her thrush.

Kate is doing about the same. Oxygen level still okay! We are waiting to see how her fluid output goes today. She is napping now and when she wakes up, I'm going to try to take her outside. There is a student nurse here today and she is able to help me. It's kind of a two-person job. :)

They are considering taking her wound vac out today--but haven't decided yet.

One concern is that she is barely eating. She tried to eat some egg this morning but gagged when she tried to swallow. She has not eaten any solid food since surgery -- other than an occasional goldfish cracker and a few bites of egg yesterday. The doctor is not sure if the gagging is from the thrush causing pain in her throat, or if there was some damage done from the vent tube. She has not had the vent tube in for a long time, though. At any rate...she is not eating enough. She eats less and less every day. They are having me write down everything she eats to try to count calories. If her non-eating trend continues, there will be no choice but to put her NG tube back in.

Chest tube fluid output yesterday:

Other than that, we are doing well. Jeff leaves for Boston tomorrow and will be gone for four days. Please pray that Jeff's mom will get over her cold, and that Jeff's sister doesn't get sick.

Now for some Mama-bear venting. Taylor asked me last night if Zoey's surgery was going to be this intense. I told him no...that when Zoey has surgery, it should only be a few days in the hospital. He asked if Zoey's foot was going to be amputated, and I told him that we aren't sure yet, but it is looking very likely. He then said, "It's going to make it harder to stick up for her." I asked what he meant and he said, "Well, some of the kids in the neighborhood think that the little kids are freaks (because of their special needs). I try to stick up for them."

I felt like I had gotten punched in the stomach.

I am so sad that my kids are considered freaks by some people...and sad that my older kids are teased because they have 'freaky' siblings. *Sigh*

I read a news story recently about a TV News anchor who had some type of hand deformity and parents were calling the station wanting her removed from the air. They said her 'deformity' was scaring their kids!! That just floors me. When did it become so important to spare kids from the realities of life? What if one of those children gets in an accident and becomes 'deformed?' Will they then think their lives have lost all value?

I just don't get it and I never will.


Saturday, April 25, 2009

9:00PM Update- Sat.

The good news first: Kate's oxygen levels have stayed in the 90's today, so she hasn't had to go back on oxygen!! Yay!

Not so good news: She won't be getting her chest tube out tomorrow. She has gone over the limit for fluid output today so it won't be a possibility tomorrow. I think I will just not attempt to predict any kind of homecoming because it will just be disappointing if it doesn't happen. We'll just take each day as it comes and trust God to bring her home when she's ready.

She practiced standing by her bed for about half an hour and then was so exhausted that she slept for four hours!

Jeff and some of the kids came up to see her tonight and got her up walking in the hall. She walked quite a ways. It's kind of hard for her to walk without tripping over her tubes. They also keep getting twisted around each other and it's rather nerve-wracking trying to make sure her chest tube doesn't get accidentally pulled out. It's had a few tugs on it that have been rather scary.

Taking a break with big sister

Looks like a party...where's the cake?

Please pray for Jeff's mom. She is sick and that is not fun--especially when you're away from home.


When you guys pray.....

....God moves!

Kate's nurse took the oxygen out of her nose just to see how Kate would do. So far today, she has stayed in the 90's!!!! She cannot go below 85 and yesterday she could not seem to get above that without the help of oxygen.

After crying and not wanting to walk yesterday, she motioned that she wanted to slide down on the floor and stand up today! I got her down and let her stand by the bed. She took a few steps for me and then she stood for almost half an hour! She was exhausted after that and has been sleeping ever since.

The oxygen and the walking are huge improvements! Thank you for praying for her!

Her chest tube output today has been only 20cc's (but they will be counting until midnight, so she has a ways to go).

I found out today that after her tubes come out, she will still have to stay a few more days so they can monitor her. So, coming Sunday is not happening. If she can get the tube out tomorrow, then she *might* get to go home on Wed. I'm not complaining because it's a lot better news than seven-ten weeks! :) I think it's safe to say that after all the chest tubes are out, we will probably be able to come home 2-3 days later.

"I still have some tube and wires, but a lot less than last week. I still have my wound vac, my chest tube, central IV line, and oxygen."

