Never A Dull Moment

Tonight we are all enjoying some much needed quiet time just doing not much of ANYTHING.  Lorenzo and Beau are putting together their new remote control model airplane and Nicholas was "helping" and decided to stick a piece of foam up his nose.  I tried getting him to blow it out; didn't work.  I tried to use tweezers; didn't work.  Finally I got some of my dental instruments and was able to pick it out of there!!!  If that didn't work, we might have found ourselves on the way to the E.R.  I really didn't want to step a foot in another hospital so soon!

I realized that I didn't really explain what the doctors decided on the last day at Stanford.  They had done that last echo and it appeared that the gradient was still around 30mmHg.  Dr. Hanley thinks that the number is probably higher, but because of the bandages they could only get it to show up like that.  Also, as we wait for at least a few months, Nicholas will grow and the band will stay where it is, naturally creating more of a restriction for his left ventricle.  We go in tomorrow to our local Pediatric Cardiologist for a post-op follow up.  I will let you know how it goes.

By the way,  I hope you had a very Merry Christmas! 

Home Sweet Home

We are home.  It feels so good to say that.  We slept in our own beds, ate at our own table, and watched our own t.v. The simple things in life are what make us happy.  Sienna rememberd us (I was concerned that she wouldn't recognize us after being gone for 8 days), the big kids had the house all ready for us to come home to, and my mom was baking up a frenzy of Christmas candy in the kitchen.  Ahhh, it feels good to be home.  And all in time to celebrate this special time of the year together.

I would also like to thank everyone following the blog for your concern and prayers during Nicholas' surgery.  We have started this journey and still have a long ways to go.  But knowing that Nicholas was in the prayers of so many people, I never had a doubt that he would do well and heal quickly.  So thank you from the bottom of my heart.

Going home!!!

We stayed yesterday after checking out of the hospital so we could all have some much needed rest; we are getting ready now to leave the very gracious Ronald McDonald House.  We are just loading up the car and I will post updates as we go...

Can't wait to see the other kiddos!

Day 2 Intermediate ICU

We are still in the Intermediate ICU; we had a chest x-ray this morning and they determined we could remove the chest tube.  The team came shortly after and pulled it out.  It didn't seem to bother him much, so it wasn't too big of a deal for him.  They also repeated the echo this morning and they determined that the gradient on his Pulmonary Artery is right around 30mmHg.  We started at around 22mmHg, so there is a little improvement, but not the kind of restriction that would really force his left ventricle to pump hard and train it to take over the systemic function down the road.  We are waiting for Dr. Hanley to look at the information and make a recomendation.  We are looking at two probable choices: 1: re-band before we leave, or 2: leave and allow Nicholas to grow into the band.  This makes me feel really, really emotional.

Nicholas had a good day today.  He got to go on a WALK!  He looked like he wanted to run and jump, but thankfully we had a good hold of him and he didn't topple over or anything!  He had a few exciting visitors today, too.  Some firefighters came this morning and were handing out toys. Nicholas got a new fire truck that makes siren noises!

We also got to go to the "Forever Young Zone" and Nicholas got to meet two players from the San Francisco 49'ers! Nicholas received a Build-a-Bear from #40 Chris Maragos and he got his picture taken with #66 Eric Heitmann.  What a neat thing for these guys to do!  I think I saw a news camera from NBC, so it wouldn't surprise me if Nic is on the news tonight!

I can only hope that Dr. Hanley will know EXACTLY what we should do.  This is an emotional roller coaster and I want to get off!!!

Intermediate ICU

Today has been a busy one.  We started off the day with an xray and breakfast, then an echo.  We saw the doctors later in the morning and they said they are happy with the progress Nicholas has made.  They said we could remove all the IV lines, but we had to make a new one because the others are either unnecessary or breaking down.  So now Nicholas only has one IV in his foot.  He still has his chest tube too. 

We also got the o.k. to leave the CV-ICU.  So we transferred up to the Intermediate ICU this afternoon.  Nicholas is doing better; although he still seems on the sad side of things.  We were able to take a wagon ride, which he loved, and that perked him up a little.

We have another echo in the morning to check the banding.  Today they said it appears that the gradient isn't as high as it was during surgery.  It could be because all of the bandages prevent the tech from getting a good angle and not an exact accurate reading, or it could be that it hasn't achieved what it was supposed to.  If it reads low again tomorrow, then they will likely do more tests (I would guess an MRI and/or cardiac catheter) to get a more accurate measurement.  If it is lower than we want, we may be looking at a re-banding sooner rather than later.  More to come when I know more....

Making Progress

Just a quick update....

Nicholas was able to have his beloved chocolate moo this morning, and the first thing he asked to eat was a chocolate donut and a chocolate muffin.  Glad to see him getting a little bit of his personality back!! 

