Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Friday, September 30, 2011

Day 18 - 8:50 pm - a great day!

Trey had a fantastic day today!  David came to the hospital with me and when we got there Trey's Occupational Therapist was working with him.  Since he's just a baby, occupational and physical therapy are very similar.  They both work with helping him strengthen his neck and chest muscles.  His therapist today had him sitting up and he loved it!  He was all smiles when we came in the room.  She had him holding some toys and tried to get him to explore them with his mouth.  Afterwards, Trey took a nap and David and I went to lunch down the street at a restaurant called Sweetwater Tavern that all of the nurses rave about.  I had their famous Pulled Pork Sandwich with Sweet Potato Fries and David had their Salmon.  I also just had to try their Flourless Chocolate Waffle with Vanilla Ice Cream.  YUM!

After lunch we headed over to the Inova blood bank.  Since Trey was on ECMO, he was given a large amount of blood from the blood bank so that the blood would fill up the ECMO tubes and his body.  In result, the blood in his body right now is most likely not his.  Unfortunately, the banked blood is older blood and red blood cells have a lifespan of about 120 days.  Our bodies are constantly making new red blood cells to replace the older ones but babies Trey's age don't make them as fast as you and I.  Right now, he is bordering on anemia (meaning, the red blood cell count in his blood right now is on the low side) and instead of giving him more old blood Dr. Keller suggested direct donor blood.  My blood type is A+ and Trey is O+, our blood types are not compatible.  So the hope is that David has the same blood type as Trey so he donated 1 pint of blood at the hospital's off site blood bank.  Just in case David has a blood type that isn't compatible, my mother in law is going to donate tomorrow because she definitely knows she is O+.  It takes 3 days for the blood to process and then if needed, he'll receive a transfusion of fresh red blood cells.

When we returned to the hospital we were able to hold him.  We spent the entire afternoon holding him.  First me, and then David got to hold him for the first time.  Trey was thrilled!  He just kept looking up at Daddy and smiling.  He really couldn't get enough of him and it was super sweet.  I think he missed his Daddy this week.

Trey celebrating his increased Ejection Fraction!

Trey flirting with his nurse crush, Hannah 


His nurses sending Trey some Baby Power!

I want to thank you all again for your continued prayers and support.  While I'm having a hard time responding to everyone I want to tell you that I appreciate every single comment left on here and my personal facebook page.  Whenever I read something you all have written, it makes my heart soar.  It really does.  The amount of support and awe of how strong you think I am makes me want to just cry at times out of happiness.  I have to admit that I don't feel very strong throughout this - I know I've done ok and kept it together - but I feel as though I've been spread so thin that I'm having a hard time being patient with each of my children.  I don't want any of them to feel neglected at all but I also don't want to get upset with any of them because we're all tense right now.

I also want to thank those that have sent in Baby Power pictures.  Please keep sending them in!  I'm not going to put the video together until this ordeal is over and I feel as though I can pack the experience into a picture montage.  When Trey is older I want him to be able to visually look back and see all of the support he received.  I want him to see the pictures of the people that were praying and raising him up.  Feel free to make your own sign.  Even if we don't know you personally - send in a picture so that Trey knows you thought of him.  We haven't received that many but I know there are tons of you out there.  Click here for the post that explains Baby Power.  The pictures can be sent to treyheart@gmail.com.  Thank you!

Thursday, September 29, 2011

Day 17 - 11:30 pm

I'm worn out.  I'll admit it - life is getting frustrating.  It's just that things keep piling on.  I don't even know if having Trey at home instead of the hospital right now would make it much easier.  It's almost a nice "get away" right now if that makes any sense. The washing machine stinks.  Yes, we have one of those front loaders.  I hate it.  It's so much work.  I dry out the rubber gasket every time, I dump the water out of the detergent drawer and we empty out the filter down below religiously.  Yet, it is now stinking.  I even bought Smelly Washer Cleaner and Smelly Towel Cleaner and yet, it still stinks!  I hate that not only do I have a ton of laundry to do... but by the time I'm done, the clothes don't even smell clean!  I don't have the time to troubleshoot my washer.  Plus... the cycle is an hour long cycle.  So one load of laundry takes almost 2 hours to wash and dry.  That's a long time!

Then, I come home tonight and the fridge is making an awful noise.  We don't have the time to go looking for one right now... and if it goes while T is in the PICU, I guarentee you... I will lose it.  I can handle a fridge on it's last leg... I just can't handle a broken one right now!

The basement is not getting painted and finished before Thanksgiving now and who knows what will happen with the backyard (the grading is totally off right now and when it rains we get a pond... seriously, it's so bad that when I was pregnant with Trey I had dreams that we had sharks and alligators living in the backyard eating the local dogs - really, my dreamworld can be way interesting!).  Even if T was home right now, gosh... doing all of this and 3 boys just seems so overwhelming at times.

Ok, with getting all of that off of my chest... I realize that I need sleep.  When I'm tired I just start thinking of everything that needs to be done.  What I should do is just GO to sleep!  Off to do that now....

Update (11:48 pm) - see, I also then realized the dishwasher keeps getting some mold in it - so we probably need a new one of those too.  Yes, mold.  Can we all say a collective... ewwww!  Yes, disgusting.  But see, if we get new kitchen appliances we should get all new ones to match.  But, if we have new appliances... we really should get decent counter tops to so that we get the right appliances to fit with them.  If we get new countertops, I really should look into getting the cabinets refinished.  See how that snowballs?!  But not only do we not have the time to do all of that, I don't have kids that shop (at all... really, it's a nightmare to take them to a store!).  So for right now we'll be living with stinky laundry, a loud fridge and a dishwasher that is just plain nasty at times.

Ok - see what I mean?!  My mind just goes on and on and on... ugh, oh yeah, wait... I totally forgot about the termite damage that we have (all cosmetic) to fix.  The holes they have created have now just turned into decoration.  Ok - for those who all know me, there will soon be a spreadsheet to keep track of all of this....


Update (next day) - I kept going back and forth about keeping this post up or not.  I decided to leave it up so I can look back on this all and remember what we were going through and how my mind was thinking about things.  Although - it does kind of make it sounds as though we're living in a dirt hole - our house is really not that bad.  I'm just really, really picky about thing.  The mold in the dishwasher was because we didn't run it in a few days while I was in the hospital and it was just a few little spots.  I clorax wiped it down and it's fine.  Just the thought of mold in my dishwasher really grosses me out though.

I also thought to keep it up so you can see that I'm not holding things completely together!  Thank you so much still for the prayers for Trey and my family.

Day 17 - 4:30 pm - Weaning....

So today Trey had his Fentanyl, which was used as both a sedative and pain reliever, drip turned off today.  They're attempting to try to wean him off of the sedative medications again, this time just doing one at a time rather than both the Fentanyl and the Versed at the same time.  Fentanyl is 100 times more potent than Morphine but effects don't last as long.  So they have taken him off Fentanyl and increased the Morphine he is taking.  The Morphine goes in through his feeding tube, straight to the belly.  The hope is that in a few days they can transition all of his medications to oral usage.  Once it seems as though he is comfortable off of the Fentanyl for a few more hours, they will start turning the Versed down again.  He is also receiving Methadone, via the feeding tube, to help with any withdrawal.  Not only does Methadone help with the withdrawal, it also does help with pain management and also stays in the system for longer periods of time than the other medications.

Sometime overnight Trey got his own little gown.  It's quite adorable!!  He also seems to really enjoy looking at the mobile that Child Life lent him.  He was really watching it intently this morning.