9:00AM Update - Sat.

From Katie-bug:

Thank you for praying for me. I am trying to be brave and take all my medicine (four syringes every four hours). I always open my mouth and drink it down without crying and then my Mommy gives me some vanilla shake to wash the taste out of my mouth.

Speaking of my mouth, I have thrush--which is a yeast infection from the antibiotics I have to take. My nurse said that her husband got thrush and that it hurt worse than both of his transplant surgeries. I wish I could eat, but it just hurts too much. I am drinking my shakes, but they are kinda sugary which makes the thrush get worse. Every four hours the nurse comes and puts a really yucky medicine all around in my mouth and then I can't drink anything for 30 minutes. I used to cry when they did it, but now I'm getting used to it. Can you please pray that the thrush will go away so I can eat?

My chest tube can't come out today because I had 59cc's of fluid output yesterday.

My lips are really dry and keep splitting open. My Mommy is trying to keep chapstick on them but it doesn't work that well. We are not allowed to use vaseline because I am still on oxygen and there is an issue with using a petroleum based product next to oxygen (on my face).

I still have the yucky oxygen thingy in my nose but my Mommy is going to take me outside today when Daddy comes. The nurse says I need to walk, but when I try to get up, I feel like Bambi. My legs shake and shake. I will try to be brave today and do what they say, though.

I am so glad you are praying for me and writing to my mom because I think she feels happy when she gets emails.

Gotta go...I think they are going to make me walk now.

Friday, April 24, 2009

Late night musings... :)

Well, it's not actually THAT late--only 10:15, but I couldn't really title my post, 'Not Really Late Night Musings."

Happily, I have a new cord for my computer, so I can type freely! Yay!

To answer some questions and comments about Kate:
--She is three years old. She turned three the day we came home from China, three months ago. :)
--She is tiny for her age and is the size of a two year old
--I agree with some of her visitors that she looks much smaller in person than in the pictures on the blog
--If not for the hand of God, Love Without Boundaries and Hope Healing Home, she would not have survived long enough to be adopted by our family.

An unasked for bit of trivia is that Kate absolutely detests any kind of 'help' going to the in poo. When she had to get a suppository the other day, it took two nurses to accomplish the task. She saw that small, clear torpedo headed for her bottom and she clamped her butt cheeks together in a fit of protest. They had to pry her cheeks apart and I'm proud to say that she put up a good fight before being over-powered by them. They had a few hundred pounds on her, after all.

Yesterday, (was it only yesterday??) when her chest tube came out accidentally, I knew that she was in potential danger. I also have come to realize more and more that doctors only make guesses based on their medical knowledge. So much of how the human body reacts to medicines and surgery differs greatly per person. The doctor on call, 'guessed' that Kate would 'probably' be okay without that chest tube in all day yesterday. I knew that her guess was probably correct--but if it wasn't, Kate could have a major fluid dump with no way to get it out of her chest. It could potentially cause enough fluid to build up in her chest that her heart would suddenly stop. I know someone who had that happen (which, of course, heightens the fear). I just kept praying that God would stop the fluid output.

I opened my Bible and my eyes fell on verses in Isaiah 44.
"I am the Lord...who says to the watery deep, 'Be dry, and I will dry up your streams."

Be dry. I knew that God was telling me that it would be okay. He had prevented air from getting into the tube and He would dry up the 'streams' of fluid.

And He did.

9:15 PM Update - Fri.

Cool looking plant on the U of M grounds

What a gorgeous day today! When Jeff came tonight with SaraGrace and Jordan, we were able to take Katie-bug outside! This is what she thought of it...

She warms up slowly to new activities. :) It's a bit of a hassle getting her into a wheelchair because we have to get a portable oxygen tank, carry her drain tube collector, navigate all her tubes, and take her IV cart with us. So, despite the fact that she was NOT enjoying her little excursion outdoors, I made her stay out there. After awhile she warmed to the idea and started to play with Jordan and SaraGrace.

SaraGrace puts Kate's socks back on

Making silly monster faces

"Let me help you make a monster face, Jordan."

