I need to catch up!!

I have been so busy lately!  I have been meaning to put up a post for weeks now, but here it is, a month later since the last one!  The big kids started school this week, and so far so good.  It is always hard after the summer to try to finagle lunches, drop offs and pick ups, work, etc. after you have been out of the groove for a while.  But we survived!

Nicholas is doing well.  He is nearly 6 weeks post op.  In some ways it feels longer than that, but also it feels like it was just yesterday.  He is looking forward to being able to do some of his favorite activities that he has been restricted from.  He has missed swimming, riding his bike, going to the park to play, and many other things.  We will probably be going to a swim party and a bounce house party this weekend and he is very excited to be able to attend these types of things....finally! 

Nicholas, Noah, and Sienna

Two weeks ago we went on a fun outing with Laura, Wayne, and Noah.  We went to Santa Cruz and spent "A Day Out With Thomas".  Yes, as in Thomas the Train.  The kids had such a good time.  It was great spending the day with family and just having fun. 

As for check ups with our cardiologist, he said that everything is looking good.  The pressure gradient between Nicholas' Left Ventricle and his Pulmonary Artery is still measuring the same as when we left the hospital.  His new incision is a bit bigger than before, but has healed nicely.  Much to my dismay, his sternum looks odd to me now.  But overall, I couldn't be happier at the way he has healed back into my regular old boy.

Intermediate ICU (late posts)

I have to apologize for not updating more as we were in the hospital those last few days.  I want to document Nicholas' progress for his own knowledge so he can read about it someday, but also to keep our friends and family in the loop, as it is difficult to stay in close touch with you all.  It also really helps me to write about what is happening...it makes it concrete. 

I am going to write about the last few days in the Intermediate ICU....



Nicholas hanging out with Mom

We got transferred upstairs to 3West (Intermediate ICU for cardiac patients) on Thursday afternoon.  Nicholas was in better spirits as each day passed.  He started joking around each time I tried to take a picture, closing his eyes.  This is one of about 15 that I took and each time he would close his eyes or cover them with his hands!

It was great to start having bits of my boy come back as he recovered.

On Friday, we started the day with another chest x-ray and rounds from the team.  Nicholas especially dislikes having tape removed from his skin, and this day he had to have his incision bandage removed and chest tube dressing changed.  He also had to have his "art-line" and his "I-J line" removed.  The I-J is this super long catheter-like device that goes several inches down in his jugular artery (intra-jugular).  Nicholas is terrified of seeing his own blood and he is afraid his skin will peel off with all the tape holding things in place.  I got really annoyed and protective of him when anyone comes in and starts ripping the tape off without preparing him and using adhesive desolver first.  His nurse tried to do the "faster is less pain" method and I had to stop her to make her do it the way he is more comfortable with.  Poor Nic...he hates all that tape.

Nicholas eating his favorite--
Chocolate donut!

On Saturday Nicholas was doing better and better.  He enjoyed his favorite, a chocolate donut that morning. 

Again, a chest x-ray and rounds with his team and everything looks great.  His LV has not shown any signs of stress and his gradient is consistent with the measurement in surgery. 

Nicholas resting soundly after his chest tube was removed

The doctor told us that as soon as his chest tube quit putting out 50 mL or less of fluid in one 24 hour period, we would be good to go home.  On Saturday morning his total for that last 24 hours was exactly 50mL, so the team started collecting other evidence that things were progressing well.  The doctor came in one minute, and next thing you know he is preparing to take out the chest tube!  I was in the shower at that time and Lorenzo rushed in and told me what was happening.  I rushed out and made them double-check that the time was right, because once the tube is out, we leave 24 hours later.  It was very stressful, but obvious once it was out that Nicholas was so much more comfortable! 

 

My happy boy, glad to leave and go home!

On Sunday Nicholas had another chest x-ray and everything looked great.  The team wanted to have one last echo to verify that the LV was still holding up and that there was no fluid accumulation since the chest tube came out.  Apparently everything looked good, because we were officially discharged at about 2pm on Sunday!

