We received a call yesterday and aapparently there was a mix up and Rion's surgery can not be scheduled until his insurance policy is active and the hospital can confirm that he has coverage. The surgery on the 4th has been cancelled and is on hold indefinitely.
In true God fashion, a local congressman's office has stepped in and is pleading our case to the insurance company to get the policy expedited.
We were so discouraged yesterday but God has reminded us again that if we remain faithful and prayerful, He will provide for our needs.
Praise God for all the support we have- both near and far!
Thursday, December 22, 2011
Tuesday, December 20, 2011
Surgery scheduled
Just a quick update from sunny Ft Lauderdale to let everyone know that Rion's surgery was scheduled yesterday. It will be done on January 4th at Duke University in Durham, NC by Dr. Allan Friedman. We will travel back to Durham on Jan 2nd because Rion has pre-op stuff to do all day on the 3rd- he is having a functional MRI, meeting with the neurosurgeon Dr. Friedman again to review the MRI and surgical procedure that will be done, getting a physical to verify he is fit enough to under go surgery and being admitted to the hospital.
Surgery will be the morning of the 4th and he will spend that night in the ICU. If everything goes smoothly (as it will!) he will move to a regular room on the 5th and be discharged from the hospital as early as the 6th or 7th. We have to stick around Durham for a few more days just in case anything should come up but after that we're cleared to go home. Rion is hoping he doesn't have to spend his 30th birthday (January 8th) in the hospital, but either way, at least he won't have to share it with Morton.
I know I always say it, but thank you for your prayers and support during this time. It was a little unnerving to get the call yesterday morning on vacation and bring us back to reality with the news that Rion is having such major surgery in 2 weeks. But God is good and he will give us peace and comfort if we remember that this is all part of His plan for Rion.
Thank you and God bless,
Emily
Surgery will be the morning of the 4th and he will spend that night in the ICU. If everything goes smoothly (as it will!) he will move to a regular room on the 5th and be discharged from the hospital as early as the 6th or 7th. We have to stick around Durham for a few more days just in case anything should come up but after that we're cleared to go home. Rion is hoping he doesn't have to spend his 30th birthday (January 8th) in the hospital, but either way, at least he won't have to share it with Morton.
I know I always say it, but thank you for your prayers and support during this time. It was a little unnerving to get the call yesterday morning on vacation and bring us back to reality with the news that Rion is having such major surgery in 2 weeks. But God is good and he will give us peace and comfort if we remember that this is all part of His plan for Rion.
Thank you and God bless,
Emily
Friday, December 16, 2011
blessings upon blessings
God is so good!! Today we are feeling blessed beyond words. I have been trying to type out a post in my head (that’s how I usually do it) but I’m having a hard time tying everything together I want to say. So this may be pretty random.
First and most importantly, thank you, thank you, thank you to whoever sent us the awesome all-in-one printer yesterday. My only complaint is that I have no clue who it’s from so I can’t thank you personally. If anyone would like to come forward and admit to sending it we would really like to express our gratitude (you can e-mail us gahendersons at yahoo if you don’t want to make it public.) But regardless of who it’s from, this is such a blessing as I no longer have to email stuff to myself at work to print out and bring home. I also don’t have to use the fax machine at work and risk having a fax come in after I’ve left for the day/weekend, etc.
The second blessing we’d like to share is that we have booked a last minute vacation for next week. We’ll be spending some time in sunny south Florida to get our minds off things! This will give us time to just relax and enjoy each other’s company without worrying about the daily stress that comes from being at home. Both Rion and I are finding it extremely difficult to go about “life as normal” as we wait for the upcoming surgery (which has not been scheduled yet but I will let everyone know when it is.) It became apparent that getting away from home was the only way we’d be able to truly relax and that’s what we need more than anything else right now. This blessing is twofold as we were able to make arrangements for our fur babies (our 2 dogs and 2 cats) quicker than normal. God is taking care of all the details!
We are so grateful to have the love and support of our friends and family as well as people we have never met. It blows our minds to be receiving cards and letters from all over the country, many from people who know only of us and our situation but who don’t know us personally. It really does brighten our day to sit down together each night and go through the mail. We have displayed everything we have received in our living room as a constant reminder of how many people are thinking about us and praying and how loved we truly are. It’s unfortunate that it takes something so horrible to open our eyes and make us realize how fragile life is but at the same time we know without a doubt that God has chosen us to go through this for a reason.
