Monday, April 26, 2010

TWO POSTS IN ONE TODAY

I finally had some and energy to do some digital scrapbooking.  I copied Sketch # 58 from fellow blogger Liz Childester.  Check her blog out here.  She comes up with the best sketches for scrapbooking. 

Nerf tag2010 Liz#58 flat

The digital kit was Lucky Ducky by Miss Mint.  It was the March kit over at Scrappers Guide.  If you are interested in digital scrapbooking this site is a gold mine.  Linda Satgast offers lots of Photoshop tutorials and tips. 

 

On another note…

Our car was broken into at Miranda’s soccer game on Saturday afternoon.  They busted the passenger window and grabbed my purse.  (I know, I know… I should have never left my purse in the car)  It has been a pain canceling everything.  Mostly it is so sad to see how afraid my kids were.  In time we can replace everything that was taken but it is such a violation.  I worry because they got my checkbook which has our address printed on them.  Now I am looking at the cars that drive by my house wondering… is that them?  are they back for more?  They really didn’t get much.  Well, ok they got 2 iPods that I forgot were in my purse and my pocket camera that hasn’t been working very well.  But other than that got our Kaiser cards, (they are more then welcome to use the cards, we have a crazy high deductable & out of pocked maximum), Gracie’s pacemaker card, some business cards, a bunch of punch cards that I always forget to use.  Our season passes to Six Flags Discovery Kingdom were in there but I called the park today and it seems they can void the cards and as long as we have a police report (which we do) they will issue us new cards.  The worst thing was the checkbook but the bank closed the account right away and gave us a new one.  It’s a hassle but at least they didn’t get anything. 

Boy, 2010 is just not our year…

PS~ I was going to participate in Ali Edwards “Week in the life” but I just never got my act together on it and planned to start it this week.  I got a few photos this morning but then didn’t want to lug the big SLR around and gave up.  I hope a pocket camera is near the top of the list for things to replace.

I will be back soon to post pics of Miranda’s soccer game and of the Scrapbook Layouts I did at Scraptacular Getaways.

Thursday, April 22, 2010

Please Pray For Our Friend Moriah

 

PLEASE PRAY FOR THE PRESSURES IN MORIAH'S HEART TO RETURN TO NORMAL BY THE TIME SHE HAS HER HEART CATHETERIZATION IN JUNE!! WE KNOW HOW FAR SHE HAS COME, AND WE KNOW THE POWER OF PRAYER. WE ASK FOR COMPLETE AND TOTAL HEALING OF HER HEART.

Justin, Victoria, and Moriah

I just wanted to ask all of my friends to please say a prayer for our friend Moriah.  I have been following Moriah’s story since she was born.  I got to meet her and her parents a year and a half (or so) ago when Moriah was brought to Stanford from Southern California. (they have since relocated here)  This is just she sweetest family you could ever meet.  They have been through so much.  You can check out their blog here for the whole story. 

Friday, April 16, 2010

PHOTO CATCH UP

Here are some photos from the last few weeks that I am just getting around to posting.

Enjoy…

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Here is Grace just before heading in to surgery.She feeling a little loopy right here.

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Here she is just after coming out of surgery.

She woke up sooner than they thought and tried to pull out the ventilator.  Not a good thing!

 IMG_0848 IMG_0853 IMG_0857 She was extubated in a few hours.  She slept the rest of the night.

Here is Nurse Helen saying goodbye at the end of her shift.  Helen also took care of Grace the day she was born and for the next three months…

IMG_0864 Nurse Gina

IMG_0866 Nurse Megan

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 IMG_0876 Nurse Julie

IMG_0877Dr. Tanel, the pacemaker specialist

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Nurse Nelsie

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    IMG_0894 IMG_0895 IMG_0896 IMG_0902 IMG_0904 Nurses Sabrina and Keegan. 

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We are out of here!

 

A few days after getting discharged from UCSF she had a follow up appointment with her cardiologist at Kaiser.  So far so good :)

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Nurse Ann at Dr. Coopers office.

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Dr. Cooper

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Nancy.  She does all of Gracie’s echo’s

Thursday, April 8, 2010

Look What I Found…

I was cleaning out my CD drawer and I found this video that the kids made on Gracie’s Make A Wish Trip at the Give Kids The World Resort. 

So Funny! 

The kids asked for something by Michael Jackson and this is what they got… Dave and I about peed our pants when we heard the song… then we saw the video!  Oh MY!  The outfits!  LOL I can’t even believe I am posting it.  but it’s just too funny not to share.

Friday, March 26, 2010

Days 5 & 6

Saturday (Day 5)

Today was a productive day.  Sometime in the wee hours of  the morning Grace got to have her Art line (IV in the arterial vein) taken out.  She also came off of the Nitrous Oxide and the High Flow oxygen.  Later in the morning she got her chest tube and another IV taken out.  Whoo Hoo!  Shortly after that she was moved over to the step down unit, also know as 7 North.  Once settled here she got to get out of bed more freely and walked around.  Blowing bubbles was also a big part of her recovery.  It helped refill her collapsed lung from surgery.  So every so often we got out the bubbles and Grace had to see how many she could blow. 