He had another echocardiogram this morning and the cardiologist came in to give us the results.  He said that his heart looks a tiny bit stronger on the echo, which is a great sign!  His ejection fraction went from 23% (4 days ago) to 30%!  Again, that's the percentage of blood that is being pumped out of his heart with every pump.  You don't want that number to be above 80% and "normal" is anywhere between 60% and 70%.  The cardiologist also mentioned that his EKG right now reads similar to an EKG of someone that had a heart attack.  Poor kiddo - he has an EKG that could be mixed up with an older man that had a heart attack! 

Also, I mentioned the other day his BNP number was 1568 (anything over 100 is a sign of heart failure) but what I failed to realize that when he was admitted on September 12, this number was 3000!  So this number has had a significant drop!  The cardiologist said today that he expects Trey to go home on about 4 different kinds of heart medications but he thinks that by the time Trey is 3 he will most likely be off all of those medications.  So, while the beginning of this journey has been really scary, after a few years this fix may cause him to have a complete recovery, which is great news.  

My mother came to the hospital with me today to hang out with Trey for the day.  We both got to hold him, which was really nice.  He stayed awake for most of the afternoon, which is good - he kicked his feet and moved his arms while he was awake so that's great exercise for his heart!

Trey and me

Trey and my Mom

Oh... and other important news... Hannah was Trey's nurse today!  It was so great to share such great milestones with her today... 30% echo and a poop with no blood in it!  I forgot to mention that too... Trey started having poops again yesterday, which is great (especially for him!).  He did have a diaper that tested positive for blood yesterday, which isn't too surprising considering he most likely had some damage in his intestines... but today all of his diapers tested negative, which is a good sign!  They're planning on starting feeds on Monday and as long as everything goes smoothly, we're looking to be discharged in about 2 weeks from now (that's if everything goes according to plan though... which, you know... doesn't always happen!).

Wednesday, September 28, 2011

Day 16 - 5:00 pm

Well, about an hour and 15 minutes ago Trey woke out of his sleep with a shriek and then started crying.  It was definitely not a "normal" cry at first - it was more like a cry out or shriek.  It was scary sounding enough that I went out to get the nurse.  Although, unlike the other night, we were able to calm him down pretty quickly.  The doctor came over and ordered a EKG just to be on the safe side.  They also gave him some morphine, for any pain he might have, and some versed, to calm him down and to help with any withdrawal effects.

Trey getting his EKG

The EKG looked a little different than the one he got yesterday (they did one to look at his PVC's) so they paged Dr. Kirby, the cardiologist on call this week, to take a look at it.  Dr. Kirby didn't find it too concerning but they are now doing another triponin test to see if there is any more damage to the heart.  Triponins are special proteins that are found in muscles and the heart has specific ones.  If there has been damage done to the heart, for example a heart attack, this protein leaks from the cells of the heart and can be found in the bloodstream.  They had done a triponin test on him before and the level was 0.7 and today's test came back 0.9.  This is a slight increase but not enough to be significant at all.  The numbers are extremely low so he most likely did not suffer any kind of heart episode this afternoon.  Whew.  His scream definitely worried me.  Dr. Keller also mentioned that he might have heard a slight murmur that he hadn't heard before.  Dr. Vish, the attending on call tonight, explained that sometimes after surgery, the pericardium (outside covering of the heart) can become a little inflamed and this can mimic the sound of a murmur.  They are going to order an echocardiogram for tomorrow to take a look at everything as a precaution though.  He hasn't had one for 3 days now so it doesn't hurt to get one down.

This afternoon had been a little more alert so the Child Life department brought him a mobile for him to look at and enjoy.  He seems to like to look at it and listen to the music.  

This has definitely been one roller coaster ride.  Again, like the other night, I was just getting ready to leave the hospital and this happened.  My mother is coming to spend the night tonight and I thought it would be nice to get home and have dinner with David, the boys and her.  Yeah, apparently Trey just didn't want me to leave!  What a way to keep me here.  Plus, when something happens, it makes time go SO fast.  It's now almost 6 and I feel as though he woke up with his shriek just 5 minutes ago, but was 2 hours ago!  While everything seems back on track right now I'm afraid to leave the room!  Plus, even if I was going to leave now, it's rush hour and the traffic is going to be horrible!  Decisions... decisions... 

Day 16 - 2:15 pm - Some Smiles

I am SO tired today.  We woke up to thunderstorms this morning.  After getting the 2 boys dressed and fed, I drove the oldest down to the bus stop and the middle one to my in laws for the day.  Of course, since it was raining and no one around here knows how to drive anymore when it rains, it took about an hour and a half to get to the hospital.  Thank goodness the blue lot was open today.  The blue lot is the parking garage that is closest to the Inove Children's Hospital.  Yesterday it was full and I had to park in the grey garage, which felt like a mile away from Trey!  It was quite the hike.

Trey has been doing well today so far.  The PVC's have stopped and he has been more awake  Yesterday he had some physical therapy and today the occupational therapist stopped by to work with him.  I even got a few smiles from him this morning!

Trey giving the camera a tiny smile.  He was all smiles when I first walked in but the second I grabbed the camera they pretty much all disappeared!

Hannah is back working today but unfortunately, she is not our nurse.  We were pretty bummed about that but we've had Peggy today and she's been taking good care of Trey.  Actually... Hannah just stepped in to talk with us and she's so impressed with how great Trey looks.  He really does look amazing today - such a change overnight.  He's all bundled up and if he didn't have the oxygen in his nose and central line in his neck - he'd look like he was just chilling at home.  You'd never know that he just had major heart surgery and is in heart failure!

Last night, after leaving the hospital, I stopped off at Chevy's Mexican Restaurant for a Tenderhearts Moms Night Out.  Tenderhearts (click here) is a non-profit group that is part of Inova Health System Foundation and supports families that have children with congenital heart defects.  It was so nice to get out and also to meet other moms that have gone through heart surgeries and hospital stays.  The group also sponsored a "bagel break" in the PICU waiting room this morning and I got to meet another heart mom.  It's amazing how there is just a whole different group of women that I never in a million years ever dreamed I'd be congregating with.  I never realized that I would be discussing my childs ejection fraction with another mom... heck, I had never heard the term ejection fraction before this!  I'm really amazed at the support system these women have set up.

Oh yes, one test that I didn't mention yesterday was his BNP or Brain Natriuretic Peptide anazlysis.  BNP is an amino acid polypeptide secreted by the ventricle of the heart in response to excessive stretching of the heart muscle cells.  Basically, it measures heart failure.  The normal rates of BNP (granted, there is no standardized "normals" but a range of normals based on age and gender but for ease of understanding I'm going to use the entire range) are 4 to 100.  Over 100 indicates heart failure.  Trey's level yesterday was 1568 pg/ml (picograms per mililiter).  Granted, we already knew that Trey was in heart failure so it's not surprising that his levels are so high but this now gives him a baseline.  I assume that as his heart gets better they can determine his level of heart failure if this number goes down.

Today is day 2 of the day 7 waiting period for Trey's feeds.  So basically, today we are just chilaxing in his room.  He seems to be weaning off of his drugs better right now and seems so much more comfortable.

Tuesday, September 27, 2011

Day 15 - 5:00 pm - KO for the count!

This is how Trey has looked since he got his medicine last night...

Sleepy Baby!  Trey has not woken up since they knocked him out last night!  The nurse turned off his sedation drips about an hour ago to try to get him to stir some and when he wakes up they will turn them back on again slowly so that he doesn't have a bad withdrawal from them.

