Sunday, September 30, 2012

Day 3 post op

Today is a day for eating and walking. If we could get some poop action today, that would be awesome. We are trying to limit testing today in the hopes he will start eating. He has been running around the floor hunting up letters and numbers. He ate most if a blueberry muffin this morning. We cannot leave the floor yet because C has been having some issues with heart rhythm. Maybe tomorrow we will be able to go out in the gardens.

Friday, September 28, 2012

On the floor

We were moved to the floor at around 6 tonight (9/28/12). About 30 hours after his surgery ended. It helps to be in a less stressful environment. On the other hand there is more going on, gotta go take care of C!

25 hours post op

Quick update, drugged and grumpy baby takes precedence...
C's blood pressure is a bit high, we'll be staying in the CICU until we can get the numbers down a bit, we are also working on getting his airways to settle down.
Overall, he is grumpy and sleeping a lot, and but doing really well for just over 24 hours post op.

Thursday, September 27, 2012

Surgery today

After an incredibly long day that ostensibly began at 5am but for me was really just a continuation of the day before, C is resting comfortably in the Boston CICU. He did very well in surgery. Dr. Baird was able to repair the valve and there was no leak present on the post repair echo. C has minimal bleeding, no rhythm issues, and had no problems coming off bypass. He tried to sit up earlier today so they have increased his sedation meds. It is 8:00 and it feels like 1am. They may try to extubate around midnight.

Wednesday, September 26, 2012

We got bumped

When we arrived at the hospital at 10:30 this morning I was pretty calm... We ran into Dr Marx on the way to first floor preop. He grabbed a room and pulled us in to tell us we got bumped by a 4 month old needing emergency heart surgery. Our thoughts and prayers are with that family. We went back to cardiac preop and got new instructions for when C had to stop eating. We redid the chlorhexidine skin prep sponge bath that makes C scream and we are settling down for another semi-anxious night. I really want to scream.

Also, C has coughed several times tonight. I am very concerned that he caught another upper respiratory infection. Since he often gets reactive airway issues, I find it very concerning.
We head back to the hospital tomorrow morning, we are to arrive at 6 am.

Tuesday, September 25, 2012

How do people not know?

How is it that people don't know that congenital heart defects are the #1 birth defect, the #1 cause of birth defect related deaths?  How is it that when you ask nursing students, they don't know that 1 in 100 children are born with a congenital heart defect.  How is it not the first thing on a physicians mind when a baby comes in with rapid breathing and a heart murmur at 3 weeks old?  As we traveled to Boston this week I spoke with gate attendants, TSA officers and drivers, none of whom knew that so many babies were born with heart problems.

People are always shocked when they hear, but they also always have a brother, cousin, friend or neighbor who have been affected by CHD.  We don't have poster children.  Our kids either look very healthy or gravely ill.  There's no waif-like in between to tug at the public's heart strings.

I believe we have to find a way to educate people, at the very least, the medical community should know.  I believe anyone who performs a fetal ultrasound should be required to take at least one intensive course in fetal echos.  I believe that every ultrasound report should at the very least specifically answer the following questions without prompting from the patient:

•  Do you see four chambers in the baby’s heart?
•  Are there two upper chambers (left and right atria) with valves controlling blood flow into the heart?
•  Are there two lower chambers (left and right ventricles) with valves controlling blood flow out to the body (aortic) and lungs (pulmonary)?
•  Do the two valves and vessels (aorta and pulmonary arteries) exit the heart in a crossing fashion?
•  Are the walls between the lower chambers of the heart intact?
• Is the baby’s heart normal?

Until then, print this off and bring it with you to your 20 week ultrasound.

Monday, September 24, 2012

Boston Day 1 - Pre Op

Our first day in Boston started pretty early.  We had to be at admitting at 7:30 am.  C slept as we got ready and was still sleeping as we carried him out of the house.  We walked from the Yawkey Family Inn up to Boston Children's and arrived by 7:20 or so.  C had to fast.  No solid food after 4:30 am, no breastmilk after 8:30am and no water after 10:30am.  Admitting went very quickly and easily, they are very efficient.  Then we moved up to Cardiac pre-op.  This was basically a waiting area where we filled out some forms and then various people came and took us to cover each of the aspects of our pre-op testing.  They keep a checklist for each patient on a white board and can easily tell what things have been done and what activities will occur that day.