Kisses for big sister, SaraGrace

Our hopes of going home on Sunday may be a bit optimistic. Her wound vac was not quite ready to come off, so that might be 2-3 more days. Her oxygen levels continue to be too low and have not improved at all today. They will re-evaluate her chest tube, but it doesn't look likely that it will come out tomorrow. Her spirits are good, so I am thankful for that. :)

X-ray results

Her x-ray showed that she had some fluid in her chest, but not enough to warrant going back in with a new chest tube. YAY!!!!!!!

Standing and trying to take a few steps with her friend, Miss Karla.

4:45 PM Update - Fri.

Kate has plateaued today but she had a good day! Her chest tube needs to stay in because she had a 34cc sudden fluid dump around noon. They will check again tomorrow and she maybe be able to get it out.

She has had to leave her oxygen in her nose all day today, but thankfully has been pretty patient with it. She is such a brave little trooper!!

They are coming soon to check her wound vac--not sure if she will be able to get that out or not.

She is TALKING today!!! And belly laughing!!! is sooooo good to hear her little voice again. All the nurses were so excited to see how well she is doing.

So we are doing great and just hanging out...just playing with toys. Kate has had some visitors to play with today. She is dropping things on the floor purposely so we have to pick them up--and then belly laughs and says, "!" she's really sorry. NOT.

For some reason, the rest of my pictures won't load, so I will try again later.

11:30AM Update - Friday

No word yet on the chest x-ray, although it was done around 9AM. We had to sit and wait for quite awhile afterward for someone to come and wheel us back upstairs. (I sat in a wheelchair and held Kate.) So, we got some great cuddle time in and we both benefited from that. :)

She had to go back on oxygen during the night, so that was a little setback. She is tolerating the tubes fairly well, although has been pushing them aside to pick her nose practically all morning. I think she is just so dry in there and wants to 'fix' it. She hasn't gotten much out of there, but I'm letting her be gross because I can only imagine how uncomfortable she must feel.

She had some visitors this morning who brought her a present and she rewarded them with her first smile of the day. she is sitting in bed playing with toys and being so well behaved. She got a bath and got her hair washed, which really ticked her off, but she looks and smells much better now.

She has been eating enough to keep the NG tube out, THANK YOU, GOD!!! I'll update you when I hear about the x-ray.

Thursday, April 23, 2009

Please pray for a friend in need

I just read the news on my friend, Linny's blog, that her 19 year old daughter has just been diagnosed with a brain tumor. Their house burned down a few months ago and they are still grieving and trying to recover from that--and now they have been dealt another blow. They are hanging on to God, but they need our prayers. They are a wonderful family and my heart just aches for them.

9:00PM update - Thur./Thankful Thursday

My sister-in-law signs all of her messages to us, "PFK", which stands for Praying For Kate. Her daughter made this cute sign and brought it to us tonight!

Kate had a very good day today! What a turn-around in the past 24 hours! She has been smiling, playing, and even laughing out loud. I know that last night, there were many churches praying for her during their Wed. prayer services. I do not think it is coincidence that today she has taken a dramatic turn for the better.

She has stayed off oxygen all day except for this afternoon when she dipped into the 70's. They made her put the oxygen back in her nose and she was ticked! She threw a hissy fit and got her oxygen saturation back up all by itself. haha She had to keep the oxygen in her nose for a little while and then they let me take it out. The more she moves around, the better her saturation level is.

"Look, Mom, no tubes!"

"Peek-a-boo, I'm not in ICU!"

She isn't drinking/eating as much as they had hoped. Her diaper was dry almost all afternoon and evening and the nurse told me that if she doesn't start urinating, she will have to get the NG tube back in her nose. Noooooo..... I have been trying to coax her to drink, but I'm not going to force it down her throat. If she's not ready, she's not ready. (I just felt her diaper and it feels WET!!! Woohoo!!)

They will do an x-ray tomorrow AM to see how her chest looks. If it's clear of fluid, they will not put a new chest tube in. I really think they will not need to. Her other tube has put out 40cc's today with only 4 more hours of collection to go! So....if she doesn't go over 45cc's (it doesn't look like she will), she should be able to get the tube out tomorrow!!! Yes, tomorrow...not seven weeks!!

