I have the best of intentions to keep this blog up to date, and somehow between 3 kids, all of Emmett’s appointments, and life in general, it never goes as planned. It seems like I blink and a few months have gone by.
We are now past Emmett’s second-stage open heart surgery (called the Glenn) and out of what is called “interstage” (the time between the first band or shunt surgery and the Glenn/hemi-Fontan surgery). Interstage is not a particularly fun period to be in, as it’s when these heart babies are most at risk and therefore require a lot of monitoring and micromanaging. We are so so thankful that this most recent surgery is done and over with, and most importantly that things went smoothly!
Prior to open heart surgery, it is routine to have a heart catherization (heart cath) done, as it gives useful information to the surgeon regarding exact heart anatomy, pressures in the heart and lungs, etc. This is also done to ensure that he is a good candidate for the surgery itself. They like to have the heart cath done about a month or less prior to the surgery so that the information is as up to date as possible. We were initially planning for the cath to be in April with surgery in May, however Emmett’s sats started trending downwards which is an indication that he will be ready for surgery soon, therefore his cath was pushed up to the end of March with surgery planned for end of April. During Emmett’s heart cath, he was placed under general anesthesia, although for older patients that may not necessarily be the case. During a heart cath, the doctor inserts a flexible tube called a catheter into a blood vessel in the groin and threads it to the heart. They then inject contrast dye to help visualize everything in order to get the pictures and videos of the heart as needed.
The procedure itself took a few hours, and we had to stay for several hours afterwards in post-op for observation. His cardiologist said that everything looked as expected, the pressures were great, and he is a favorable candidate for this next surgery. This was an unspoken worry that I had, because there are some babies who for one reason or another are not candidates; I did not have the courage to ask what happens if he is not a candidate, but I’m afraid the answer is they go down the heart transplant path. It was a great relief to hear that things looked “good” and we can proceed with our plan. Emmett did not have to stay overnight like we initially planned as his cath was first thing, he did well, and they did not need to do any interventions when they were in there (which depending on what they find as they’re in there, they sometimes do). It was a very nice surprise to learn that we were able to go home that same day!
We then had another month to wait until surgery date. The week prior I received a call asking if we would be okay moving Emmett’s surgery date back a week or so. After I explained that my parents would be flying in internationally to come help watch our other children, they said we could keep our surgery date. However I got another call the week of stating that he would be bumped by one day, as there was a transplant case that needed to get in ASAP, and since Emmett was not critical he was shuffled down the line. One day really does not make a difference, yet the anxious anticipation just keeps building when something like this happens. I also felt very emotional and grateful that Emmett was not the transplant case that needed the spot.
For 5 days prior to surgery we had to hold Emmett’s aspirin (blood thinner) and for 3 days prior to surgery we had to administer an antibiotic cream in his nose twice a day. Emmett’s pre-op appointment was then on Thursday, April 28th. We drove down to Indy that morning for a noon appointment. We started off at the lab for blood work. Poor Emmett was stuck twice but they were unable to get what they needed. The phlebotomist ended up calling up to the pre-op floor and was told that they would just get labs the next day once he was put under. After that we headed to radiology to get some chest x-rays, and finally to the pre-op floor to meet with a whole slew of people. We met with a nurse to complete some standard checks, go over medical history and medications, a PA on the surgery team to answer questions, someone from the anesthesia team to go over anesthesia and sign consent, and were supposed to meet with the surgeon himself but he was held up so we met with a cardiac surgery resident instead and signed additional consent forms. To add to the stress of everything, we were told that his surgery may or may not happen the next day as planned because of bed availability/staffing issues on the CVICU. At one point during the pre-op appointment we were told there was a 50/50 chance of it happening; by the time we left that appointment we were told 90/10. That night, we were instructed to give him a bath and then wipe him down with surgical antibacterial wipes. His cutoff time for going NPO (nothing by mouth) was 3:30am for breastmilk. I remember laying him down that night and thinking I just want to freeze time, just watch him all night because I didn’t want tomorrow to come. Emmett slept horribly that night–it was almost like he knew–and therefore I did get to watch him for most of the night (be careful what you wish for).
Our arrival time was 6am the next morning at the hospital. The anxiety that you feel as you sit and wait for them to take your baby off to open heart surgery is indescribable. The minutes tick by slowly as you are consumed by fear, yet before you know it they’re telling you “it’s time” and you’re left internally screaming as you hand him over.