We started with a chest X-Ray, while we waited for the radiologist, I took a moment to breastfeed C. When the tech arrived, we headed into X-Ray which led to a lot of tears and a really quick X-Ray.  C had a very nice woman hold his arms above his head and his head very still so we could get some clear pictures of his very wiggly torso. Then, we went back to the waiting room so quality control could confirm the X-Rays were good.  While we waited, I breastfed again as the click ticked toward 8:30.

After X-Ray we went over to a cardiac pre-op consultation room where one of the cardiac surgery fellows came over and talked through what surgery they are planning on Wednesday, what the risks are and what they expect to happen.  The biggest point of note is that they expect 24-48 hours on the vent, 4-5 days in the CICU and another 5-6 days on the floor. They also talked about the risks and possible outcomes.  The off chance that he'll need a valve replacement, pace maker or other interventions were mentioned.  It was certainly nerve wracking, but it was much more thorough and detailed than the information we received before the last surgery.  Once that lovely talk was done and the consent forms were signed, we wandered back to pre-op.  Where they sent us on to the labs

At the lab they drew three vials of blood, which caused C to whimper a bit.  Then, when they were done, after they'd slowed the bleeding, they put on a band aid, which led to a complete and total meltdown.  We had to keep a hand covering the band aid to get him through the 10 minutes until we could remove it.  I was surprised they didn't get a urine sample, we had one last time.

We then talked with someone from cardiac anesthesiology.  He was also very reassuring and very thorough.  This was at around 10:20 so I was giving C his last drink of water. I asked what I'm sure is a very typical question ever since the 60 minutes special on waking during anesthesia.  They said they were very sure he'd be asleep and wouldn't remember anything (I think I asked the same question last time, but the very thought of him waking on the table terrifies me).  We got through all the scary details and signed yet another consent form.  Then we went back to the pre-op waiting room.

Next, a very kind woman came and took us to do vitals. We got a weight, pulse ox, blood pressure and height.  We discussed the EKG and determined that the number of stickers involved meant it might be wise to get it done during his sedated echo at 1pm.  So we headed back to the pre-op waiting room.

After a few moments, we were lead back into the cardiac pre-op area where 2 different people came by to talk about various studies that were being conducted.  We consented to join all the different studies because knowledge is power and anything we can do to help other people in our same boat we want to do. Then we went back to the pre-op waiting room.

It was about 11:15 and C had now been without food or liquid for what he thought was a VERY long time.  He began asking for "milks, mama, milks" repeatedly.  We distracted him as much as we could, then it was time for the CICU/Floor tour.  The Child Life specialist met us on the 8th floor and showed us the CICU.  They were doing rounds, so we couldn't go look around.  We got a brief overview of what the rooms were like, but they were all occupied so we couldn't go in.  We did find out that we'd be able to use cell phones while sitting on the parental sleeping area and that any of the CICU rooms could act as an OR in an emergency.  We then headed over to the floor where all rooms are shared and there are no cell phones allowed at all.  We got a brief look at a room, but things were pretty hectic all over so we headed back down toward cardiac pre-op.  It was actually break time and they had suggested we head out to a garden and walk around a bit.

However, on the elevator we ran into Dr. Marx.  I said hi and that we'd be seeing him later today and he burst out "Oh! The Panus Family! How delightful :)  I could talk with you some now, do you have time?  I have time!"  So off we went following Dr. Marx as he headed off to find us a place to chat.  We went over what the thought was going on with the cleft, what they thought would be the path to repair and what they thought the odds were of having to do more after this.  He hadn't seen the echo or EKG yet as they hadn't been done, but he was confident they had seen enough to make a preliminary judgement based off the studies we sent up from Mercy.  After a detailed explanation of how the common valve is formed and how it tends to be repaired, we dove into what the repair would probably entail.  All in all a delightful and informative visit.  He did mention that C's heart was very enlarged and that it was good to do this surgery now for a number of reasons, not the least of which being we can get that heart to decrease in size again.  This is completely different than what we'd been told before (not to worry about the size of his heart unless it was as big as an adults).  Dr. Marx believes this may be the last surgery we'll need on that valve.

