(no subject)
21w 6d
It's nice to not be typing from my phone tonight. My FIL got us a hotel room to use as a 'crash zone', so to speak. The PICU is loud and busy and not especially comfortable and that's hard on me. So I'm at the Marriott and Adam is back at the hospital with Logan for the night. MIL tried to convince him to stay with me, but he insisted that he'd feel better if he were with Logan. I get it. I wish I could be there, too. But I know I can't.
I don't even know where to begin. I guess I should go back to yesterday.
The MRI took a long time, which we knew would happen. I think he was gone for about 4 hours, including some time in recovery. Adam, MIL and I went down to see him in recovery, and the nurse there wheeled him back up to his spot at around 5 or so, though he wasn't quite awake yet. MIL stayed with him and ordered his dinner - he selected pizza - while Adam and I went down to the cafeteria to eat. I know we were both anxious to finally meet the surgeon and find out what the MRI revealed. And it's been over 24 hours since all of that so I just don't remember much else. I know that Adam wanted to be back up to see Logan by 6, so I think we were.
At about 8 or so, the neurosurgeon, Dr. Auguste - this is his profile (and yes, I asked and he's very young - 36), finally came by to see us. My heart was just about thumping out of my chest as he asked to speak with just Adam and I and asked if MIL minded staying with Logan. We walked over to the other side of the room and sat down, and he started to suggest that we look through the images. I couldn't even look at the screen. I finally just said 'look, I need a brass tacks kind of evaluation so I know what we're dealing with here, and then details would be great'. So he explained a few things. He was clear that it was not a tumor in the brain stem; those are typically fatal because they're inoperable. This tumor is operable. He couldn't tell if it's benign or malignant; he dispelled the notion that 'light spots = bad, dark spot = good', and noted that Logan's mass has both dark as well as light areas.
He went on to say that he was 99.9% sure that it is not a brain tumor, as in a tumor derived from brain tissue, but instead some other type of cell that decided to be disobedient. It just happened to do it in Logan's brain instead of elsewhere in his body. He said that this is good news, since it likely won't be as hard to excise it given that he wouldn't have to pick it away from other healthy brain tissue. He also noted that it appears to be made of softer tissue, which is also good news.
He said that he doesn't think it's growing from the brainstem, either. He thinks this because of the way the tumor is pressing against the brainstem and the nerves along the brainstem. It's actually pushing it aside (and impinging on his right sixth nerve, which controls eye movement). He said that if it were growing from the brainstem, it should be pushing in the opposite direction.
Finally, he hadn't consulted with the Radiologist yet, but he said that it did not appear to have spread down his spinal column, which is great news as well. Of course it's MUCH easier to deal with if it's an isolated mass and not something that's spread.
He said he wanted to go in and take out as much as he could in a single shot, so that's the tentative plan for sometime Friday. After he has the tissue out and it's been analyzed, we'll know more what to expect in terms of additional treatment. There are so many potential options that it makes my head spin a little.
I was a little nervous about his age, but he definitely said some things to put my mind at ease. I was particularly struck when he said 'you can view it this way: I trained my entire life so I'd be ready to meet Logan and help him through this'. I'm VERY much seeing patterns in things that happened long ago and led up to this point, so it was an encouraging choice of words.
No one enjoys worry and pain and crisis. But I've been able to see how God's hand worked in these past years and months. He's allowed me to remember things - little moments in time - and to put them in a succession of events that brought us here. Just as a single example, our pediatrician is now one of my favorite people in this world. He insisted that something wasn't right and pressed for the CT scan. When I thanked him for that yesterday, he said 'it just didn't feel right to me to let it go'. And it triggered a memory from about a year ago. I had one of the boys in for a visit. The medical center recently because its own foundation, and the ped's office is within the complex. The medical foundation tried to force the practice to become part of the foundation, and they refused. The next part of the conversation made me cry when I remembered it. I remember he said to me 'if we become the VCMF pediatric group, we'd have to go through VC services first. But I want the flexibility to send really sick kids to Oakland Children's or Stanford to get the best care.' So in a way, he's helped us with this not just once, but twice: The first time, by fighting becoming part of a group that would've limited our access to care, and the second, when he overruled the Opthalmologist and ordered the CT scan.
