Hi Everyone - a long delayed update on Sue's condition.
First, everyone is now home, so I have some help taking care of Sue. Thanks to Pastor Norm for being taxi service to Alison to and from SSI this week, while I was getting Lauren to and from Grace Adventures camp - a 2 1/2 hour drive from here. And thanks to my Dad for driving up there yesterday - it helped a lot.
Sue's back pain has gotten worse over the last couple of days - to the point where she is now back on vicodin just to endure it. Why does it seem like every health problem we ever have happens on a weekend when nobody is available to help us through it, so we have to endure both pain and uncertainty until everyone opens back up again on Monday?
I was picking up Sue's prescriptions from her ER visit on Thursday, and was sitting in the cafe that is in the MSU Clinical Center, waiting for the pharmacy to complete their work. I happened to look up from my iTouch and saw our family doctor in line for something or other, and he noticed me sitting there and came over to talk to me a moment about Sue. He told me he had put in the referral for the MRI the ER doc wanted, but was unsure what the insurance company was going to say. We feel that this low back MRI is critical for us to understand what is going on inside Sue's back. After 5 CT scans of her head which show a positive progression from the bleed, and one pelvic xray which shows no fractures or other orthopedic issues, and the continuing back pain that has no real explanation, it seems clear that an MRI is in order. But we'll have to wait and see, because it takes at least 48 hours for the insurance company to issue an approval for the referral.
In the meantime, we hope, we pray, and we wait. After two weeks, that is all we can do.
Saturday, June 30, 2012
Thursday, June 28, 2012
Home Again
I just got Sue home and into bed, so here is the update on our latest trip to the ER:
The last 3 days have been marked by increasing lower back pain for Sue, to the point where she can hardly stand or sit for any length of time, and even lying down can be uncomfortable. Sometimes her left leg especially will give out when she is walking and she will fall. Fortunately, she has been able to grab something every time and hasn't hurt herself, but the rapid decline of her walking since she got home Sunday has been worrisome. We were told that there would be some discomfort as her body got rid of the blood in her spinal fluid, but nobody told us to expect this level of pain. She described it as feeling like she needed to deliver a baby, but there was no baby there to push. If she was sitting, it was like sitting on a pointed fence post. (BTW Dad - the walker really helped today - thanks for bringing it over!)
In light of all this pain we decided to go see our family doctor again. We could only see the PA today, but the doctor was in for consultation if necessary. We told the PA our story and she did in fact consult with the doctor, and he said he wanted us to go to the ER, since she was recovering from a serious neurological issue. He didn't want to take any chances and MSU Clinical Center is not equipped for evaluating these kind of things. So off to the ER we went.
During the course of the ER visit she got another CT scan of her brain which showed no additional issues there, and in fact there was no sign of the original bleed, so all that blood has at the very least been processed out from the bleed site and into the cerebral/spinal fluid for disposal. She also got another battery of blood tests (all normal), and a lumbar x-ray, to see if there were any structural issues there (there weren't). She also got more of the muscle relaxers and valium, and a shot of morphine to get her through the night.
So what it all amounts to is that she is having some serious muscle spasms in her lower back. If you have ever had these you know how debilitating they are, and how painful. But no further neurological issues were detected. For that, I am grateful. We also have a couple more prescriptions, which I am also grateful for, for Sue's sake. So it may be a groggy couple of days until these spasms stop, but the drugs will allow her to rest, which will help her more than anything.
On an unrelated note - a solicitation for prayers. My sister's father-in-law was taken to the same hospital today with a heart attack. I stopped up to see them briefly while Sue was sleeping and being taken for the CT scan, and my brother-in-law told me it was pretty massive, and the prognosis wasn't good. His name is Rex. Please ask God to sustain them all - there are 3 siblings, plus grandkids and in-laws. Thanks.
The last 3 days have been marked by increasing lower back pain for Sue, to the point where she can hardly stand or sit for any length of time, and even lying down can be uncomfortable. Sometimes her left leg especially will give out when she is walking and she will fall. Fortunately, she has been able to grab something every time and hasn't hurt herself, but the rapid decline of her walking since she got home Sunday has been worrisome. We were told that there would be some discomfort as her body got rid of the blood in her spinal fluid, but nobody told us to expect this level of pain. She described it as feeling like she needed to deliver a baby, but there was no baby there to push. If she was sitting, it was like sitting on a pointed fence post. (BTW Dad - the walker really helped today - thanks for bringing it over!)