As I mentioned earlier, we will be letting everyone know as soon as the surgery is scheduled. I left a message yesterday for Dr. Friedman that we would like to move forward and hopefully he can get us in right after the new year (and hopefully we will get accepted and have insurance January 1st.)
God is good!!
Emily Henderson
Tuesday, December 13, 2011
Not the best news, but also not the worst
I know everyone has been waiting to hear what happened today and I thank you for giving us time to get home and process a little bit about what we learned.
Surgery is our only option. Leaving Morton "as is" would only allow it to grow and eventually it would have fatal side effects. We can control the symptoms with medications (seizures) but there is only enough room in Rion's head for Morton + his brain, eventually he will lose brain functions and suffer from seizures if we do nothing. His life expectancy will be "greatly reduced" if we do nothing.
So that leaves us with surgery. Dr. Friedman was very upfront with the risks associated with surgery- permanent memory loss, speech disruption, weakness on the left side, infection, anesthesia and bleeding...this is not "routine" surgery by any means. Rion would be put under anesthesia and an incision would be made on his head, the skin would be pulled back and part of his skull would be removed. At this point Rion would be woken up because they need to stimulate the parts of the brain they are cutting on with electrical impulses to determine exactly the effect their cuts will have. The surgery would last around 3-4 hours. The doctor plainly stated "this is not a cure," he will try to remove as much of Morton as possible but it is certain that 100% can't be removed because it is so integrated with his brain. Once the tumor is removed & biopsied, it will be decided if Rion needs to continue with chemo or radiation to combat what is left over.
We walked away with the understand that surgery is our only option, it is not a cure, there are substantial risks and we won't know any more about the prognosis until after surgery.
Words can't describe what we are feeling right now. We are struggling to give this over to God and let Him take control. We are scared and unsure what is going to happen. We have not scheduled a date for surgery yet but we must do so by next Tuesday. The doctor is willing to wait until after the 1st of the year at the latest to allow our insurance to take effect.
Thank you all for your thoughts and prayers as we move forward with this difficult decision. We are leaning toward surgery since that is our only option and we pray that God will take the fear from us and give us comfort that He is with us always.
In Christ,
Emily & Rion
Surgery is our only option. Leaving Morton "as is" would only allow it to grow and eventually it would have fatal side effects. We can control the symptoms with medications (seizures) but there is only enough room in Rion's head for Morton + his brain, eventually he will lose brain functions and suffer from seizures if we do nothing. His life expectancy will be "greatly reduced" if we do nothing.
So that leaves us with surgery. Dr. Friedman was very upfront with the risks associated with surgery- permanent memory loss, speech disruption, weakness on the left side, infection, anesthesia and bleeding...this is not "routine" surgery by any means. Rion would be put under anesthesia and an incision would be made on his head, the skin would be pulled back and part of his skull would be removed. At this point Rion would be woken up because they need to stimulate the parts of the brain they are cutting on with electrical impulses to determine exactly the effect their cuts will have. The surgery would last around 3-4 hours. The doctor plainly stated "this is not a cure," he will try to remove as much of Morton as possible but it is certain that 100% can't be removed because it is so integrated with his brain. Once the tumor is removed & biopsied, it will be decided if Rion needs to continue with chemo or radiation to combat what is left over.
We walked away with the understand that surgery is our only option, it is not a cure, there are substantial risks and we won't know any more about the prognosis until after surgery.
Words can't describe what we are feeling right now. We are struggling to give this over to God and let Him take control. We are scared and unsure what is going to happen. We have not scheduled a date for surgery yet but we must do so by next Tuesday. The doctor is willing to wait until after the 1st of the year at the latest to allow our insurance to take effect.
Thank you all for your thoughts and prayers as we move forward with this difficult decision. We are leaning toward surgery since that is our only option and we pray that God will take the fear from us and give us comfort that He is with us always.
In Christ,
Emily & Rion
Today is the big day!
I am posting from my phone so bear with me if there are errors.