Grandpa Truhe came by with Miranda, Colette and Adam.  Grace was so excited to see them.  We all spent some time together in the room then Daddy took them to the All Star room (a video game and computer playroom for big kids).  Miranda spent her time on facebook while AJ and Coco played video games.  The kids stayed until about 4:30 or so then Dave took them home.   Grace and I were on our own for the night.  It was another long night.  Nothing too awful happened, it was just a long night.  Grace didn’t sleep, I didn’t sleep and  Grace  did not seem to click well with her night nurse; so that made everything a little worse. 

Sunday (Day 6)

Again, sometime in the wee hours of the morning the nurse told us that the doc’s wanted another set of labs.  Grace still had one IV left so I’d hoped they could get the blood from that; but of course her last IV was no longer any good and they took it out.  That meant another stick – which ended up being four sticks and they still didn’t get it.  UGHH!  7:00am rolled around and that’s shift change!  Hooray!  Grace got Nurse Keegan today (she also had her on Saturday).  I noticed the doctors in rounds but no one came to talk to us which made me worry.  When they have good news like “ your going home today” they usually tell you right away.  A few hours later I still hadn't heard anything.  Grace and I took a walk to the fish room and ran into one of the cardiologists who told us that she was going to do an ECHO on Grace and if all looked good we would be on our way home!  It was close to noon when she finally got the ECHO (things tend to happen slowly in the hospital).  Two hours later we got the okay to go home!  I think it was another hour or so before we were actually out the door. 

LOL  Would you believe it?  I actually forgot to take a photo of the front of the hospital AGAIN.  Three years now I have been meaning to get a shot of the front of the hospital with the sign for her scrapbook and every time we are there I forget.  I will have another chance next month when we take her for her pacemaker check.  Lets hope I remember this time.  If not, does anyone reading have one?  Can you email it to me?  LOL

Now that we are back at home Grace and I have been resting and we have been trying to keep her form overdoing it.  We had a follow up  visit with her cardiologist, Dr. Cooper, he is happy with her progress but her pressures are still high.  Plans to go to my dad’s cabin this summer will have to wait.  Maybe next year.  She will get checked again in a few months.  Boy wouldn’t it be great if we could just pick up the cabin and move it to the beach???  :)

Life at home has been a bit crazy.  We came home to learn that Dave's former employer dropped us from the health plan after promising to keep us on for a while.  His old boss said not to worry that the COBRA would pick it up, but Kaiser has been calling with a different story.  Then we get news that there is MORE soccer drama with Miranda’s soccer league.   Well, I’m not going to spend too much time worrying about this stressful stuff that I really can’t do much about.  The timing of it all stinks.   Blah, Blah, Blah… enough about that…

Hopefully I will have time to upload and post the rest of  our hospital photos later today.

Thank you all for all of your kind words, prayers and help while we were going through this stressful time.  We have a few more weeks of recovery but hope to be back to normal soon.

Blessings,

Jackie

Friday, March 19, 2010

Day’s 3 & 4

Sorry for not posting anything sooner.  Its hard to concentrate when you’re only getting a few hours of sleep.

Grace went in for surgery yesterday morning (Thursday).  They took her from the step down unit around 7:00am.  We went with her to the pre-op area, where they drugged her up.  She was acting so silly and wasn’t  bothered at all when they wheeled her away. 

It was after 11:30am when we got word that they were finishing up and that all went well.  We saw the surgeon around noon.  Dr. Azakie said that he had to make two incisions, one big one on her left side - from the front of her chest to the same place on her back - one small one on her belly and a chest tube.  The big incision on her left side is very close to the same spot they used three years ago.  The other two are new so she now has two more scars to add to her collection. 

Things got a little crazy when she came down from the O.R.  She woke up sooner than they expected.  By the time Dave and I got to her room in the PCICU nurse Helen, whom we affectionately call Auntie Helen, told us that as Gracie woke up she tried to climb out of the bed and tried to pull her breathing tube out… TWICE!

They continued to keep her sedated and she would continue to wake up, panic, then go back to sleep.  Each time got a little easier for all of us.  Until around 3:30 we all got together to hold her down as she was extubated – not fun with a three year old.  Once the tube was out Grace calmed down… I’m sure the additional Versed and Morphine had something to do with it as well.

My Dad and his girlfriend Rita came to visit around 4:00.  Grace was still really sleepy but waking up often.  Dave and I thought it might be a good time to go grab some dinner together since Grace would be drugged all night and we knew she was in good hands with Helen.  So we asked Dad and Rita if they would mind sitting with her so she would see family in the event she woke up.  They were happy to stay, so Dave and I went to  Burgermeister for burgers and beer.  If you are in the city and craving a burger you must try this place the burgers are awesome and we just learned that all draft beers are only $3.00 on Thursdays… YUM.  It was a really nice break from the hospital.  I think we were gone about an hour. 

We returned to find that another of our favorite nurses, Megan, would be taking care of Grace overnight.  Only to find a few minutes after her arrival that she got pulled to take care of another kid.  We got a different nurse and as soon as we met her we she was pulled to take care of another kid as well.  Finally we got nurse Gina whom Gracie’s had had before.  Gina is really nice and we were lucky to have her.  She is so good with Grace. 