In light of all this pain we decided to go see our family doctor again. We could only see the PA today, but the doctor was in for consultation if necessary. We told the PA our story and she did in fact consult with the doctor, and he said he wanted us to go to the ER, since she was recovering from a serious neurological issue. He didn't want to take any chances and MSU Clinical Center is not equipped for evaluating these kind of things. So off to the ER we went.
During the course of the ER visit she got another CT scan of her brain which showed no additional issues there, and in fact there was no sign of the original bleed, so all that blood has at the very least been processed out from the bleed site and into the cerebral/spinal fluid for disposal. She also got another battery of blood tests (all normal), and a lumbar x-ray, to see if there were any structural issues there (there weren't). She also got more of the muscle relaxers and valium, and a shot of morphine to get her through the night.
So what it all amounts to is that she is having some serious muscle spasms in her lower back. If you have ever had these you know how debilitating they are, and how painful. But no further neurological issues were detected. For that, I am grateful. We also have a couple more prescriptions, which I am also grateful for, for Sue's sake. So it may be a groggy couple of days until these spasms stop, but the drugs will allow her to rest, which will help her more than anything.
On an unrelated note - a solicitation for prayers. My sister's father-in-law was taken to the same hospital today with a heart attack. I stopped up to see them briefly while Sue was sleeping and being taken for the CT scan, and my brother-in-law told me it was pretty massive, and the prognosis wasn't good. His name is Rex. Please ask God to sustain them all - there are 3 siblings, plus grandkids and in-laws. Thanks.
Wednesday, June 27, 2012
Details
Out of the waiting room and in a room waiting for a Dr. Just to reiterate, we are here for her back not her head. May be related, don't know, but she has been in a lot of paid for a couple of days without improvement so we took her to the family doc, who sent us here.
Tuesday, June 26, 2012
Recovery
Now that we're home our routine has changed a little bit. Sue turned her sister into slave labor and had her do spring cleaning in the kids room and their school room. All I can say is wow! After that, she was fanning Sue and feeding her grapes. :) She left this evening, however, so I probably will have grape and fanning duty for the rest of the week, until the kids get home!
We went to see our family doctor for our first followup visit yesterday. He seemed to be quite amazed at our story, but he told us we did everything right, which was encouraging. We are also going to follow up with the Neurologist and with the Hematologist over the next couple of weeks. There are some blood tests that had to be sent to the Mayo Clinic, so those will take some time to come back - perhaps by the end of this week.
Sue's main issue right now is sciatic pain - the headaches are under control with medication. However, it is sometimes it is hard for her to find a comfortable position, either sitting or lying down, and if she is walking she will get a spasm that will literally bring her to her knees at times. We are working with our Chiropractor, and we have an appointment with the Osteopathic Manipulation Clinic at MSU, where Sue has gone before with her TMJ issues, to help us get beyond this problem.
So mainly what she has to do is rest. That is a hard thing for an active person like her to do! Hopefully when her sciatica eases off she will be able to sit up comfortably and do the bookwork she needs to do for the upcoming school year - that's just the thing to keep her off her feet.
We have lifted the restrictions on visitors, so if you would like to come by we would love to have you here. Just call ahead so we can coordinate your visit with our doctor schedules and kid pick-ups and such. Daytime and evening appointments are available! <grin>
We went to see our family doctor for our first followup visit yesterday. He seemed to be quite amazed at our story, but he told us we did everything right, which was encouraging. We are also going to follow up with the Neurologist and with the Hematologist over the next couple of weeks. There are some blood tests that had to be sent to the Mayo Clinic, so those will take some time to come back - perhaps by the end of this week.
Sue's main issue right now is sciatic pain - the headaches are under control with medication. However, it is sometimes it is hard for her to find a comfortable position, either sitting or lying down, and if she is walking she will get a spasm that will literally bring her to her knees at times. We are working with our Chiropractor, and we have an appointment with the Osteopathic Manipulation Clinic at MSU, where Sue has gone before with her TMJ issues, to help us get beyond this problem.
So mainly what she has to do is rest. That is a hard thing for an active person like her to do! Hopefully when her sciatica eases off she will be able to sit up comfortably and do the bookwork she needs to do for the upcoming school year - that's just the thing to keep her off her feet.
We have lifted the restrictions on visitors, so if you would like to come by we would love to have you here. Just call ahead so we can coordinate your visit with our doctor schedules and kid pick-ups and such. Daytime and evening appointments are available! <grin>
Sunday, June 24, 2012
Home!!!