She got a very special package today from a little friend, Hannalee, who also had heart surgery here! She is quite a famous little girl and everyone remembers her. She was here for 3 1/2 months after her surgery because of complications. Thank you, Hannalee and family, for all the fun toys. Kate has had a wonderful time playing with them today.

One of our PICU nurses came over this afternoon to see her and couldn't believe the change. I said something about her putting out 100cc's an hour last week and she said, "You mean 100cc's PER chest tube--as in 300cc's per hour. I couldn't keep up. She was leaking it out faster than I could put it in." I then remembered that the doctor had told the nurses to just 'chase her the best you can.' They couldn't get it in as fast as she was getting rid of it.

That was when they told us we would be here for 7-10 weeks. And then you prayed. And prayed. And God performed a miracle. Her fluid output dropped dramatically in one day. It has gone down steadily ever since.

I'm not sure if I explained exactly what happened this morning. She had a chest x-ray. Her nurse then came in and told me that she normally never looks at x-ray's but she 'happened' to look at Kate's and noticed that her chest tube had started to come out. The chest tube has air holes in it and they were exposed and sucking air into her chest cavity. If that had gone unnoticed, she would have developed another pocket of air in her chest and they would have had no choice but to put in a new chest tube. I believe that God prompted the nurse to look at the x-ray so they could get it out and bandage the hole before air could collect.

She has thrush (yeast infection in her mouth). WAH. I noticed it when she was in PICU and asked the nurse if it was thrush. She said there was no way it could develop that fast. Hmm...well, it did and her tongue looks awful. I think that might be one reason that she is not eating and drinking as much as she should. They are putting nystatin on her tongue but they said it would take a few days to improve.

Well..enough of the medical report. Here are some pictures of her today that show her amazing improvement. God moves when we pray!! Thank you for praying for her because it has made a tremendous difference.

"It's MY turn to play doctor."

"I'm making some phone calls to see if someone can spring me out of this joint."

"Look out, world!"

"Like mother, like daughter! Paparazzi girl."

"Daddy's back from Chicago but Mommy REALLY needs to do something about my hair. It's embarrassing."

11:15AM Update - Thur.

Sorry...that last post was interrupted because they wanted to get Kate up on her feet. She wasn't able to walk at all but we will try again later. Right now she is sitting next to me in the 'camper' on the couch. :)

So...chest tube. It will stay out unless she drains too much fluid into her chest. Please pray that she doesn't need a new tube put in. She would go back to PICU for that. Let's just pray that God continues to miraculously dry up her fluid output! :)

She also got her oxygen tube taken out of her nose!! And then...the big thrill of the day...they pulled her NG tube to see if she would eat today. It was so big and causing her to gag almost every time she tried to swallow. Could you please pray that she will eat/drink today?! I am coaxing an Instant Breakfast down her but it's going very s l o w l y.

She is smiling today, though. It is soooooooooooooooo good to see that sweet smile. Every time a nurse comes in, she shuts down and refuses to look at them. Her day nurse was determined to get a smile, so she brought some stickers and that did the trick. She was rewarded with a little smile and Kate showed her the stickers that Mama had brought from home.

Total Chest Fluid Output for 24 hour period:
Left side 65cc's
Right side 50cc's

She only has to get to 45cc's to get them out and go home!! Unfortunately, it was her left tube that came out this morning. Praying to be home by Sunday!! :) If so, that would be a total miracle straight from our Father in Heaven!! :)

"I got to hang out for awhile with my Mom in the camper. I'm a bit of a princess, though, and I have decided that camping is highly over-rated."

10:30AM update - Thur

Lot's of news~ but I'm typing with one hand and holding my cord wires with the other to get juice to my battery. Bear with me..Kate's new chest tube came out this AM. Her nurse said that she normally never looks at x-ray's but today she did. Yay,God!!!! She noticed that Kate's early AM x-ray showed that her chest tube had fallen out. They will try to let her go without it and see how she does. PLEASE PRAY!!!!

Wednesday, April 22, 2009

7:45PM - Update

Kate's little hand

Houston...we have poo-poo! I repeat...we have poo-poo! Hooray! I know it's gross to be so happy about poo, but poor Kate was in so much pain. She seems more comfortable now. Thank you, Jesus.

