On Tuesday, Samuel had his PDA closed at Children’s Hospital, so now he’s into recovery. I visited Samuel today in the hospital with my dad, Sammy’s grandpa. Kristen got some sleep in the morning and spent more time today with Charlie.
Samuel still had his breathing tube, his arterial line and his two IV’s. He’s still on morphine for pain, but they’re down to a very small amount. The doctor told us that they are hoping to wean him off the morphine and breathing tube today.
He still looks very puffy, though it’s less than Wednesday. We hopefully should see some more progress on Friday and each day it will get better.
The cardiac nurses came by to change the dressing on his incision. The incision was about two inches long. I managed to snap some photos below.
Samuel resting on Thursday.
A view of his incision on the right. The left “x” is where his chest tube was on Wednesday.
A closer look at Sammy. He’s very puffy right now.
After visiting with Sammy we went to visit with Charlie at the other hospital in Walnut Creek. The doctor said she called Dr. Nash, and his circumcision was scheduled for 3:30pm today.
That was an unexpected surprise.
I held him for while and then just about 4pm, Dr. Nash was ready to go. My dad and I both went with him and witnessed the event. I’ve never seen a circumcision before and I’m glad I’ll only have to see one more (Samuel). Dr. Nash told jokes to keep us comfortable, but I was somewhere on the verge of crying and having a heart attack. Right after Dr. Nash injected some lidocaine, Charlie tried to pee on him. Dr. Nash said it was his only and last defense!
Dr. Nash did a great job, but it was a very stressful event for us to witness. No pictures of this, obviously!
The fact he had this done means he’s close to being able to come home. A date isn’t set yet, but I expect to see him home next week.
I thought I’d post a late Tuesday evening update for everyone. It was quite the day for the Mazza family – especially Samuel. Today he had his PDA ligation surgery, where they closed off his PDA.
Kristen and I got to the hospital just past 9am, as we were told there was a chance he may go into surgery earlier than the scheduled 12pm surgery.It turned out the morning surgery went off without any delays, so we were second in line. It gave Kristen about two hours of hold time with Samuel.
We had visits from multiple social workers, multiple nurses and a few doctors, including the pediatric cardiologist, Dr. Olaf Reinhartz, and the anesthesiologist, Dr. Amit Gupta. Dr. Reinhartz was fairly short, explaining the surgery and reviewing some paperwork. He said it would be about an hour of preparation with IV’s and a central line being installed, but once he went into the room it would be about 45 minutes or so from start to finish. Dr. Gupta explained how the anesthesia worked, what he would do, potential blood transfusions, if necessary, etc.
They took Samuel away at 12:45. We got to kiss him and give him a hug, and then into the OR he went. We reasonably expected it would be a few hours before they called back looking for us. Dr. Reinhartz said he’d come by and tell us how the surgery went. So Kristen and I went outside to relax a bit, and get some fresh air. And we called Dr. Tran at Walnut Creek to check on some test results.
During this break, Dr. Tran told us that Charlie had been reduced yesterday from 2.0 liters per minute of flow down to 0.5 liters per minute, and he was doing so well they were trying him with all oxygen and flow turned off. He was doing awesome, taking his feedings without any trouble. So that was a piece of good news in the middle of our day.
After that call, I grabbed some lunch while Kristen went to pump. Lunch was brought to Kristen in the NICU.
As I was eating, at 1:50, Kristen texted me to say that the surgery was done and he was coming back shortly. So I scarfed down my chicken quesadilla and hurried back to the NICU. I made it about 10 minutes before Sammy arrived. The total time away was about 1.5 hours – far less than the 2-3 hours they expected.
It took the nurses and doctors about 20 minutes to get him settled in and while that was happening Dr. Reinhartz came by to talk to us. He said the PDA was very large, but it was closed and the surgery went very smoothly without any complications at all. I later spoke to another cardiologist who checked, and said the PDA was “4+”, meaning it was more than 4mm. The PDA was originally 3mm and went down to 1.8, so hearing it was 4mm was very surprising. This other doctor said the PDA was actually larger than some of the main arteries going into the heart, so this surgery would make a big difference on his well-being.
Samuel had IV’s in each of his feet, and a central line into a main artery in his right arm. This would be used to take any blood samples they would need without sticking him anymore (he’s been stuck enough with needles!). He also had a drainage line coming from his left side, near where the incision was made. He needs this for any swelling that may take place, so it’s a relief valve of sorts. And finally he had a breathing tube down his throat.
When he came out of surgery, he wasn’t doing any breathing on his own – the ventilator was doing everything for him. He just had too much medicine in him. When we called about 8:30pm on Tuesday to check on him, the breathing tube wasn’t doing anything – it was all Sammy. Maybe they’ll take it out tomorrow.
Kristen and I stayed for a bit of time after he came out, but we realized quickly there wouldn’t be much for us to do. He needed rest and wasn’t going to be able to interact with us, so we went to meet my dad, Melinda and Jacob over in Charlie’s room in Walnut Creek.