He has been having PVC's (premature ventricular contractions or early heartbeats) for most of the day.  Apparently they started overnight but became more of a trend around noon.  They did an EKG on him (which he slept through!) and the doctors don't seem too worried about it.  It's just something that they are going to keep on eye on and see if it gets any worse.  The internet is a great thing but sometimes you learn WAY too much!  I researched PVC's on Google and noticed that a cause can be a prolapse of the Mitral Valve.  This sounded familiar and I remembered Dr. Shen mentioning something about Trey's Mitral Valve and that sometimes with this condition they have to be replaced.  The Mitral Valve is the valve between the left atrium and left ventrical of the heart.  By the way, the left side of the heart (especially the ventrical) is the side of the heart that pumps oxginated blood througout your entire body.  Anyhow, I bounced the Mitral Valve prolapse off of Dr. Collazo and he said that while Trey's valve showed to be a little leaky, overall it was working ok.  He then mentioned that PVC's can be very common in a heart that is recovering from surgery.  It didn't seem surprising to him that Trey was having some.  So basically, now it is something they are aware of but not too worried about.  

My dad came up to visit today and we went to lunch in the cafeteria.  The food here is actually not too bad. They supply 2 parent trays free of charge and all you have to do is call to order your food.  They then deliver it to your room within 45 minutes.  Not bad!  So far I've enjoyed their pizza, beef tacos, chicken fajita burritos, chicken alfredo and oriental chicken salad. They also have incredible chocolate cake, churros with vanilla ice cream and baklava.  They also have amazing smoothies in the cafeteria!  I know, I'm odd.  I actually enjoy hospital food... airline food too!  I think it's because it's just served to you.  No cooking, no serving and it's different all the time!

Well, Trey is about ready to get his 2 month vaccinations (we got behind with all of his hospital stays and such).  Poor kid needs 4 of them. Seriously... this poor child!  How many more times can we poke and cut him?!

Oh yeah - and I forgot to mention... he had 2 surprise visitors yesterday.  Hannah and one of his first nurses, Savannah, came to visit us.  It was nice to talk to them and they got to see Trey without tape all over his face for the first time!

Monday, September 26, 2011

Day 14 - Midnight

I got home really late tonight.  It was an interesting day.  Since he had his arterial line out I was able to hold him!  This was very exciting.  I hadn't held him in exactly 2 weeks.  Can you believe that??  It's been TWO weeks since we found out about his ALCAPA.  Insane.  I feel like I've been living in the PICU for awhile now but at the same time I feel like his surgery was just the other day.  As I held him I couldn't help but think about how far we've come in the past two weeks.  He slept so soundly the entire time I held him.  It was so incredibly nice.

Holding Trey for the 1st time in 2 weeks!

He still came with a lot of tubes and wires though! 

Unfortunately, he started crying as soon as we got him situated back into his crib.  The nurse and I couldn't get him settled and he didn't respond to the medications Holly, his nurse, was giving him.  Dr. Stotz was the attending on call and he came over and started pushing in small amounts of versed and fentynal every 2 minutes until he finally calmed down.  They think that he might have had some withdrawal still and it hit him all at once fast.  Giving him small amounts of those medications leveled his withdrawal out so that he could be comfortable but we're back to weaning slowly, while also using methadone and morphine.  Now tonight they just have to keep a watch on his breathing because these drugs can also slow your breathing down too much.

Poor kid - sucks that he's been alive for so short of a time and has already has had to experience more than many of us have in many years.  Heart failure, major heart surgery, heart lung bypass, being on a vent and now drug withdrawal.  Ugh.

Day 14 - 3:00 pm - New Central Line

My heart and stomach can only take so much!  I spent some time with Cole this morning so I didn't leave for the hospital until around 12:30 pm today.  On my way into the hospital I received a phone call and I realized it was the hospital.  Tons of things flew through my mind as I prepared to answer the phone.  I was scared to death to hear the news on the other side of the phone.  It was one of the Intensivists from the hospital... Trey's fine, she said, but Dr. Keller wants to talk to you.  Again... he started off with, Trey's fine but... ok, I'm waiting for the other shoe to drop... we'd like to put in another central line.  Trey has had his 1st central line in for about 2 weeks now and apparently the longer you keep it in, the better the chance for infection.  So they wanted to remove the 1st line and put in another line.  Whew... I can handle that!  I gave the approval and by the time I got to the hospital (about 35 minutes later) the procedure was done and his new central line was in.
Location of Original Central Line

Location of new Central Line

They gave him a sedative in order to put the central line in so he's been pretty groggy today since I've been here.  They are keeping the original central line in until they can get all of his medications and nutrition moved over to the new line.  They can't do that until they receive the new nutrition drip tonight from the pharmacy.  They then removed his arterial line that was in his foot and the IV that was in his left arm.  The arterial line was used to monitor his blood pressure constantly but since his pressures have been ok they took it out and are just going to use a cuff to measure it at intervals of the day.  

A few days ago the radiologists found pneumatosis in the bowel, which refers to gas bubbles found in the walls of the bowel in an x-ray, and can be signs of damage to the bowels.  At that time they had begun feeding him through a feeding tube but once the pneumatosis was seen all feeds were stopped.  They then started a series of x-rays over the next few days to see if it would resolve on its own or if it was actual damage that might be getting worse.  Today they concluded that it had resolved and therefore we can start a 7 day waiting resting period until we can resume feeds.  After 7 days they are going to attempt feeds through the feeding tube again and keep a watch on the bowels.  

They just came in to move some of his fluids to the new central line and in order to do this the nurse and Trey had to wear a mask.  It was way too cute not to take a picture!

Things for the family have been going ok. We had a nice weekend together and I think the boys really enjoyed playing with their friends and going to Park Quest.  Friday night I had an awful nightmare that actually woke me up from my sleep.  Looking back on it now it was pretty funny but at the time I was petrified.  I was being chased by a huge brown bear and somehow it car jacked me (um, really??!) and as we slowed down at a stop light (and how would a bear even know to slow down for a red light, let alone drive?!) I jumped out of the car (because well, it takes a while for a bear to get out of a car, they're big ya know) and jumped into someone else's car.  That person drove me to some type of hospital and the bear followed us into the building.  It chased me all around and I hid in different rooms.  I couldn't get rid of this bear and it finally caught up with me in a closet I was hiding in.  It stood on it's hind legs and flanged out its lips, like bears do, and then bam... I woke up in a panic.  I'm pretty sure the entire dream was brought on by what we've been going through these past few weeks.  But really, a bear??! :-)

Sunday, September 25, 2011

Day 13 - 11:30 pm

Kelly and I got to go up and see Trey this evening after our family visit.  He seemed to be doing better than yesterday.  He was a lot more content for most of the visit.  There was one time where his brow really got scrunched up and so they gave him some medicine and another time when he got really upset and distraught.  That was hard to watch. 

Apparently he had another echocardiogram today and his ejection fraction was about the same as the other day.  Not too alarming though since it's only been about two days since the last one.  I wouldn't really expect too much of a change.  The recovery of his heart is going to take awhile - about a year or so at least. 

While I got some great sleep last night (12 hours!), we've had a really busy weekend and I'm really tired right now.  Time for bed! 

Trey and I
(the pics are a big grainy because I didn't want to startle Trey with the flash)

Kelly and Trey

Day 13 - 12 pm - Chest Tubes Out

Yesterday Trey was extubated successfully!  Hubby, me and the 2 other kiddos went to Park Quest (didn't win a grand prize... bummer) and had a good time.  I was nervous the entire time about not being there for extubation but it was nice to be out with the other boys.  Park Quest was extremely muddy and we were an absolute mess by the end of it but the boys had a great time pretending to fish, pretending to put out fires, letterboxing and playing disc golf.  They also learned all about the "leave no trace" policy of the parks, about horseshoe crabs and about the different insects in Maryland. 

All the grandparents and Aunt Kari went up to visit Trey yesterday so he was definitely not alone.  My parents called to let me know when he was extubated and then they sat with him through a lot of his withdrawal symptoms.