They switched most of her meds to oral today, rather than IV. Her central line is deteriorating and they want to be able to get it out. It would have come out today if there was any way to get an IV in a different spot. Due to past inability to get an IV started, they couldn't take the risk of having no IV access. So we have been being VERY careful with that IV!

Once the oral meds started to hit her stomach, she started throwing up. Poor baby!! Oh my goodness, she was the most pitiful sight. After three rounds of barfing, we all figured out that she was really sick to her stomach. They gave her some medicine for that and wow...what an improvement. She perked up enough to want to hold her balloon and a book. The book cart had come by and I got her one, thinking maybe later in the week she would want to read it. I got another little smile out of her when she saw it and she spent a few hours clutching it. Too cute!

Counting down Kate's Chest tube fluid output (so far today):
Right side 65cc's
Left side 39 cc's

A lot better than 90-100 cc's PER HOUR!! :) I just asked the nurse if the fontan kids normally go down each day on fluid output or if they fluctuate and she said they normally go down. So...let the countdown begin!

A vase of sunshine that was delivered today from a sweet friend!

She has eaten some Goldfish crackers today, so I'm hopeful that is the start of getting her to eat. Once she is eating, hopefully she will regain some strength. Big brother, Ryan, came up to sit with her tonight while I went downstairs to eat. We took her for a ride in a special stroller and she didn't like it at all. It was interesting getting all her tubes into the stroller with her.

I had to interrupt the writing of this post to hold Kate!! I looked up at her and she reached for me. I leaned in close and she put her arm around my neck. Be still my heart! Then she pushed my head back a bit and started stroking my hair, the same way I have been stroking hers the past few days. It was a moment. :) She continued to look into my eyes with all of the love in her heart just pouring out of her big brown eyes. I am so blessed to be her Mama.

Mama's heart feels better tonight to know that my Kate is showing some signs of being on the mend.

"I love you, Mommy."

LWB Auction for Heart Surgeries

As you may or may not know, Love Without Boundaries has saved the lives of two of our daughters, Kate and SaraGrace, by providing heart surgeries for them while they were in China. It has been my privilege to work for LWB for several years.

April 23-28 they will be hosting an eBay auction to raise money for heart surgery for orphaned children in China. Check it out!! You may find something you can't live without--and help a child who can't live without heart surgery!

"We have some amazing treasures this year, all donated by LWB's fabulous supporters! This year once again we have many beautiful original paintings and prints, a beautiful array of quilts, calligraphy, scrapbooking pages, amazing photography, embroidery, gift baskets, jewelry, clothing, heritage items and so much more!"

1:30PM Update - Wed.

Holding my baby girl!

Today the sun is shining and I have adjusted my attitude to the new, yucky room. Kate is adjusting, too, although has been quite scared at the new room and all the new people. She still hasn't pooped and is suffering with cramping. I have repeatedly asked for an enema and was told that they rarely do that here. *sigh* It's so hard to watch her suffer for three days while they give her Miralax--with nothing happening. They gave her a suppository yesterday, and another one a few minutes ago. I hope it produces some results.

I was so excited to be able to get her to eat a few bites of lunch but about an hour later, it all came back up. Holding her while she vomited was both a privilege and torture. She was sooo pitiful. My heart aches for her.

She vacillates between wanting my touch and looking at me with eyes full of reproach. I think we are about 50/50 with that, compared to yesterday when I got waaaay more reproach. So that is progress! :) I was able to hold her today, which was wonderful. She didn't seem too uncomfortable, thankfully.

When I was feeding her lunch, Jeff was here, and I started being silly, trying to get her to eat. And then it happened... she smiled!! It was so incredibly precious. Jeff grabbed the camera and got a few shots, which I knew you would love to see. Most of the time, her eyes are dull and cloudy with pain, but for a few brief moments, they were shining. And God allowed it to happen when Jeff was there and had the presence of mind to grab the camera. I really felt like God knew how discouraged I was about her progress, and how hard is has been the past few days to see her eyes so glazed over. He gave me a glimpse of my sweet girl, which keeps me mindful that better days are ahead.

Her smile was like a burst of sunshine on a rainy day!

