Christmas is coming

Christmas is coming :)  We're doing very well here.  C's been sick for almost 6 weeks, but even with that, his lungs have stayed clear, which is a huge improvement over how illness went before surgery.

We're adding an ENT into our list of specialists.  C has had too many ear infections at this point, so we're checking in to see if we need to do anything.

Things are going pretty well overall. It is hard to remember to blog when we don't have a lot of drama going on.

Holter Monitor Results :)

We did our holter monitor study last Friday.  Unfortunately, C had the stomach flu and a fever during that time, which means we didn't get a good baseline.  It also meant he puked on the monitor, his car seat, our bed, our chair and several other times on the floor.  Poor kid.  The flu lasted 72 hours where he didn't eat and was pretty subdued.  Since then he's been eating like crazy to make up for it, which is all good.

Yesterday afternoon, we received a fabulous Thanksgiving gift from our cardiologist.  He called with the results from C's holter monitor.  Despite it not being the baseline we were hoping to establish, We did find that C's heart can and will respond as needed when his body puts on a greater demand.  Additionally, when his heart rate is higher, he tends not to go junctional in his rhythm.  All very good things that mean we may not end up with a pacemaker.  I'm feeling very hopeful and thankful today.

His average hourly heart rate stayed in the 70's.  Overnight he had some dips into the 40's but overall, his heart is meeting his body's demands.  At one point (probably when TheMan was chasing him around the house) his heart rate was as high as 140.

Our cardiologist seems much relieved and somewhat surprised by the results.  Overall, he seems less worried than he did before we used the holter.  We'll be doing this again after the first of the year.  Our next cardiology follow up will be January 3rd.

Cardiac Follow Up - 3 Weeks Post Op

We had C's local cardiac follow up today. I was happy to hear our cardiologist say "I've always advised families to wait, but if this valve continues to work like it is, I may have to change my thinking on that". I was less happy to find that C's heart rate continues to be low (resting 57ish) and beating in a junctional rhythm. 

We're on a waiting list for a holter monitor. At this point we are looking to get some baseline numbers so that we can see if he improves over the next few months. If we don't see an improvement in the next 4 months, we may be getting a pacemaker.  If the holter monitor shows any concerning drops or pauses, we may be getting a pacemaker sooner rather than later.

I asked Dr. Gellat if he thought it could simply be the size of C's heart causing the issue.  While it may be the reason for the slower beat, the fact that it is beating from the junction instead of from the sinus node indicates there is an issue.  The good news is that the EKG does not indicate heart block.  When the junction node fires, it does trigger the sinus node and both the atrium and ventricle are beating.

It will be interesting to see if C's increased heart rate will lead to sinus node taking over firing.  We were seeing normal sinus rhythms in the hospital when C was up and about.  Even when C's heart rates are in the mid to lower 40's he still profuses well.

An open letter to Children's Hospital Boston

Hello,

I wanted to give you guys some feedback on our time at Boston Children's Hospital.  We were inpatient beginning on 9/27 and discharged on 10/4.  During our stay and during our pre-op appointments I was impressed and gratified to note the breastfeeding friendly signs and attitudes of the staff and practitioners at your institution.  The commitment you have to providing a breastfeeding friendly environment is a testament to your dedication to children's health and well being.

My son is currently 25 months old.  In most places, including some medical institutions, this is considered too old for breastfeeding. Despite the numerous documented physical and psychological benefits of what, in this country, is called extended breastfeeding.  Your hospitals commitment to providing an open, breastfeeding friendly environment for all children, regardless of age, puts you a cut above many other locations.

I also noted the easy access to pumps and the staff willingness to find any equipment I needed for pumping both while we were waiting both during his operation and while we were inpatient.  Additionally, I love that you use Medela bottles for storing the breast milk instead of containers supplied by a formula company.

I had several opportunities to interact with the lactation support staff prior to my son's hospital stay.  I consistently found them to be helpful, supportive and encouraging.  Their depth of knowledge and dedication to helping lactating moms is a credit to your entire institution.