After we left Dr. Marx we found a tiny garden where C could run around and scrabble in the dirt.  Of course, he also decided he had to fall down in a prickly evergreen ground cover.  It gave him a bit of a rash that has me paranoid now.  He had a delightful time running around pointing at trees and finding rocks.  It was a good break for a very hungry boy.

We headed back inside at about 12:10, we needed to be back to cardiology pre-op by 12:15.  A few minutes after we arrived, we were sent up to the 6th floor where they have a cath lab.  They also have a couple different rooms for echos. We met up with Maureen who was the nurse who would be monitoring C during our sedated echo.  She took another detailed history (Everyone was on the ball and they have an impressive number of rechecks they perform just to be safe).  We discussed chloral hydrate and its possible side effects, and the worst news of all, it tasted HORRIBLE.

After everything was checked, double checked and reviewed, it was time to give C the medicine.  He took it like a champ.  He gagged once and grimaced a bit, but swallowed down the entire dose.  We'd been prepared for spitting and gagging, but he just took it all.  Then, about 10 mintues later he drifted off to sleep.  We ran down for a quick lunch while he was sedated and unlikely to awaken.  They spent about 1.5 hours taking over 200 pictures of his heart we were there for the last hour. Then we did a quick EKG and it was time to try to wake him up. I asked if he could have milk, she said no, we'd have to start with water. We tried to get him to drink, but he cried Milk! Milk! he wanted nothing else.

Then we found out one of the pictures on the echo was missing, so we did a quick stand up echo which worked far better than expected and returned to try and get him up and willing to drink.  He again asked for milk, she asked what he said and I told her he wanted milk.  She said he was really focused on that and asked if he liked milk.  I said well, he likes his mom and it is comforting.  She said "OH! I forgot you were nursing, I thought he wanted cow milk, but you said he won't drink anything but water and breastmilk.  Go ahead and nurse!  I'm sorry." So finally, C had his milk and he was once again happy.

While he nursed we discussed when and how he could eat again and how uncoordinated he'd be for the next 6 or so hours.  We were dismayed to learn he shouldn't really eat solids until at least 7:15, though he could nurse before then.  We were pretty much done by this point (and done in).  Dr. Baird had another case come up, so we were not able to meet with him.  We'll meet him the morning of surgery.  We've spoken several times on the phone and by e-mail and I am comfortable with him. Dr. Marx spoke with us again after removing the echo and he was delighted with the results.  The culprit is that cleft, which apparently had its stitches rip out at some point post-operativly.  We'll go back in and close the cleft the Boston way and that may be the last surgery we'll need.

We were worried because we needed soft solids that were easy to chew and those generally aren't C's favorite. As of 7, C was still unable to walk without falling and was still pretty loopy.  He was also getting very agitated and grumpy!  We were incredibly grateful when 7:15 finally arrived.  There was no need to be concerned about what C would eat.  For once, the answer was whatever we put in front of him and as fast as he could eat it.  He ate about a cup of noodles, a container of apples and 1.5 slices of zucchini bread.

TheMan and I ordered Chinese and Thai respectively, it was mediocre, but filling.  C crashed shortly after he finished eating and got his medicine.  He's still a very loopy baby.  A drugged toddler is amusing for about 30 minutes, then he's just pitiful.  Poor baby, I hope it is worn off by morning, they say the balance issues can last 24 hours.

This post ended up hugely long, but then, or day was hugely long.  My fingers are now as exhausted as my feet, so I think I'll head to bed.