At 4:00 this afternoon Sue walked in the door at home! One week and 30 minutes after she left, as Alison put it.
There are still several doctors appointments to come, but when I got home tonight she was cleaning up the kitchen with Lee, so she is really acting normally! The doctors instructions are for her to lay low for a couple of weeks. I think visitors will be OK if you want to stop by, but call ahead first to make sure we're here.
There are still several doctors appointments to come, but when I got home tonight she was cleaning up the kitchen with Lee, so she is really acting normally! The doctors instructions are for her to lay low for a couple of weeks. I think visitors will be OK if you want to stop by, but call ahead first to make sure we're here.
Saturday, June 23, 2012
Imaging
Sue sent word just a little while ago that the dye study we are expecting is scheduled for tomorrow morning. They are also indicating that she will be discharged tomorrow barring any further complications. I'll put up word on that when I can - I'm driving Lauren to camp after church tomorrow.
Relief!
It is with great joy that I am posting this morning. My last post was about the ongoing headaches that Sue has had all week, and over the last day and a half they had been accompanied by nausea and vomiting whenever she ate anything. Last night they had to give her morphine to knock back the pain, rather than the vicodin. When we left she was still miserable, and even though there was some mention of discharging her today (Saturday) we were not open to that because she was still on medications that I couldn't give her at home because they were using the IV line. And they certainly wouldn't give me morphine for her! At least, I don't think they would.
So this morning there is a text on my phone from Sue's sister Lee (who flew in from California yesterday and spent the night with Sue) that said "They gave Sue a new med, and you have your old wife now". Needless to say I called her immediately. She said it went something like this:
5:00am - new drug administered.
5:15am - "My headache is starting to lift"
5:30am - "I have to use the bathroom"
5:40am - "I'm hungry". Lee: "there's a bananna on your tray"
5:45am - Sue "That was good. I think there's some strawberries in the frige". Lee gets strawberries.
5:50am - Sue: "I think I have a yogurt in that frige too". Lee, who is really jet lagged and whose body thinks it's three hours earlier, gets up and gets the yogurt for Sue.
6:00am - Sue: "Do you think we can take a walk?" Lee drags herself out of the recliner again and takes Sue for a walk around the unit.
6:10am - Sue wants to talk. Any one of you who knows Sue knows she loves conversations. Ask her sometime about her 15 hour conversation with her pal Linda! And she has been so drugged up and in pain the last few days that she has all these words building up inside her and they have to come out or her head will explode.
So the girls and I are giving thanks to God for his great mercy today, and for the answered prayer of wisdom for the doctors, one of whom decided to give the new med a try.
Yesterday I picked up the girls from my brother's, and we went right to the hospital for some mom time. Unfortunately Sue wasn't really all there because of the meds, so it was more of a time of worry than release for them. I had good conversations with both of them about it last night. I think they are very relieved with this news.
Sue is scheduled for another dye study today, so we're waiting on that to happen now. I'll post whatever results we get from that later.
Thank you all for praying. We're still looking for the why of this thing, so we still need prayer in that direction.
So this morning there is a text on my phone from Sue's sister Lee (who flew in from California yesterday and spent the night with Sue) that said "They gave Sue a new med, and you have your old wife now". Needless to say I called her immediately. She said it went something like this:
5:00am - new drug administered.
5:15am - "My headache is starting to lift"
5:30am - "I have to use the bathroom"
5:40am - "I'm hungry". Lee: "there's a bananna on your tray"
5:45am - Sue "That was good. I think there's some strawberries in the frige". Lee gets strawberries.
5:50am - Sue: "I think I have a yogurt in that frige too". Lee, who is really jet lagged and whose body thinks it's three hours earlier, gets up and gets the yogurt for Sue.
6:00am - Sue: "Do you think we can take a walk?" Lee drags herself out of the recliner again and takes Sue for a walk around the unit.
6:10am - Sue wants to talk. Any one of you who knows Sue knows she loves conversations. Ask her sometime about her 15 hour conversation with her pal Linda! And she has been so drugged up and in pain the last few days that she has all these words building up inside her and they have to come out or her head will explode.
So the girls and I are giving thanks to God for his great mercy today, and for the answered prayer of wisdom for the doctors, one of whom decided to give the new med a try.