We made a quick stop at a local toy store and let Nicholas pick out anything he wanted.  He decided on a stegasaurus and a triceratops.  He loves dinosaurs and he deserved it!  What a strong little boy we have!  Looking at this picture here I am so glad my sweet boy still has a sparkle in his eyes and the most handsome smile! 

You'll notice the dressing on his neck...it is now Monday night and he still won't let us get near it.  I have had to bargain all of the tape removal with him.  He pinky promised me I can remove that and the one other last dressing from his chest tube removal tomorrow.  We'll see!

Nicholas with his "Beads of Courage"

Nic's "Beads of Courage"
Each bead represents a procedure he underwent.

Quick update....we are finally headed home!!!

Still in CVICU

Nic tossing and turning as he sleeps.

It is about 1 p.m. and I just got a text from Beau asking if I have updated the blog yet, so I figure I better get typing!  We are still in the CVICU.  Nicholas has had his round of tests today....chest x-ray, bloodwork, echo....and we have heard that we will possibly transfer upstairs either this afternoon or tomorrow morning.  The team explained to us that usually with PA banding the LV will show signs of stress after 48-72 hours post op, so even though Nic is doing well, that doesn't guarantee a move upstairs.  Lorenzo and I have been sharing a parent's room to sleep in just down the hall from Nicholas' room, so that has been really nice to have a comfortable, quiet, dark place to sleep.  If we move upstairs, only one of us can stay with him overnight, and it is much busier up there.  So I wouldn't really mind just staying put for another night down here in CVICU.

I think a little bit of his personality is starting to come out.  He is pretty much terrified of anyone who wears so much as scrubs and a stethascope.  He needs either me or Lorenzo very nearby whenever they even need to listen to his heart or flush his lines.  He would probably be happy as a clam (well almost) if I could just climb up in bed and snuggle him 24 hours a day.  He has started to say that he is done with this, that he really just wants to get out of this place and go home.  I quote, "let's sail this ship and get out of here".  That's my Nicholas.

Sleeping soundly, for the moment....

One thing that is new is that he woke up twice with night terrors last night and even as he is sleeping now, he is shaking in his sleep.  I remember he did this for weeks following his last surgery and that is how he became a permanent fixture in our bed for the last 6 months.  So I'm going to presume that when we do go home, that our queen size bed will be a crowded one because I'm sure he's going to want to be in there with us, and I bet Sienna will have some serious seperation anxiety after being away from us for so long.  Maybe we should just go get a king???  Ha ha, I wish!

I will let you know when I know more....

A Sad Boy Here

I figure I had better get a post on here so everybody doesn't start to worry....All is well here, it has just been a day that's been hard to take a few minutes for myself to get this posted.

Nicholas had an x-ray early this morning, more bloodwork throughout the day, and an echo this afternoon.  Everything apparently looks really good.  They took him off of dopamine this afternoon, which means that he will lose a "line", or in other words, one of his IV's. 

I guess the only significant thing to report is that he is super depressed.  It is practically impossible to get him to smile, let alone not cry everytime he talks to us.  He is very sensitive this time.  I am pretty sure that last time he was a lot more mobile by now....this time he has tears in his eyes every time they so much as approach him.  He always does exactly what he is told to do, but he is trying very hard to hide his emotions and as one of the nurses said, he acts very "stoic". 

He was up most of the night last night, and when I fell asleep at his bedside from about 5:45 to 7:15 this morning, he looked at me and asked why I fell asleep and left him alone.  He is very scared and just needs constant hand holding and protection.  His nurse last night was this big, dark lady who was on the gruff side of things and I think he was scared of her.  So for me to fall asleep while he was under her care was a really big deal to him.  Needless to say, now he has finally fallen asleep this afternoon for the last hour or so and is sleeping soundly. 

We will be here in CVICU at least until tomorrow.  I'll let you know as soon as possible of any changes.

Extubated!!!

