When I arrived at the hospital early Tuesday morning - I'm not sure what time it was, maybe 0730 - Josh's condition seemed to have stabilized. Well, at least his vitals were in a good range but I guess not much else had changed.
Tuesday was a busy day. Actually that whole first week was extremely busy. There were so many different teams involved in Josh's care and it seemed like there was always someone around assessing Josh and/or turning to me for information. I answered a lot of questions that week - many of them more than once. Questions about my pregnancy and delivery (specifically any complications), questions about our family health history, and questions about the day Josh got sick seemed to be the most popular. In retrospect even though that first week was so hectic and busy it probably helped distract me from dwelling on how sick Josh was.
At 1400 on Tuesday Robb and I had our first meeting with the cardiac surgeon (Dr. Maharajh) and his team. Dr. Maharajh went over in detail the nature of Josh's heart defect, and what would have to be done surgically to repair his heart. I think it was during this meeting that we first learned that surgery was booked for Friday September 14. Ideally Dr. Maharajh would have liked to perform the surgery Monday evening however Josh's body needed some time to recover from the stress of everything he went through. I wish I could remember exactly how Dr. Maharajh put it because I remember I found his choice of words shocking.....I think it was something to this effect: 'Ultimately I would have liked to do the surgery yesterday but when babies do what Josh did, that is when they try to die, they need some time to recover before they can have surgery.' It was the 'trying to die' part that shocked me - I wasn't expecting that and I found myself still lingering on that statement long after he said it.
During this meeting we learned that there is typically a three week window to perform the type of surgery Josh needed (Arterial Switch Operation), meaning the surgery should be performed within the first three weeks of life. Due to the anatomy of Josh's heart his left ventricle was pumping blood to the lungs which takes a lot less strength than pumping blood to the body, which is what would be required of it after surgery. The concern was that after three weeks outside the womb, the baby's heart begins to adapt to it's physiological workload. In other words, the left ventricle will weaken and will no longer be strong enough to pump blood to the body. At the time of our meeting Josh was two weeks and 3 days old - that three week window was almost closed. A surgery scheduled for Friday put us 1 day before he was 3 weeks old.
When I returned to the ICU after meeting with the surgeon I received some bad news from Dr. Foster. Josh had started having seizures, indicating neurological issues. When newborns have seizures it's pretty subtle. They don't have convulsive episodes like an adult. The only physical signs of Josh's seizures was occasional hand and lip twitching. An EEG (electroencephalogram) was performed to confirmed the seizure activity and an MRI would have to be done to investigate what was going on in his brain. When Dr. Maharajh heard of the seizure activity he decided to push the surgery to Saturday September 15 to give Josh's brain an extra day to rest. There's our three week window.
As I was talking with Dr. Foster about the seizures I noticed that Josh's belly was quite distended and that there was a red rash on the right side of his abdomen from his groin to his armpit. I think she noticed it at the same time I did. She grabbed a black marker and traced the border of the rash so they could see if it was getting worse. It turns out that the rash was cellulitis and they now suspected that Josh may also have issues with his gut. They had started to feed Josh my expressed breast milk through his NG tube (a tube in his nose that goes to his stomach) but had to stop until they could determine if his gut had sustained damage. Apparently the bowel is one of the first things to suffer during periods of hypoxia because blood flow is shunted away from the intestines in favour of the vital organs. The ICU doctors suspected that Josh may have NEC (necrotizing enterocolitis). I didn't really know much about it, but it didn't sound good. Abdominal X-rays were ordered every 8 hours to monitor for signs of NEC.On Wednesday Josh received another EEG. It showed that he was still having seizures, sometimes lasting as long as a minute (not a good sign). He was started on a continuous infusion of Versed to get the seizures under control and once the seizures were stabilized a couple of days later he was switched over to phenobarb three times a day. An MRI was done Wednesday afternoon to take a look at what was going on with his brain. The MRI showed several things. First, it showed a small bleed in his brain. It was only a small amount of blood and it was old - it probably happened during birth. Not really a big deal as long as it didn't start bleeding again. They would have to keep an eye on it. The MRI also revealed that Josh had suffered a venous stroke. As you may recall the metabolic acidosis had caused sluggish circulation so blood was draining from the brain much slower than normal. As a result, a clot had formed in one of the veins of his brain (they call it a sagittal sinus thrombosis) occluding that vein. Intracranial pressure began to build which caused his brain to swell and the swelling caused brain damage. It was all this trauma that caused the seizures. Actually at that point we weren't 100% sure that Josh had sustained brain damage. It was possible that most of the blackened areas on the MRI images were simply cerebral swelling rather than actual damage. We'd have to wait for the swelling to subside before knowing for sure.
As upsetting as this news was I have to say that I wasn't devastated. Not yet anyway. There was a chance that there was minimal to no damage and I was holding out hope that the stroke hadn't caused any permanent brain damage. In fact, I was so optimistic that I didn't really even entertain the idea that he may have brain damage. I somehow managed to convince myself that it was just cerebral swelling and in a week's time we'd see that there was no brain damage. Perhaps it was foolish or naive to be so blindly optimistic but I think it may have been a defense mechanism. I had been through an emotional rollercoaster the last few days and I don't think I could deal with yet another complication as serious as brain damage. I was in denial. I wasn't ready to deal with it.
Since Josh's seizures were not yet under control and there was a significant amount of cerebral swelling neurology decided that it was not safe for Josh to have open heart surgery at this time. His brain would need at least 7-10 days to rest and recover from the stroke. Another MRI would be done in about a week, the results of which would dictate what would happen next. In the meantime Josh was started on a blood thinner to treat both the clot in his brain and the clot in his groin.
On Thursday a PICC (peripherally inserted central catheter) line was inserted into Josh's right arm. It was extremely difficult to get IV access on him and when they finally did get an IV in him it usually wouldn't last very long. The PICC was a godsend because at least it gave him one reliable IV line. By this point he was receiving TPN (total parenteral nutrition) as he was still not allowed to receive breast milk. He continued to receive abdominal X-rays every 8 hours and so far no evidence of NEC was apparent but the NICU had recommended to his doctors that he not be fed for 7-10 days in order to err on the side of caution.
On Thursday evening my mom arrived from Vancouver. It was a trip that had been planned for a while but it's purpose changed when Josh got sick. It was great having her there not only for support but she also made sure that I took care of myself. Up until her arrival I had hardly been eating and I hadn't been pumping my milk as often as I should have been. Having her there made dealing with everything that much easier. Thanks mom!
On Friday the doctors started weaning Josh off some of his meds so he was able to wake up and look around, although he was still pretty groggy. On the weekend he was much more alert when awake. I believe he was also off the prostaglandins at this point. I guess the prostaglandins have a lot of side effects and since it was still a while before his surgery his doctors figured that they would take him off of it. If his PDA were to close again he still had the ASD which they thought would provide a sufficient amount of mixing of oxygenated and deoxygenated blood.
The end of the first week was much quieter. Partly because it was the weekend and partly because Josh's condition was improving. The seizures appeared to be under control with medication and his vitals were consistently stable. However, the weekend wasn't without incident - on Sunday we learned that the upper lobe of Josh's right lung had collapsed, likely due to the ventilator. A physiotherapist came by twice a day to work on loosening the secretions so that the lobe could reinflate. They had started to wean him off the ventilator as Josh had been triggering more and more respirations but he wasn't quite ready to come off yet. Probably in another day or two. I was really looking forward to the day when he could come off of the ventilator. It had been a week since I was last able to hold him in my arms. I wanted so badly to pick him up and give him a big hug, and show him how much he was loved.
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