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The last 24 hours have been quite possibly the longest of my life. The anticipation of meeting Dr. Friedman at Duke coupled with the stress of actually getting to North Carolina is making me a basket case. Yesterday was a really, really long day. I got up early to pack and tie up loose ends at the house and then headed off to work at the normal time. I worked a half day and came home at 1:00 to change vehicles and hit the road for NC. Thankfully Rion had packed up the car already before I got home so the turn around was fairly quick- we pulled out of our driveway at 1:45. The trip was relatively painless; we made a few stops for gas, snacks, etc which unfortunately put us going through Charlotte NC right around 5:00- no good! While it wasn't like Atlanta rush hour, they were doing major construction which caused us to lose some time. We finally arrived at our hotel around 7:30. Check-in was a breeze and then off to find something for dinner...HA!! Easier said than done! Apparently folks in Durham 1) don't eat out on Monday's so a majority of the restaurants don't bother to open or 2) are so loaded they don't mind paying $20 for a Mexican entree (isn't Mexican the cheapest and fastest food in most cities?!?) Anyway, after a 30 minute search on foot and an even longer search in the car (for a restaurant that ended up not being where their website says they are located) we resigned ourselves to eating in the hotel restaurant. That probably should have been our first opinion but at first glance it was pricey and we wanted some authentic Durham food....by 9:00 PM that wasn't a concern anymore LOL
You would think after getting up super early, working a half day at work, driving over 7 hours (work commute + trip) and searching for dinner until the point I would have eaten ANYTHING, I would have fallen asleep the second hit my pillow, right?!? Nope, the good 'ol nerves kicked in and sleep last night was at a minimum. I contemplated getting up at 4:45 AM but there was nothing for me to do quietly until Rion woke up. Luckily I did manage to fall back to sleep until my alarm (which I forgot was set) went off at 7:00. I look like death warmed pver but maybe that will make the Dr more sympathetic to our case LOL
Our appointment is at 11 and we have plenty to keep us done until then. I don't think I have mentioned on the blog but we did find health insurance that would cover any treatment of Morton going forward...the major concern is that the application must be received by Dec 15th and the letter from the attending physician that must be included with our application did not get faxed to me at work until after I left yesterday! So...once the office opens I am going to have them fax it to me here at the hotel and then run to the post office and pay to overnight the application so it's received on the 14th. Anyone that knows me knows how I HATE cutting it this close to a deadline, especially with something so important. After Dec 15th and Rion's insurance won't start until Jan 15th!!!
Ok, I have hopefully dumped enough out of my brain to go chill out and just enjoy spending time with Rion. I've read thay going through something tramatic like this will chance your entire perspective about life and it sure has. I don't know yet why we are going through this but I am 100% sure that God knows and I trust His plan for us. Just hug your loved ones 1 extra time today and God will have already used us in a positive way.
Emily
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Wednesday, December 7, 2011
Photos of Morton
Here are the side and top MRI photos of Morton. I am putting in a jump break so they don't show up automatically when we pull up the web page. We had seen the top view (top photo) but not the side view- clearly the side view shows the true size of Morton which was quite unnerving to us last night. However, we are reminding ourselves that just seeing it doesn't make it any bigger so it shouldn't change our optimism that God is going to heal Rion completely!
We really do want everyone to know exactly what is going on, so here they are. Please note that Morton is on the left side of Rion's brain even though on the MRI it appears on the right- the MRI reverses the images that are taken so the sides are flip flopped.
We really do want everyone to know exactly what is going on, so here they are. Please note that Morton is on the left side of Rion's brain even though on the MRI it appears on the right- the MRI reverses the images that are taken so the sides are flip flopped.
Tuesday, December 6, 2011
Brighter skies
Thank you everyone for the kind calls, e-mails, texts and comments on the last post. Rion and I are both feeling much better today and we are back on track dealing with the treatment of Morton as well as life in general. It is clear that this journey is going to have it's share of ups & down and good & bad days and we are blessed that the ups & good days are far out weighing the bad. Thank you for bearing with us as we process and cope with everything; we couldn't ask for a better support system!
I don't have anything new to add today but I did think I would throw it out there that we are in need of a printer to use at home (in case anyone had a used one they were looking to get rid of for cheap.) We don't currently have a home printer and I am fortunate that I can print most of what I need to at work. However with all of the paperwork we are dealing with we need to be able to print at home. I actually have 2 perfectly functioning printers but they will not work with my computer because it has Window's 7 and both are not compatible with that operating system. One of the printers is a Dell all in one (printer-scanner-copier-fax) that just needs ink; the other is a basic Lexmark printer but it has brand new ink and should work fine. I will gladly give these 2 printers to anyone that can use them, regardless if you have a printer that we can use. But we would be willing to trade if anyone is interested!
