Yesterday worst ever. I give it an F. In fact, I might refuse to participate in March 9th ever again.
Honestly, the day is a blur, with more tests, no improvement, more weakening, much more phlegm coagulating. A tired Ian was losing interest in using his suction thing. His feeding tube finally got installed but then no food was administered. He had several xrays and whatnot.
He had another MRI; this one is the latest spiffy good picture kind. The surgeon ordered it. He checked in after looking over the results and said at this point (whereas he had been extremely tentative), since he wasn't happy with Ian's condition (worsening) and the picture made it seem like surgery might not necessitate much travel through healthy tissue, he was leaning toward surgery. Shock and nausea - the surgery is not a pretty picture. Very risky. Then again, it's forward motion ... and so far we're rolling backward.
Move on a bit later (timeline fuzzy, but evening ish): his breath was shallow and the phlegm interfered. He was getting more lethargic. The breathing specialist came up and said he had to get his oxygen levels up or he was headed elsewhere to get that done. They did some big suction - through the nose and all that. That helped allow him to breathe but his body was still not doing what they wanted. His BP was up and his O2 was down. They did the 100% oxygen to no avail. They cleared us out of the hall and pushed the button: they "coded" him. The cart and the mass of people came. They wheeled him to ICU. They did a different mask, worked on his BP ... not much of a change. He started to become delirious. He wanted to see me, but when I got there he asked where we met, and had much confusion in his eyes. He became rather belligerent about pulling his mask off, moving around on his bed like a drunk person.
Again, time line fuzzy, but the ICU part is middle of the night stuff. Then they ended up putting in the breathing tube, sedating him, restraining him (he's very strong; when I was there, his hands were tied down but he was using his good leg to kick us).
After the tube and the sedation, he had rest. He hasn't had it mostly since we got here, so it was welcome to see, even though it means his face is barely visible under all the tubes and tape and wires.
He is now getting an angiogram; more clear pictures. We are expecting to hear from the doctor within a few hours, and I expect that he will tell us he plans to go ahead with surgery Saturday.
What this means, quite bluntly: He could not improve, he could have new symptoms, he could pass away from surgery. He could RECOVER. These symptoms could dissipate and disappear.
We're circling the wagons. Family headed into town from out. I've done the all-day waiting for brain surgery thing before, but this one carries much more trepidation. The kids haven't seen Ian since Sunday. I haven't seen MY IAN since Sunday, either. Our last sort-of conversation was a fight about how he wasn't allowed to not breathe, so he had to listen to what the specialists had to say. At that point, though, the oxygen deprivation or more brain trouble was causing him confusion and ...
So now we're here, waiting. That's about all I can say right now. Except, naturally: pray. The next two days ... then Saturday ... all powerless, except for prayer. Dr. Wecht's hands, the surgical team. To God be the Glory; great things He has done and continues to do in our lives.
Thursday, March 10, 2011
Wednesday, March 9, 2011
It's a rainy day today. I love rainy days. (They usually cheer me up) I'm sad today, but the weather is at least matching. no blaring brightness and "how can it be sunny out there when things are so terrible in here - the audacity of that sun!"
The hospital window is dirty; it's probably been years since they've been cleaned. Then again, how would I know how dirty windows get downtown? Anyway, I have this giant urge to clean it, but of course it does not open.
I decided to spend some time on the computer today, to keep my hands busy and my brain ... elsewhere kinda, but also to do the "normal" thing; I like to see people's updates on facebook, talking about normal goings-on, even when sometimes I resent them at the same time.
Ian was confused and got himself out of bed last night; I woke up to him sitting on the floor, unattached from all his wires and iv. Bummer. He accidentally pulled his feeding tube out this morning (it's still not installed all the way), so that had to be re-inserted. No fun. He gurgles and half-chokes on phlem, which is so hard to listen to ... I've gotten to the point where I can tell by hearing if he's having trouble reaching his suction tube or it's just something he has to resolve on his own. It makes me feel very callous to do nothing, but as everyone who has someone ill knows, when you can't do anything, you feel helpless.
That's all for now.
The hospital window is dirty; it's probably been years since they've been cleaned. Then again, how would I know how dirty windows get downtown? Anyway, I have this giant urge to clean it, but of course it does not open.
I decided to spend some time on the computer today, to keep my hands busy and my brain ... elsewhere kinda, but also to do the "normal" thing; I like to see people's updates on facebook, talking about normal goings-on, even when sometimes I resent them at the same time.