Sunday, September 23, 2012

C's First Plane Ride

My husband's motto is "procrastination always pays off now", so, after a frantic day of packing, we arrived at his parent's house to get 5.5 hours sleep.  We woke up at 4:30am and headed to the airport bright and early at 5:30 am.  After a bit of a false start where the bag with C's DVDs and cookies was left in the car, we finally got our bags checked and headed for the gate.  As we walked up to the gate, we noticed a sign "This gate has no restrooms, food or drink available." *boggle*  We immediately detoured to go to the restroom and change C one last time before going through security.

After we got all that taken care of, I explained our situation to the security guard, pulled out our giant bags of liquid medications and had an incredibly helpful TSA official help us fill our tubs with stuff.   I was allowed to wear C through the metal detector and since we didn't set off any alarms, they let us carry on without having to let him down to walk on his own.  That was HUGE, if I'd let him walk, he wouldn't have wanted to get back into the carrier.  TheMan was randomly selected to have his bag searched, it was all really laid back and they were all super helpful.  The trip through security was completely painless and they even helped us repack what we were required to pull out.

Pre-boarding began soon after we got into the gate area.  TheMan went ahead of us and scrubbed the walls, seats and trays with clorox wipes, then he installed the car seat (rear-facing!!).  We followed the advice of some fabulous travel gurus over at the BabyCenter Traveling with Children board and purchased a Cosco - Scenera for our trip.  I hung back and talked with the person manning the gate until all the other people were settled, then C and I came on board and sat down.

C panicked a little bit when I put him in the car seat.  Our fellow fliers were treated to 10 minutes of whining and a repeated chorus if "All Done!" and "Milk!" before we were finally in the air and the fasten seat belt site was off.  I was able to nurse C into a better state of mind and then we gave him the tablet.  Between those two activities we were able to keep C happy for the remaining 2 hours and 34 minutes of the flight.  As soon as we landed, I worked to get C back into the carrier to ensure he wouldn't want to walk through the airport (terribly concerned about viruses/germs still).

We found the baby changing room, got C into a new diaper and headed down to the baggage claim where our bags were just coming around on the conveyer belt all grouped together.  We grabbed them and asked a very nice driver standing holding a sign where we would go to find our driver who was waiting outside in the "limo area".  He told us which doors to head out and we were on our way.  Our driver had no trouble guessing who we were.  No one else was walking toward the area with a toddler.  We installed the car seat and headed off to the Yawkey Family Inn.  We were a couple of hours early for check-in so we decided to hang out over in the quiet room until our room was ready.

When we arrived we were delighted to find we had 2 full beds and a bathroom in our area.  We were able to link the beds together and get enough space to safely cosleep with C.  We were exhausted so we made it an early night.

Thursday, September 13, 2012

Sometimes the fear is breath-taking

I'm often trying to corral unruly thoughts and fears of the future.  We're two weeks from C's next open heart surgery and it is much harder than the first.  I was dazed with exhaustion for the first surgery and that numbing cushion was truly a blessing.  Now a days we get more sleep, so we haven't had that particular coping strategy.  

I'm often blindsided by fears of C's death or disability.  I put away his puzzles and worry that he'll never use them again.  I walk by a toy or object and worry that soon it will hold an echo of his memory, and I won't be able to hold him. I look at him and feel guilt and fear for the future.  I love him so much, sometimes, when that love collides with my fears, it takes my breath away.

Sunday, September 2, 2012

Health and Sanity update

After writing my last post and consulting with some brilliant women over on BBC, I decided to follow my gut and at least talk to the on call pediatrician.  They told me basically what I had expected, which was I should at least take him in and get him looked over.  We went to Children's Urgent Care and hung out for three hours.  During that time they did check him out, we had a breathing treatment and X-Rays.  They were concerned about heart failure or pneumonia.

In the end, we caught the very beginning of an ear infection in addition to the upper respiratory infection we already knew was an issue.  They confirmed we made the right call this morning when we increased his inhaled steroid.  The breathing treatment they gave allowed us to get back on top of his wheezing.  Now we just need to keep on top of it.  If his respiratory rate goes over 60, we are to go to the ER.  It is down to 43 now.  It was 56 when we were at urgent care earlier today.

