Chapter 6: Still Waiting For Surgery

On day #16 in the ICU (a Tuesday), neurology performed a couple of neurological tests. The first was a VEP (visual evoked potential) where they placed probes on Josh's head and goggles over his eyes. There was flashing lights inside the goggles and the probes would record whether his brain reacted to the stimuli. His brain did react which meant that he was not blind. (Yay!) We still didn't know what he could see (light, shadows, blurred images, etc.) but he could definitely see something. Very positive news.

I should mention that the only way to find out exactly what Josh can see, is by him telling us. How he acts and behaves and how he reacts to his environment can give us clues as to how well he can see, but ultimately he will be the one to tell us what he can or cannot see.

I should also clarify that it's not his vision that is the concern. His eyes have the ability to see just fine it's how the brain interprets what the eyes see that's the concern. Incidently, Josh's vision has been tested and he is mildly nearsighted and will likely need glasses at some point. However his nearsightedness has everything to do with bad genes (I am badly nearsighted) and nothing to do with the brain damage.

The second neurological test was a SSEP (somatosensory evoked potential) of the lower limbs. Again probes were placed on his head and a little electrode thingy was placed on his lower legs (one leg at a time). The test was to see if whether electrical stimulation of the tibial nerve was transmitted to the sensory cortex of his brain. Both right and left tibial nerves caused a reaction in the brain. (Yay!)

Good news on Tuesday morning was followed by bad news Tuesday afternoon. Well I guess I shouldn't say bad news, it was disappointing news. Josh's surgery had been scheduled for the following day (Wednesday) however we were informed by the CV surgery nurse (Tara) that Josh's surgery had been postponed until Thursday morning. Apparently cardiac surgeries are usually performed on Tuesdays and Thursdays and staffing is arranged to better handle a cardiac post-op patient on these days. Josh's surgery had been booked for Wednesday to "squeeze him in" that week. The child booked for surgery on the Thursday had become ill and was not able to have surgery as planned so they moved Josh into their OR time. The news was a little disappointing as we were eager to move ahead with the surgery but figured at least he had one more day to get stronger.

My mom was really disappointed when she heard that Josh's surgery had been postponed another day. She was originally supposed to return to Vancouver on Sept. 25th but had extended her trip until Sept. 30th so she could be here for the surgery. A later surgery day meant less time here with us during his recovery.

When my mom and I arrived at the PICU Wednesday morning ( day #17) we were surprised [and amused] to see Josh sporting a mohawk. I guess the night staff were having a bit of fun with him and decided to style his hair. I think they may have even used a styling product because I couldn't get his hair to lie flat after the novelty of it was over.

Later that morning it became clear that something was going on with Josh. He was having a hard time maintaining his O2 sats in the preferred 65-85% range. His sats were often dipping into the low 60's and then it would take a long time for them to come back up again, even with oxygen. He had to be put back on oxygen via nasal prongs but this time it was set at 2L. This was a big change considering his O2 sats had often been above 85% without oxygen in the days previous.

The ICU doctors ordered a chest X-ray to take a look at his lungs to make sure that they weren't missing anything. The lungs looked fine although they were a little bit 'wet'. They ordered and extra dose of Lasix to help rid some of the extra fluid.

As the day progressed Josh's O2 sats continued to be an issue. He was also quite fussy - more so than normal - and it was difficult to settle him. I don't think he napped at all that day.

Around 1530 Josh's sats started to drop into the 45-50% range. Now something was clearly going on. The doctors decided that they needed to take a look at Josh's heart so a stat echo was ordered. The echo revealed that Josh's PDA had closed (again) and there wasn't enough mixing of oxygenated and deoxygenated blood through the ASD. The cardiologists had hoped that if the PDA were to close again the atrial septostomy that they created on Sept. 10 would provide enough mixing of blood to satisfy Josh's needs. Unfortunately it did not. It turns out that Josh had an atrial aneurysm and the septostomy had been created through this aneurysm. Whenever Josh's heart pumped the flaps of the broken aneurysm folded together creating a very small opening for blood to mix.

The flurry of activity around Josh brought back memories of when we had first brought him in to emerg. Doctors are calling out verbal orders, nurses are quickly drawing up IV medications, preparing boluses of fluid, and calling the blood bank for 0-negative blood, while another wheels over the crash cart. It was really quite overwhelming and I couldn't believe it was happening again.

Josh was given a large loading dose of prostaglandins to try and re-open his ductus arteriosis (hence the need for the crash cart - prostaglandins can cause respiratory arrest). Luckily it worked and Josh's O2 sats slowly began to climb and were soon back in the 75-80% range. Josh was kept on a continuous infusion of prostaglandins which he would stay on until his surgery the following day.