It was another rough night as far as Dave and I sleeping.  I took the first shift with Grace and Dave went to sleep in the parent sleeping room/conference room.  He got about 3 hours then came to relieve me at 11:30 pm.  I went down around 12:30 I got to sleep for 3 hours until Gracie wanted me so Dave and I switched again.  He got another three hours (lucky!).  I was able to get little cat naps here and there but the next thing I knew It was 6:30 and Grace was wide awake. 

Friday was a good day.  Grace is recovering nicely.  Today she was able to get out of bed and sit in a chair twice and she also went potty in the big girl potty twice.  She got to play with bubbles and her personality started bubble up again.  She really liked getting her picture taken with her doctors and nurses.  She even started getting picky and wanted to preview the photos and even retake those she wasn’t happy with. 

Her nurse Nelsie and I gave her a sponge bath today and we found the biggest snarl of tangles on the back of her head.  Thought I was being so smart when I brushed out her hair and put it into braids before surgery.  Oh man!  I am dreading having to brush this out.  It may be time for a short short haircut for our little Princess Grace.

Today Grace also got to talk to her sisters and brother on the phone.  She misses them so much.  I think Grandma and Grandpa Truhe are going to bring the kids to visit tomorrow.  I can’t wait to see them.   Her mood is getting better by the hour.  She is actually playing and being silly with the doctors and nurses. 

The plan is to get her off of the nitrous oxide (NO2) & Hi Flo O2 and get her on a regular nose cannula for O2.  Once Grace comes off the NO2 and Hi-Flo she’ll be moved back to the step down unit.  The next step will be to remove her chest tube.  After they remove the chest tube I believe we have to stay for 24 hours of observation before we are OUT OF HERE!

Just spoke to one of the doc’s on her team.  She said things are looking good for getting discharged on Sunday.  Keep your fingers crossed.

And a huge thank you to Jen Wade (whom I first met online in a support group for heart babies). We met in person last week when our kiddos were neighbors in the 7 North step-down unit.  It’s a small world after all.  After a day of being next to each other we realized that we’d been long time readers of each other’s blogs.  Crazy!  She was so sweet to follow up on Gracie then came by Gracie’s room on 7 East and brought us lunch.  Jen, those sandwiches were so good.  THANK YOU so much. 

Wednesday, March 17, 2010

Day 2: Happy St. Patty’s Day!

Today was a slow day here at UCSF.  Grace was bumped from first case to second case to third case and finally to tomorrow morning.  This time it’s for real.  The surgeon Dr. Azaike came and spoke to me about it today.
A few shots of Grace being silly in the hospital
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Grace will be the first surgical case of the day so she will go to the O.R. around 6:30am.  She will not be allowed any food after midnight and only clear liquids until 4:00 am.  Dr. Azaike said he plans to go in through the side like I mentioned yesterday.  He did say that this course of entry will make the surgery more complicated and  a tougher recovery than going in through the chest but he believes it is still the best way to go so that we can save the chest from any more scar tissue.  That will save the chest entry for later in life when she might really need it. 
It was really great to watch the way Dr. Azaike looks at Gracie.  He said that he is amazed by her.  It is so great how he genuinely cares for her.  While he, Nurse Laura and I were reminiscing about her time here at UCSF and what those who went through it refer to as “the day”.  Which is the day that we thought we were going to loose our little Gracie.  He told me that he feels like he “owns” part of our little girl (not in a snarky way).   He also asked Laura to take a picture of Grace with her phone and send it to him.  When I told him that Grace takes dance classes, tap and ballet, he asked I would send him a photo of her in her tutu.   It is just so refreshing to know that her surgeon really cares about her after she leaves here.   I just feel so lucky that Grace has Dr. Azaike as her surgeon.
285 Grace and Dr. Azakie.  She was a little intimidated by his surgical wear but was still willing to have her picture taken with him.
Grace also got to take a walk to the playroom on the 6th floor today.  This was the first time she has ever been able to go there.  She got to jump in the balls, paint and play with the doll house.  We also got to check out some toys to bring back to her bed.  While we were in the play room we got to attend a special music therapy class.  Grace really enjoyed the music and dancing and also got to play some of the instruments. 
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She still tells us “I want to go home” several times during the day but as far as days in the hospital go today wasn’t all that bad.  Yesterday was all about Toy Story, today was all about Toy Story 2.  Good thing because I happen to love those movies :)
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Grace with Nurse Jenny, she was such a big help today when Grace had to get an ultrasound on her neck.  She was really hating it but Jenny calmed her right down.
Tonight it’s Dave’s turn to sleep in the room with Grace, so I get the parents sleep area… This is all new to us.  Dave did it last night and said it wasn’t too bad.  Basically it’s a conference room that gets converted to beds at night.  You have to reserve your bed at 3:30 (I think there are only 6 available).  There are couches to sleep on and they are sectioned out by curtains.  We will see how it goes… I have a hard time falling asleep anywhere so sleeping in a room with strangers will be interesting.
MY LIFE... It's a little messy, a little crafty and it's all good.