Yesterday I picked up the girls from my brother's, and we went right to the hospital for some mom time. Unfortunately Sue wasn't really all there because of the meds, so it was more of a time of worry than release for them. I had good conversations with both of them about it last night. I think they are very relieved with this news.
Sue is scheduled for another dye study today, so we're waiting on that to happen now. I'll post whatever results we get from that later.
Thank you all for praying. We're still looking for the why of this thing, so we still need prayer in that direction.
Friday, June 22, 2012
Headaches
Even though Sue's overall condition has improved, the headaches remain - "normal" headaches, not migraines. The staff is telling us that this is the normal healing process and we just have to get through this stage, so Sue is on a painkiller called Norco, which they tell us is Vicodin without all the Tylenol in it. She is also having trouble keeping food down right now - not entirely sure why that is. That would be my biggest prayer request for her today - that she could keep some food down.
For all those reasons, we are restricting visitors and phone calls right now to family and our pastors. That will keep Sue's stress levels down and allow her to rest and recover, which is our primary focus right now.
The kids have been at my brother's house this week, and Aunt Ty and the cousins have been running them ragged! I'm picking them up today so they can get ready for their camps next week. Alison will be at the Student Statesmanship Institute in Lansing, and Lauren will be at Grace Adventures camp near Silver Lake. I must admit to some trepidation on their behalf, especially Lauren, who will be so far away. Pray that God's peace will be with her - I'm sure in that environment it will be. Alison will only be 10 minutes away, and will have many friends around her, so I'm not so concerned about her.
For all those reasons, we are restricting visitors and phone calls right now to family and our pastors. That will keep Sue's stress levels down and allow her to rest and recover, which is our primary focus right now.
The kids have been at my brother's house this week, and Aunt Ty and the cousins have been running them ragged! I'm picking them up today so they can get ready for their camps next week. Alison will be at the Student Statesmanship Institute in Lansing, and Lauren will be at Grace Adventures camp near Silver Lake. I must admit to some trepidation on their behalf, especially Lauren, who will be so far away. Pray that God's peace will be with her - I'm sure in that environment it will be. Alison will only be 10 minutes away, and will have many friends around her, so I'm not so concerned about her.
Thursday, June 21, 2012
Milestone! Moved to Step-Down
We just got moved to the Neuro Step-down unit! They wouldn't do this until all the docs agreed on it, so this means the are not so concerned about any re-occurances of the hemorrhage. Sue continues to have a cycle of headaches (the normal kind, not migraines) which we are controlling with pain meds. They are telling us this is normal as the brain continues to heal itself from the injury it has had. The frequency is getting longer, so as long as that trend continues, we will be encouraged.
I also want to take a moment to address a topic that has come to our note, which is who is getting updated and when. I have joked with Sue that I need a secretary to keep up with all the correspondance and phone calls that need returning, and I know some have fallen through the cracks. I want to apologize if you are one of those people - you are the reason I created this blog. The other side of it is that I can't answer everyones calls and emails and texts and still take care of Sue - I wouldn't get any sleep. So I would ask that everyone keep in mind that Sue is my primary focus right now, and that she needs assistance with simple things like going to the bathroom (I now have to unplug her from the monitors every time, as well as keeping her steady as she walks). So please bear with me on this.
I also want to take a moment to address a topic that has come to our note, which is who is getting updated and when. I have joked with Sue that I need a secretary to keep up with all the correspondance and phone calls that need returning, and I know some have fallen through the cracks. I want to apologize if you are one of those people - you are the reason I created this blog. The other side of it is that I can't answer everyones calls and emails and texts and still take care of Sue - I wouldn't get any sleep. So I would ask that everyone keep in mind that Sue is my primary focus right now, and that she needs assistance with simple things like going to the bathroom (I now have to unplug her from the monitors every time, as well as keeping her steady as she walks). So please bear with me on this.
Wednesday, June 20, 2012
Where we are and how we got here
plural occiputs or oc·cip·i·ta \äk-ˈsip-ət-ə\. Definition of OCCIPUT. : the back part of the head or skull.
I'm calling the blog The Occiput of Sue since that's where the bleeding was. Following is the email that went out to several different groups on Tuesday (6/19) night or early Wednesday (6/20) morning. This starts from the beginning and gets us to Wednesday's post, which I'll make sometime later this evening.