That evening/night was a tough one for Josh. The stress of the day's events had taken its toll on his little body and you could tell that he just wasn't feeling good. He was so pale, he was irritable and difficult to soothe, and his heart rate was sky high (a side effect of the prostaglandins I think). If he was calm his heart rate was around 180 beats/min, but if he was crying and upset it would easily reach the 220-230 beats/min range. It really freaked me out to see his heart rate so high. That coupled with his need to be held and cuddled (probably because he felt so crummy) lead me to the decision to stay at the hospital all night. I knew it was going to be a rough night for him and I wanted him to be comfortable so he could get as much rest as possible before the surgery - even if it meant holding him all night long.

By morning Josh was doing a bit better. He didn't get much sleep but his heart rate was in a more reasonable range and his colour was much better. However he had started running a fever overnight of 39.1 Celsius and his temp remained the same at 0730 that morning. When Dr. Maharajh came by to check on Josh before surgery he didn't like that he was running a fever. Prostaglandins can cause a low grade fever, however he was to have received a large dose of steroids at 0200 in preparation for his surgery which would lower his temp. Because he was running a fever even after the steroids, Dr. Maharajh did not feel comfortable taking Josh into the OR for fear that he was developing an infection of some sort. Surgery was once again cancelled. (We found out a short while later that his night nurse had never given him his large dose steroid as ordered. She thought that they could just give it to him in the OR, but he was supposed to get one dose at 0200 and then a second dose at 0800 in the OR.)

Dr. Maharajh ordered blood work - what he was specifically interested in was his WBC (white blood cell) count and blood cultures. His WBC came back at a whopping 24.5. Two days earlier his WBC's had only been 13. It appeared that Dr. Maharajh had made the right call - it seemed as though Josh had some sort of infection, but the result of the blood cultures were needed to confirm it.

Understandably I was really frustrated and disappointed that Josh's surgery had again been cancelled. I was even a little upset because if the surgery had just gone ahead on the Wednesday like originally planned the whole issue of his PDA closing again (and the aftermath) could have been avoided. Dr. Maharajh must have sensed my disappointment because he took me aside and explained his concerns with taking Josh into the OR when running a fever. A combination of the high dose steroids and being put on the heart-lung machine would basically wipe out Josh's immune system for at least a few days after surgery. If Josh did have some sort of infection and the surgery had gone ahead on the Wednesday as planned before any symptoms had developed it could have had fatal consequences, as Josh's body would have no way to fight it off. After hearing this my frustration quickly turned to relief and as the day progressed that relief increased ten-fold as it was clear that infection or not, Josh was in no condition to undergo open heart surgery. He was exhausted, he was weak and his body was still struggling to recover from the stress of the day before.

So what did all this mean? The best case scenario: there was no infection - the fever was a side effect of the prostaglandins and the elevated WBC was a result of stress. If this was the case then the surgery would go ahead on the following Tuesday at the earliest. Worst case scenario: blood cultures come back positive for an infection and Josh would need antibiotics for 7-10 days to clear it before he could have surgery. Obviously I was praying for the best case scenario and a few days later when the results of the blood cultures came back those prayers were answered. There was no infection and surgery was booked for Tuesday October 2.

Once Josh had been cleared for infection he was placed in protective isolation to limit his exposure to germs until his surgery. I was still able to be with him but it just limited the amount of traffic around his bedside. I thought it was a great idea. Plus there was a little t.v. in there to help pass the time when Josh was napping :)

The evening of Monday October 1 - the night before his surgery - was one of mixed emotions. I was happy that Josh's heart was finally going to get fixed, but nervous about how the surgery would go and what the recovery process would be like. The ICU doctors had been preparing me for what to expect after surgery. Since Josh had a rough few weeks already they expected a lengthy recovery time and told me not to be surprised if he had to spend another 1 1/2 - 2 weeks in the ICU (at least one of which he would likely be on the ventilator) and then as much as a month (or more) on the surgical floor before being discharged. It wasn't really a process I was looking forward to, but I was prepared to do whatever was needed to get Josh through it.

I was also going to do everything in my power to make sure that his surgery wasn't cancelled again. I knew Josh was supposed to receive his first dose of the high dose steroid at 0200 and I realized that he didn't have an IV line. Since there was the issue of him not receiving it the last time around I wanted to make sure that it wouldn't get missed, so when Josh's nurse came by the room around 2100 to check on him I mentioned that he was to receive the IV steroid at 0200 but that he had no IV access. ( He had a PICC line but the prostaglandins was infusing through it and required a dedicated line). At first the nurse denied that he had any medications ordered for that time but after a quick review of his kardex corrected herself. She said that she would page vascular access to start an IV - which is ultimately what I wanted her to do, but thought it would be best to point her in the right direction and let her make that decision on her own. I was walking that fine line between being a concerned, well-informed parent and being an over-bearing, know-it-all parent.

The vascular access nurse came by about an hour later, Josh got a new IV line and his nurse knew to give him his steroid. Everything seemed in order, Josh had drifted off to sleep and so I headed home to try and get some rest before his surgery the following morning.