Overall, I look back on my breastfeeding experience at Boston Children's hospital with pleasure and gratitude.  There are a lot of horror stories out there for breastfeeding moms, especially those of us who choose to continue to breastfeed for longer than the American societal standard.  Thank you for taking the time to education care providers and families on the value of breastfeeding.  Your organization's dedication to breastfeeding is clear in everything you do.

Thank you,
TheMom

Day 17 Post Op

Well, sorry for not updating, I thought it had been weeks since surgery.  I went back to calculate how long C has had to gain weight and realized that last Thursday was just 2 weeks post op.  It has been a crazy whirlwind.  I had no idea he'd be so active so quickly.  We are still having some issues with sleep and routine after having everything tossed in the air and mixed up in the hospital.

We were giving C a dose of ibuprofen before bed, we tried a night without it and it seems we aren't quite there yet.

The big news is that C has gained almost 1 lb in the 2 weeks since surgery.  He eats more than he used to and his body is working less.  It is already paying off.  We may even hit the growth charts again soon!

Day 4 post op

We had a pretty uneventful day. Early morning was active with an ekg, xray, and blood work. C's blood pressure is leveling out. We need to do one more sedated echo, and Tuesday or Wednesday, which means more time without food.

We continue to wait to see if his heart rhythm will even out. Our cardiologist isn't overly concerned, which is reassuring.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Clarity Found... Or at least a direction decided

It has been 4 days since C's Birthday, 3 days since they scheduled his surgery and 2 days since our family birthday party for him.  I wanted to get past his birthday before I talked about where we are heading.

Boston is very confident that they will be able to repair C's mitral valve.  CHOP has agreed that a mitral valve repair is the logical course of action given his frequent respiratory infections and Failure to Thrive.

Scheduling called on Friday and asked when we would like to schedule surgery.  I was offered August 27th or September 26th.  I really wanted 2 weeks of isolation before surgery plus I thought we'd need more time to get everything together so I opted for September 26th.  We'll head to Boston over the preceding weekend, have pre-op on the 24th and surgery on the 26th.

I think I'm more stressed this time than last time.  Or at least, the numbing haze of exhaustion I was living within last time is no longer here to make everything fuzzy and remote.  Morbid thoughts ambush me fairly frequently and I find my fear hard to contain.

On a practical front I believe I've squared away transportation to Boston and lodging from the 22nd through the 27th.  I have started on a list of things to bring with me and stubbed out several more topics over on CHD Knowledge.  I am going to try to cope with this round of surgery by posting on the blogs rather than retail therapy or obsessive researching.  We'll see how that goes.

We've got a couple of little things to deal with in the very near future.  My current focuses are head phones and bandaids.

1. C hates things on his head:  We're going to have to get him to where he can wear noise cancelling head phones or something.  He's going to be on a very loud plane.  We'll be working on that.
2. C hates bandaids and stickers: These cause him to lose it entirely.  I suspect some bandaids will be in his future, so we will have to work to desensitize him.

Just over 6 weeks until surgery and 4 weeks until we stop going to preschool and become hermits.

The theme for this time period will be: Losing. My. Mind.

Maybe asking for a third opinion will provide clarity...

I spent some time Wednesday talking to both our cardiologist, the surgeon from Boston and the coordinator for consultations at CHOP.  We're going to do another echo in 5 weeks.  After our cardiologist looks at that we'll talk some more about what options we have available.  We'll also be sending that echo to Boston and CHOP so they can give us an opinion based on some clearer pictures.

This isn't like last time where we reached the stage where it was better to do surgery than to wait.  Right now it would be surgery before he needs it.  And as our cardiologist pointed out, before he needs it means he's not as sick, but ideally it would be right before he needs it.  Unfortunately there is no way to tell when he's going to get sick so we can schedule surgery before it happens.  The conventional wisdom in these situations is not to operate on a healthy kid.  My understanding is Boston is a bit more aggressive than that.  They see something they can fix and they want to do so.  It makes sense.  But my thoughts are more about the future.

What if he's stable and we can wait five-ten years?  What kind of surgical techniques will they have perfected by then?  Will they be able to clip the leaflets together in a transcatheter procedure?  Will they have better methods for OHS?  What if they get in there and find that they can't actually improve the valve function?  Do they just close up and we've risked his life for no gain?  Do we go ahead and replace the valve then?  Valve replacement guarantees we'll be on blood thinners and starts the clock for future valve surgeries.  These prosthetic valves wear out and have to be replaced again and again.  On the other hand, what if his valve is becoming more and more damaged as we wait?  What if doing the surgery now means he'll never have to have a surgery again?  There's no way to know.