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Finally, thank you to all who have prayed for us. I have noticed the effect of them particularly in that I am not anxious at all about what is going on. I believe God is sustaining all four of us, and his will is being accomplished in Sue’s illness and our walking through it. The walking is no work of mine, I can tell you! There is a definite sense of God holding and sustaining Sue through all her pain.
I'm calling the blog The Occiput of Sue since that's where the bleeding was. Following is the email that went out to several different groups on Tuesday (6/19) night or early Wednesday (6/20) morning. This starts from the beginning and gets us to Wednesday's post, which I'll make sometime later this evening.
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I’m dashing a quick note off before we go up there this morning, but I had to take Sue to the ER yesterday (Sunday) with the “worst headache she ever had”, which had come on suddenly as she was driving home from church. Many of you know that Sue has struggled with headaches for years, so for this to be the worst one is really saying something.
When I wrote you Monday morning, about all I knew was that Sue had had 2 CT scans while we were in the ER, the second being a dye study of her brain to check for aneurism, which they didn’t find, and she was resting fairly comfortably when I left the hospital around midnight.
Moday morning they did another CT scan (no dye this time) which showed the area of bleeding (which they are calling a sub-arachnoid hemorrhage) had grown smaller overnight. They scheduled an MRI then as well, or at least put Sue on the waiting list. When I left the hospital at around 9:00 they still hadn’t got her in for the MRI. She had a stream of visitors throughout the day, and the kids got a chance to spend some time with mom and assure themselves that she was OK. Her pain levels went up and down all day, and she was given Vicodin to get her through the worst of those. She said it never got above a 6 on their pain scale, which would probably put me under the table, but which she seemed to take in stride. She finally got the MRI done at 1:00 am Tuesday. I took the kids to my brother’s house Monday night, and got home about 2:30 am Tuesday.
I called Sue about 8:00 Tuesday morning to find out if she had the MRI, and she said the nurses told her the doctor would be visiting her soon so I rushed over to the hospital to find that a resident had already been there, but hadn’t added much to our understanding of what had happened or what they were going to do next. Up to this point we had not seen a full-fledged doctor since a 5-minute visit from the presiding ER doc within an hour or so of our arrival Sunday afternoon. We were quite anxious to find out what all the tests were telling us and what would happen next. Well, we waited all day for the Neurosurgeon to show up, which he finally did about 4:00 Tuesday afternoon.
Sue had a pretty rough Tuesday. She had a non-migrane headache pretty much all day, and needed one of the Vicodin about every two hours. This is a version of Vicodin which doesn’t have as much Tylenol in it, so your liver doesn’t explode when you really need the pain meds. That med also upset her stomach, so in went the anti-nausea meds as well. I stopped answering phones so that the chatter wouldn’t disturb whatever rest she was getting, which was about one hour of sleep in every two, when the Vicodin kicked in. Around 3pm she started feeling better – the headache being a 1 or a 0 at that point, with no nausea, and she was able to eat some fruit and some jello.
The Neurosurgeon (Dr. Abood – who has done 5 different back surgeries for members of my family, including me) was able to clarify a lot for us. All day Tuesday Sue was complaining of lower back pain which I just attributed to being flat on her back since Sunday afternoon. Turns out, the blood from her brain is draining into the spinal fluid and then settling in her low back. Blood is apparently an irritant for nerves, which that area is full of, and that blood is what is causing her back pain. He told her to get up and move around as much as she felt comfortable with to get that blood worked out of there.
He also suspects that some “spontaneous bruising” she has been having in different spots over the last couple of weeks may be related to this bleed in her brain, so next up is some work by the hematologists, starting with some blood draws tomorrow.
So that is the story for the Monday and Tuesday episodes of this saga. I would rather neither of us would have gotten a part in this play, but such is the providence of God.
Prayer requests are all the standard ones as far as healing Sue, and guiding medical folks and the two of us in the decisions we have yet to make. Pray also for our girls, who kinda freaked out watching mom get hauled away like that. The visit with her on Monday helped them, but Lauren especially has a hard time with fears and traumatic experiences, and I’m concerned what will happen in her little head this week. They’ll both be back Wednesday night so they can go to music lessons on Thursday and Friday. (Marilyn, for obvious reasons Lauren hasn’t had much time to practice this week, but she will have a little on Thursday so you should be OK on Friday!)
Initializing the blog
This is a blog to let our friends and family know of any updates to Sue's condition while she is in the hospital. I'll post as frequently as I can, especially if there is big information that needs to go out. I'll post a summary of what has happened a little later, when I can dig it up off my email.
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