Nicholas was extubated today at about 2 pm.  He seems quite depressed and confused.  His pain seems to be under control, but he is very sad.  For about an hour before the extubation, they had to stop some of his pain meds, so I am glad that at least he says he isn't in pain.  He is part of a morphine study, too, which officially starts at 3 pm.  It is to study the rate at which oral morphine is absorbed and they will test how quickly it is metabolized.  So hopefully he is able to stay comfortable. 

I think the rest of the plan for today is to keep him comfortable and then after he has been resting for a few hours, they will attempt to allow him some liquids.  This could be difficult, though, considering he doesn't like popsicles or jello. If he doesn't have nausea issues, then a few hours later he will get some real food.  I will make sure we have a brownie or chocolate cookie on hand!  Real food! 

So happy to see those big blue eyes!

They also started a cool new thing here.  There is this organization that provides beads for the kids here and Nicholas has a string of letters for his name waiting for him.  Then he gets a specific bead for each procedure that he has and he will add it to his strand, which will tell his story of this journey that he continues with his heart.

I will update when I can....now that he is more awake and extubated, he will have more needs from me!  He is such a brave boy!

So Far So Good

We have been up here in CVICU for a while now, and I will try to update Nicholas' status....

So far his vitals are stable, but the doctors want to leave the breathing tube in until tomorrow so his body can rest and so they can closely monitor his Left Ventricle for any stress, i.e. LV heart failure.  He apparently didn't have much bleeding and everything was pretty much non-eventful up to this point. 

I feel both relief and fear.  I am so glad that Nicholas made it through surgery without any problems.  It hasn't gotten any easier each time we leave him to be put under general anesthesia, and to have either invasive tests or worse, open heart surgery.  Just to see his sweet face brings a lot of peace to my heart.  I hope that his LV can handle the new load placed upon it and that he will have a speedy recovery like the last time we were here. 

I feel a bit of fear because now I know that with a successful PA Band, comes the Double Switch down the road.  That scares me.  But on the other hand it gives me hope.  How can all of these emotions be so tightly woven together??? 

Nicholas in CV-ICU

I love my boy.  I am so thankful to be sitting next to him right now.  Please pray for us.  Whether you are religious, spiritual, or whatever else, please keep Nicholas in your thoughts as he continues on this journey. 

Surgery Day

Nicholas and Daddy working on a project before surgery

So here we are again...in the family waiting room at LPCH.  Funny that the first time we were here, I thought that all the families were here for open heart surgery, too.  But there are kids' families awaiting tonsillectomies, ear tubes, and other things. 

I started out today feeling annoyed because I thought we would accompany Nicholas to the O.R. like last time and say goodbye as they put him to sleep.  But this volunteer guy came as they were wheeling him out of the pre-op area and took us away, and I was pretty upset that I didn't get to be with him.  Hopefully Nicholas won't remember any of these minor details, but I guess I just thought that heaven forbid, something didn't go right, I wanted to be with my son until the very last moment.  Anyway.....

We talked to Dr. Hanley right before he went into surgery and we got the reassurance we were looking for, that yes, we are doing the right thing, and that Nicholas is in such amazing hands under Dr. Hanley's care.



Nicholas keeping busy before surgery

Nicholas and Mommy snuggling before surgery

So we went to grab a bite of breakfast after all this and just as we were finishing, Dr. Hanley comes walking through the cafeteria!  I waved him over and he sat down and explained to us that everything went very well, and that he would be getting transferred up to CVICU soon.  He said he was pleasantly surprised, though, because at the heart cath 5 weeks ago, Nic's LV was pumping at 50mmHg and today it was 70mmHg!  He said that Nicholas had "grown into" his first band since we were here in June and for that reason, he didn't have to tighten the band as much as anticipated.  He said that we would still be looking at waiting another 6 months or so to determine how everything looks for the double switch down the road.  Apparently Nicholas' blood pressure is 90mmHg and he said if we could reach that number in these coming 6 months, then he would likely be ready for the DS after this PA banding and wouldn't likely need another tightening.  Such great news!  (I think I have all the numbers right...I will try to find out if I have misunderstood...but whatever way it is, it is good news!)