Trey had been on a lot of medication to sedate him so that he wouldn't pull on the ventilator or mess with his open chest.  It's not like they could just tell him not to touch those things and he just... well, wouldn't.  Therefore, he was well sedated.  Plus, he woke up a lot some days and seemed to be in pain so they gave him even more sedation.  Unfortunately, he now has to be weaned off of those medications and he is now going through withdrawal.  They can give him other medications to help him come down, such as methadone, but it's still not going to be a fun time for him.

We did end up driving down to the hospital after Park Quest was over because I was so anxious about not being there.  By the time we got down there he was crying and just not happy.  His cry is really pathetic because of the vent and it's a silent, raspy cry right now... which is really sad sounding!

Trey without his ventilator in - finally, you can see his top lip!!
(it had been all taped up to keep the vent from moving around)

We sat with him for about an hour and a half and then we went to dinner with my parents.  Afterwards, we went home to get the other 2 kids in bed but my parents went back up to the hospital to say goodbye to Trey.  They told me that when they got back up there he was still crying a bit but quickly got a dose of Valium, which helped calm him down a lot and he was able to get some sleep.

Now... onto today so far.  My best friend, Kelly, whom I haven't seen in about 3.5 years is coming to visit today.  Her husband is military and since they left here they've been in Japan, Chicago and now San Diego.  Since she has left we've both gotten pregnant (me twice, her once) and had kids.  We've always either been pregnant or postpartum and flying to visit would have really been difficult.  Well, her brother in law got married yesterday in Virginia so they had to fly back here.  Yay for me!  They're stopping her on their way back to California for a few hours to visit and I am SO excited.  Over the past few years we have spoken to each other pretty much every day and we've endured way more than friends should have had to endure together.  We've definitely been a huge support for each other.  I can't wait to meet her new little kiddo and for her to meet my 2 new ones (I'm taking her to the hospital for a little bit today too).  My oldest was best friends with her oldest (3 weeks apart) for a lot of their childhood and he's excited to see her oldest as well.

On to Trey, I just called up to the hospital and he's been moved into a private room.  Holly, his nurse, let me know that he seems a bit happier and content today.  He had his chest tubes removed (yay.. no more tubes coming out of his body!) this morning.

I can't believe things are going so smoothly.  I keep waiting for him to take his "two steps back."  I keep preparing for things to go wrong.  When they took the ECMO out I really was expecting for him to have to go back on for a bit.  Nope, that wean went smoothly.  When they took the vent out I was expecting for it to have to go back in for a bit longer.  Nope, so far so good.  I keep expecting his echocardiograms to show something alarming but nope.. they are showing "smidges" of improvement.  That's the word that Dr. Callahan uses, smidges.  I'm sure he uses that to inform us that yes, he's improving, but it's very small and the recovery of his heart is going to be a slow process of the next year or so.  But I'm happy with "smidges"!  That's a step in the right direction.

Anyhow, I'll be up to see him a little bit later in the day and I'll write an update tonight of how he is doing.  I'm sure he'll photograph a lot nicer now that he has his drains out too! ;-)

(Gosh, I hate drains... they're so creepy looking to me!)

Saturday, September 24, 2011

Day 12 - 9:45 am - Stressed

I feel a wreck.  Today I'm not going up to the hospital.  This will be the first day ever, since he was born, that I haven't spent with Trey.  Not only that but they are planning on extabating him today and I won't be there.  Instead I'm going to an activity with my other boys.  This summer we participated in something called "Park Quest."  The state of Maryland held fun challenges at 24 of their state parks for families to complete.  If you completed 10 of them your team was invited to the finale.  We did 9 out of the 10 quests while I was still pregnant in May and June.  We completed the last one over labor day weekend and the finale is today.  Bryce has been working towards this with us all summer.  He talked about it all the time.  There is no way that I can miss going to this with him.  But my stomach is a wreck about not going to the hospital.

Please don't get me wrong, I'm really looking forward to spending the day with my two other sons (they are 2 and 7).  I just hate that I'm going to miss such a big day at the hospital.  Trey's grandparents are all going down to visit him today so it's not as though he'll be alone.  It's just ugh...  So big prayers for him today.  That he does ok with extabation (although there is no guarentee it will work - it may be too much on his heart and they will have to intubate again) and also for me so that I can enjoy this day with my two other sons.

Check it out... Park Quest Maryland (click here)

Friday, September 23, 2011

Day 11 - 11:20 am - Big boy bed!

So not only is my baby's chest closed - but he can be moved around!  I came into the PICU today and Trey was in a different, bigger bed.  This means that he can tolerate being moved around more... which is a great thing!  The other day he was just having problems being turned from side to side.  Apparently, he and his vitals were ok with being transferred from one bed to a bigger one... yay!  This morning his vitals are about the same.  His blood pressure looks good and the pressure in his left atrium is a bit up but still lower than when he first came off ECMO.  Nothing near what it was like when they first attempted to take him off heart lung bypass after surgery.

Wow, ok, so his nurse went to lunch and since he's doing better they just have another nurse float in and out rather than having the charge sit here the entire time to watch him.  Well, a few minutes after he left his heart rate went all funky on the monitor and the alarm sounded.  I figured it most likely was a probe that had come a little loose because all of his other vitals were ok but it still scared me a bit so I went out to find someone.  I could only find the resident so she came in to check it out.  Turns out one of the wires to the lead was indeed loose and she just fit it back in.  At Children's if that happened I knew exactly what places to check to get it placed again but now I'm at a loss - for all I know the lead could have been located in his heart and I'm not messing with that!

I also wanted to address something else today... a lot of people have been commenting and telling me how impressed with my strength throughout this total ordeal.  Really, I don't feel all that strong.  It's just something that you do.  I don't have a choice in holding it together through this all - I just have to do it.  I will tell you what has helped me greatly through this though... my faith in God.  I believe that there is something larger than me.  I have a creator and he is not going to abandon me in my time of need.  I truly believe that I am never alone - he is constantly giving me the strength to make it through this.  It's not me, it's God that is holding my head up above the water to keep me from drowning.  Throughout this I have stood strong in my faith that with whatever happened - God would help me through it.  I didn't have a choice in the matter.  Me having a breakdown wasn't going to change the fact that Trey had a heart defect and it had to be fixed.

I also think that going through the NICU experience last time helped me through everything this time.  When we went to the ER the first time I definitely the complete opposite of calm.  That's not to say that I'm completely calm this time around - I might appear to be but there have been many times during this visit that I thought I was going to have to run to the trash can to get sick because my stomach was so crazed - but at the ER the first time I cried and was hyperventilating.  I couldn't even stay in the room because I was so upset and unnerved.  I was so upset that they brought the hospital chaplain to me and asked me if I needed to talk. She was a lifesaver at the time.

See, it's amazing how God places the right people in the right places at the right time.  God knew that I was going to need help many times through this journey.  The chaplain is not always in the hospital - it's amazing that she was there right when I needed her.  She prayed vigilantly outside of his room.  She recited scripture to us to remind us that God was/is with us.  Just like this last time we went into the ER, the first person I saw was a nurse that goes to my church.  It was so incredibly comforting to see her and have her be able to help me out in the hospital.  Plus, we had the same exact ER doctor... made it so much easier for me because he knew exactly what happened last time.  I didn't have to catch a new doctor up to speed.  This doctor kept in touch with Children's as well so I didn't have to explain everything that happened there.  All he asked was... did you see a cardiologist there?  I said no and he was on the phone right away calling one in.  God has truly placed everyone at the right places at the right times - it's too amazing to be just coincidental.

I also want to thank everyone who has been praying for Trey and my family.  We definitely can feel it.  It's through God and through all of your prayers that has given me all of this "strength."  It's definitely not me.  I would have never been able to make it this far alone.