God is good and so are our friends and family : )
I don't have anything new to add today but I did think I would throw it out there that we are in need of a printer to use at home (in case anyone had a used one they were looking to get rid of for cheap.) We don't currently have a home printer and I am fortunate that I can print most of what I need to at work. However with all of the paperwork we are dealing with we need to be able to print at home. I actually have 2 perfectly functioning printers but they will not work with my computer because it has Window's 7 and both are not compatible with that operating system. One of the printers is a Dell all in one (printer-scanner-copier-fax) that just needs ink; the other is a basic Lexmark printer but it has brand new ink and should work fine. I will gladly give these 2 printers to anyone that can use them, regardless if you have a printer that we can use. But we would be willing to trade if anyone is interested!
God is good and so are our friends and family : )
Monday, December 5, 2011
Not the best weekend
Ok, I want to preface this by saying two things:
1.) Rion has asked me to share this so that everyone has a better understanding of what is going on. We are trying to be as open and honest with everyone about what is going on so there are no surprises and so we don't paint a rosier picture than reality
2.) I am not going to say specifically what we found online until we have confirmation from a doctor that what we read is correct.
So...Saturday hit us with a double whammy of suckiness (believe me, not the words I wanted to use but I'm trying to keep this PG.) First off the doctor bills have started rolling in and they are worse than I expected. I knew things would add up quickly, but I am appalled that a hospital doctor we only say briefly can charge over $700- does it matter that no one met them besides Rion and even he doesn't remember seeing them as many times as they are billing us for?? Never the less, my plan for today is to start calling these companies and asking for a reduction in what we owe because to pay the full amount would be not only a hardship but very likely impossible. I keep telling myself I am not going to get upset about the financial aspect and getting Rion better is all that matters but it is still un nerving to see such large bills coming...not to mention that this is just the beginning. The nice folks at Duke just called to get our insurance information and were totally caught off guard when I told them I didn't have any. Now I have a call into the doctor's office to make sure we are not going to have to pay up front for anything at our appointment next week. I should be focused on getting the best possible treatment for Rion and not compromising treatment based on the financial ramifications! How messed up is that mentality- is his life any less important because we aren't financially well off. I have a hard time wrapping my mind around that.
But enough about money, the real down side to this weekend came Saturday night when I had the bright idea to do some of my own research online. What we found was horrible and I only wish I would have known better than to read it in the first place and at the least, I shouldn't have allowed Rion to read it. Like I said in the beginning, I am not going to give specifics but we used some of the information given to us by the doctors last week to try and read up on what is likely Rion's diagnosis and prognosis. (I say likely because without a biopsy there is no definite proof.) But proof aside, we were devastated at the information we found. I guess we had up until this point remained optimistic that the tumor was operable, it was going to be completely removed and then Rion would return to life as normal. Of course the threat of recurrence would always be a possibility, but to read that it was highly likely, if not 100% certain. Wow! How are we supposed to digest that, sitting at home in our living room totally unprepared?
I can tell you this; we didn't digest it very well at all. The rest of Saturday night was a blur of tears and frantic phone calls to my Dad, who having just gone through a cancer diagnosis and treatment with my Grandmother, is our "expert" and go-to person when there is something we don't understand. Unfortunately this wasn't something he had dealt with so there wasn't much he could say or do to make us feel better. All of the reassuring words in the world just couldn't take away the devastation and fear that we felt. I have never in my life felt so overwhelmingly scared. And all I could think was about how Rion must be feeling, knowing this is happening to him. Neither of us had ever thought of this ending in death but Saturday night we had to accept that it could.
Initially Rion was the "strong" one who was trying to calm me down and rationalize that reading about statistics and probabilities didn't mean he was destine to the same outcome. But after a while it hit him too and he fell completely apart. He had a full blown panic attack and it was only with God's help (and anti-anxiety meds) I was able to calm him down. Unfortunately the effects of this knowledge have not gone away completely and Rion is dealing with some depression and daily anxiety that we are hoping is temporary. We are trying to move passed such dark thoughts and back into a more positive mind frame but that is proving to be easier said than done.
I don't know how to end this except to ask for your continued prayers. Yes, prayers for answers to the financial burden but more importantly, prayers for hope and optimism and prayers that Rion (and I) will be able to regain our faith that God is going to carry us through this and make everything ok.
1.) Rion has asked me to share this so that everyone has a better understanding of what is going on. We are trying to be as open and honest with everyone about what is going on so there are no surprises and so we don't paint a rosier picture than reality
2.) I am not going to say specifically what we found online until we have confirmation from a doctor that what we read is correct.