Hopefully we’ll start to see Samuel show signs of improvement on Wednesday. We can’t wait to get him back to Walnut Creek, and then finally to our house.
Tuesday is a special day. It’s the two-month birthday for the boys. But for Samuel, it’s another special day. It’s the day he’ll have surgery on his heart to repair the Patent Ductus Arteriosis (PDA).
Sammy’s surgery is slated sometime between 8am and 12pm. He’s slated to be the second surgery of the day, but could move up to first if the first child has problems, isn’t ready, doesn’t show up, etc. The doctors suggest that to be safe we should be at the hospital by 9am, so it will be a long day of waiting.
The nurse called us on Monday to review the risks of the surgery. This is something they do all the time, but there are many things that could go wrong, including impacting his vocal chords, infection or death. We don’t want to think about those things.
Doctors say they’ll know right away that the surgery is a success. They cut him open in the back, between the 3rd and 4th ribs, they’ll deflate his lung, clamp the PDA, sew it shut, check for blood flow, reinflate his lung and then sew him shut. He’ll be on an IV, a central line and most likely a catheter, not to mention a breathing tube / ventilator. It takes more than an hour of prep, but the surgery will only be about 45 minutes once they start. We were told it was faster before, but that was clarified on Monday.
On Monday Samuel got to meet his Grandpa Dave. Samuel’s middle name is David, and is named after him. It was a special meeting for my father, and he was quite emotional seeing his grandson in this state. I look forward to showing off Samuel in a better state in a few days when the PDA is closed and his blood and oxygen flow much better through his body.
On Friday morning while I was working, Kristen and my mother-in-law, Karen, went to visit the boys in the hospital. When they arrived home, Kristen said Dr. Tran wanted to talk to us as Sammy’s taken a step backwards. So I wrapped up a couple more meetings and raced to the hospital.
Dr. Tran said that Samuel was having bigger issues with his heart. The right side was pumping much harder. She had ordered an ultrasound and an echo, and two cardiologists had reviewed the echo. The verdict? Sammy’s PDA has grown! And she wanted to send him to another hospital for surgery!
If you recall, a PDA is Patent Ductus Arteriosis connects the two major arteries in the heart. The American Heart Association has a nice write-up on PDA’s if you’re interested in reading more. Samuel’s PDA was treated with Indomethacin several weeks ago and it shrunk it pretty good. However the doctors always said it wan’t closed and it could be redirecting blood that is meant for other parts of the body.
It seems that on Thursday or early Friday, the partial closure of the PDA lost its closure, and it got bigger. That means more blood was flowing to his lungs instead of flowing to other parts of his body. His lungs are getting saturated, like a sponge, and they’re working extra hard. Medicine won’t help at this stage of his development and all that’s really left is surgery.
The surgery is pretty straightforward. I’ve watched it on Youtube and the entire procedure takes 10 or 15 minutes. If you’re interested, here’s a video of another PDA closure from Miami Children’s Hospital about 7 years ago.
They say it takes longer to prep and scrub in than the surgery itself. It’s a dangerous procedure in that Samuel will need to be put under, and he’ll need a breathing tube inserted down his throat.
So with our consent Dr. Tran called the Benioff Children’s Hospital in Oakland, CA and they sent an ambulance to take Samuel. I couldn’t ride with him, but we met up with him a bit later. The transport crew showed up, packed him up and took him away. We thought the surgery would take place today or tomorrow, but after he arrived they said he’s tentatively scheduled for the operation on Tuesday or Wednesday. It will be solidified on Monday.
Kristen tucks Sammy into his isolette for the ride to Oakland.
Sammy, strapped in and ready to go on his first car ride. Not exactly what we had in mind.
The transport unit is on a normal gurney, with lots of medical equipment.
The transport team is ready to go.
Once the surgery is completed, he’ll need to stay for at least a couple days to stabilize and begin recuperation.
There’s no guarantee that this will cure all Samuel’s problems. His lungs are still in dire need of growth and maturing, so they may give him some other pulmonary treatment. One doctor even told us he may get some sildenafil citrate to help with his hypertension. (In case you don’t recognize the name sildenafil citrate, you may recognize it’s other name: Viagra.)
We hope Sammy is moved back to Walnut Creek because there’s a significant difference in NICU. It’s clear we’ve been at a 5-star facility with a private room, ability to bring in anybody we choose, etc. Oakland is a fine facility, and very well respected, but there’s no private room, we can only name four people to a list of visitors, and that list can’t change ever, it’s in a sketchy part of town, etc. It’s just not as nice, but as long as the care is up to standard, then who cares?
Karen will go home after a week of helping out, and my Dad and Melinda are coming out on Sunday to stay with us for a week and help with Jacob, since he can’t go with us to Oakland either. Plus I’m sure my dad will enjoy time with his grandsons.
Keep Sammy in your thoughts and prayers. This boy needs some good news soon, and he’s going to be a fat kid with all the ice cream I’ve promised him for getting better quickly!