Driving down to LPCH

We are heading down to pre op....Nicholas is sound asleep.  I am feeling rather emotional.  I dont know if one ever gets used to these things.  I thought that it would be easier this time, but its not.  I am sad that Beau and Sienna are leaving to Nys house, far away.  But I do find a little relief having Beau go with Sienna.  She will be glad for it, too,as will Ny and Rich, Im sure.
This morning Nicholas was not excited to leave.  He begged us to wait untl "next weekend" to go to Stanford.  We have talked openly about this next surgery, but I don't think he really understands.
We are making a stop at the dinosaur museum after our appointments at the hospital.  He will enjoy that, I'm sure.  He insisted on wearing his t-rex slippers; he always makes people smile as he tromps through the halls looking like a ferocious dinosaur.  He is pretty sure all the nurses are quite afraid of him.
I'll keep you posted....

On our way to pre-op....nervous.

Surgery Looming

We will be heading to LPCH on this coming Friday, July 8 for pre-op, then Nicholas will have his second Pulmonary Artery Banding surgery on Monday, July 11.  He has been home for this last week and will be home this coming week, in somewhat "isolation" to hopefully be as healthy as possible going into this. 

I feel like I have been somewhat of a space cadet lately....I have a very hard time focusing and I feel like my mind wanders and I am worrying and worrying all the time.  I know that we need to do this, but it is so hard trying to get ready for this again.  We have been lightly discussing "surgery" and this time we will hopefully prepare Nicholas better.  We have been collecting some "projects" that he can keep himself busy with while he recovers in the hospital, and he seems like he understands that these are for post surgery, not for now. 

I think I have all the arrangements made for the other kids, but this also brings a lot of stress to my mind.  I am most worried about Sienna, as she is little and a little crazy!  I keep telling Ny that I trust her to take care of Sienna, but that I absolutely do not trust Sienna!  She is a busy little girl and has no fear of anything....I hope she will be ok.

I will try to update often....thanks for any prayers!

Another OHS in Nic's future

Ok, sorry to keep you waiting...we talked to Dr. Hanley on Friday morning and he said that Nicholas' gradient is still right around 30mmHg.  Even though Dr. Peng already told us this, I was hoping (knowing the truth) that Dr. Hanley knew something that she didn't.  It was already kind of confusing because at all of Nic's cardiology appointments with his primary cardiologist here, we thought that his gradient was much higher.  At his last appointment with Dr Wright, they told us it was around 60mmHg.  So I'm not sure how that happened, maybe that ultrasound is less reliable than heart cath?  Well whatever the case, we are still at square one.  So.....

Dr. Hanley gave us two options:

1.  We leave the band where it is.  It will take YEARS for the gradient to get to the point where Nicholas could have his double switch.  Basically, the band would stay at the diameter it currently is, and when Nicholas grows, it will automatically tighten his pulmonary artery because the artery will grow, but the band will not.  But he said this will take 3-5 years, and when the LV reaches the ideal pressure gradient, we would have to wait another 6 months to 1 year to make sure the heart can sustain those pressures.  So in other words, Nicholas would be at least 7-9 years old before his big operation. 

2.  We do another open heart surgery to tighten the PA Band.  This would potentially be the last time the tightening would take place prior to the Double Switch.  Dr. Hanley now knows that the gradient they tried to impose on his heart in December was too weak, so now he can be a little more aggressive to restrict the flow and make Nicholas' LV work harder and get stronger.  Hopefully this will do the trick, but it is always possible that Nicholas would need yet another PA Band tightening to fully prepare his heart for the double switch.

We decided that we are going to go with the second option.  It has always been really important to me that Nicholas be "done" by the time he starts school.  I really don't see the purpose of prolonging the inevitable.  I want my boy to be able to run and play baseball and ride his bike without being so winded. I also don't want him to feel "different" when he goes to school because his heart can't keep up with the other kids.  Not to mention the amount of school he would miss if we wait.

It will be sometime within the next month, maybe even a few weeks.  On Friday, we picked July 1st to be the big day, but Dr. Hanley's office called later that afternoon and cancelled it because they said they accidentally gave it to a patient the day before, so now I am waiting for his office manager to call me tomorrow to let me know when we will actually be doing it.  