So...Saturday hit us with a double whammy of suckiness (believe me, not the words I wanted to use but I'm trying to keep this PG.) First off the doctor bills have started rolling in and they are worse than I expected. I knew things would add up quickly, but I am appalled that a hospital doctor we only say briefly can charge over $700- does it matter that no one met them besides Rion and even he doesn't remember seeing them as many times as they are billing us for?? Never the less, my plan for today is to start calling these companies and asking for a reduction in what we owe because to pay the full amount would be not only a hardship but very likely impossible. I keep telling myself I am not going to get upset about the financial aspect and getting Rion better is all that matters but it is still un nerving to see such large bills coming...not to mention that this is just the beginning. The nice folks at Duke just called to get our insurance information and were totally caught off guard when I told them I didn't have any. Now I have a call into the doctor's office to make sure we are not going to have to pay up front for anything at our appointment next week. I should be focused on getting the best possible treatment for Rion and not compromising treatment based on the financial ramifications! How messed up is that mentality- is his life any less important because we aren't financially well off. I have a hard time wrapping my mind around that.
But enough about money, the real down side to this weekend came Saturday night when I had the bright idea to do some of my own research online. What we found was horrible and I only wish I would have known better than to read it in the first place and at the least, I shouldn't have allowed Rion to read it. Like I said in the beginning, I am not going to give specifics but we used some of the information given to us by the doctors last week to try and read up on what is likely Rion's diagnosis and prognosis. (I say likely because without a biopsy there is no definite proof.) But proof aside, we were devastated at the information we found. I guess we had up until this point remained optimistic that the tumor was operable, it was going to be completely removed and then Rion would return to life as normal. Of course the threat of recurrence would always be a possibility, but to read that it was highly likely, if not 100% certain. Wow! How are we supposed to digest that, sitting at home in our living room totally unprepared?
I can tell you this; we didn't digest it very well at all. The rest of Saturday night was a blur of tears and frantic phone calls to my Dad, who having just gone through a cancer diagnosis and treatment with my Grandmother, is our "expert" and go-to person when there is something we don't understand. Unfortunately this wasn't something he had dealt with so there wasn't much he could say or do to make us feel better. All of the reassuring words in the world just couldn't take away the devastation and fear that we felt. I have never in my life felt so overwhelmingly scared. And all I could think was about how Rion must be feeling, knowing this is happening to him. Neither of us had ever thought of this ending in death but Saturday night we had to accept that it could.
Initially Rion was the "strong" one who was trying to calm me down and rationalize that reading about statistics and probabilities didn't mean he was destine to the same outcome. But after a while it hit him too and he fell completely apart. He had a full blown panic attack and it was only with God's help (and anti-anxiety meds) I was able to calm him down. Unfortunately the effects of this knowledge have not gone away completely and Rion is dealing with some depression and daily anxiety that we are hoping is temporary. We are trying to move passed such dark thoughts and back into a more positive mind frame but that is proving to be easier said than done.
I don't know how to end this except to ask for your continued prayers. Yes, prayers for answers to the financial burden but more importantly, prayers for hope and optimism and prayers that Rion (and I) will be able to regain our faith that God is going to carry us through this and make everything ok.
Friday, December 2, 2011
Road Trip!!!
I got a call this morning from Dr. Allan Friedman's office at Duke University and we have an appointment scheduled for December 13th at 11:00 to meet with Dr. Friedman there in NC. I am glad to know what the next step in this journey is. We are praying they give us the news we want- that they feel comfortable performing the surgery and that Rion will be back to his old self sooner rather than later. However, after having 1 neurosurgeon refer us to another doctor, we also pray that they have they insight to refer us elsewhere if they are not meant to perform the surgery.
As of now, the plan is to travel to NC Monday Dec 12th and stay overnight so we are refreshed and ready for our appointment the next day. We will return home after the appointment on Tuesday.
Our God is so awesome for the people he directly and indirectly places in our lives. I may be over whelmed with planning all the details and loose ends, but I feel that God is leading us in the right direction and that we will see Rion "fixed."
I can't wait until the day that Morton is history and we can all look back on this as just another obstacle we over came together : )
As of now, the plan is to travel to NC Monday Dec 12th and stay overnight so we are refreshed and ready for our appointment the next day. We will return home after the appointment on Tuesday.
Our God is so awesome for the people he directly and indirectly places in our lives. I may be over whelmed with planning all the details and loose ends, but I feel that God is leading us in the right direction and that we will see Rion "fixed."
