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

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. 

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


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.
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. 
  
  
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 :)

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.

UCSF ROUND 2: Day 1

Today has been a long day.  We left the house at 6:30am and didn't arrive at the hospital until a little after 9:00.  It was about 10:00 by the time we got Grace settled in her "room".  We are in what they call a "bay" which is just a large area with three beds, two crammed in on one side and only one on the other.  Last week we got the nice and roomy side with one bed.  This time we got the side with two beds, one of the beds is near the sink and has very little space, the other bed is by the window and is a bit more spacious.  Grace got the bed by the window so it's not too bad.

So far today she has had an EKG, Chest X-ray, blood drawn twice and an IV placed.  Placing the IV was not fun but she got through it and everything else fine.  We still don't really know what the plan is for sure, which is why I have waited so long to post.  Here is what I know (or at lest I think I know)... She WAS going to be first case of the day tomorrow; meaning that she would go in for surgery around 7:00 am (no eating after midnight, clear liquids until 4AM).  But, then some little bird said that she got bumped to second case.  Another said she was getting bumped to Thursday.  Yet another said she was going to be third case tomorrow.  And lastly, I heard that Dr. Azakie probably wouldn't want to have Grace as the last case of the day (third case) because she has so much scar tissue and her surgery could become more complicated.  As for the actual surgery, whenever they do it, the plan is to only deal with the pacemaker and the leads.  Dr. Azakie is going to leave the leaky valve alone for now.  The thought  is that once the new pacemaker is placed and her heart rhythm is under control her pressures and the regurgitation, hopefully, will correct itself.

The current plans is to go in through her side (Thoracotomy) rather than going through the chest (Sternotomy) again because of the scar tissue.  Most likely the doctor would like to save the chest for when he needs to go in that way for a valve repair (open heart surgery).  Basically, everything is up in the air at the moment.

As for Gracie, her mood is good.  She is spending her time watching movies on the portable DVD player she got from AMerican Airlines.  We've watched Toy Story twice today.  Last week, when we were here, Grace really wanted a Hot Dog.  Nurse Sam tried so hard to get her one and I think it finally came right when we were given the OK to leave.  Nurse Sam was working again today and made sure Grace got a hot dog for lunch and dinner!  She is so sweet.  It is really great how the nurses remember Grace from her yime here three years ago and they are always so nice to her whenever she comes back.  We got visits from Nurse Helen, Nurse Megan, Judith the social worker, Nurse Stephanie who is also one of Gracie's favorites and Dr. Teitle all came by to say hi.  Gracie is really popular around here.

New Plan

 

I got a call today from the surgeons office.  Grace’s new surgery date is Wednesday, March 17.  We need to check her into the hospital at 9:00 am on Tuesday, March 16. 

I guess sooner is better than later but I was really hoping she would have a little more time to get over her cold.  Her cough is pretty much gone but she still has a snotty nose.  We have been checking her heart rate regularly and it’s right at 80 beats per minute. 

On Tuesday night she will be in the step-down unit until she goes into surgery.  Only one parent is allowed to stay with her.  Neither one of us want to be too far away from the hospital so we got put onto the waiting list for temporary housing.  (Ronald McDonald House or The Family House) Also, once she is in the PCICU they won’t let either one of us stay the night in the room with her.  I have been told that you can get a bed at the hospital but I have never done this before but my understanding is that the beds are very limited and you have to reserve it daily at a certain time.  I also hear that they have showers for parents at thee hospital but I have no idea where.  I really hope we get something at one the the two temporary houses.  We also learned that we can get discounted rates at a few of the local hotels.  We might look into staying there.  It will be helpful if we have a place away from the hospital to take turns resting while one of us is always with Grace.  The good news is that she now knows a lot of the nurses so she might not be too freaked out if she wakes up and for some reason neither one of us are there. 

I think the visiting hours are from 9:00 AM to 8:00 PM.  NO ONE under 16 is allowed to visit.  Not even siblings.  Miranda, Coco and AJ are NOT happy about this new rule.  Also, if you want to visit make sure you let us know so we can add your name to the list.  They won’t allow anyone to visit if your name is not on the list.  I am told that this rule is very strict.

The kids will be staying with Dave’s folks for the first few days.  But we might need some help if her recovery goes longer than a week.  If anyone is available to help out, please give one of us a call. 

Thank you all for your love and prayers.

Blessings,

Jackie

AGE OF SAIL

 

Miranda with on the 5th grade field trip.   This one is really popular so a lot of the parents want to go as chaperones.  The teacher had a lottery to choose and unfortunately I was not one of the luck ones who was chosen.  Although it looked like a lot of hard work and the parents who went were really tired when they got home today so maybe it was a blessing that I didn’t get chosen.

The whole idea of Age of Sail is that the kids go on an 18 hour adventure and journey back to the time of 1906 when  San Francisco was hit by a big earthquake and fires.  The lumber carriers needed to travel up the coast to Portland, Or. to pick up lumber to rebuild the city.  The regular crew had gone ashore to help fight the fires so the Captain needs a new crew.  The school children, or lads, arrive at the Hyde Street Pier to sign aboard as the replacement crew.  They must prove to the Captain, through the completion of tasks, that they are capable of sailing the Balclutha.  The tasks include: reeving a block and tackle, riding a Bosuns chair, rowing a longboat, cooking on a wood burning stove, standing night watch and raising sails.

Once the students or lads board the vessel, it’s hands on education for them.  They learn to work together and to problem solve.  The adult chaperones or “tall sailers” are only there to observe and are not allowed to talk to the kids and have to obey all of the same rules.  No cell phones, iPods, cameras, digital watches or anything else that wasn’t available in 1906. 

I had planned to go up to San Francisco and have lunch with Miranda and hang out with her before she boarded the ship but with Grace being in the Hospital I wasn’t able to.  My friend Gina, Dannica’s mom, took this photo of Miranda and her friends for me.  Thanks Gina. 

Miranda was a rigger and was chosen by her group to be the First Mate.  She said the work was brutal but she had a blast.  I can tell it has really boosted her self confidence.  I am so proud of her.  Also, she never got word that Gracie’s surgery was re-scheduled so she made it through all of this with the added worry of her little sister’s health.  I am so proud of her.

YOU ROCK GIRL!

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.