More to come when I know what the day will be.... 

A Bit Disappointed

Well we went to Stanford last week and went through the process of checking Nicholas' heart.  We met with the team on Wednesday for pre-op, and then on Thursday Nicholas had an MRI and cardiac catheter.  The results were disappointing.  We don't have the MRI report yet, but we can presume that not much has changed since before his PA Band was placed in December.  The heart cath measured Nicholas' gradient at around 30 mmHg.  This is almost exactly where he started.  We haven't spoken to Dr. Hanley, because he was in back-to-back surgeries and we checked out of the hospital before he was out of surgery.  But we have a phone consultation set up for this Friday and we will have the full report and he will give us his recommendation for the next step.  Dr Peng, who has done both of Nic's heart cath procedures, talked with us and she speculates that Dr. Hanley will want to re-band sooner rather than later.  So I think we will probably be looking at another open heart surgery sometime this summer. 




I will keep you posted......

Nicholas sleeping soundly after a long, busy day of testing.

Nicholas with Clarice, ready to go home

Busy, Busy

I have been so busy lately, with work and running kids...that I haven't had much time on the computer lately.  The big kids' last day of school was yesterday and I got off from work early today, so now the computer is free and I thought I'd take a few minutes to catch up.

We leave to go to Stanford for another round of catheterization and an MRI.  I got the confirmation phone call today while I was driving home from work.  This is a huge relief since it is our 3rd appointment that has been rescheduled by them!  Well, that is, relief coupled with anxiety!  I am so anxious to know how Nicholas' heart has or has not changed since his pulmonary artery banding in December.  I am also nervous to know, because that means we may have to make the next step, which both scares me and leaves me very hopeful. 

I do feel really lucky, though.  A few days ago I had this patient, "Dr. Judy"....and she was a researcher at UC Davis.  She is really big on stem cell research.  Apparently her team is researching using FAT cells and turning those fat cells turn back into stem cells to then grow new cells, organs, body parts...Can you IMAGINE???  I think it is amazing to think of a scientist taking a sample of Nicholas' fat cells (not that he has that many!) and growing him a new heart!  She was fascinating to talk to and it really gave me hope that someday these CHD kids may have a new opportunity at a new heart, grown right from their own cells.  Amazing!   She also invited me to be an advocate for funding from the state legislature.  She asked for my story and contact information so she can notify me of the next time there is discussion about this sort of thing.  I can't imagine what scientific advances could be made if there was more CHD funding!

I will write again soon!

Happy Day

Well, the good news is that I ended up getting the full time position in my office!  All that worrying!!!  I am so excited to have a good job and not worry so much financially.  The downside is obvious....less time at home with the kids. 

I think this last year, with so much going on....living very frugally, busy with four kids, the stress of Nicholas' heart surgery....has really affected me.  I am really going to try to get out of this "rut" I've been in and start trying to be more optomistic.  Is the glass half-empty or half-full?  I guess a lot of things in life are really perspective and I will try to change mine.

Happy Mother's Day to all the mommas out there!

Time To Catch Up!

I can't believe it has been a month and a half since I've posted here.  Since then, we have seen our cardiologist twice.  At our last visit on March 8 (which was exactly 12 weeks post-op), Dr. Wright delivered some exciting news...Nicholas' PA Band measurement was in the low 60mmHg range, which is over double of what it had been before!  If it is possible to get excited about more surgeries, then this would be an example of what we would hope for!

With that being said, it goes without saying that we are nervously anticipating another visit to Stanford, which is scheduled for the beginning of May.  We will have another cardiac catheterization and possibly another MRI to accurately measure the strength and pressure inside his heart.  The information that is gathered then will determine if Nicholas needs another PA Banding surgery to further train his left ventricle or if his heart is ready for the big Double Switch operation. 

Nicholas also went in for his 4 year well child check up this month (a little late, obviously!).  He has grown one inch and gained over two pounds since his surgery!  I suspect this has played a part in the PA Band gradient going up so much since the last echo!