I talked through some of the risks with our cardiologist on Wednesday.  I asked him about C's left side heart enlargement.  I thought it was caused by heart strain, but rather it is caused by blood volume.  Essentially, the heart grows as blood volume puts pressure on it forcing it to grow. His heart pushes a higher volume of blood on his left side, so the heart has grown to accommodate that.  Conventional wisdom has stated that kids don't need to worry about that enlargement until it nears the size their heart will be as an adult.  Once that size is reached, you don't want the heart to grow further so you should step in.  We're not there yet.

There haven't been many (if any) long term studies on mitral valve repairs for kids in C's situation.  There's no guarantee that doing this repair won't cause the valve to stop growing and then we'll be dealing with mitral valve stenosis instead.

I'm glad we get to delay all this for 5 more weeks so we can get a better idea of where we can go from here.  I'm not ready to face all this yet.

If you can think of any questions I should ask the cardiologists when we see/talk to them again in July, please drop me a note in comments.

To Repair or Wait, that is the question...

Dr. Baird (Boston) called with his opinion on my son's mitral valve regurgitation tonight.  He said the echo I sent didn't have pictures as clear as he'd like to see and it didn't have all the views he'd like to see, but from what he could see the regurgitation looked to be moderate to severe, not moderate as we'd previously believed.  He felt comfortable saying that there was a 90% chance they could repair the valve, maybe even to the point he'd not need another surgery. 

I asked him to call and speak with our cardiologist.  When my pediatrician talked with my cardiologist last week, he told her that Boston was really aggressive on repairs and they'd probably suggest surgery.  He was right, they did.  I thought I was prepared for them to say surgery now, but I really wasn't.  I can't even put into words what I'm feeling right now.  I just know I don't want a world without C in it.

C's left ventricle is mildly enlarged, his atrium is moderately enlarged. I worry that every day we have the leak is another day of damage to his heart structure.  I wonder if his heart will be able to recover from that damage once we do get a working valve.  

I hate that we're in this position.  I hate trying to make a judgement call whether or not he's better off trying a repair now or waiting 2, 5 or 10 years to see how surgical techniques improve.  If we stay here, we'll wait and it is almost guaranteed that we will have a mechanical valve replacement.  If we go to Boston, there is a 90% chance they can improve or fix the valve right now and maybe for good.  

C's OHS was not uneventful.  He had a Pulmonary Hypertensive Crisis when he came off bypass and they had to put him back on to break it.  We spent 6 days weaning off the vent.  We spent a further 5 days in the PICU with heart bock and JET.  

Now we're thinking of voluntarily going through this again, before we absolutely have to in the hope that it will make him better, but we have no guarantees.  I hate everything about this and I don't want them to take my baby even for a second.  I just want to take him and run and all I've been doing is thinking about the possibility of surgery for 2 hours now.  I really am not ready for this again.  I'm terrified that I'll hand them my baby who knows the alphabet and counting and all kinds of amazing things and I'll get back a baby who can't talk or no baby at all.  I hate this SO MUCH. 

The Saga Continues...

Every time I think we've reached the end of C's medical drama, we add another layer.  C's bout with RSV has left him wheezing with every cold virus.  There is a chance he will end up being diagnosed with asthma.  In the short term we're back on oral steroids for the third time since March.  We've added daily treatments with an inhaled steroid and have a rescue inhaler.  Hopefully we'll get everything under control.  In the mean time, I've been thrown for a loop and am having trouble assimilating these new medications into our routine.

