Josh did really well off the ventilator. He needed a little bit of oxygen via nasal prongs but just a whiff really - he was being titrated between 0.1 and 0.2 L of oxygen. After a few days he was taken off the oxygen altogether.
Our second week in the PICU was much calmer as we were just waiting for Josh to get stronger and for his brain to stabilize before surgery. Josh was looking and acting much like the little guy that I had at home. He was bright and alert and acting like a normal little baby. And he loved to be held. He was a real cuddle bunny (and still is!) and was most content when held in someones arms. Once he came off the ventilator I was holding him every available moment. I didn't want to give him up. My mom had been with me in the ICU a good part of each day and I'm sure she was just dying to hold him, but she never said a word. She let me have my time with him I guess waiting for the day that I would be able to hand him off to someone else. I don't remember how long she had to wait - a long time; several days. Thank you for being so patient - hopefully the wait wasn't too torturous. I just wasn't ready to share him. One of the few times in my life that I have been selfish.
Robb managed to make it into the PICU a few times that week to see Josh. He had a real hard time being in that environment (all the bells and alarms) and he didn't enjoy seeing Josh hooked up to all the machines and monitors. He wanted to be close by so he stayed on the hospital grounds all day - either sitting in the van in the parking lot waiting for me to call him with an update or sitting in one of the waiting rooms in the hospital - but he couldn't always bring himself to enter the ICU. When he did manage to psych himself up enough to come in, it was usually only for a few minutes at a time.
I remember once when he came in I asked him to stay with Josh for about 10 minutes so I could go and pump some breastmilk. Josh was awake at the time and I didn't like to leave him alone unless he was sleeping. Robb reluctantly agreed. I could tell he wasn't completely comfortable with the idea of being left alone with him, but I thought it would be good for them to have some time together. When I returned Robb was sweating like crazy and was really flushed. I guess the stress of being there longer than what he was comfortable with brought on a bit of an anxiety attack or something. That's probably the first time I realized how much of a struggle this was for Robb. I mean I knew it was tough for him, but now I knew how tough. I have no idea how he managed to sit in the van for hours on end, alone with his thoughts and his cigarettes but obviously we all deal with stressful times in our own ways - and that was his.
On day #10 in the ICU (a Wednesday) Josh was finally able to eat again. The cellulitis on his abdomen had cleared up (thanks to antibiotics) and the abdominal distention had decreased significantly. The doctors in the ICU had not been able to confirm whether or not Josh had NEC. None of his X-rays showed signs of it, but they did show that a normal gas pattern had returned indicating that whatever trauma the gut sustained had resolved. I was so glad that Josh was finally able to eat again. I still wasn't able to breastfeed him but at least he would be getting some food into his belly. He was one hungry baby! He had been receiving fat and nutrients through one of his IV lines but nothing had been in his stomach in over a week - and he let us know every chance that he got.
Josh was started on a slow infusion of my breast milk through his NG tube - and when I say slow infusion I mean 2 mL an hour. I understood the need to reintroduce food slowly in order to ensure no reaction from his gut, but 2 mL an hour? Geez, the guy was starving and we were just giving him a tease. The rate was increased 2 mL/hour every 4 hours so long as Josh was tolerating the feeds well, to a maximum of 27 mL/hour. Once Josh reached the maximum infusion rate and had tolerated it for 4 hours I was able to start breastfeeding him again. Yay!
The purpose of breastfeeding wasn't to satisfy his caloric needs but rather to maintain that mother-baby bond and to help Josh remember how to breastfeed. Josh tired really quickly when breastfeeding because of his heart defect and his respirations would often reach the 110-120 breaths/min range while feeding. So really the breastfeeding was more or less just non-nutritive sucking and then he would get 2 oz of breastmilk through the NG tube after every breastfeed. It felt nice to be able to breastfeed him again and I know Josh enjoyed it too.
The second test was the follow-up MRI of Josh's brain, the results of which would dictate what happened next. If the MRI showed that his brain was ready to tolerate the surgery and Dr. Maharajh felt that Josh's left ventricle was strong enough to maintain systemic pressure, the surgery would likely happen the start of the following week. If the MRI indicated that Josh's brain needed more time to recover and/or if Dr. Maharajh felt that the left ventricle had weakened too much, they would first have to perform a procedure where they band the pulmonary artery to increase the pulmonary resistance and therefore force the left ventricle to work harder/stronger. This was a procedure that would also require open heart surgery but is far less invasive then the surgery he would eventually need.
The MRI was done on Friday September 21 - day #12 in the ICU. A family conference was scheduled for late afternoon to discuss the results. Neurology, cardiology, the cardiovascular surgery team and the ICU team was all present at the meeting, as well as myself and my mom. The neurologist (Dr. Macmillan) started things off by sharing the results of the MRI. The MRI showed that the clot was beginning to dissolve and blood was now able to flow around the clot. The intracranial pressure had decreased and the swelling had subsided. All good news. Neurology gave the go ahead for surgery. Yay!
Unfortunately the MRI wasn't all good news. Now that the swelling had subsided it was evident that Josh had in fact sustained a moderate amount of permanent brain damage, particularly to the occipital and parietal lobes and the left side was damaged more than the right. Based on the areas of the brain affected neurology said that Josh may have epilepsy, may have difficulty learning, may have difficulty with movement and would most likely have problems with vision. With regards to the vision, there was the possibility that Josh would be completely blind. Or he may only be able to see light or shadows or blurred images. Or he may be able to see perfectly clear but then there was the possibility that his brain would not be able to interpret what he sees. At any rate, neurology could not give us a clear cut picture of what exactly the brain damage meant for Josh. He was still very young and there was great opportunity for the healthy areas of the brain to compensate for the functions of the damaged tissue. However, the amount of brain damage was "significant" and some deficits were to be expected.
I tried so hard to stay strong but the news that I was unwilling to accept a week ago was now very real. I broke down, tears streamed down my face and I found it difficult to collect myself. I did manage to pull myself together long enough to hear what Dr. Maharajh had to say with regards to Josh's cardiac surgery. He felt that in Josh's case, the less surgeries the better so he would go ahead with the ASO (arterial switch operation). If his left ventricle had decompensated too much they could support it with medications until it was strong enough. Surgery was booked for Wednesday September 26.
Once the meeting was over I was still pretty upset. I was glad that we had a surgery day and that we could finally move forward but I had a hard time dealing with the neurological issues. The ICU staff was nice enough to let us use their conference room for as long as we needed - I think it took me a least an hour to pull myself together. As I look back on it now I think everything hit me all at once, at that moment, and it was the first time that I really let myself grieve the loss of my healthy baby. It's probably something that all parents go through when they learn that their child has a serious medical condition. You go through the 9 months of pregnancy with a certain expectation - a certain life plan for you and your family and all of a sudden it all changes. The future of your child and your future as a parent is suddenly unclear. I needed to grieve that loss before accepting my new path in life.
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