As our remaining time with him was drawing to a close I considered waking him up for a little cuddle time, but eventually decided against it. Josh wasn't allowed to have anything to eat before surgery and I knew if he woke up he would be hungry and I really didn't want to cause him any undue stress. He looked so calm and comfortable, I thought I should leave him be. And so I just sat at his bedside watching him sleep, wondering when I would be able to hold him again.Around 0730 the anesthesiologist came by to check on Josh and to give me a run down of his role during the surgery. Shortly after, Dr. Maharajh came by. All looked in order - the surgery was a go. Finally, no more complications; no more delays.
At 0800 the team arrived to escort Josh to the OR. My mom and I were able to follow them as they wheeled his crib to the operating suite and wouldn't you believe just as they were pushing him down the hall, he woke up. He wasn't crying - just happy and content. Once we arrived at the operating suite the team paused to allow us time to say goodbye. That was one of the hardest things that I have ever had to do. I wanted to be strong - I didn't want Josh to see me as the emotional wreck that I was, so fighting back tears I leaned in and gave him a kiss as I softly stroked his hair. And with that he was gone - whisked off down the hall while my mom and I were left standing there, tears running down our cheeks. We slowly made our way to the Cardiology parent room where we would wait for the duration of the surgery. And so began the longest and most stressful day I have ever had to endure.
After I pulled myself together I called Robb on his cell (who was sitting in the van in the parking lot as usual - the poor guy) to tell him that Josh had been taken to the OR. Tara (the CV surgery nurse) would be stopping by periodically to give us updates on the surgery and to tell us how everything was going. I told Robb that I would call him after our first update.
Tara came by for the first time around 0930 to give us an update. The prep for surgery had been completed, Josh's chest was opened, his heart exposed and they were working on the final preparations before the arterial switch could be performed. So far everything had gone smoothly and we were quite pleased. Tara headed back to the OR and I called Robb with the update.
About an hour later Tara returned with some more news, but this time she came with Claudette (the CV surgery social worker). That should have been my first clue that something was wrong, but oblivious I greeted them both with a big smile. Tara sat down, her tone steady and somber - I was beginning to realize something wasn't right. I held my breath as I waited for what would surely be bad news.
Tara began by telling us that they had run into some complications. The team was trying to heparinize Josh's blood (heparin is a blood thinner) before putting him on the heart and lung machine, however his blood was not responding to the heparin. After giving him a large dose of heparin through his central line, the ACT (Actual Clotting Time) of his blood had not changed. [They later learned that the central line was actually in his pleural cavity rather than in his circulatory system and was unusable]. They gave him a second dose of heparin through one of the lines going directly into his heart, but again the ACT did not change. At this point Josh was already hooked up to the heart and lung machine but they couldn't start it and begin the surgery until they could effectively heparinize his blood because otherwise his blood would clot as soon as it hit the machine.
Dr. Maharajh suspected that Josh had an Antithrombin III deficiency and as a result his blood would not react to the heparin. We were informed that they gave Josh a transfusion of fresh frozen plasma (which contained the missing antithrombin III), they gave it a little time to mix into Josh's circulation and then they gave him a third dose of heparin. Finally the ACT was starting to respond.
Before the heart and lung machine could be started the ACT needs to be over 400 seconds. Anything less than that carries the risk of the blood clotting when it runs through the machine. At some point while they were waiting for Josh's ACT to reach this the ideal range, Josh's condition began to deteriorate. We were told that there was 20-30 seconds where Josh "really didn't look good" and with his ACT between 300 and 350 seconds [and trending upwards] Dr. Maharajh made the quick decision to turn on the heart and lung machine and "see what happens".
Now for Dr. Maharajh to make that kind of call leads me to suspect that they must have almost lost Josh. If his blood were to clot as it cycled through the machine they would have lost him, which makes me think that they would have likely lost him had they done nothing at all. It was a very scary thought - too scary to even confirm my suspicions with Tara. Luckily though Josh's blood did not clot in the machine and they were able to move on with the surgery.
It goes without saying that I was a nervous wreck. The transition onto the heart and lung machine did not go smoothly and while I knew that he was fine for the time being as they repaired his heart since the machine was taking care of everything, it was the transition off the machine that I was worried about. Dr. Maharajh had told us from the beginning that this type of cardiac surgery would either go very very well, or very very badly. It was all or nothing and there really wasn't anything in between. I tried so hard to stay positive and to remain optimistic, but my mind couldn't help but wander towards the unimaginable - what would I do if I lost him? The stress was unbelievable. My stomach was in knots.
The arterial switch operation took about three hours to complete. Tara had come by about half way through to let us know that everything was going well. She also talked to us about the available options for taking Josh off the heart and lung machine. If Josh's heart was unable to handle a full circulatory load then they could slowly reperfuse his body by gradually taking him off the heart and lung machine. So basically his heart does some of the work and the machine does the rest. This process takes about half the total time that was spent on the machine. Josh was on the machine for 3 hours so slow reperfusion would take 1 1/2 hours. It was suspected that Josh would require slow reperfusion so it was comforting to know that this was an option should Josh need it.