He has definately not been able to understand what is happening to him.  He seems to be "comfortable", or rather not in pain.  But he seems to be very depressed and sad.  He cries on and off whenever he is awake.  He keeps continuously asking when we get to go home.  He is begging to talk to Sienna.  So Lorenzo pulled out some video on his phone of Sienna's birthday, and Sienna doing laundry, and Sienna goofing around in the leaves, and it seems to really perk him up. 

The docs came in for rounds this morning and they are very happy with his progress.  He will still spend one night and some of tomorrow in the CV-ICU if everything continues to improve as it has.  He will get his neck IV out tomorrow hopefully, because it seems to really bother him.  The main thing they are watching is a little bit of fluid in his right lung, but they seem to think he will resolve it without intervention. So the tenative plan is to stay in CV-ICU tonight and then transfer up to the recovery ward tomorrow. 

Let the games begin...

Our brave little Nic was extubated today around 3:45.  He was not very happy about all the people in the room, everyone telling him he did such a good job, and telling him he is so brave.  I wanted everyone to just be quiet and let me and Lorenzo talk to him and explain things to him since we know him best.  I know they were just trying to make it easier for him, but it seemed to me that it made it more anxiety-provoking for him.  He could barely talk from the raw feeling left behind from the tube.  Now, a few hours later, he has episodes of crying and it seems that the real work begins.  He has been begging me for a chocolate moo (milk) for over an hour and it will probably be at least tomorrow morning before he can have anything like that.  He has not even been allowed ice or water yet.  It could be a really rough night.

Everything is stable except his "bi-carbs", which are low.  They are somewhat at a loss as to why, but they are testing his urine to see if he metabolizes the bi-carbs they keep giving him in his IV quicker than normal and maybe that is why they are consistantly low. I'll keep ya posted...

We heeded the advice from the hospital staff and went to our hotel last night for a good night's rest.  We checked out of our hotel because starting tonight we have access to the parent's lounge where we will "bunk" with 3 other families here at the hospital.  I figure that assuming Nicholas gets taken off the ventilator, one of us will stay with him at all times, and we will take turns sleeping in our little cot.  Could be interesting!

When we got to the hospital this morning, the echo had already been done and the nurse was waiting for the doc's to make rounds with the information from the echo.  It looks like Nicholas is doing very well; he is slightly dehydrated, so they are increasing his fluids, but other than that, the left ventricle seems to be handling the new work load well.  He has had episodes of low blood pressure, which could either be related to the slight dehydration or could be from too much sedation, so they are still trying to get his meds just right.  They may have to give him some lasix, which is a diuretic, to help him urinate if they don't see more urine output after increasing the fluids.  They also have started decreasing his dopamine, which helps the heart contract, to see if he can handle the new work load without meds.  He woke up today and we got to talk to him and explain a little about the tubes (which I might add he is not very fond of) before he drifted back to sleep.  He looks pretty uncomfortable, not from the incision, but from the tubes in his mouth, nose, chest, IV's in both wrists, and one in his neck.  So as he gets stronger and stronger, he should be more comfortable.

The team is monitoring his vitals as they continue to decrease the meds; and when he meets the criteria they are looking for, they will extubate him.  That will probably happen this afternoon.  I'll let you know!

Thanks again to everyone for your thoughts and prayers and all the help we have and are receiving back home!

CV-ICU (CardioVascular Intensive Care Unit)

After hours and hours of waiting, we finally got to see our boy....and to those of you who know me, you know that I am not typically afraid of medical things.  I like to watch it on t.v....I work in people's mouths each day at work....but there is something very, very different about seeing your child on a gurney with tubes and bandages and monitors and in a medically induced coma.  I nearly fainted twice and almost threw up.  I had to leave.  Which is completely opposite of what I expected of myself.  He woke up at one point when they were trying to get the right balance of pain meds and sedation meds.  The nurse, Dorothy, was attempting to suction his breathing tube and he immediately woke up and started trying to pull the tube out of his mouth; he was coughing and it looked like he was drowning or something.  He saw me there and I didn't know what to do; Dorothy had to hold him down, so he wouldnt pull the tube, and she told me to go to the nurses station to get help.  I ran down the hall and another nurse came in and they were able to adjust the sedation meds and suction and settle him down.  Apparantly this is a good sign, meaning that he is healthy and fighting to get better.  Simultaneously very scary.

There are so many sad-looking families here.  The only thing I can think of is "pick your poison".  They are not all heart families; I have seen little kids with no hair (cancer); I have seen tiny babies being wheeled out in incubators; I have talked to a family whose 2 1/2 year old little girl has a possible fatal case of strep A and may have to have her fingers and toes amputated.  It is just so horrible that people have to go through this.  But in the same breath, I am so thankful we are here and have an amazing team helping our Nicholas.