I can't wait until the day that Morton is history and we can all look back on this as just another obstacle we over came together : )
Oops
Sorry! It was just brought to my attention that I didn't have the comments enabled...it doesn't do me much good to encourage comments/questions when I haven't changed the privacy settings to allow it. Anyone should be able to comment now- just make sure to put your name or something so we know who it's from.
Emiliy
Emiliy
Time line cont.
Tuesday 11/22/2011- Rion woke up in ICU after a night of not much sleep. I met with Dr. Walpert (neurosurgeon) early that morning and she did a basic exam to test his neurological functions- he was able to recall and speak the names of objects that she pointed at (watch, earrings, nose) but he did not remember meeting her from the day before. It was evident he was having some memory loss but nothing extreme. In fact, Dr. Walpert's "test" to make sure he was ok to move from ICU to a regular room was asking him what my birthday was- month, day year... he passed with flying colors (which thrilled me because he has been known to get the year wrong even when he hasn't had a seizure the day before LOL.) The dr explained that our options were to either biopsy the tumor to see what we were dealing with and then decide how to treat it or to forego the biopsy and go straight to surgery. She cautioned that removing it would be major surgery and perhaps a biopsy would be a better way to start treatment. She still did not want to schedule the biopsy yet as the neurologist (Dr. Morris) would still need to review the EEG from the night before and determine if Rion was still having seizures (often the seizures are so small they are not observed but never the less he needed to be seizure free before doing biopsy or surgery.) We scheduled the follow up meeting for November 29th which would allow us to monitor Rion, think about our plan of action for treatment and brain storm any questions we wanted her to answer. Additionally it allowed her and her staff to get through the Thanksgiving holiday and come back refreshed and clear headed and ready to tackle the tumor.
Dr. Morris came to see Rion in the ICU shortly after Dr. Walpert left and he agreed that the EEG monitors could be removed since Rion had not had a visible seizure during the night. This was a huge relief because the EEG was connected in what looked like 20 places to his hair, ears and chest and the cap they had placed on his head to hold the monitors on kept slipping down over his eyes. The technician took one taped on electrode off Rion's chest (which Rion clearly did NOT like) and after that we let Rion remove all of the tape himself- which was probably easier on him and everyone around him : ) Dr. Morris also cleared Rion to be moved out of ICU but as a precaution it was agreed that he needed to stay in the hospital one more night.
Rion was moved right around lunch time out of ICU and to a room in the neuroscience ward of the hospital. I know it was lunch time because there was a mix up and his lunch when to ICU while he was being moved to the regular room. A VERY nice nurse brought his food down to him once the mix up was realized instead of waiting to call a tech or someone to bring it to us. Unfortunately it didn't matter how quickly the food got there, we soon realized that Rion had zero interest in eating and instead preferred to sleep. A combination of the physical/mental stress of having a seizure plus starting the Keppra which causes extreme drowsiness, and we spent all day Tuesday trying to keep Rion awake long enough to do anything. Mid afternoon I was able to help him take a shower which I am sure felt amazing after not having one for almost 2 days. The eating never improved though and it was difficult to watch him sit up to eat, take a few bites and then push his food away because he was simply too tired to even chew his food. I had hoped he would get better rest Tuesday night and wake up feeling refreshed but i was sadly disappointed.
Around bed time Tuesday night Rion started having back pain. (a little history for those that don't know- Rion has struggled with a bad back from the past 5 years. He has degenerative disks which are aggravated from lying down and especially from laying on soft surfaces.) He took 2 Tylenol before going to sleep but from my cot next to his bed, I could hear him tossing and turning all night trying to get comfortable. I still don't know who had a more uncomfortable bed that night, but I do know that neither of us got much sleep.
Wednesday 11/23/2011- I finally had enough trying to sleep on the cot and got up around 5:30. We managed to catch the nurse coming in to check Rion's vitals and asked her for some more Tylenol since he was in worse pain that he had been the night before. After getting the medication, I left to get some fresh air for a few hours and hoped that he would be able to sleep a little longer. When I came back around 8:00 Rion was awake and very much in pain. While waiting for the nurse to come, his breakfast came and he was at least able to take a few bites of everything on his plate. This was much improvement over the day before when he had only taken a few bites all day long. After breakfast the pain was becoming unbearable so we paged for the nurse to come so we could ask her for something stronger than Tylenol. It took an hour or so, but finally Rion was given a stronger pain killer and able to get some relief. He was staying awake for longer lengths of time and actually wanted to get up and sit in the chair next to the bed or on the window ledge where he could look outside.