Her chest tube fluid is about the same. Unfortunately, she developed a large air pocket again, so they had to put her tube on suction mode. The doctor explained to me that this helps to get the fluid out, but it tends to irritate the lungs, which in turn causes more fluid to be created. So it's a vicious cycle. They will try to turn off the suction later today, so I am praying that it can stay off.

I have tried to pin them down about how long her stay will be, but have been told by everyone that fontan kids drain anywhere from 2 weeks to 3 months. Ya'll know what I'll be praying for!

Jeff had to go to Chicago today and will be coming home tomorrow night. Please pray for his mom and sister while they hold down the fort at home. Next week he has to go to Boston from Mon-Thur., so that will be a challenging week.

Since we have been moved to the regular floor, Kate no longer has a nurse hovering over her bed every minute. She is also awake a lot more. Jeff came up for awhile today on his way out of town, so that I could get some lunch. I don't want to leave her alone because she is so scared. I do leave at night, though, because there is no way I could get any sleep in this room. It kills me to leave her but I know I need to rest or I will get sick and be completely useless.

Tuesday, April 21, 2009

Trying to keep a stiff upper lip

Not feelin' the love about Mott's anymore. Haha (I still love the staff but the facility, not so much.) We got moved to the regular floor after all. I am really struggling with it, which I'm not proud of. The room is small and depressing. It's smaller than her PICU room and we share it with another family. Their little boy's bed is literally two feet from Kate's. Can you say, "Claustrophobia?"

They are sweet...but he is loud. And he just woke Kate up after I had gotten her settled down for the night. *sigh*

I will adjust, but tonight I am trying really hard not to just bawl my eyes out. Kate is sad and looks confused. She gets sooo upset when she is moved because it hurts her. Then she looks at me with the question in her eyes that says, "Why are you letting them do this to me?" I feel awful for her.

The little boy next to us had a normal fontan, was out of PICU in three days and is already up walking. Kate was in PICU for eight days and is sooo weak. She did sit in the chair today but cried and cried and then fell asleep sitting there with me holding her head up. Tonight her alarms keep doing off because she has had one Desat after another (which means her oxygen levels drop too far when she is sleeping). She is still on oxygen. She has not eaten anything yet, although was able to take some sips of apple juice. Please pray that she will regain her strength quickly and that her chest tubes will dry up. When the fluid stops and she can get them out, she can come home. I pray it is not weeks before that happens, but I think it will take a miracle for her to be able to go home soon.

I stood on their side of the room to take the picture of our side. (The curtain is where their side starts.)

There is a playroom, so that was encouraging. Until... I was in there with the big girls, who had come to visit and noticed a little boy with snot running into his mouth. He then wiped it with his hand and went around touching almost every toy in the room. ugh. I asked the nurse if there was a no-sick-kid policy for the playroom. She said yes, so I told her about the sick child. She went and told someone, but then no one came to clean the toys. They were soooo careful in PICU. If anyone got sick, they totally isolated the child away from everyone else. Now I feel like I have to try to keep Kate safe from others who are not worried about infecting other kids who have had a major surgery.

I'm bummed...can you tell? I considered not writing this post and just pretending that I was fine...but that is not truthful. So...I'm keepin' it real.

Kinda feel like I'm in a camper

Your prayers are making a difference

This afternoon, my sweet Kate, went from pulling her hand away from me at every opportunity, to looking me right in the eyes and letting me love on her. Thank you for praying!! There is no one here to take a picture, so please excuse the poor photography but I don't have very long arms! It's also hard to hold the camera above your head and push the button. haha She had been sleeping when I tried to take this photo and I thought I might get away with it, but she woke up and looked at me like I was a loon (which I actually am).

Her dark eyes are clouded with pain and she looks at me as if to say, "Why can't you get me out of here? What happened to me?" She will probably be spending another night in PICU because they don't have any beds available on the regular floor. Right now we have a totally private room with a window and we are in no hurry to get to the regular floor to share a dark, cramped room with another patient. So...we are actually quite happy to stay here! :) They are going to get her up in a chair in a few minutes, so I will try to get some pictures of that. I'm hoping she tolerates is okay.