Once they took him away (at 7:30am), Taylor and I walked down and checked in at the family waiting lounge. All the memories of his first two surgeries came rushing back as we sat down in the same exact seating area. A rounding nurse came by every hour starting at 9am to give updates on the progress. The first update was just that they had put him to sleep and had started 2 peripheral IV’s, an arterial line, a central line (right groin), placed a catheter, and were getting ready for prep and start of surgery. The next update in the 10 o’clock hour was that he was open and they were getting ready to set up the tubes for the bypass machine. Then in the 11 o’clock hour that they were well into the repair, everything was going well at the time. Around 12:30 we were told that he is off the heart-lung bypass machine and was in the process of being closed up. We learned that he has one drainage tube and pacer wires were placed. At 1:00pm his surgeon, Dr. Turrentine came out to talk with us and told us that everything went well, that they did not need to stop his heart because he ended up doing something a bit differently than planned based on his anatomy (with Emmett having 2 superior vena cava (SVC’s) they are smaller than if he were to have only one and therefore his surgeon ended up doing a bi-directional bi-lateral Glenn as opposed to a hemi-Fontan on the right side).
We found out that Emmett left the OR at 12:45 and was taken to his room in the CVICU, where we were able join him after he was settled around 2:30pm. Seeing him for the first time after surgery is like getting a punch to the gut. The only thing that made it a bit easier is that we’d been through it before and we knew what to expect. However, it is heartbreaking to see your child helpless, unconscious, attached to monitors, with tubes and wires sticking out of their little body. His nurse went over his lines, wires, tubes, etc. with us. He was still intubated, on the ventilator at this point but she told us they are hoping to wean him off the vent today/tonight and have already started lowering the vent settings.
When we arrived back at the hospital the next morning (we stayed at my sister-in-law’s house) we learned that overnight he was extubated/off the ventilator, and on the high-flow oxygen. He was still slightly sedated and were told he would be for a while because the first 24-48 hours they can be very irritable and inconsolable the nurse said. Thankfully Emmett seemed very sleepy and did not exhibit any of those typical first-few-day symptoms. Due to the pressure changes following surgery, babies after the Glenn are prone to swelling in the head and upper extremities as well as painful headaches, sometimes referred to as “Glenn head”. The headaches can last for several days to a few weeks, and are treated with pain medication and keeping the head elevated whenever possible. Emmett did have some swelling, but the nurses said it can sometimes be much worse, so we were constantly thankful that he was doing so well considering.
The only “complication” that Emmett experienced post-surgery was extra fluid in the lungs that they were keeping an eye on. They used diuretics to help him flush out some of fluid and dry up his lungs which took a while to start working. They were closely watching his urine output from his catheter and there was one night early on when our nurse told us if he doesn’t start peeing more they will have to place another chest tube to help drain it. Luckily he finally started peeing adequate amounts and he did not need the additional chest tube. After that his chest x-rays started showing improvements and eventually they were able to take the catheter out.
Emmett had breastmilk via a bottle the day after surgery and two days after surgery was able to resume breastfeeding. Over the next few days he started losing more of his lines (his picc line IV in his foot he kicked out himself) and the flow of oxygen was decreased gradually as well. He continued with daily labs, chest x-rays, and pain meds. On Tuesday (4 days post-op) we were told that Emmett was ready for the step-down unit (aka moved out of the CVICU) however there were no beds available so we stayed put. Wednesday was a big day because overnight he officially lost his nasal cannula (oxygen support), his sats were finally up to to 80’s (up until then he was satting in the 70’s), his chest tube and pacer wires were removed, and he was able to transfer to the step-down unit.
Thursday we had a big surprise– an NP from the CV surgery team let us know that Emmett was ready for discharge! Emmett had an echo done that morning to confirm that everything looked good, they removed his last IV site, we filled his prescriptions, and handed in the infant scale and iPad since we were also getting discharged from the home monitoring program. We couldn’t believe that on day 6 post-op we were able to take Emmett home! We are just in awe of his strength, resilience, and sweet spirit.
If you’re reading this and are a few steps behind us on a similar journey with an open heart surgery coming up: I know you’re scared. Terrified. You’re trying to hold it together. Remind yourself that your child is strong. You are strong. Focus on the “success” stories and trust that soon you will be on the other side of it too. Sending you love.