Ian was confused and got himself out of bed last night; I woke up to him sitting on the floor, unattached from all his wires and iv. Bummer. He accidentally pulled his feeding tube out this morning (it's still not installed all the way), so that had to be re-inserted. No fun. He gurgles and half-chokes on phlem, which is so hard to listen to ... I've gotten to the point where I can tell by hearing if he's having trouble reaching his suction tube or it's just something he has to resolve on his own. It makes me feel very callous to do nothing, but as everyone who has someone ill knows, when you can't do anything, you feel helpless.
That's all for now.
Tuesday, March 8, 2011
Ian Maize update, March 8 11 pm
1. God bless all of you who are praying, have graciously offered to help in so many ways. My home and cat and kids are taken care of and all I need focus on is my husband. I am SO SO thankful.
2. a summary of things: Ian has a cavernous malformation on the brain stem. Basically this is an angry blood vessel that looks like a raspberry and can ooze blood. This has nothing to do with his tumor; it is not cancerous. They found it during a routine scan at the NIH for his post-op from the tumor. One person there commented that she was surprised that the person whose scan she was seeing could be walking, let alone be asymptomatic, as Ian was.
This was in Feb. We were referred to neuro people in the Pittsburgh area. We saw both a radiation specialist, who would do a gamma knife procedure if called for, and a surgeon, who would remove the malformation. Neither doctor recommended treatment because he had no symptoms other than a tingling thumb on his right side, at that point.
Unfortunately it took roughly a week for things to go downhill; his hand became tingly, then his foot and leg, then his face. On Sunday morning his right side felt worse and his left thumb tingled. We went to church and his gait became much more labored. At bed time, he was unable to swallow water. We went to the ER at UPMC. We've been here ever since.
At this point, his physical symptoms are complete numbness on his right side; he's able to move his foot and leg and his smile is even, but his right arm refuses to behave. His left hand tingles but it hasn't gotten any worse. However, he can't walk and he still can't swallow. He now has a feeding tube (although we are still waiting for that procedure to be finished; frustating!) because he can't swallow. He has to use a suction thing for his saliva, which is a constant thing and that means he doesn't sleep much. He gets the hiccups often. He can talk, but it's quite squeaky and raspy and you have to interpret closely.
3. the prognosis: in short, no one has any idea. The data available doesn't present a clear decision on this thing; there are 4 options, one being a giant needle through the head to suck out the pooling blood, which would not rid us of the malformation, which could bleed again. Second is to the wait and see method; apparently the blood is apt to reabsorb and the symptoms would then subside. There is no time line available on how long that could take (meaning weeks or months or never). Third is to do the gamma knife (radiation) procedure, which is not curative, and is a controversial treatment for this situation, and fourth, surgery, which has a large chance of causing collateral damage as bad or worse than his current situation. We are stuck between two rocks and two hard places.
Right now we are on the wait and see track. From what everyone has said, it's safe to say we're going to be at the hospital for 2 weeks minimum. They monitor him, give him meds to control his blood pressure and blood sugar, keep him on a steady dose of steroids to combat swelling. The surgeon really doesn't want to operate, even though Ian would probably lean that direction, just to take SOME action.
This is a kick in the pants, seeing as we just celebrated our 5 years cancer free. Ian is understandably crabby and discouraged,and it's quite hard to see his spirits down, just as his body is failing him.
Me: it's minute to minute, day by day. I've only had one meltdown (inducing a crash cart and way too many personell) but God has given me the strength to carry on little sleep, an angry stomach, and fears I can't even put into words. I'm not putting a happy face on for anyone, but I have a ton of support both here (family) and at home. Did I mention how grateful I am?
What you can do: pray, pray, pray. We have to decide, at some point, on something. The waiting is terrible, but the decision at the end of the (indefinite) road is just as difficult. There is fear, anger, intense sadness, shock/numbness, depression and loneliness, and that's just me. The kids are mostly oblivious, but at some point they probably need to see their Daddy, in all his sickness. Pray for their hearts, and that they be protected from fear as well. Ian is crabby and discouraged; two traits that are quite unlike him. Pray for his ability to ... endure, I suppose, mentally as well as physically.
If you would like to send something, here is his address:
James (Ian) Maize Room F787
UPMC Presbyterian
200 Lothrop Street
Pittsburgh PA 15213
Please don't call the room phone; we have both our cell phones here set to vibrate so everyone can get the maximum amout of rest. I will answer phone calls when I can and reply to texts. My phone is easiest as I have a devil of a time figuring his out sometimes.
If you have any questions, I would be happy to answer them. I'm sure I'm leaving something out here, and since it's all very confusing, I wouldn't even notice an omission. (also functioning on not too much sleep).