Weight Check - 5/11/2012

After 2 weeks of OT and a concerted effort by C's parents and daycare, C has gained 8.5 oz for a total weight of 22lbs 1.5 oz!  We broke the 22 lbs mark!  I thought we were going to do that back in December, so this has been a long time coming!  Thank goodness for Fig Newtons, they are calorie dense and apparently tempting for C's pallette.  He eats 5-9 each day!  Chipotle continues to be our go to dinner food.  Though teriyaki noodles and spaghetti are coming in a pretty close second.  We still can't do anything with a gel like or thick paste consistency.  Fingers are still heavily preferred over silverware.  Napkins are occasionally used these days.  C's weight gain was accompanied by a .5 increase in height.  All in all, we've had a great 2 weeks.  No illnesses, lots of eating of the foods mentioned above.

Our OT has called in a speech therapist to evaluate C.  He uses a lot of signs, knows his numbers, letters and letter sounds, but apparently isn't talking the way she'd like to see.  They will evaluate him during play period and circle time and decide what they think, if anything, we need to do.

I'm trying to get him in for a hearing test somewhere, they want to confirm he hasn't had any hearing issues from all those annoying ear infections.  I hope not, I'm also still hoping to avoid tubes.

C is 21 months old, still breastfeeds about 4 - 5 times per day and we co-sleep.  We've just started making the switch to cloth diapers.  I feel my parenting style grow crunchier with each passing day.

ER Visit - Respiratory

My Mother-in-Law, who is a respiratory therapist, called us at 1:30am.  They were enjoying an overnight visit with C, but she'd become concerned about his breathing, his respiratory rate was about 38.  At that point, it wasn't bad enough that we needed to meet at the hospital, but it was bad enough that she wanted us to be with him because we knew his baseline better.  C's breathing was noticeably raspy, junky and crackly. He sounded awful.  We dug out his inhaler from his RSV a month ago and gave him a couple puffs.  Over the next half hour, it improved but not by much. I counted his respiratory rate and he was up to 43.  C hadn't slept yet, he was working too hard at breathing.  He was happy, playful and alert, but his respiratory rate was getting higher and higher.

We finally decided to go to the ER.  We broke out the hospital packing list and quickly packed enough to survive being in a small room at 4am with a very alert toddler.  We arrived at 4am and were taken immediately into triage.  His pulseox was 96, respiratory rate in the low 50s.  We were taken to an observation room and offered the opportunity to watch TV, they didn't know what DVD if any was in the player.  I told her not to worry, we'd brought our own.  C's show of choice is signing time and I suspect they don't have that DVD readily available.  This trip marks the first time we've kept C busy in an ER or hospital room by watching TV.  He was way too young on previous trips.  Though it has worked for his echos in the past, so we knew there was a pretty good chance we'd be able to get away with it in this setting as well.

We passed the next 5 hours in the ER.  We'd get a breathing treatment from respiratory and then get checked periodically over the next hour.  My husband attempted to sleep on the bed in the room, I sat in the recliner with C periodically nursing him and rocking him.

The doctor came in one final time just before shift change and told us she was handing us off to the day crew.  If the next breathing treatment didn't improve his lung function enough, she thought we'd be admitted.  Thankfully, the morning doctor was a lot more laid back.  He asked us if we were comfortable with him and stated he thought C was doing fine.  They let us go home at 9am, 15 minutes after C finally fell asleep.  C falling asleep was how I knew he was fine to go home.  As long as he was working to breathe, he wasn't willing to sleep.

We came home after a long exhausting night, we all took turns napping.  C had 5 hours of sleep, my husband had the interrupted sleep at the ER + 2 extra hours and I had 3 hours.  A very long end to our weekend.

A follow up visit with our pediatrician showed his lungs clearing nicely.  We can expect issues like this for the 6 months following his RSV infection.  Thank goodness for Synagis, we'd be in a much worse place without it.

Weight Check - 4/27/2012

First 2 week weight check after switching away from the nutritionist.  I felt like C ate really well this week.  But we didn't see any weight gain at all.  21lbs 9 oz - lost 3 oz.  No change in height.

Today wass our first OT appointment for this round of FTT.  I think a lot of our issues revolve around how often C got sick over the winter.  But he is hard to feed and does seem to use eating to assert some control over his life.

Our OT is awesome.  She gave us some great strategies both for returning control over eating to him without making his option to accept or reject what we offer and distracting him from the fact that he is eating by getting him to focus on the fact that he's eating.  Weird right *grin* Instead of asking him to eat, we ask him what it SOUNDS like when he eats.  What it LOOKS like when the food is in our mouths, how the colors mix etc.  We always offer him bites of two different foods, which gives him the opportunity to choose which food he wants instead of deciding whether or not he wants food at all.