Anyhow, I do think that having gone through an experience one time before helped a bit.  Plus, last time there was more unanswered questions.  This time... yup, he's having problems... oh, and here's why!.. and yes, we have a way to fix it.  Yes, it's still going to be a long journey till his heart is going to become strong again but at least I know, we're not along on this journey.  God is with me, he is with David, he is with my other two kids and most importantly, he is fighting with Trey.

Thursday, September 22, 2011

Day 10 - 2:27 pm - The day of Closing

I woke up this morning and quickly got ready to get to the hospital.  Closing of the chest was scheduled for 9:30 am and I didn't want to miss it!!  We don't live far from the hospital but during rush hour it can take about an hour to an hour and a half.  When there's no traffic at all it can take as little as 25 to 30 minutes.  2 days ago when it rained in the morning it took almost 2 hours to get here and I left home mid-morning!

The thought that Trey was going to be in one piece again was thrilling!  I really think I was just as excited this morning as I was the day he was born.  The suspense of the surgery was killing me!  While you could see that T's swelling had gone down a lot, there was always the possibility he wouldn't tolerate even the small amount of swelling that was still there.

I made it to the hospital at 9:30 exactly and was very happy to find that when I got upstairs the team wasn't ready yet - so I wasn't late. His nurse, Lynn, was in the process of getting his room and Trey ready for the procedure, which was done in his room.

Dr. Collazo and his team came to the room to close him up.  There were a lot less people in the room this time since the ECMO team wasn't in the room as well.  There were also a lot less nurses in the room.  This time they closed the curtain to the room, as opposed to last time when it was just open to the unit.  They allowed me to sit in the hallway and I watched his vitals through a slit in the curtain for most of the time.

Dr. Callahan came over to check up on him and informed me that he was closed and they were just finishing up suturing the skin.  Yay!  They explained that the next day or so they will probably have to tweak some things and medications to keep him stable so he will be watched very closely but things looked good at this time.  For example, as I'm writing this his blood pressure is a bit on the lower side and the doctors/nurses are here tweaking his medicines to get it a bit higher.

I also just had the most interesting conversation with Chelly, the other cardiac physician assistant, about the surgery that Trey has gone through.  The actual surgery was WAY more complicated than I had even realized.  By looking at the pictures, it did seem like an easy fix, but I knew that there were things in the way that the surgeons had to move to get to the coronary artery.  Um, no... apparently things had to be cut through in order to get to the artery and to reattach it.  I will have to explain it in another post.  I'm getting a little overwhelmed with typing a bit right now.  I started this post at 2:27 and it is now 3:50.  I've been having a lot of conversations with doctors and nurses during this time but the laptop has been on my lap the entire time so I feel like I've been typing for almost an hour and a half!  Chelly did also mention that she has seen and worked on other ALCAPA cases and this was the sickest heart that she had seen.

Although, things are going well at this moment right now.  He's still knocked out and looks comfortable.  I will leave you with some photos I've taken today but for now I'm logging off to spend some time holding Trey's hand.

Trey before chest closure

Getting the room ready for surgery

Dr. Collazo (cardiac surgeon), Chelly (cardiac PA), Lynn (Trey's nurse today) and Dr. Dockery (pediatric attending on call for cardiac) closing Trey's chest

Trey - with a CLOSED chest and resting peacefully on heavy sedation! :-)
(the orangy-red solution around the gauze is betadine, not blood.  It's used before surgery to kill any kinds of bacteria that is on your skin to lower the risk of infection when you have surgery)

Wednesday, September 21, 2011

Baby Power Campaign for Trey!

Want to send some Baby Power to Trey to help him get better?  I'd love to habe a video montage together of people sending Trey "Baby Power" so he'll know how many people are thinking and praying for his recovery.  Plus, when he gets older he'll be able to see everyone that was supporting his recovery.  My girlfriend, Kristy, agreed to put the video together for me and set it to music.  She does awesome videos with her kids!  Love them!  She has an amazing blog that cracks me up located at http://theprimamomma.com/.

You ask... how do I send some "Baby Power" to Trey?  Send a picture of yourself with some Baby Power... be creative. If you'd like you can use the Baby Power poster that I came up with.  Click here to access it... but don't feel limited to that, have fun with however you would like to do it if you'd like!  If you do use my poster, please write your name real big in the bottom area.  Send the .jpg file to me at treyheart@gmail.com.

Below is my Moments for Moms group through church sending Trey some Baby Power  

Here is Trey's nurse today, Holly, and his Cardiac PA, Chuck, sending some Baby Power.

Zena also sent some Puppy Power to Trey this morning. 

P.S.  If Chuck's mom is reading this... he rocks!  Him and Dr. Shen did an awesome job removing the ECMO and trying to close his heart the other day... they even kept their cool when I, the mom, walked into the unit the other day when they were operating.  We are so glad to have such a great cardiac team that includes him.  He has helped save my baby's life and I can't thank him and the entire team enough for that.

P.P.S.  Hannah - Trey and I miss you!!

Day 9 - 7:30 pm

I just realized that we are exactly 1 week post op!  Wow - time has gone so fast.  It's amazing how I feel like I've spent forever and a day here already and it's even hard to even remember last week yet at the same time I can't believe we're already a week since surgery!  It feels like so long ago yet just the other day at the same time.

Only about 51 more weeks (give or take 20) until we know about how much his heart has recovered....  this is definitely going to be a long road but doable.  One week down....

The night nurse, Stephanie, just came on and she just let me know that she also has another patient tonight.  Wow, hrm... it's nice to know that they feel he's recovering enough to share a nurse but that also means that he no longer has a nurse just to himself.  She'll have to go back and forth between 2 different rooms.  Kind of heard to digest.

Day 9 - 4:30 pm - Open Sesame

Well, Trey's chest closing was moved to tomorrow.  Dr. Collazo is going to be closing Trey's chest but he had another surgery this morning.  His first surgery apparently wasn't going to smoothly so they pushed T's closing to tomorrow.  His vitals still look good for him and I'm thrilled about that.  He's holding steady... and he's been off ECMO for 54 hours and 28 minutes!!!!  His bleeding is doing much better and the gauze that covers his chest (there's gortex under the gauze sewed to his skin) is clean... which is much easier to look at.  He's waking up quite a bit more now but doesn't seem to be in too much pain.  Like I said earlier in another post, a way to gauge if the baby is in pain is by watching signs from his face, for example... brow furrowing.  His vitals would also be elevated if he was in too much pain. He's showing neither.  Right now at this moment he is sleeping though.

The pad on his head measures the blood oxygen level in his brain.  He also has one on his back, which measures the blood oxygen levels in his kidneys.

Tuesday, September 20, 2011

Day 8 - 9:55 pm

Well, I am super exhausted.  I ended up getting about 4.5 hours of sleep last night.  My mind just runs and runs.  I feel as though I'm on auto-pilot most of the time.  Granted, things just blurt out of my mouth a lot of the time anyway but right now there are times I either can't think to even get something out of my mouth or I just say things without thinking whatsoever!

Trey did well today.  He's been pee'ing like a champ.  Before I left at 7 pm, I noticed that the swelling on the back of his head seemed to have gone down considerably.  He's still fighting sedation and there are times when he opens his eyes a bit to take a look around.  There was one time today that he furrowed his brow, which usually means they are in some pain, and that broke my heart.  Hannah quickly gave him some more sedation and he settled down.  That's the one and only time that we've seen him do that so my hope is that he's as comfortable as he can be at this time.

We saw Dr. Futterman today for the last time before he goes to work at Children's Hospital.  He was the attending in the PICU when we got there and I can't say how incredibly fantastic he was to deal with.  He's been in the PICU multiple times since then just to check on how Trey was doing.  While we've only been there a short time, I'm already going to miss seeing him around.  He really made you feel as though we were all in this together - actually, all of the attendings (or intensivists) make you feel that way - but Dr. Futterman was Trey's first Dr. at INOVA and we hate to see him go already!  Thank you Dr. Futterman for being so great with Trey during his first procedures at INOVA!