Nicholas will be intubated until tomorrow mid-morning, when they will start weaning him off the ventilator.  As he takes on more of the natural breathing function and his heart responds favorably, they will eventually take him off the breathing machine.  Then we can expect to stay for a couple more days in the CVICU and when he passes all the criteria, we will move upstairs to the recovery rooms for a few more days.

I'll keep ya posted.  Love to all who are thinking of and praying for us.
 

Surgery day

Nicholas with Clarice and Rudolph, under the spell of silly juice

I got up this morning at 3:45 a.m. to get ready for the surgery today.  It didn't go as smoothly as I would have liked; Nicholas was on to us that something greater was going to happen today than the past appointments he has so bravely gone through.  He was not as compliant as usual; he cried in the shower, he cried getting dressed; he cried in the car.  All the while, Zo and I tried to stay stoic and strong.  He was first getting in to pre-op, and they gave him his "silly juice", which really helped him relax.  Then they took him away.  Then came the tears.

We were taken to a family waiting room, and we then got to meet the infamous Dr. Hanley.  The nurses and fellow doctors we have met all talk about him like he is a god himself.  And they say these things with real conviction, not sarcastically.  So we sat down with him and he started at the beginning, explaining Nic's defect and really helping us understand what we are dealing with.  He was very real and compassionate.  He said that they will go in and carefully monitor his left ventricle until they get the pressure gradient just right and then band the pulmonary artery.  He said that we are doing the right thing. 

He also explained that usually about  75-80% of the time they will have to re-band.  This was kind of news to me; I was under the impression that they only have to reband 20-25% of the time.  So most likely we will have a second open-heart surgery to reband, and then another 6 months of waiting, and then about a year from now, we would do the double switch.  He explained that this is not a guarantee; that it might not even work.  But the alternative is to watch and wait, and at some point in time Nicholas would be in full heart failure and need a heart transplant.  So what is worse???

For now, we will wait as patiently as possible.  I will write more later when we see our boy.

Pre-op for Pulmonary Artery Banding

We are here in our little hotel room just trying to stay preoccupied while we wait for tomorrow.  We had a busy day of pre-op testing and meetings; everything went smoothly for the most part.  We got to the hospital at 7:30 this morning and started with an echocardiogram, followed by an EKG.  Nicholas did awesomely for these tests.  After that, we had 2 chest x-rays, and then met with the anesthesiologist Physician's Assistant, Chloe.  We had a Child Life Specialist, Jeanie,  come and take Nicholas on a tour while we had our first meeting with the Surgical Physician Assistants.  They explained what we should expect after the surgery, and gave us a list of possible complications during surgery.  They gave us chlorhexidine wipes that we have to wash him with tomorrow morning before we leave our hotel.  They answered all of our questions.  After that, we did the last test I was dreading, the blood draw.  Last time we were here, he kind of freaked out, but they did such a good job that he didn't realize what had happened.  This time, he remembered the blood draw room and it was really hard to hold him there (four of us) while they took several vials of blood.  He was burnt out after that and begged us to go back to our hotel where he could just watch a movie and have a little "siesta".  We slept for 3 hours!

All of our questions have been answered and we are about as prepared as one can be before giving your child up for this life-changing open-heart surgery.  One thing that was interesting to me was that the Pulmonary Artery Banding procedure is relatively simple; on a scale of 1-10 the Physician Assistant rated it at about a 2.  The entire procedure should take about 1-2 hours, but Nicholas will be away from us for about 4 hours.  He will likely be in the cardiac ICU for a few days, then he will transfer to a regular recovery room for a few more days.  Hopefully we will be home by Christmas. 

I am so thankful for all the prayers and well-wishers leading up to this point.  Mostly I have kept it together up to this point, but I have had moments where I just want to cry.  If it is possible to be glad, I am glad that Nicholas is in such good hands, and I am glad that there is a surgery to make his life better.  I am glad that we have family helping us out and taking care of our other kids so that we can focus on Nicholas.

Speaking about the other kids, I really miss them.  Kayleigh is starting finals tomorrow, Beau doesn't think he can focus to go to school, and Sienna apparently keeps looking out the window looking for us.  I hope they are all ok. 

Note the cute dinosaur slippers on the picture on the right: Auntie Ny got those for him the day before we left and they have been a huge hit!  He wore them around the hospital and had many admirers and made many people smile.  Nicholas was pretending that he was a dinosaur (specifically a t-rex) all day.  He was his usual animated self, and I am glad he had a good day (minus that dreaded blood draw).