He ate!!

80 MLs down the hatch! Exactly 12 hrs out from surgery. Our man is a miracle man no doubt. Aaron was getting some sorely needed rest so he missed it but I got this after dinner shot of his milk coma face.

Still sleeping

Macsen is still looking good. He has a little nasal cannula blowing oxygen up his nose, a chest tube draining his chest, a catheter, an arterial line measuring his pressures... 2 IVs with fluids, and milrinone for his heart. No pacing wires this time. He kind of woke up a little when the nurse took off his blanket and cried a quiet, pitifully strangled cry so we shushed him back to sleep. He will be on morphine, weaning to Tylenol. Maybe tonight if he can handle being awake enough to swallow I can feed him. Maybe able to hold him tomorrow. We were booted from the CICU because they are doing a sterile procedure.

He looks good!!

Macsen is recovering and looks good. Not awake yet.

Waiting to see him

Saw the surgeon. He said everything went really well. Waiting for them to get Macsen settled and his breathing tube removed and we can go see him!!!!!

Off bypass

Just got the news - the repair is done, Macsen is off bypass, and they are starting to rewarm him

First update

All prelim work done - breathing tube Eric- and Macsen is on Bypass. Working on his heart now. Praying

In the OR now

They just took him to the OR. I carried him down the hall - blissfully asleep as his sleepy meds had kicked in. I was afraid he would be awake for this and scared, but he was unaware. Then DrSpray's anesthetist Susan, the same from his last surgery, carried him confidently away remarking on his awesome hair, freshly washed it floated and waved with every step they took.
We were headed up to DrSpray's sparse and modern office to wait for him to meet us but we ran into him in the hall. He reassured us that the risk from this surgery is 1/100- very low- and he will do the Hemi fontan on Macsen. Updates to come

It's on for 8 am

Tucked in for the night. Macsen ate twice but that sedation was pretty heavy and he has yet to completely wake up. Apparently he started to wake towards the end of his cath and they gave him another dose of ketamine. It is still working on him 9/10 hrs later. Miss his little peepers but glad during the 6 hrs of "flat time" time he needed to stay flat on his back and not move his legs much - tough for a 5 month old baby to do- he was deeply asleep so didn't get freaked out.
He is the first case tomorrow so they will take him from us around 7:45. I am so ready for all of this to be over- just take him so we can be that much closer to you bringing him back. We have been warned that he may have a lot of swelling in his head and upper body and added "blueness." He may also be in a significant amount of pain from the increase in pressure to his head before his body equalizes.
We will find out tomorrow if he will get the BiDirectional Glenn or HemiFontan by DrSpray. Same results - different approach.
Praying tonight

Back from Cath

He's back!

He did ok. Needed more sedation during his procedure. He may have a clot in his left leg from the clot. They had to use his artery on that side. If they can't find his pulse soon they will do an ultrasound and if they find a clot will start heparin. Oh - starting ultrasound now....yay!!! Found a pulse! Phew!
His right ventricle is "stiff" meaning it has high pressure and doesn't let new blood in as easily. Means if they decide to move ahead with the surgery tomorrow - there is a very slight chance they won't and will try to get the pressure down with meds for a few weeks first - he may have a little harder recovery than originally anticipated.

MidCath update

Last checkin was at 1:15. He had 2 more doses of sedation meds and his arterial line was in as was the line in his vein. Because of Macsen's unique heart apparently they likely do the cath via a vein instead of having to use an artery. Should have another updat in 20 minutes or so

3rd iv attempt is the charm

Pre-meds kicked in and they finally found his vein for his iv. Should be soon now. We met DrGlatz. It should be over in a few hours

Cath Time

Almost got this thing started... Waiting to hand him off to Dr. Glatz. Little man is hungry. It's now been 3 hours since he ate and that milk is long gone. We are able to keep him semi calm but playing the video of his sisters singing and talking to him

Cath in the morning

Our day of testing at CHOP is over. Macsen was all smiles and sweet eyes at first but when it came time for his echo he was over it. I think he missed his beautiful echo administrators in Pensacola and was not impressed with the 2 docs that were holding the wand today. He sucked it up though with a little help from our flashing whirling light wand and iPhone videos of his sisters singing to him. He also enjoyed watching a riveting 60 second clip of himself in the bath. The echo revealed that they weren't sure where that extra vein of his is going - if is actually shunting more blue blood into his heart which isn't good and it will need to be blocked/removed or if it is doing something else. So, a cath is needed. They will also look for collateral vessels that can pop up and might need to be blocked off as well. His cath dr will be DrGlatz who is apparently extremely skilled at caths and is highly recommended by all my heart mama friends. Very reassuring to get that from them.
So now I'll go back to sleep - up pumping for Macsen. He will have to stop eating at 7:30 and we bring him in at 9:30. Since he still eats every 90 minutes or so those last 30 might be a little tough. He'll be put under sedation - hopefully he won't have to be intubated - and the whole thing should take around 3 hours.