Dr. Vish is our attending for the week and Hannah has been our nurse since gosh, seems like forever.  She was charge nurse when we came in last Monday and she ran his ECMO when he got out of surgery.  Then she's been Trey's main nurse on days since Friday till today.  She's off tomorrow until next week.  I don't know what I'm going to do without her!  She's so great with Trey and knows his vitals so well.  She's also great to talk to.  I've really enjoyed spending time with her (if that makes sense... kind of heart to enjoy yourself in the PICU!).  Plus she knows exactly how I'm coping with all of this so I don't feel like a bit of a psycho around her.  I take a lot of pictures and she tends to know what I'm thinking before I say it.  Yeah, tomorrow's going to be tough without her!

Well... it's off to bed now.  I've stayed up way later than I wanted to.  Tomorrow is a big day with possible closing or at least a cinching at 1ish! 

Day 8 - 4:30 pm

Still holding his own.  They seem pretty confident that they'll be able to close tomorrow.

Day 8 - 2:15 pm - A day of PEE!

28 hours and 13 minutes!!!  That's how long Trey has been off ECMO.  WooHoo!  It's a huge step in the right direction!  The goal in my head right now is just to be able to get off ECMO and stay off of it.  Dr. Shen said that if he can keep his vitals strong enough to stay off for 24 -48 hours then I can breathe a sigh of relief that he won't have to go back on ECMO (although nothing is really a guarantee).

His numbers did fine overnight and have been slightly better than when I left last night.  His LA pressure has gone down, which is a good sign.  When I left last night it was about 22-26 and today it's been hanging somewhere between 16 and 20.

Today he is receiving Diuretics in order to reduce his swelling.  The plan is to close his chest tomorrow as long as they can get his swelling to go down.  

So today is going to be spent encouraging him to pee as much as he can.  His nurse, Hannah, had already given him a pep talk this morning before I got here.  It has been raining today and it took me about 1 1/2 hours to get to the hospital!  270 and the DC beltway were a mess!  It's been really nice to have the same day nurse with him since he's come out of surgery.  She's really gotten to know him and is right on top of his care.  She knows his numbers and where he likes to hang out so if something goes a little awry, she can respond very quickly.  I feel as though we can really trust her... even if she is from West Virginia ;-).

The other thing I'm doing is waiting to hear about my cousin Erica.  She went into the hospital yesterday to be induced with her third child, a girl, and is still in labor.  She's progressing very slowly so I'm definitely hoping that things have progressed more since I talked to her this morning.  This morning she was still only at 2 cm but they were about to give her more Pitocin so hopefully that will get her going!  I can't wait to see pictures of her once she gets here!

Not sure how long I'm going to stay at the hospital tonight.  I'll post an update later tonight about his status or if anything changes in the meanwhile.

Day 7 - 2:30 am

Well, I am home for the night.  I debated staying over tonight so that if Trey had any complications I would be close by but I felt pretty disgusting by the end of the day and figured a shower in the morning would be good.

It was SO incredibly hard to leave Trey tonight though.  This evening he started moving around a lot more and even opening his eyes a bit.  I didn't want him to open his eyes and not see me.  With him moving around again it makes him seem real (of course he is... it's just when he's sleeping it's easier to pretend he's sleeping and feeling just fine).  There are at times he definitely looks pretty uncomfortable and that is sad.  It's really hard to see him that way.

After I get home, I have a hard time getting straightening things up and going right to bed.  I feel as though I need to wind down a bit.  It just seems as though there's so much to do but I'm not really doing any of it.  It's odd.  But it is 2:30 am not and I should probably be getting to bed.  I'm afraid of going to sleep and getting a call from the surgeon telling me there is a problem.  That's what happened this morning and it scared the bejezus out of me.

But before I go to bed, I will leave you with some interesting photos from this morning.  Dr. Shen was shocked that I was allowed in while they were working on him.  He was even more shocked that when I saw what was going on I didn't faint but instead reached for my camera.  Taking pictures of our journey definitely helps me cope.  I imagine putting together a digital scrapbook for him to see when he is much older.  Key words there are "much older"... that means he'll be just fine and come home.  I will be showing him all of these pictures in his teen years.

Anyhow, while the cardiac team was waiting to see how he was doing off the pump Dr. Shen told everyone to wave for the camera.  Hannah (our nurse) said that no other parent will have a picture like this... don't I feel special! ;-)

Here is Dr. Shen with the profusionists.  Dr. Shen asked them all to pose for this picture since they weren't included in the surgical photo. 

Dr. Shen is absolutely amazing.  I can't say enough about how great he is.  He seems like such an interesting person - a great mind, a great bedside manner, a great teacher and a great sense of humor.  All of the Dr's have been great and I'm very happy that I chose to bring Trey to INOVA.

Oh yeah, and wanted to leave you a sweet picture of Trey that I took just a few days before he went into INOVA.  Despite the distraught look on his face, he really did seem to enjoy his bath and liked splashing in the water.

Monday, September 19, 2011

Day 7 - 5:27 pm

Trey has been off ECMO for 7 hours, 25 minutes now and is holding his own.  His vitals haven't really changed much since he has been taken off the pump.  He had an echocardiogram this afternoon and it showed a very, very slight improvement.  The muscle looked as though it had a stronger squeeze towards the ends of the heart (according to the cardiologist... not me!) than when he came in a week ago.  His ejection fraction looks a teeny bit better than before surgery as well.  They won't pinpoint what that number is because it can vary a lot... basically, the surgeon just explained to me that I just need to know that it is going up and not to get stuck on numbers for that as of now.

The other number that they are really looking at is the pressure in the left atrium of the heart.  Right after surgery the pressure was in the 30's.  This is high.  Since the heart is weak it is not pumping the blood out, yet blood keeps coming in.  Trey's left atrium is weak and they need to make sure there isn't a backup of blood in that cavity. If blood keeps coming in and the heart can't get what was in there already, it could start backing up into the lungs... which would be bad.  One of the reasons he was put on ECMO is because this LA (left atrium) pressure was high.  Right now it is hanging around 21 and they seem happy with that.

This morning at 7 am I received a call on my cell phone.  I was absolutely exhausted, looked at the number and almost didn't answer it because I didn't recognize it.  Thankfully I realized that the area code was from Virginia and automatically thought - oh crud! (ok, so maybe it was more "french" than that)  It was Dr. Shen, the surgeon, and he told me that he had begun to bleed more and it concerned them.  He wanted my permission to go in to his check to take a look around.  Um... yeah... please do!

When I got here at a bit before 10 I walked into the PICU and there was an entire cardiac team in his room (see picture below).  They were in the process of taking a looksie at the bleeding, unhooking the ECMO cannulas and attempting to close his heart.  By the time they were finished he was off ECMO but his chest was still open.  This is what happened....

Dr. Shen explained that when they suture the artery onto the aorta they use a needle and thread.  The needle is thicker than the thread so after the stitches are in there is some oozing around the stitch from the width of the needle.  The hope is that the blood will clot and seal this off.  Since he was put on ECMO they had to give him Heparin, a blood thinner, so that the blood didn't clot in the machine (human blood does not like plastic and therefore will thicken/clot int he plastic tubing of the ECMO).  Unfortunately, the Heparin didn't allow the blood to clot around the sutures and therefore he started to bleed from the surgery site.  Once they took him off the ECMO pump they were able to give him thickeners, which was able to get his bleeding under control because he could clot.