Anyway, my brother Charlie's co-worker's wife is a pediatric neurologist in LA so we Fed Exed a copy of the MRI to her to review during her rounds tomorrow morning; she offered and we're always open to additional opinions, as was Dr. Auguste when I told him my plan.
It's all truly overwhelming.
Today. Today was a day that forced me to remember that I'm pregnant and need to be careful to take care of myself properly. I woke up this morning and knew I was having contractions. They weren't painful per se, but I knew I was contracting. And I had been on and off for 10 or 12 hours. I called my OB's office and explained the situation and made an appt with the NP to be checked at 2, but FIL showed up to visit out of the blue and drove me to P-town so I could be earlier, and I went to L&D instead. Sure enough, I was having regular contractions every 2 1/2 minutes. My nurse checked me, and I was about a fingertip and posterior, high and thick. She wasn't terribly concerned about the fingertip since this is #4 and all. She had me drink as much water as I could, which wound up being about 70 oz in 15 minutes (and I felt like a sponge - not overly hydrated afterward at all - just shows how dehydrated I was). The contrax slowed and finally stopped, though my uterus was still irritable. I ate a bunch of crackers and PB and just relaxed in the quiet room with the hum of the AC. FIL came in and sat with me part of the time, too. I was able to just be still and not worry for once. By the time I left, things were much better, I felt much better, and I was told many times to be good to myself, even if it's hard right now.
I even called and got Abby's teacher assignment, since we missed registration yesterday. As soon as I said my name the receptionist immediately knew who I was and said that they were all so sorry to hear about Logan and offered up any help they could provide. Amazing, really. Abby got Mrs. Nunemacher, who was basically the only 1st grade teacher I'd heard of before. I asked the receptionist to give her my cell number and have her call me so we could talk about the situation with Logan and its effect on Abby before school starts next week. She called me back this evening, but I didn't get the message until late, so we'll try tomorrow.
FIL and I got back to Oakland at about 6. Logan was asleep, so Adam and I had dinner while MIL stayed with Logan and FIL headed home to take care of Abby and Isaac. Adam's Aunt Patti had been with them much of the day. Adam brought me to the hotel at about 9:15, since Logan was STILL sleeping.
Speaking of sleep, I've got to get to work on that. Good night. Thanks for all of your support.
It's nice to not be typing from my phone tonight. My FIL got us a hotel room to use as a 'crash zone', so to speak. The PICU is loud and busy and not especially comfortable and that's hard on me. So I'm at the Marriott and Adam is back at the hospital with Logan for the night. MIL tried to convince him to stay with me, but he insisted that he'd feel better if he were with Logan. I get it. I wish I could be there, too. But I know I can't.
I don't even know where to begin. I guess I should go back to yesterday.
The MRI took a long time, which we knew would happen. I think he was gone for about 4 hours, including some time in recovery. Adam, MIL and I went down to see him in recovery, and the nurse there wheeled him back up to his spot at around 5 or so, though he wasn't quite awake yet. MIL stayed with him and ordered his dinner - he selected pizza - while Adam and I went down to the cafeteria to eat. I know we were both anxious to finally meet the surgeon and find out what the MRI revealed. And it's been over 24 hours since all of that so I just don't remember much else. I know that Adam wanted to be back up to see Logan by 6, so I think we were.
At about 8 or so, the neurosurgeon, Dr. Auguste - this is his profile (and yes, I asked and he's very young - 36), finally came by to see us. My heart was just about thumping out of my chest as he asked to speak with just Adam and I and asked if MIL minded staying with Logan. We walked over to the other side of the room and sat down, and he started to suggest that we look through the images. I couldn't even look at the screen. I finally just said 'look, I need a brass tacks kind of evaluation so I know what we're dealing with here, and then details would be great'. So he explained a few things. He was clear that it was not a tumor in the brain stem; those are typically fatal because they're inoperable. This tumor is operable. He couldn't tell if it's benign or malignant; he dispelled the notion that 'light spots = bad, dark spot = good', and noted that Logan's mass has both dark as well as light areas.
He went on to say that he was 99.9% sure that it is not a brain tumor, as in a tumor derived from brain tissue, but instead some other type of cell that decided to be disobedient. It just happened to do it in Logan's brain instead of elsewhere in his body. He said that this is good news, since it likely won't be as hard to excise it given that he wouldn't have to pick it away from other healthy brain tissue. He also noted that it appears to be made of softer tissue, which is also good news.