On our way

In the air on our way to Philadelphia. I think there are about 20 different people coughing - the plane is packed. Macsen won't wear his mask and other than NOT turning on our recirculated air jet above our heads, and lysol wiping all the surfaces there is little we can do to keep the germs away. My anxiety level peaked about 10 minutes into the flight when the temperature in here was at its highest and Macsen was sweating and no longer letting me put the blanket over his head to keep the germs off. I just have to pray he won't catch any of these people's nasty germs they are spewing into the mass of humanity crammed on this plane. After months of steering clear of people this just feels so wrong and I feel trapped.. Cough cough cough! Cough cough cough. I wish they would wear masks but that is my reality - not theirs. They are totally unaware.
It's in God's hands and I am praying.
Macsen is out thank goodness.

More research

Read this today thanks to some other heart moms:

http://www.research.chop.edu/publications/press-releases/?ID=728

Macsen is no longer on the growth chart and is not yet 12 lbs @ 5 month. This makes me so sad. I know he's like a hummingbird - his heart beating faster and working harder than other babies and he eats every 90-100 minutes. Trying to keep fueled up. This research should make me feel better but it was never something I blamed myself for... I know breastmilk is where it is at for a baby - my girls were humongous- it's just another dose of reality that yet again there is something going on with my baby that I can't fix. No matter how much I force feed him - coercing him to eat by dancing while I feed him, carrying him walking circles around our house to distract him so he'll eat, feeding him in his bouncy while I sing to him and pat his back at the same time. He eats most of the time to humour me - not because he is really hungry. And he just isn't growing very fast. I took all that for granted with our girls / they are hungry, they eat, they grow - proud mama. Maybe it will be better that we have to mail the scale back to CHOP and I will no longer weigh him everyday - resetting the digital scale over and over, pushing his kicking feet back on the platform, sliding him down so his awesome hair registers too. Finally accepting he didn't gain today either, or he lost 20 grams, or Hallelujah he gained 40 grams. An emotional rollercoaster - everyday at 10:30 am.
On another note a fellow heart mom informed me that CHOP's beds are all full due to the insane flu season we are having AND infection is rampant in the hospital and they can't pinpoint the reason why. Great. As if I wasn't terrified enough. Praying Macsen will be ok. Praying Macsen will be ok. Praying Macsen will be ok...

Happy 5 month birthday

Happy five month Birthday my darling boy. We celebrated by dancing, taking a walk with you in your sling, singing lots of songs - not much different from everyday :) But I did allow myself a second of pure pride that you are here, you are amazing and I love you so much it overflows - trickling from the corners of my eyes. Sweet baby, 1 week from today you will be in recovery from your second major surgery. I can't keep it from happening and I can't stop the pain you will endure but I will never leave your side and you won't have to go through it alone. Ever. Your daddy and I have faith in you Macsen. You are so strong. You may only have half a heart but it is a warrior's heart. And I know you are a baby and will never read this and this is not a pep talk for you but for me - something I will chant in my head as they wheel you away - along with my pleas to God to keep you safe. We will do this and we will be ok.

Kicking this bug's butt

Maybe it's the 3 Synargist shots, all the prayers, or the fact that Mighty Mr.M is a fighter but he's beating this virus. We heard RSV and just panicked - for a heart baby interstage RSV is one of the worst things to get. But Macsen is amazing and is beating it. He may sound like he's sawing wood with every breath - the phlegm and snot rattling around in his impossibly tiny nostrils - but his oxygen levels haven't dropped and he's still eating - the 2 things that put these babies in the hospital. So, according to his team at CHOP, surgery is still a go in 2 weeks. 2 extremely short weeks.

What?!!!

I feel like the worst mother in the world. I totally failed to keep Macsen healthy :( if i were my boss i would totally fire me but all i can do is watch and hope and pray that this latest virus - this doozy - RSV- isn't the one that puts him in the hospital. Our eldest started coughing the day before Macsen's last cardiology appointment Feb 4. We brought her in on the 5th - my birthday- and they diagnosed seasonal allergies. Not unheard of - she suffers every year at this time. We followed through with her allergy/asthma protocol - inhaler, Nasonex, Zyrtec. Didn't implement quarantine conditions but we should have. 2 days later our other daughter started coughing. Uh oh! Too late. The next day Macsen started coughing. Crap. He got worse and worse and today we brought him in. It's RSV. Of course it is - the worst thing he could catch at the worst time - 17 days away from surgery. There is talk of postponing it. He may have to be hospitalized if he can't kick it on his own. We have our tickets to PA booked and grandma has her tickets and time off work scheduled to watch our girls. It's probably going to get complicated now.
On the bright side Little bub is snotty, coughing, not comfy but he is still smiling. He flirted up a storm with everyone at the pediatrician's office - not his regular one because they were closed due to flooding. And this too has happened for a reason - what it is I can't say but if we have to postpone his second surgery because of this illness - despite months of virtual isolation - I can only believe it wasn't up to us. We did our best but some things are beyond our control and understanding. Or that's what I am telling myself at the moment to keep from crying.
That being said, we are still waiting to hear if we are definitely postponing.