The Open-Heart Surgery and Recovery

 I started a Caring Bridge Site for Roman's surgery because many people were not on Facebook and it was an easier way to update people on how things were going with him.  I am copying the messages that I posted on there because for the most part that details our hospital stay.  I'll add in other details that I didn't put on the Caring Bridge site and note them with a * here.

January 20

• 
  

  This morning Roman was admitted to the hospital. He is in the cardiac ICU, in the Disney's Frozen themed room. He had a chest x-ray, an EKG, and got an IV (with labs). He was a champ, but the hour long IV session wiped him out as you can see in the picture.

  
  

  Tomorrow morning the anesthesiologist will take him to surgery about 7:30 a.m. The surgery should last for 3 hours after they actually begin. We don't expect him to be in recovery until around noon. A nurse will be updating us from the operating room. I will do frequent updates on the caring group site tomorrow. He is expected to be in the hospital for 5 to 7 days after the surgery.

  
  

  

  You'll see this famous singing/vibrating hedgehog in so many of the pictures because it was his main source of comfort and his biggest soother since picking him up often made him more upset.  
  
  

  

  His hospital bed set up.  It was so bright all day and night it seemed.
  
  

  Thank you all so much for your prayers! We are praying specifically that the repair is complete with no leaks, that he comes off all the machines well, and that he is able to start eating much easier and more volume after the surgery.             

  

  
  

  
  

  January 21

  9:30am

  
  

  Anesthesia went well and the surgery has officially begun. 

  
  

  As they took him into the elevator to go to the OR this morning, he was handing out smiles for all the doctors and nurses.  He's such a joyful and social little boy!

  
  

  May God protect him and help the surgical team to repair his heart!

  
  

  12:30pm

  
  

  The nurse called and said that they finished the repair and closed him up.  They had some trouble getting an arterial line, but are going to try again in his arm now that the repair is complete.  We hope to see him within the hour!
  

  *They got an arterial line in his groin before surgery, but his leg went white and cold so they took it out.  After repeating on the other side the same thing happened, so again they removed it.  They then proceeded with the surgery without an arterial line and got one started after his chest was closed up.  This was difficult too as the doctor had to dissect out the artery which was apparently not where it typically lies.  He has a pretty large scar from this, considering it was supposed to be like an IV entry.*

  2:30pm

  
  

  We met with the surgeons, and they were pleased with the results.  They are getting him set up in our room and then we'll get to go see him.  They decided to keep him on a respirator for today so they can keep his pain meds up and give him a chance to rest.
  
  Praise God he is alright!  We pray for an uneventful evening and night for his sweet little body.
  

  
  

  3:30pm

  
  

  

  Right after the respirator came out.

  
  
  

  He got the respirator tube out sooner than expected.  He's doing well!  Thank you, God!  His main goal today and tonight is to rest, so he's on pain meds.

  *The minute we got into the room, he was being prepped to remove the respirator.  I'm not sure why they told us he was going to keep it, but the plan changed almost immediately.  We had to go back to the waiting room after seeing him for only a few minutes.*

  Jan 22

  

  This is when he got behind on the pain medication on the first evening.  He was making this hoarse half cry and it was breaking my heart.

  
  

  Roman had a hard time in the evening. They got behind on his pain medications and moved him. He was really miserable for a little while, but they started a morphine drip and gave another pain med that calmed him down and allowed him to rest peacefully all night. They turned down the morphine to the smallest amount in the middle of the night because he was too sedated, and this morning they turned it off. They plan to keep it on standby, but use other medications to control his pain. He woke up briefly this morning and was making noises, but not whimpering or crying. He seems so much more comfortable today.

  
  

  The doctors just did rounds and are very pleased with how he's doing. They are going to leave in all the tubes for today most likely. He has no pericardial effusion that they can see, but his chest tube is still draining, so it'll stay in for now. They are not going to feed him yet because he doesn't have any gut sounds.

  
  

  We thank God that he's doing well and comfortable! And we are so very grateful for all the prayers and all the help that our friends and family are providing!

  
  

  Jan 23

  
  

  Roman had a great night, sleeping all the way through even with all the nurses did. He did better than I. This morning he got the catheter, the arterial line, and the wires for the external peacemaker taken out. It is easier for me to hold him now, and they are allowing me to try to feed him every 3 hours today. He is still on a small amount of oxygen because every time they've tried to take him off of it his saturation has gone down in the 70s eventually while he's sleeping.  They gave him one dose of morphine today after a bought of fussiness that we could not resolve otherwise.  So for now he's just being monitored and given medications as needed.  Overall, he's doing very well.