He said that he doesn't think it's growing from the brainstem, either. He thinks this because of the way the tumor is pressing against the brainstem and the nerves along the brainstem. It's actually pushing it aside (and impinging on his right sixth nerve, which controls eye movement). He said that if it were growing from the brainstem, it should be pushing in the opposite direction.
Finally, he hadn't consulted with the Radiologist yet, but he said that it did not appear to have spread down his spinal column, which is great news as well. Of course it's MUCH easier to deal with if it's an isolated mass and not something that's spread.
He said he wanted to go in and take out as much as he could in a single shot, so that's the tentative plan for sometime Friday. After he has the tissue out and it's been analyzed, we'll know more what to expect in terms of additional treatment. There are so many potential options that it makes my head spin a little.
I was a little nervous about his age, but he definitely said some things to put my mind at ease. I was particularly struck when he said 'you can view it this way: I trained my entire life so I'd be ready to meet Logan and help him through this'. I'm VERY much seeing patterns in things that happened long ago and led up to this point, so it was an encouraging choice of words.
No one enjoys worry and pain and crisis. But I've been able to see how God's hand worked in these past years and months. He's allowed me to remember things - little moments in time - and to put them in a succession of events that brought us here. Just as a single example, our pediatrician is now one of my favorite people in this world. He insisted that something wasn't right and pressed for the CT scan. When I thanked him for that yesterday, he said 'it just didn't feel right to me to let it go'. And it triggered a memory from about a year ago. I had one of the boys in for a visit. The medical center recently because its own foundation, and the ped's office is within the complex. The medical foundation tried to force the practice to become part of the foundation, and they refused. The next part of the conversation made me cry when I remembered it. I remember he said to me 'if we become the VCMF pediatric group, we'd have to go through VC services first. But I want the flexibility to send really sick kids to Oakland Children's or Stanford to get the best care.' So in a way, he's helped us with this not just once, but twice: The first time, by fighting becoming part of a group that would've limited our access to care, and the second, when he overruled the Opthalmologist and ordered the CT scan.
Anyway, my brother Charlie's co-worker's wife is a pediatric neurologist in LA so we Fed Exed a copy of the MRI to her to review during her rounds tomorrow morning; she offered and we're always open to additional opinions, as was Dr. Auguste when I told him my plan.
It's all truly overwhelming.
Today. Today was a day that forced me to remember that I'm pregnant and need to be careful to take care of myself properly. I woke up this morning and knew I was having contractions. They weren't painful per se, but I knew I was contracting. And I had been on and off for 10 or 12 hours. I called my OB's office and explained the situation and made an appt with the NP to be checked at 2, but FIL showed up to visit out of the blue and drove me to P-town so I could be earlier, and I went to L&D instead. Sure enough, I was having regular contractions every 2 1/2 minutes. My nurse checked me, and I was about a fingertip and posterior, high and thick. She wasn't terribly concerned about the fingertip since this is #4 and all. She had me drink as much water as I could, which wound up being about 70 oz in 15 minutes (and I felt like a sponge - not overly hydrated afterward at all - just shows how dehydrated I was). The contrax slowed and finally stopped, though my uterus was still irritable. I ate a bunch of crackers and PB and just relaxed in the quiet room with the hum of the AC. FIL came in and sat with me part of the time, too. I was able to just be still and not worry for once. By the time I left, things were much better, I felt much better, and I was told many times to be good to myself, even if it's hard right now.
I even called and got Abby's teacher assignment, since we missed registration yesterday. As soon as I said my name the receptionist immediately knew who I was and said that they were all so sorry to hear about Logan and offered up any help they could provide. Amazing, really. Abby got Mrs. Nunemacher, who was basically the only 1st grade teacher I'd heard of before. I asked the receptionist to give her my cell number and have her call me so we could talk about the situation with Logan and its effect on Abby before school starts next week. She called me back this evening, but I didn't get the message until late, so we'll try tomorrow.
FIL and I got back to Oakland at about 6. Logan was asleep, so Adam and I had dinner while MIL stayed with Logan and FIL headed home to take care of Abby and Isaac. Adam's Aunt Patti had been with them much of the day. Adam brought me to the hotel at about 9:15, since Logan was STILL sleeping.
Speaking of sleep, I've got to get to work on that. Good night. Thanks for all of your support.