Around 1430 Tara returned with some great news. The arterial switch was completed and Josh was off the heart and lung machine. His heart started beating again on its own and unbelievably was able to handle the full circulatory load right from the get-go. Slowly reperfusing his body was not necessary. Josh was doing way better than expected. It was a HUGE relief to hear this and I could instantly feel an enormous weight being lifted off my shoulders. I cannot even begin to explain the happiness that I felt. I knew that Josh was still in surgery and that he still had a long road ahead of him, but this was one giant step in the right direction.
Josh was out of surgery and back in the ICU around 1700. Dr. Maharajh and his team joined us in the cardiology parent room around 1800 to give us a debriefing on the surgery. Even Robb was there! He came up shortly after we heard that Josh was off the heart and lung machine and was doing well. Dr. Maharajh talked a little bit about the difficulty he had when trying to heparinize Josh's blood and said that he suspected the antithrombin III deficiency was due to the fact that he's been on blood thinners for a few weeks which depleted the amount of the protein available. Other than that the surgery itself went smoothly which resulted in a good surgical repair. The only negative thing that he had to report was that he had a little bit of trouble ligating the PDA and he was pretty sure that he damaged the nerve innervating Josh's left vocal chord, which would result in a paralyzed vocal chord. Josh would still be able to speak, but his voice would be hoarse. Dr. Maharajh said that his choices during the surgery were to do what he needed to do to ligate the PDA and risk damaging the nerve, or don't and his aorta would bleed. Yeah, I'd say he made the right choice.
As it turns out the nerve must not have been damaged like he thought because Josh's voice is perfectly normal - no hoarseness. What's even more amazing is what little support Josh's heart needed to maintain systemic pressure. As you may recall there was great concern as to whether Josh's heart would be strong enough to maintain systemic pressure due to physiologic decompensation. Dr. Maharajh (as well as the ICU docs) were certain that Josh would need milrinone, epinephrine and dopamine to support his heart. It was just a question of how much of each medication would he need. Being the little fighter that he is, Josh only required milrinone which apparently is a standard medication after open heart surgery. What an amazing little guy!
After the debriefing we were able to go in the ICU to see Josh. I think it was around 1815. It had been a very long day. As I have mentioned before Robb hates hospitals and didn't like to see Josh hooked up to machines, tubes, etc. Tara had told us several times about how good Josh looked. She said that he was awake and looking around, wasn't swollen or puffy and really looked great. Since we were expecting Josh to be quite sick for a while after surgery (he was likely to get puffy again, require the ventilator, and so on) I encouraged Robb to come into the ICU to see Josh. Not knowing what the next several days had in store I thought it would be a good time for Robb to see him.
Robb was agreeable but I could tell that he had some reservations. As an added incentive I reminded Robb that the ICU has multiple points of entry/exit so if as he was walking up to Josh's bedside he lost his nerve or felt that he couldn't handle it he could just keep on walking right through one of the alternate exits. This seemed to clinch it, Robb decided to come in with us.
As I entered the ICU and approached Joshua's bedside, I was speechless. I couldn't believe how many tubes, wires and lines were attached to his little body. There were all sorts of IV lines, there was blood transfusing, he had a chest tube, he had pacing wires, he had two atrial lines, he was intubated, and he had two large strips on his forehead measuring the O2 sats in his brain and despite having just endured open heart surgery he was awake and looking around. I'll take Tara's word for it that Josh looked "really good". They do more than 100 heart surgeries a year so she would be the one to know, but he didn't look to good to me. It broke my heart.
As the initial shock of seeing Josh for the first time after surgery began to dissipate, I realized that Robb too had come in to see him. I turned toward where he had been standing but he was gone. No surprise really, but I suddenly felt bad for putting so much pressure on him to come in and see Josh.
Though it was nice that Josh was awake and able to see me right after surgery it quickly became apparent that he was uncomfortable and in all likelihood in considerable pain. He couldn't move his body, he couldn't cry, he couldn't communicate in any way but he didn't have to. His eyes told it all - the discomfort, the panic, the fear. That's a lot of emotion for a 5 week old. Tears still well up in my eyes just thinking about how awful he must have felt.
Thankfully one of the ICU doctors also sensed his discomfort and decided to double his morphine, which almost immediately put him to sleep. It was a relief to see him close his eyes because it was an indication that his pain was being better controlled and maybe he could get some rest.
Robb and I both spent the night at the hospital. It was something that we had planned on doing since the beginning - to spend that first night post-op at CHEO. We don't live far from the hospital, maybe a 10 minute drive, but a lot of things can happen in 10 minutes and we wanted to be right there should something happen. Luckily it didn't. Josh had a great night - no complications. Finally things seemed to be on track.
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