Life has been so busy lately, I will try to do better to stay on top of my blog!

CHD Awareness Week

This week, February 7 - 14, is National Congenital Heart Defect Awareness week.  I have been eagerly anticipating this week for a while now.  I feel like I want to stand on top of the highest mountain top and enlighten the rest of the world about CHD's.  How can something so prevalent keep invading the lives of families all over the world, yet so few people know about them?  How can our government spend billions of dollars on research of other acquired diseases, yet congenital heart defect research is lagging far behind in comparison?  How can expectant mothers be screened for diabetes, Down syndrome, etc, but not congenital heart defects? 

There is much work to be done.  I wish I had a bigger voice.  For now, I will blog, go to my Mended Little Hearts meetings, and talk about CHD with anyone who will listen.  It is my wish that through research we can find the etiology of congenital heart defects and put to rest the pain and suffering of all the CHD families like mine.

Some exciting news! And Nicholas turned 4 years old!

I took Nicholas to his third cardiology appointment since we got home from Stanford and at the previous two appointments his gradient was measuring consistanly at around 30mmHg.  But on Tuesday this week, we finally saw Dr. Wright and he took another two echos and he found the gradient was about 45mmHg.  I AM SO EXCITED about this!!!  I was feeling a bit discouraged that everything we have gone through so far was kind of in vain, but 45mmHg is double from what Nicholas started from.  And to make it even better, Dr. Wright thinks that it is even higher, but Nic's anatomy and his tenderness around his incision makes it hard to get a true, accurate measurement.  He thinks we will probably be looking at going back to Stanford in a few months for more Cardiac Catheterization and another MRI so they can get an accurate measurement inside his heart and then decide when to do his next PA banding.  Hopefully that band is doing it's job and getting Nic's LV ready to take over systemic pumping....

On another note, Nicholas celebrated his 4th birthday on January 9th.  Happy Birthday to my big boy!  We enjoyed the company of Nonna and Nono Degano and Nic's cousin Noah and auntie Laura and uncle Wayne.  I attempted to make Nicholas a "monster truck cake" and it turned out pretty cute.  He liked it at least! 

Worry Wart

I should be in bed right now, but for whatever reason, I am not.  So I decided to update my blog! 

I started back to work this week, and it was good to be back.  I often feel like work is my "escape" and that it is what keeps me sane, so needless to say, it felt really good.  I had a moment of insanity, though, right before I left on Monday morning.  Nicholas woke up while I was getting ready and I decided that the area above his incision looked puffy, like it was really swollen.  I thought, OF ALL THE LUCK!  It swells up the day I go back to work!  So I called home later that morning to talk to Lorenzo and he said it looked fine, the same as before.  I asked to talk to my mom and she said it felt normal, like bone underneath, not fluid or something.  But I was still unsure, so I called our pediatric cardiologist and made an appointment for after I got off work.  I met Lorenzo and the kids there and the cardiologist was having the echo tech take an echo.  We came back into the exam room and the cardiologist (a different one than usual, Dr Wright is on vacation) said although he could see what I meant, it was completely normal and nothing to worry about.  WHEW!!  

I think the moral of this story is that mommies worry.  I want my little Nicholas to be healthy and I worry that I won't be able to protect him as I go back to work.  I need to remember that he needs to just be a kid and that I can't shield him from everything.  With that being said, it is easier said than done! 

We are three weeks post-op today and he continues to amaze me.  

Happy New Year!!!

Today is the first day of a new year, a new decade even, and I'm sure there will be many changes and excitement to come our way.  I am happy and proud because I think for the first time that I can remember, I actually followed through with my New Year's Resolution last year and accomplished the goals that I set for myself.  I resolved to participate in 6 5-k's and to train for them on a monthly basis.  I had some months where I was very active, and others where I was not so active, but overall I excercised on a pretty regular basis and I am sure that my heart is healthier this January 1st than it was last January 1st.  I even stretched my expectations of myself and did a 10-k and a half-marathon. 

I wish all of you, my friends, my family, and anyone reading this blog, a happy, healthy, and prosperous new year.