Hopefully these strategies and a good healthy period will help us get some weight gain.

First Nutrition Consultation

Last month, GI referred us to nutrition because C hasn't been gaining.  Today, we had the long awaited appointment with the nutritionist.  We were eager to explain what we've been trying and to get some new insight and ideas.

Unfortunately, the dietician we are working with has the personality of a rock.  She took FOREVER to get a length on him because he struggled and panicked.  She didn't even try to calm him down while he screamed she just pulled harder trying to get him to straighten his legs. She didn't react to any of my attempts at humor nor listened when I tried to tell her details I thought were both relevant and important.  This is our first experience with someone who didn't want to know or care what he'd been through.  She treated me like he and I were irrelevant to the caloric formula she was working with.

I tried to tell her about the number of times he's been sick over the winter, which is when the failure to thrive recurred.  She said anything that occurred before was irrelevant.  Refused to listen to me when I tried to tell her he was sick this week and ignored the fact that the month he wasn't sick he gained 12 ounces.  She wouldn't even entertain the idea of listening to me explain what has happened as far as his illnesses and eating over the last 6 months.

Here's the main thing I wanted her to hear: from 2/29 - 3/30 we recorded a 340 gram weight gain.  But from 3/14 - 4/12 we recorded a 30 gram weight gain.  He was getting over RSV on 2/29 and was healthy from 2/29 all the way through 3/30.  However, he wasn't healthy for the 3/14 - 4/12 time period, specifically 4/6-4/12.

Last Friday (4/6) He spiked a fever of 103.9, it was at first thought to be an ear infection, so they prescribed Augmentin (which messes with his eating).  On Saturday night he screamed all night long and wouldn't nurse or drink anything beyond a few sips of water, his throat was VERY sore.  We took him back to the doctor on Sunday (after hours clinic) and they diagnosed a virus causing stomatitis in the form of sores covering the back of his throat.  His ears were clear then.  He didn't eat that day, but finally started nursing again Sunday afternoon.   On Tuesday I called my PCP and she agreed we could stop the Augmentin because it was probably the fever that caused his ears to be red.   He ate the bare minimum for the last 6 days (mostly goldfish crackers and water) which I think explains the weight issue we're seeing at this weigh in.  He's continued to have a fever off and on throughout the week.  Wednesday and tonight (Thursday) he's had a fever around 102-103 degrees.  He completely refused to eat lunch or dinner today.  He had a biscuit (no butter) for breakfast, 13 goldfish for lunch, crackers with cream cheese for snack and the daycare convinced him to drink some heavy whipping cream.

This week is only a sample.  The entire winter was like this!  She wouldn't let me talk about that.  She told me I had to get him to drink 20 ounces of fortified whole milk a day (either pediasure, boost or carnation instant breakfast) in addition to .  I tried to explain he hates that stuff and would rather not drink.  She said no water, fortified milk only and to just keep trying until he takes it.  He shudders and whips his head away when he tastes it.  He's begging me for water.  This can't be the right answer.  She wouldn't listen to any of my concerns.  She just kept talking about whipping cream, half and half and butter.

He doesn't like sweet or rich foods generally, he prefers savory foods and veggies.  I was hoping for ideas on how to transition him to being able to eat richer foods.  She just kept saying to only offer those foods.  She wouldn't listen when I tried to tell her he quit eating the last time we tried to "strong arm" him into eating what we wanted.  She wouldn't even really listen as I tried to talk to her about our past eating struggles.  She did tell me that I needed to not express anxiety about him eating because the fact that I'm worried about his calorie count may prevent him from eating.

She refused to look at his recorded food diary.  She said it was too much detail and she just wanted to know what he ate yesterday.  I was trying to show her the difference between healthy eating and sick eating.  She wouldn't even look at it.  I found the whole experience anxiety inducing and not helpful.  We went on a whirlwind shopping trip after we were done and picked up butter, cream cheese, heavy whipping cream and crackers.   He has a new supply at home and day care.

If her goal was to stress me out she succeeded.