C's temperature was hovering at normal when we got to urgent care, but was over 100 by the time we left.  When we finally got him home, it was 101.6.  A dose of Advil, a brief nap and his first dose of antibiotic settled him enough to eat a bit of food.  Hopefully we'll catch up on calories lost in the next few days.  As it stands, I suspect we lost our 4oz weight gain... I'm just hoping to stay over 23lbs.

I'm Tired of Being Terrified

As I write this post, C and his daddy are running around the house laughing and rough-housing.  C has no idea that in 3.5 weeks he's going to be facing a very serious surgery.  I have no way to tell him. It is beyond his current ability to understand.  In some ways that's a good thing.  But I can't stop imagining how confused and upset he's going to be when he wakes up in post op, in pain and scared with no idea why I handed him over to people who would hurt him like that.

Of course, that's not my biggest fear.  My biggest fear is that he'll either wake up a completely different kid, or he won't wake up at all.  I remind myself that the vast majority of children wake up just fine, but that doesn't really help.  Strokes, brain damage and death crowd my subconscious with fears that break through anytime I drop my guard.

I have never thought of C as particularly medically complex, but now that I'm faced with explaining him to a surgical team that hasn't known him since birth, I find that he's got a bit more to him than I expected.  We hope that his failure to thrive is directly related to his heart.  We know that his kidney reflux is not.  We hope that his reactive airway issues are related to RSV, but we are rapidly approaching the end of the 6 month window within which his repeated wheezing episdoes can be explained away.  Once that window has closed, he'll officially have viral induced asthma.

We had to use his rescue inhaler last night at 1am and again this morning at 7.  Our goal is to use the inhaler no more than once a week and no more than twice a month.  That's the definition of controlled asthma.  We are no where near that.  We use the rescue inhaler every 4-6 hours for 3-5 days every time C gets a cold.  That has been true since February 29th when C got his first round of steroids after contracting RSV.  He's generally fine when he's up and running around.  However at night, when he settles to sleep, he gets really junky and congested and he starts working harder and harder to breathe.  They think some of this may be heart related as well.  But chances are, regardless of all other issues, we're going to add the label viral induced asthma to his list of illnesses.

It is hard to hear his crackly and wheezy breathing.  It reminds me how fragile life is and how easily it can be taken away.  I'm scared that he will have respiratory issues again after this surgery.  Last surgery he was on the vent for 6 days due to a pulmonary hypertensive crisis.  C's new surgeon believes he has some degree of pulmonary hypertension stemming from his mitral valve leak.  I don't know how that interacts with his frequent respiratory infections, wheezing and inflammation but it scares me.  I am terrified that surgery will cause an asthma flare up.  It is one of the many things that has me scared.

In a best case scenario, most of what we're experiencing with C will find its root cause in his heart function.  Fixing his mitral valve will hopefully improve his ability to resist infection, give him some reserves for when he does get sick, bring back his appetite, decrease his caloric needs, enable him to gain weight and decrease his overall respiratory distress enabling his lungs to settle down.  If that is true and we are correc that C has outgrown his kidney issues then we could be in a whole new world.  We may get to the point where we have only one specialist.  We'll always have cardiology.  But maybe we can have just that.

We were discharged from urology last week with a caveat that we must return if he has a UTI.  We chose not to do any testing to confirm the VUR was gone because I didn't want to add any tests that weren't medically required.  I am keeping him on prophylactic antibiotics until after his OHS.  I didn't want to risk his VUR still being present and getting a bladder or kidney infection that would delay surgery.  We'll discontinue the antibiotics when we get home from surgery.

I'm honestly not clear who to talk to on this.  My pediatrician, the local cardiologist, the out of state coordinator for Boston or the surgeon in Boston.  I am leaning toward e-mailing his surgeon, but I'm not at all sure that is the appropriate course.  On the other hand, I want to be 100% sure he knows and acknowledges that C has a cold 3.5 weeks before surgery, that it caused an asthma flair up and that we are fighting reactive airway issues.  That seems like important information for him to know.