We knew we were ready to go home but before we could be discharged Rion had to be cleared by the hospital doctor (MD) as well as by Dr. Morris (neurologist.) We passed the time by watching TV and Rion napped on and off. His speech was still improving but he was still struggling to get the words to come out coherently. Additionally, it was very tiring for him to speak because he now had to think up each and every word he wanted to use before he could even try to speak them. Dr. Morris came in before noon and cleared Rion to go home however we would also need to follow up with his office the following week to make sure his medication levels looked good and to discuss the management of his seizures in more detail. Dr. Morris and Dr. Walpert would be working as a team- Dr. Walpert treating the tumor and Dr. Morris managing the seizures and any other neurological side effects from the tumor. We were able to schedule our follow up with Dr. Morris the same day as our appointment with Dr. Walpert so we would only have to make 1 trip back to Athens.
I was starving at this point and ran down to the cafeteria to have lunch; unfortunately this is also when the hospital doctor, a speech therapist and lunch came to Rion. He is able to remember most of what happened though- the hospital doctor said he was healthy enough to go home, the speech therapist confirmed his speech problems were totally neurological and therefore could not be helped with therapy, and Rion managed to eat a good deal of his lunch. I don't think I missed anything too important but it was still annoying that everything happened in that 20 minutes after I had sat in the room all morning.
It didn't take more than an hour or so for the nurse to come with our discharge papers and to remove Rion's last remaining IV (which he helped with since he wasn't about to let anyone pull tape off of him again!) We left the hospital mid afternoon and after a brief stop at his work, we made it home early evening. The journey home wore him out so much that he walked straight in the house and climbed in the bed which is where he stayed for most of the day.
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That is the whole story of seizure/hospital experience. I am hoping to do one more post today that will recap the 2 doctor appointments that we had this Tuesday 11/28 with Dr. Morris and Dr. Walpert. The main thing to know right now is that:
1) Rion's EEG did show seizure activity while he was in ICU so there is a risk of him having another seizure. He can not drive for at least 6 months (GA state law) and he can not do anything which would elevate the chance of him being injured if he were to have a seizure- no climbing ladders, getting on the roof, swimming, taking baths, operating heavy machinery (including our lawn mower,) cooking over the stove, etc.
2.) We gave decided not to do the biopsy because the bottom line is that the tumor needs to come out, regardless whether it is malignant or benign. Dr. Walpert felt that because his surgery is so risky we need to seek out the best treatment available. She is referring us to Duke University and the chief of neurosurgery Dr. Allan Friedman. We are currently waiting for a call from them to determine what the next steps are.
Dr. Morris came to see Rion in the ICU shortly after Dr. Walpert left and he agreed that the EEG monitors could be removed since Rion had not had a visible seizure during the night. This was a huge relief because the EEG was connected in what looked like 20 places to his hair, ears and chest and the cap they had placed on his head to hold the monitors on kept slipping down over his eyes. The technician took one taped on electrode off Rion's chest (which Rion clearly did NOT like) and after that we let Rion remove all of the tape himself- which was probably easier on him and everyone around him : ) Dr. Morris also cleared Rion to be moved out of ICU but as a precaution it was agreed that he needed to stay in the hospital one more night.
Rion was moved right around lunch time out of ICU and to a room in the neuroscience ward of the hospital. I know it was lunch time because there was a mix up and his lunch when to ICU while he was being moved to the regular room. A VERY nice nurse brought his food down to him once the mix up was realized instead of waiting to call a tech or someone to bring it to us. Unfortunately it didn't matter how quickly the food got there, we soon realized that Rion had zero interest in eating and instead preferred to sleep. A combination of the physical/mental stress of having a seizure plus starting the Keppra which causes extreme drowsiness, and we spent all day Tuesday trying to keep Rion awake long enough to do anything. Mid afternoon I was able to help him take a shower which I am sure felt amazing after not having one for almost 2 days. The eating never improved though and it was difficult to watch him sit up to eat, take a few bites and then push his food away because he was simply too tired to even chew his food. I had hoped he would get better rest Tuesday night and wake up feeling refreshed but i was sadly disappointed.