Confirmed - RSV

C had a cough that started sounding pretty junky.  I ended up taking him in to the pediatrician on 5/28.  They gave us a breathing treatment and a prescription for an inhaler.  After a couple of treatments with the inhaler, his respiratory rate ended up in the 50s.  The pediatrician directed us to take him in to the ER to be checked for RSV.

At first the doctor at the ER seemed to imply we were paranoid due to C's past health issues.  Then, once the tests were in and RSV was confirmed, they seemed to be a lot more understanding.  The doctor thought he might see a bit of pneumonia, but the radiologist said we were fine.

We're home on steroids and an inhaler. C will get his last RSV shot of this season tomorrow on our 1st (4th technically) wedding anniversary.

GI Follow Up Results

We have a fantastic GI Doc. She has a tiny picky eater herself, so she understands and gives more leeway when we have a bad month or three.  So, she didn't immediately jump to tests and huge medical interventions.  But the bad news is C lost 1/2 a pound over the last three months and he didn't grow at all.  We're going to really push calories and hope that we get more than 4 weeks between GI disturbances.  C had at least 4 weeks where he didn't eat over the last 3 months and another 2-3 weeks where his appetite was at least half due to upper respiratory infections.  Those illnesses and his increased mobility really explain why he plateaued for the winter.  We're hunting for high fat, high calorie foods he will eat. We're going to stick butter and oil in everything we can.  We're looking for any good calorie dense recipes that a picky toddler who prefers lots of flavor will enjoy.  Please let me know if you have any.

We're currently focusing on this calorie dense food list:

• Healthy fats- avocado, coconut oil, coconut milk, olive oil, flaxseed oil, sunflower seeds, pumpkin seeds, flaxseed, walnuts- not peanut butter!!
• Meats-Salmon, bison, grass fed beef, halibut, Mahi mahi, tuna, lean ground Turkey, chicken, pork(sparingly, deli meat( no nitrates or preservatives) Turkey Bacon, Turkey sausage(uncured)
• Complex Carbs- oatmeal, quinoa, brown rice, grits, sweet potato- wheat products sparingly.
• Simple carbs- banana, apple, all berries, dried fruit, honey, not juice because alot of the nutrients are taken out.

GI Follow Up Tomorrow

C has his 3 month GI follow up tomorrow.  I'm nervous.  Recently, our pediatrician has expressed concern about C's weight gain.  In the three weeks between the time the pediatrican told us she was worried and this GI appointment C has had an upper respiratory infection, double pink eye, double ear infection and a stomach bug.

We were trying to wean off of Zantac over the last three months, but this month we went all the way back to where we started before we began weaning down.  We were so close to done, but there is no good way to tell whether or not C's reflux was coming back.  After the GI bug we couldn't get him to stop vomiting and he was restless, so I decided to kick the Zantac back up to the original dose.  I want to keep him off of as many chemicals as possible, but he's got to be able to eat and all I can do is guess.

At this point you can see C's ribs and a hint of his hip bones.  I'm really worried about what our GI doc will say tomorrow.  The poor kid just keeps getting sick.  The average child in daycare gets sick every 6 weeks or so.  C's appetite drops every time he gets sick and he's sick for 10 days each time.  So basically he eats well 4 of every 6 weeks.  We'll see how bad it is tomorrow, I'm worried, I don't want to have to do more things that remind me C's still sick.  I try hard to maintain awareness of his overall health without focusing on the fact that he's technically got a chronic illness that will never go away.  His caloric needs are slightly higher than the average child's because of his regurge.  But he doesn't really like to eat huge quantities of food on a good day.  It is a quandry.

On a side note, C brought home a "boo boo" note from school yesterday.  The note read "C was bit on the nose by a friend".  TheMan and I can't help but laugh... it is funny!  Apparently he was flopping around on the ground at circle time instead of sitting up and paying attention and one of the other toddlers in his class leaned over and bit him.  It wasn't hard enough to draw blood, but he does still have red marks on his nose 2 days later.  What are you going to do?  Toddlers just do this stuff to each other, you can't prevent it all.  He's not upset about it, so I choose to laugh at it.  With friends like that, they must be toddlers...