  
  In addition to the oxygen (nasal cannula) he also has a line going into his neck, and IV in his left arm, a chest tube draining from his heart, cardiac monitors, a blood pressure cuff, and a pulse ox monitor.  So, still a lot of wires and tubes, but we are gradually de-accessorizing. 😉

  
  

  
  

• 

  Peaceful

  
  

  
  

  
  

  
  

• 

  Watching football with Daddy.  Go Pack!

  
  

  4pm

  
  

  Roman spiked a fever so they are running tests. His urine is discolored so we are hoping it's as easy as a UTI from the catheter. Pray for an easy answer here. He's not been a happy camper this afternoon, but he's eating pretty well.

  
  

  Jan 24

  
  

  The doctor started him on antibiotics and went back to round the clock Tylenol and Motrin. His fever is normal today. He had a lot of gas built up in his colon that was causing a lot of pain and fussiness, but they have been giving him Mylacon and did a glycerin suppository to help clear the gas. He also had chyle coming through his chest tube, and so they now have to change his formula to one that has a different kind of fat (*medium chain triglycerides*) and unfortify it to solve that problem. He's only had one bottle of that formula, but he took 4 oz which is amazing for him! He never takes more than 3.5 and that's been only in his sleep since he went into heart failure months ago.  

  

  I read to him often when he was awake because it was one of the few things we could do to pass the time since he still hated to be picked up and I needed help with all the wires still. 
  
  

  

  Jan 25

  
  

  First of all...I got a smile from him today which just made my day!  He woke up from a nap and I pulled down my mask to talk to him and smile at him, and he smiled back!  I can't even tell you how happy that made me.  I've been waiting for that since seeing the elevator doors close before surgery.  ♥️♥️♥️

  
  

  He seemed to feel so much better today.  He still gets fussy when we have to pick him up, but he's very sore obviously.  He has thrown up after feeds twice and we're trying to figure out the cause.  Both times he'd had a bunch of oral meds immediately before and he's got a lot of chest congestion from the surgery and it hurts him to cough.  That could also be a factor in the puking.  The doctors are not concerned about that.  He's still dealing with gas and is on antibiotics which could also be upsetting his tummy.  

  
  

  He got his nasal cannula out today and his oxygen is doing good so far.  His chest tube has to stay in at least a couple days because of the chyle, but it is improving with the diet change.  Although we're still waiting on the cultures, they are expecting them to be negative.

  
  

  Roman's room is filling up with pictures, cards and coloring pages sent from his brothers at home!  I love it!  I think I forgot to mention earlier that when we arrived they said he was their seventh patient in the PCCU.  He's our seventh child, so that must be his special number.

  

  
  
  

  
  

  Again, thank you all for praying!!!!  Praise be to God that things are improving!

  
  

  Jan 26

  
  

  Today began at 2am with Roman's IJ (catheter in his jugular) leaking and bleeding. The nurses cleaned it up and taped and taped and taped. From 8 until noon he had a chest x ray, two different kinds of ultrasounds, and they removed the IJ. It was exhausting. At one point he even fell asleep during the ultrasound.

  

  
  

  
  

  
  

  The ultrasounds let them know that he didn't have any problem-causing clots and they also discovered he didn't have any more veins available to put any more lines in. Roman's always been stingy with his blood😜.

  
  

  We separated his meds from his feedings and he hasn't thrown up today which is wonderful, however, he also hasn't eaten as much as they were hoping. If that doesn't improve he will have to have an NG tube temporarily. I have somewhat resigned myself to this because I have been struggling with feeding him for months now. The change in formula has thrown him off and I can't fix that. There is nothing we haven't tried. He has to be on this formula for 6-8 weeks because of the chylous chest fluid. We'll just do the best we can! We are not looking at discharge anytime soon yet, though his chest fluid is decreasing.

  

  Jesus, I trust in you. Help our family to suffer this well and be the stronger for it! Roman is worth every bit of it!

  
  

  Jan 27

  
  

  This is a brief update, hopefully with photos this time since I'm at home at the moment. I uploaded photos to the gallery finally, but at the hospital I cannot upload photos to this site for some reason. *Brian and I are alternating nights at home which has been a life saver for us both.  It feels like one really long 36 hour day and then we get a solid night's sleep.  When I get into bed at night it does make me sad to see the empty crib next to the bed.*

  
  

  Roman got a feeding tube last night because we just can't get him to take enough of this new formula. We are very much hoping this is a temporary fix to get him a jump start on his healing and building up nutrition. He's having a lot of gas pains and build up, but that could be resolved as his guts wake up more and start gaining motility. We are praying this is very short-term! We are continuing to offer him bottles first before feeding him through the tube.

  

  Physical Therapy had him down on the mat, supported sitting with Mommy!

  

  He was super good at ripping out the feeding tube, but we tried to keep his hands in mittens all the time and his arms swaddled if we weren't going to be right next to him.
  