They attempted to close him as well, but whenever they pulled the breastplate together his heart rate would jump to the 190's which was too high.  When they released the breastplate the heart rate would drop down to the 170's.  They decided to keep the chest open for now because of this and are going to attempt to close again on Wednesday or Thursday.

The Dr.'s and Nurses here at INOVA are absolutely awesome.  Dr. Shen has explained everything in depth whenever I had a question in language that I can understand easily.  They are all so incredibly easy to talk to and ask questions.  Dr. Shen is going on vacation tonight so his colleague, Dr. Collazo, will be here this week.  I asked Dr. Shen if he thought we'd still be here by the time he returns on the 30th.  Dr. Shen and Dr. Callahan (cardiologist) discussed it and it was determined that we most likely will. Dr. Callahan said that it's definitely a possibility that we could still be here for an additional month.  I then asked them if it was possible if I could come live with them for a short while after we were discharged.  They laughed.  I'm just so nervous about going home.  Of course, it's still a long way off so that's why I can't imagine it.  I assume that as he eventually comes off of the different machines, IV's and wires that going home will seem easier but I can't even imagine sleeping during the night for a long time after he comes home!

The picture below is from when Trey had his echo.  The Dr. with the cap on is Dr. Irving Shen (surgeon), next to him is Dr. Patrick Callahan (pediatric cardiologist), the Dr. on the phone is Dr. Michael Vish (PICU attending this week), sitting down is Dr. Kathleen Donnelly (PICU attending on call for cardiac) and Hannah (our nurse) is on the left of the photo.

Day 7 - 11:25 am - Off ECMO!

Off ECMO (for now) and working on his heart.  He's been off ECMO for an hour now.  Will update again when they are done.  Apparently they don't usually let parents back when they do this but they let me stay.  I want to be able to tell him EVERYTHING when he is older.

Day 7 - Sunday Update - A day of rest

Trey had another quiet day of resting.  We had visits from Nana, Grandaddy, Aunt Mary Sue and Shannon today. 

Unfortunantely, Trey had some bleeding today and it got a bit out of control between 3 and 6.  Thankfully Hannah, his nurse, and Susie, the ECMO specialist, were able to get it under control. 

The plan is to start weaning him off the ECMO machine starting at midnight tonight.  He is currently at a flow of 100.  They want to be down to a rate of 50 by rounds at 7 am and down to 25 by around 10 am.  At that time they will clamp him to see how his heart does and what his ejection fraction is. 

Around noon tomorrow they are also going to move the cannulas from the ECMO machine from his heart to some arteries in his neck.  If the swelling of his heart is down they are then also going to close his chest.  He is also going to be receiving a new ECMO circuit (the tubing, pump and oxygenator) because there is some clotting in the current circuit.   

Sunday, September 18, 2011

Pre-Blog updates from Facebook - Days 1-6

9/12/11 (Day 1)
12:56 pm  Trey had some breathing issues again this morning so we are back in the ER.  Been here about an hour and a half and he is doing much better now.  Just waiting to see what comes next now - at Montgomery General Hospital.

10:03 pm  In the Cardiac PICU with Trey at INOVA Hospital

9/13/11 (Day 2)
3:38 pm  Watching Ellen and having a snack of blueberry yogurt covered pretzels while waiting for Trey to get our of the Cath Lab.

12:00 am  ALCAPA diagnosis is confirmed.  Trey will be having open heart surgery at 7 am at INOVA in Fairfax, Va.  The surgery should last about 5 hours.  Please keep him in your prayers.

 9/14/11 (Day 3)
1:57 pm  Trey is out of surgery.  Waiting to get report from Dr. Shen.  Will be slow in transporting him back to PICU though due to lots of machines attached to him.  Might be awhile get get report still.

7:43 pm  Trey is currently on an ECMO machine that is assisting his heart in pumping his blood through his body.  The Dr. said that his heart was working a bit less than they thought.  It was pumping about a 7% output or ejection fraction, which is not good at all.  If they hadn't caught it this week he may not have survived much longer so praise God for Dr. Gebru at Montgomery General Hospital and Dr. Patrick Callahan, the cardiologist that diagnosed him. 

1:32 am  Spent 2 hours with Trey.  Had some good laughs with the nurses.  Just what I needed.  Apparently he is doing really, really well on the heart pump and is trying to fight sedation.  They said the fighters usually recover faster.  Not out of the woods yet but the trees are getting greener.

Off to sleep in the waiting room after a very trying day.  I hope the couch is comfortable!  I'm staying tonight but will probably start going home for nights starting tomorrow. 

9/15/11 (Day 4)
Trey survived the night.  We spoke to the Dr. and she said he's still very, very sick and that they had to sub in some other medications for ones that he wasn't tolerating well but he didn't give them any surprises while we slept.  He is still on the ECMO machine, which is taking the blood out of his body, putting oxygen in it and then pumping it back into his body and around it.  This is giving his heart a mini vacation to recover from the surgery and the damage he had.  Right now he has 1 PICU nurse dedicated to just him and a profusionist dedicated to just his pump.

The Dr. Stated that his heart has a lot of damage and some cells have already died.  The hope is that the cells that were borderline surviving will rejuvenate and become strong again.  They're not sure how much of his heart was just weak as opposed to already failed.

9/16/11 (Day 5)
Today was a slow day for me and I didn't get to the hospital until 11:30 am.  I then spent most of the day journaling our journey so far.

Trey remained stable last night.  Today they clamped the ECMO to see how his heart was pumping on its own and he pumped out an output of 11% instead of the original 7%.  Normal numbers are between 50 to 70 percent.  While it's a step in the right direction they would like to see more and therefore decided to give his heart another day of rest before attempting the wean.  So not much of a difference today.

9/17/11 (Day 6)
Went to Bryce's soccer game this morning and then headed to the hospital to see Trey.  

Trey is exactly the same today.  They decided not to try any kind of wean from ECMO today because after the test yesterday his output was an improvement but they thought his heart would benefit from resting over the weekend and the output would be much better on Monday.  So it's more resting on the ECMO pump until Monday.

Friday, September 16, 2011

The Beginning

Trey is my third son. He was a pretty normal pregnancy, meaning that no pre-eclampsia yet I did have some high blood pressure. He was born at 39 weeks because my blood pressure was creeping up and they wanted to avoid possible late stage pre-eclampsia. He was born on June 24 after 13 hours of induced labor. He was 7.5 lbs and 21 inches long. The heaviest of all of my babies by 2 lbs. He seemed perfectly healthy and came home with us after 2 days. His follow up well visits with the pediatrician were fine and he was gaining weight like a champ.

Now, he was a little raspy sounding since birth and he coughed quite a bit more than my other ones but it seemed like normal newborn congestion. I just figured he was my "coughy" child. No big deal. On August 12 we went to the mall to get new shoes for Bryce and Cole. He seemed as though he was a bit raspier than normal and I figured he might have a touch of reflux and I figured I would call the pediatrician on Monday to get an appointment for him. At about 4 pm we left the mall. I put Trey in his car seat and he sounded like he was going to start crying. He did that stuttering ah, ah, ah sound like he was getting ready to have a fit but he never actually started crying. I drove home from the mall with the 2 boys and my mother in law and when we got home I took Trey out to go nurse him. That is when I realized Trey had never stopped making that sound the entire 30 minute ride home. I got him inside to try to nurse him but I couldn't get him to stop making that awful sound. He looked kind of pale and I picked his arm up to move it but it was completely limp. That is when I put him in the car seat and ran out to get David. David agreed that his color was not normal and we jumped in the car to go to the ER, leaving Bryce and Cole with my mother in law who was thankfully, still at our house. 

