Home Sweet Home

We got home last night around 6:00 pm.  I ate dinner and went to bed intending to rest and watch some TV but ended up falling asleep around 7:30 PM and slept until 6:30 this morning. 

Grace is doing great.  Her cold is almost gone but that pesky cough is lingering.   We are supposed to limit her activity and check her pulse twice a day and call in if it’s lower than 76 beats per minute.   Her surgery is scheduled for April 9 but I spoke to someone at the surgeons office today and she said that the surgeon wants her in sooner than that.  I should be getting a call tomorrow to confirm a new date.

So we will be hanging out at home and trying to stay healthy until the big day.

UCSF Day 2

Our plan for today is pretty much the same as yesterday.  Which  means it might actually happen.  
Dr. Tanel and nurse Nancy are going to come by and interrogate Gracie’s pacemaker again.  Once that is done it looks like we will be free to go!  Whatever Dr. Tanel did to her pacemaker last night seems to have worked.  Other than a short period of time around midnight her pacemaker has been in the 80’s all night.  It sounds like Dr. Tanel and Dr. Azaike agree that it would be better to wait a few weeks before replacing it.  She will benefit from this in two ways.  First, obviously, it will give her time to get rid of this nasty cold.  Second, we will have some time to see if the pressures and regurgitation in the valve decrease once the rhythm is under control.   This will then help determine if they will just replace the pacemaker or if they will have to go into the heart and repair the tricuspid valve.  Also, whatever Dr. Tanel did to the pacemaker is only temporary, so we will be back here in 2 to 4 weeks. 
That’s about it.  We are just waiting on the pacemaker check to go okay before we get our discharge papers.

UCSF: Day 1

 

Ok, I have been trying to make this post all day.  Every time I get a few words down, it’s either time for tests or Grace is hungry (which is a good thing because she has barley eaten the last 3 days) Or the information changes.  LOL  I think we are done with tests for the night and Grace seems to be happy watching the Tinker Bell Movie. 

So today she had a chest X-Ray, an Echocardiogram, an EKG, blood work and finally had her pacemaker interrogated.   The first thing I heard is that the surgeon, Dr. Azakie, wants to postpone the surgery one day so that they can keep an eye on her for one more day because of the cold.  Then we saw the pacemaker specialist Dr. Tanel.  He made some adjustments to the pacemaker settings and was able to get it to work.  He wants to watch her over night and see if the new settings work.  His hope is that he can get the pacemaker to work good enough to send us home and reschedule the surgery for when the cold is gone.   So it looks like we could go home tomorrow and go through all of this again in a week or so.  Oh Joy!  Sounds like a fun way to spend Spring Break.

Grace is doing ok.  Her cold is SO much better than it was on Saturday.  She hates all of the tests but is in good spirits between them. 

I am doing ok.  I haven’t really gotten any breaks today so i am really hoping she falls asleep early tonight.  Although sleeping in chair in a loud hospital room with two newborn babies is not going to be very restful. 

The cell phone reception in this room is really bad.  Sorry Chaundra and Dad.  Dave’s not here tonight so I can’t really leave to make phone calls until Grace is asleep and I don’t see that happening anytime soon.  I will try to update the blog as often as I can though.

HERE WE GO AGAIN…

 

About a year or so ago we learned that one of the leads to Gracie’s pacemaker was fractured.  It was the ventricular lead which, in non technical terms, means the not so important lead is broken.  We were told that the atrial lead, the important lead, was working just fine.  I just remember asking “how did it fracture?” and was told there is really no way to know for sure.  I’m know its true that we’ll never know what made it stop, but I felt like, if the not so important lead could just stop working without any warning, how will we know that the good lead won’t just crap out at any moment?

On Friday that frightening possibility became reality.  Going in for her regular cardiology appointment the EKG check showed that her pacemaker was not working.  The good lead crapped out just like I feared it would.  So that puts Grace in an emergency situation.  We also learned that her pressures are up pretty high and the regurgitation from the tricuspid valve has increased. 

Grace will be admitted to UCSF in Monday morning, and will have surgery on Tuesday.  My understanding is that they are going to replace the pacemaker and the leads, but leave the tricuspid valve alone.  But, as those of you who followed Grace before know, the plans can always change when surgery is involved.

I am feeling a little stressed out about this whole thing.  I wish I would have pushed more for the leads to be replaced a year ago when we learned about it.  I wish we didn’t miss her pacemaker check in February and then wait so long to reschedule.  I don’t know if any of that would have made any difference.  At this point it’s neither here nor there.  I am worried that Grace has a cold with a pretty bad cough right now.  It seems like a bad idea to let her go into surgery with a cold, but then again not having a working pacemaker is probably worse.  We have to assume that her pacemaker might not have been working for up to six weeks so her little heart must be getting tired.  The benefit’s of surgery clearly outweigh the risk.  Then again maybe her weak heart is causing her to be sick? 

Grandma and Grandpa will be here later today to help out with the kids.  It is great to know that they are in good hands and we have one less thing to worry about.  Thanks to Chaunie for volunteering if this goes longer than a week.  Thanks to Dee for your offer and if this goes longer than two weeks you’re up :)  Thanks to  Nini and Rhonda and Gina for helping with the kids schedules, I know that will make things much easier for Grandma and Grandpa.  Thanks to everyone for all your prayers, please keep them coming.

Even thought we have been through heart surgery with Grace before, this time will be very different.  Last time she was a newborn baby and didn’t know to be afraid.  This time she will be scared the moment we pull into the parking lot.  I’m not looking forward to this.

We will know more on Monday and I will do my best to keep the blog up to date. 

Please keep our sweet girl in your prayers.

 

Blessings,

Jackie Truhe

More Layouts with the SFAC March Kit

I am really enjoying playing with this kit.  I highly suggest heading over to Scrap for a Cure and ordering this this kit.  I know it is going to sell out fast.

SFAC March Kit: Strawberry Fields

I just realized that I never posted any information about this kit. 

here is a photo

 

This kit is HUGE and filled with lots of scrappy goodness like patterned paper from Cosmo Cricket, My Minds Eve, American Crafts (including a sheet from the Newly released Dear Lizzie line) and we cant forget about Jenni Bowlin.  Also, there are tons of embellishments from My Little Shoebox, Dear Lizzy by American Crafts, Jenni Bowlin, and more.  There is even a chipboard mini album.  You have to head over to Scrap for a Cure to check it out.

Guess What?

I was asked to be the March Guest Designer for my favorite scrapbook company, Scrap for a Cure. I am so excited.

I received the March kit the other day, it is so amazing, I have been busy making layouts.

Here is my first one.

I post a few more tomorrow.

Hope you are all having a great week.
XOXO,
Jackie