We have been riding on auto-pilot this week just trying to go through the motions and get Noah through this recovery. Each day I have moments that I'm just in disbelief that this is our story and how much our little baby has been through, but I can't even cry right now. I'm still processing, we are in this "survival mode" and it might be a while until we can take a deep breath again.
Looking back at Noah's recovery from the Norwood, which is typically the roughest of the three surgeries, it seemed like a breeze compared to post Glenn so far.
Noah's face and body was about 2 times the normal size from being so swollen. After his second operation Wednesday night he came out open chested and with a lot of things on him. Since then we have made quite the progress with getting some things off of him which makes us really happy to hopefully have our Noah back to his normal happy self soon.
The Glenn surgery takes some of the work off that right ventricle in the heart. It's been working on overload the past couple months since his Norwood. And in Noah's case, his function isn't the greatest anyway so it's doing extra work. The surgeon removed the Sano shunt that was placed during the Norwood and took the SV (Superior Vena Cava) which is a very large vein that carries the oxygen-poor blood from the body to the heart and they instead attach it directly to the pulmonary artery, enabling blood returning from the body to flow directly to the lungs.
So with Noah's new circulation set up... comes the GLENN HEAD. His head looked like a balloon and if you put your hand to his temple, you could feel the thump from the pounding headache he had/has. It's very common in these babies during recovery as they get used to while their body adjusts to its new circulation and blood flowing through the noggin'.
Noah opened his eyes for the first time on Friday night. Although it wasn't too pleasant and he screamed his face off because of the headaches most likely, it was nice to see his sweet little eyes looking back at me. It's been a rough couple of days for this sweet little boy.
Saturday I was able to hold Noah for the first time since his surgery- oh it felt good!
This week, starting Monday, we finish the rest of the evaluation process for Heart Transplant. This includes meeting with a social worker, getting some blood tests done on me, meeting with countless other doctors..and of course, seeing how Noah handles his new set up. Either way, they will want to complete the evaluation for the transplant and get him ready to list in case he doesn't tolerate getting off Milrinone. Brandon and I will be trying to push through this evaluation process because again, our head and hearts just aren't there yet and we have faith that Noah likes his new circulation.
Today, Sunday, we have made some huge progress with weans and we got to feed Noah (less than an ounce) for the first time in 2 weeks by mouth! The staff on the heart failure ICU floor have been great since we have been here, and that's not always the case, (they change out every couple of days) and want to get Noah back to being a "normal" baby. I am glad the team and I have seen eye to eye; it can be difficult when we aren't on the same page and we are just twiddling our thumbs and not making any progress which happens a lot!
One set back we are working through right now, Noah had an X-ray this morning that shows his left lung is completely collapsed, most likely from the bleeding complication on Wednesday. This isn't helping is sats right now or making him more comfortable so we are doing some respiratory therapies with him every couple of hours to help his cough it up. We are hoping that it fixes itself over the next day or two! He has a pretty nasty cough, which is a good thing and means hopefully the fluid is breaking up and coming out.
The prayers are totally working, and Noah is showing us what a fighter he is.
Below are all of the accessories and medications Noah had coming out of surgery because I am sure I throw the words around in my posts so just in case you're curious. Every day we are getting rid of something which is amazing progress and I mentioned below the status. There are a lot, so I'm sure there are some I'm forgetting.
Meds
Milrinone: Medication used for heart failure patients typically. Noah's recovery will really depend on if we can get him fully weaned off this medication. It can only be given via IV, so if he doesn't tolerate coming off of it due to his depressed function, then he will be getting listed for transplant. WE WEANED THIS TODAY-- we should have an idea by tonight how he is tolerating..THIS is HUGE and a big indicator on if we will be going home home ( Austin )!
Heparin: Blood thinner to prevent him from getting blood clots. He will be on this until his lines are removed since he has a history of getting clots.
Fentanyl: Strong pain med that he was getting consistently- we discontinued this Sunday morning 11/17 and he seems to be tolerating well!
Versad: Sedation med which we are still having to g9ve him every once in a while
Morphine: Pain med and the withdrawals SUCK! We haven't started weaning this yet.
Tylenol: Help with the pain a little more.
Dex: Sedation med and we just started weaning this yesterday but had to get back on it due to high heart rates and withdrawals... so we try again today :) Baby steps.
Aspirin: He will be on this for the rest of his life <3
Accessories
Open Chest: Yes you can see his heart beating... and how I love to see that little heart beating, it's terrible to see him in this state. Like I mentioned in my last update- The surgeon was able to close his chest Thursday!
Pacing Wires: These were removed when Noah went back into the OR Wednesday.
Arterial Line: A line that was placed in his left arm and gives a direct reading of his blood pressures. Noah decided he didn't want to have this anymore on Saturday night and ripped it out.... it was a bloody mess but we got him cleaned up and he has one less line, smart guy ;)
The "Glenn Line": a line sutured to his neck and is placed in that large vein, Superior Vena Cava, in the neck that was disconnected from the heart and attached to the PA and it measures the flow. This was removed Saturday (11/16)!
Intubation: A tube inserted through the nose and used for ventilation to help him breathe. The Glenn physiology works better extubated so typically after the Glenn babies get this removed within 6 hours from the surgery since Noah has some complications, this was removed Friday(11/15) which was still amazingly fast. It was a really stressful process with the entire team in the room prepared to reintubated him because he was desatting, but he picked back up and is now on High Flow Nasal Cannula which we are attempting to wean today and get him on just a regular canula. His sats are sitting in the low to mid-70s which is a huge adjustment for us to see. Noah typically had sats around 88-90 since his Sano Shunt was a little big for him and it takes some time to grow in to, but the doctors said this is pretty normal for Glenn babes and his will likely improve once his lung gets better and he wakes up more!
Chest Tube: This drains blood, fluid, or air from the chest, it goes into this bubbly thing that is the only relaxing sound in our room. But no one likes a chest tube, and this is the icky thing we had issues with last time for the Norwood, when Noah got Chylous Effusion, a complication from surgery. This tube will be hanging around a couple more days until Noah starts taking in more food and we rule out the Chylous.
Intracardiac Line: I haven't taken a good look at this one yet, but from a quick glance, it looks like a little button on his upper belly and goes to the in the right atrium providing convenient access to the central venous system. This line is the main reason we can't really pick him up right now without help. This line will be getting removed Monday (11/18) if all continues to go well with his recovery. The OR team will be present with blood on hand because removing this can have risks, bleeding be one of them.
Peripheral IV on leg and arm: Just regular IVs for medicine, they like to have backups just in case. These hopefully will get removed this week!
CVC Line: Central Line for meds to be administered. This goes up through his leg and is a cath up to the center of his body. He had this before his Glenn due to him being on the heart failure med and Peripheral IVs are not very reliable and usually only last on Noah for 2 days MAX.. so we needed a more consistent line that works.. all the time. They can also pull blood from this line so he doesn't have to get poked. This is the line that causes his blood clot before so he is on a blood thinner. Not sure when we will be able to get rid of this, but hopefully soon!
#PRAYFORNOAH
Hi my name is Donna Giacona.I'm friends with Pat &Fred Ulrich.They told me about NOAH when he was born.and I've been praying for little NOAH.they have kept me informed about every Sunday at church. NOAH has stolen my heart.he is so special to me.He is a fighter and strong willed.I believe in my heart that he knows you are there and will always be there.I pray that God will continue blessing NOAH.and keepin him safe.I pray that God will give you the Pease that only he can give.#pray for NOAH.we love NOAH and his mom and dad.