We got to the ER and I ran in asking for a dr. The reception desk told me I had to wait to register and it would be a few minutes. I told them he was having breathing problems and needed a Dr. right away but they said that it would only be about a 5 minute wait. Thankfully there was a nurse in the back corner of the waiting room that heard my plea and came over. She took one look at Trey and ran us to the back to get the pediatric ER dr. Before we knew it there were about 15 doctors and nurses running in and out of the room. By this time I was flipping out! The doctors were too busy to explain anything and they were just yelling things out at each other. It seemed like a scene out of the TV show, ER. 

The doctors were finally able to get him stable by inserting an IO into his leg (a type of IV except it screwed into the bone marrow to deliver fluids... they were unable to get an IV in him). Once they got him stable they began talking about transferring him to Children's Hospital in DC. It was determined that we were going to be air lifted to Children's. At about 7:30 we left Montgomery General Hospital and in 7 minutes we arrived Children's. While the circumstances were terrible, I do have to say that the flight was beautiful. Trey and I got to see many of the DC monuments by sunset from the helicopter.

When we got to Children’s we got a nice private room and the Dr's came rushing in. The attending explained that his respiratory rate was very high and that they may have to intubate him to give him a break so that his body didn’t get overly exhausted. They looked at his chest x-rays and decided to give him some breathing treatments to see he would respond to that. My father mentioned that he thought the heart in the x-ray looked rather large but we were told by the fellow that it was actually the normal size of a baby’s heart. They gave Trey racemic epinephrine and albuterol through a nebulizer and he seemed to react very well to the racemic. They were able to get his respiratory rate under control and therefore decided not to put him on a vent.

Children’s sent out a bunch of cultures to test for various viruses and bacteria. 24 hours later Trey’s results came back positive for Rhinovirus, which is the common cold virus.
They noticed a trend in his breathing problems, that he seemed to have a breathing attack every 6 hours or so and therefore they put him on a schedule of receiving Racemic every 6 hours. They did this for about 2 ½ days. After that it was just as needed. They had him on on a VapoTherm (compressed oxygen) since he was admitted and on Wednesday they began to wean him off. By Thursday afternoon he was on the regular nasal cannula and totally off forced oxygen by that night. He passed his car seat test (he had to sit in his car seat for 90 minutes while they monitored his vitals and oxygen saturation levels) with flying colors and we were discharged from Children’s Hospital on Friday, August 19.
He came home and was doing fine but on Monday, September 12 (exactly 1 month after being admitted into Children’s) at about 10:45 am Trey was taking a nap while Cole and I relaxed on the bed with him. Trey was startled out of his nap when Cole gave him a kiss and he began screaming. He then began having problems breathing again. I was able to calm him down and get him to breath. He was still very pale and limp so I called the pediatrician. She urged me to call the ambulance and get him to the ER. I ran to my neighbor’s house to get help with Cole and Trey and I left for the ER.

When we got to the ER the first nurse I saw was a lady I know from church. It was so nice to see someone I knew! This visit I was all by myself, David was at work. We then walked to the pediatric side and thank goodness the same Dr. was there from last time. This meant that I didn’t have to explain too much to him. He was shocked to see us again and immediately started to work on him. They were able to get an IV into him very easily this time and his vital signs were all good. He took another chest x-ray and noticed that Trey’s heart was slightly enlarged. He decided to call in a cardiologist to take a look at it.
The cardiologist did an echocardiogram (basically a sonogram of the heart that shows blood flow) and Trey behaved fabulously. Dr. Callahan then sat me down to give me the results of the test. He explained that Trey had a syndrome named ALCAPA or Anomalous Left Coronary Artery off the Pulmonary Artery. Basically, the artery that supplies the blood to the heart was coming off the wrong artery. Instead of delivering oxygen rich blood from the Aorta, it was delivering oxygen deprived blood coming from the Pulmonary Artery. This was causing the left side of the heart to begin to die and fail. The muscle became large from not being strong. This was quite a shock to me and it was a pretty scary to hear, especially since David was still not at the hospital. Thank goodness my nurse friend, Tracey, was there to help with a second pair of ears. 

He said that Trey needed to have surgery in order to survive. The surgery consisted of moving the Coronary Artery from the Pulmonary Artery and attaching it to the Aorta. Afterwards he would need help from medication and time for his heart to regain strength and work like it was supposed to. It was at this point that the Dr. stopped to tell me that he thought I seemed to be taking this news rather well. He wanted to know if I was ok or if I was a mess inside. Well, I figured since it was just me there I had to somewhat hold it together. Plus, I had lost it the last time he was in the ER. At that point no one knew what was wrong and there were no answers. At least this time there was an answer and with that came a solution. It was better than not knowing anything. I couldn’t change the situation and this is what I had to deal with. I had to buck up.

He gave me the option of having the surgery at INOVA Fairfax, where he was based out of, or he could refer us to Children’s Hospital again. I chose to follow him to INOVA. I called David to meet me at Montgomery General. Thank goodness my parents were on the way to my house to watch the other children and then I had to call my in laws to ask them to come back from vacation.

Trey was airlifted to INOVA and we went by car to meet him there. We got there and were met by Dr. Craig Fetterman in the PICU (Pediatric Intensive Care Unit). Dr. Fetterman explained all of the procedures they were going to do to him that night and that he was going to be sedated for them. They put him on a ventilator to help him breathe and a central line to deliver medication. We waited outside in the waiting room for about an hour during that time. When we came back in he looked so much more relaxed. We were then told that he would go to the Cardiac Catheterization Lab to confirm the diagnosis. This is where they send a camera up a main artery into the heart and inject dye into the blood to see exactly where the blood was flowing. By this time it was about 1:30 am and we were exhausted. Both David and I slept in the hospital room that night, me on the pullout chair and David in the glider. We both got awful sleep that night.

The next day Dr. James Thompson came to explain the procedure that he was going to be doing on Trey. At about 1:45 pm the transport team came to bring him down to the Cath Lab. At about 4pm they came to get us and Dr. Thompson explained that the diagnosis of ALCAPA was confirmed. He then informed us that Dr. Irving Shen was on his way to tell us about the surgery.

Dr. Shen came in with a model of the heart and explained ALCAPA to us again. He explained how he was going to fix the problem and then told us that Trey would be having surgery the following morning, first thing. He explained all of the risks and there were many of them! There was also the possibility that the surgery wouldn’t work. If they were unable to get the Coronary Artery to flow blood through it correctly, he wouldn’t come home. Yet, if he didn’t have the surgery the heart would fail and he would die.

We went home that night to get some sleep before the big day and we returned to the hospital at 6:30 am on Wednesday morning. He was wheeled into open heart surgery on September 14. After 6 hours they came to tell us that the surgery was a success and that we would be able to see him in about an hour. They did inform us that he would be coming upstairs with his chest open on the ECMO machine. Both were things that we were informed about earlier that could happen. Keeping his chest open allowed his heart to swell without becoming compressed and the ECMO machine is a machine that pumps his blood for him so that his heart can rest. The machine has tubing that comes out of his heart, sends the blood through the pump, through a machine that puts oxygen into it, back into his heart and then throughout his entire body. It does the work of the heart for him so that his heart could take a mini vacation.

The surgeon briefed us on the surgery and told us that they measured that his heart had only been pumping an output of 7%. It was amazing that he was alive and aware! They were successfully able to move the artery to the right place and it was lucky that we came in when we did. He thought that Trey may not have survived more than a week or two more. He said that he would have had a heart attack and no type of resuscitation would have revived him.

We were finally able to see him and it was quite a shock. He was on a lot of machines! The rest of the day on Wednesday was spent getting the right flows on the ECMO to keep all his vitals stable. They told us that he would remain on the pump until at least Friday to give him a rest. I decided to spend the night at the hospital just in case Trey needed me and David went home to get some necessary sleep.

And that is where we are now… I’ll be updating this blog as often as I can to let everyone know how Trey is doing and to document his journey.