  

  He will most likely have to be on this formula for 6-8 weeks because of the chyle fluid. I'm hoping we can get him used to taking the formula by mouth much sooner than that!

  
  

  Jan 28

  
  

  Roman got his chest tube out this morning! Yay and praise God for that! Also he totally said "Mama" and I had a nurse witness it! I'm sure it won't just be happening all the time now or anything, but clear as day, God gave me that gift this morning. He must know how weak I am that I needed that carrot to keep going through this hard time.

  
  

  He vomited a lot last night and yesterday with this NG tube in place. This is truly difficult because it comes out his mouth and nose all at the same time. He did this when he was younger, but a much smaller quantity and he had totally stopped doing this since shortly after he got on the Gerber formula. They have a wonderful suction here at the hospital, but a bulb syringe is not going to cut it for this at home. It's a two edged sword. He needs this formula to keep him alive, and yet it's making him miserable.

  
  

  We ask for continued prayers for his body to accept this formula and to start eating my mouth enough to get this tube out. *I emailed our friend, Mother Magdalene, who has been praying for him.  She emailed back to ask our dear Mother Mary to pray for Roman to get the nutrition that he needs just like she did for the child Jesus.*  

  
  

  
  

  
  

  Looks like we'll be here till at least Monday.

  
  

  Jan 29

  
  

  No big changes today, but there was a slight increase in how much he took from the bottle and a slight decrease in the amount times he puked. His dad said it seemed to be more spit up volume than vomiting volume. Keep praying for a miracle with his digestion and his intake by mouth. I know God is going to take care of his child!

  
  

  The best news is that he has been so happy!!! He seems to feel so much better. He even got to go for a stroller ride today. I will attach the pictures when I get home to this post. He loved it!  *He can now go with us when we need to put his swaddles in the laundry.  All he is attached to are monitors and there is a box that comes off and can go in the bottom of the stroller.  "Child Life" comes by everyday to see if we need anything to make him happy or more comfortable.  That is who brought us the mobile that he has loved looking at as he falls asleep, the bouncy seat, the floor mat, other toys, and the stroller.*

  

  *Brian and I talked the doctors into letting us try a day without the NG-tube to see if that helped.  The tube was feeding him over the course of an hour after our bottle attempt.  This was causing him not to be hungry by the next feeding.  He also seemed to not like to swallow with the tube in his throat.  I thought it was setting him up for failure.  If we were going to be discharged with the NG-tube, the nurses were going to have to train us to put it in anyway.  So during rounds, I proposed that we take it out for a while and see if he eats better now.  They agreed and so I got to feed him by mouth all day and he did improve.  He did not gain even an ounce though with or without the tube which is frustrating.  However, they didn't put the tube back in!  We continued to advocate for Roman and worked with the dietitian, speech pathologists, and the physical therapist to get him strong enough to go home.  We could see a light and the end of this hospital tunnel!  On January 30th, Brian and I talked about how much better he'd do if he was home since all his medical issues seemed to be resolved.  All they were waiting on was him to eat better.  We decided to talk to them during rounds the next morning.  It was Brian's turn to stay and so I decided to come extra early to be there for rounds and pick up donuts for the nurses as a "Thank you and Good-bye."  I was sure they were going to let us go home.  During rounds we made our play for discharge and the attending doctor said, "Maybe tomorrow."  Later that morning, his surgeons came by and we told them our reasons for wanting to go home.  One of them just walked out into the hallway and said, "These guys are going home today, okay?"  And that was it, we began the discharge process.*

  

  Feb 2

  
  

  We are home! We came home Monday night, but have been super busy getting settled. Roman still fights all his medications and we're struggling to get in the minimum daily ounces most days (*Thy told us he needs to take in 20-24oz.*), but we're home and in charge of our own schedule and in our own beds! Thank you, God!

  
  

  Keep praying for him to eat! I'll continue to update this site if and when we get follow ups or status changes. We're supposed to meet with the surgeons for a post op visit tomorrow. *This didn't happen because of an ice storm.  They called and cancelled.*

  
  

  Feb 17

  
  

  We had our cardiology follow up and his 6-month visit. He's doing great, getting stronger every day, but still not gaining weight for some reason. He is eating in the given target range, ounces wise. He's still on the prescription formula for another two and a half weeks. We are hopeful that when we switch back to the higher fat formula that he will start gaining weight again. I am also tracking his weight at home now to see if I see any difference at all from day to day. He's been given clearance to taste some baby foods, but basically just testing foods that have no fats in them. They call it food play.  

  
  

  We still have to be careful how we pick him up and hold him. However, he is allowed to be on his tummy and he started rolling back to front more often.

  
  

  Thanks for the prayers! He's got 5 weeks until his next weight check, so pray he gains by then!