I think the first note I wrote (that facebook ate) was better, but ... anyway. Now you're up to speed. God bless you all and thank you so much for your love and support.
2. a summary of things: Ian has a cavernous malformation on the brain stem. Basically this is an angry blood vessel that looks like a raspberry and can ooze blood. This has nothing to do with his tumor; it is not cancerous. They found it during a routine scan at the NIH for his post-op from the tumor. One person there commented that she was surprised that the person whose scan she was seeing could be walking, let alone be asymptomatic, as Ian was.
This was in Feb. We were referred to neuro people in the Pittsburgh area. We saw both a radiation specialist, who would do a gamma knife procedure if called for, and a surgeon, who would remove the malformation. Neither doctor recommended treatment because he had no symptoms other than a tingling thumb on his right side, at that point.
Unfortunately it took roughly a week for things to go downhill; his hand became tingly, then his foot and leg, then his face. On Sunday morning his right side felt worse and his left thumb tingled. We went to church and his gait became much more labored. At bed time, he was unable to swallow water. We went to the ER at UPMC. We've been here ever since.
At this point, his physical symptoms are complete numbness on his right side; he's able to move his foot and leg and his smile is even, but his right arm refuses to behave. His left hand tingles but it hasn't gotten any worse. However, he can't walk and he still can't swallow. He now has a feeding tube (although we are still waiting for that procedure to be finished; frustating!) because he can't swallow. He has to use a suction thing for his saliva, which is a constant thing and that means he doesn't sleep much. He gets the hiccups often. He can talk, but it's quite squeaky and raspy and you have to interpret closely.
3. the prognosis: in short, no one has any idea. The data available doesn't present a clear decision on this thing; there are 4 options, one being a giant needle through the head to suck out the pooling blood, which would not rid us of the malformation, which could bleed again. Second is to the wait and see method; apparently the blood is apt to reabsorb and the symptoms would then subside. There is no time line available on how long that could take (meaning weeks or months or never). Third is to do the gamma knife (radiation) procedure, which is not curative, and is a controversial treatment for this situation, and fourth, surgery, which has a large chance of causing collateral damage as bad or worse than his current situation. We are stuck between two rocks and two hard places.
Right now we are on the wait and see track. From what everyone has said, it's safe to say we're going to be at the hospital for 2 weeks minimum. They monitor him, give him meds to control his blood pressure and blood sugar, keep him on a steady dose of steroids to combat swelling. The surgeon really doesn't want to operate, even though Ian would probably lean that direction, just to take SOME action.
This is a kick in the pants, seeing as we just celebrated our 5 years cancer free. Ian is understandably crabby and discouraged,and it's quite hard to see his spirits down, just as his body is failing him.
Me: it's minute to minute, day by day. I've only had one meltdown (inducing a crash cart and way too many personell) but God has given me the strength to carry on little sleep, an angry stomach, and fears I can't even put into words. I'm not putting a happy face on for anyone, but I have a ton of support both here (family) and at home. Did I mention how grateful I am?
What you can do: pray, pray, pray. We have to decide, at some point, on something. The waiting is terrible, but the decision at the end of the (indefinite) road is just as difficult. There is fear, anger, intense sadness, shock/numbness, depression and loneliness, and that's just me. The kids are mostly oblivious, but at some point they probably need to see their Daddy, in all his sickness. Pray for their hearts, and that they be protected from fear as well. Ian is crabby and discouraged; two traits that are quite unlike him. Pray for his ability to ... endure, I suppose, mentally as well as physically.
If you would like to send something, here is his address:
James (Ian) Maize Room F787
UPMC Presbyterian
200 Lothrop Street
Pittsburgh PA 15213
Please don't call the room phone; we have both our cell phones here set to vibrate so everyone can get the maximum amout of rest. I will answer phone calls when I can and reply to texts. My phone is easiest as I have a devil of a time figuring his out sometimes.
If you have any questions, I would be happy to answer them. I'm sure I'm leaving something out here, and since it's all very confusing, I wouldn't even notice an omission. (also functioning on not too much sleep).
I think the first note I wrote (that facebook ate) was better, but ... anyway. Now you're up to speed. God bless you all and thank you so much for your love and support.
Saturday, March 5, 2011
Saturday, February 26, 2011
Fun Fact
The word checkmate in chess comes from Persian phrase Shah-Mat, which means "The king is dead."
Monday, February 21, 2011
(Fun) Fact
Close to seven hundred thousand land mines were dug up from the banks of the Suez Canal after the 1973 war between Egypt and Israel.
Saturday, February 19, 2011
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