Around bed time Tuesday night Rion started having back pain. (a little history for those that don't know- Rion has struggled with a bad back from the past 5 years. He has degenerative disks which are aggravated from lying down and especially from laying on soft surfaces.) He took 2 Tylenol before going to sleep but from my cot next to his bed, I could hear him tossing and turning all night trying to get comfortable. I still don't know who had a more uncomfortable bed that night, but I do know that neither of us got much sleep.
Wednesday 11/23/2011- I finally had enough trying to sleep on the cot and got up around 5:30. We managed to catch the nurse coming in to check Rion's vitals and asked her for some more Tylenol since he was in worse pain that he had been the night before. After getting the medication, I left to get some fresh air for a few hours and hoped that he would be able to sleep a little longer. When I came back around 8:00 Rion was awake and very much in pain. While waiting for the nurse to come, his breakfast came and he was at least able to take a few bites of everything on his plate. This was much improvement over the day before when he had only taken a few bites all day long. After breakfast the pain was becoming unbearable so we paged for the nurse to come so we could ask her for something stronger than Tylenol. It took an hour or so, but finally Rion was given a stronger pain killer and able to get some relief. He was staying awake for longer lengths of time and actually wanted to get up and sit in the chair next to the bed or on the window ledge where he could look outside.
We knew we were ready to go home but before we could be discharged Rion had to be cleared by the hospital doctor (MD) as well as by Dr. Morris (neurologist.) We passed the time by watching TV and Rion napped on and off. His speech was still improving but he was still struggling to get the words to come out coherently. Additionally, it was very tiring for him to speak because he now had to think up each and every word he wanted to use before he could even try to speak them. Dr. Morris came in before noon and cleared Rion to go home however we would also need to follow up with his office the following week to make sure his medication levels looked good and to discuss the management of his seizures in more detail. Dr. Morris and Dr. Walpert would be working as a team- Dr. Walpert treating the tumor and Dr. Morris managing the seizures and any other neurological side effects from the tumor. We were able to schedule our follow up with Dr. Morris the same day as our appointment with Dr. Walpert so we would only have to make 1 trip back to Athens.
I was starving at this point and ran down to the cafeteria to have lunch; unfortunately this is also when the hospital doctor, a speech therapist and lunch came to Rion. He is able to remember most of what happened though- the hospital doctor said he was healthy enough to go home, the speech therapist confirmed his speech problems were totally neurological and therefore could not be helped with therapy, and Rion managed to eat a good deal of his lunch. I don't think I missed anything too important but it was still annoying that everything happened in that 20 minutes after I had sat in the room all morning.
It didn't take more than an hour or so for the nurse to come with our discharge papers and to remove Rion's last remaining IV (which he helped with since he wasn't about to let anyone pull tape off of him again!) We left the hospital mid afternoon and after a brief stop at his work, we made it home early evening. The journey home wore him out so much that he walked straight in the house and climbed in the bed which is where he stayed for most of the day.
---------------------------------------------------
That is the whole story of seizure/hospital experience. I am hoping to do one more post today that will recap the 2 doctor appointments that we had this Tuesday 11/28 with Dr. Morris and Dr. Walpert. The main thing to know right now is that:
1) Rion's EEG did show seizure activity while he was in ICU so there is a risk of him having another seizure. He can not drive for at least 6 months (GA state law) and he can not do anything which would elevate the chance of him being injured if he were to have a seizure- no climbing ladders, getting on the roof, swimming, taking baths, operating heavy machinery (including our lawn mower,) cooking over the stove, etc.
2.) We gave decided not to do the biopsy because the bottom line is that the tumor needs to come out, regardless whether it is malignant or benign. Dr. Walpert felt that because his surgery is so risky we need to seek out the best treatment available. She is referring us to Duke University and the chief of neurosurgery Dr. Allan Friedman. We are currently waiting for a call from them to determine what the next steps are.
Thursday, December 1, 2011
Time line
To try and get everyone on the same page (and because I can't remember who knows what) I am going to try and create a time line with as many details as I can as to what has happened up to this point. Please feel free to add any additional information in the comments if I leave something out or don't explain something fully enough. Also, I am trying to present just the facts and not anyone's feelings/emotions as to not distract from what actually happened. That doesn't mean I, or anyone for that matter, just stood around stoically with all of this happening to Rion. We were and continue to be quite emotional : )
11/21/2011- Rion left the house for work at 6:30 as normal and was perfectly fine. He texted me around 7:20 to let me know that Larry Munson had died. On my way to work at 8:10 I received a call from Rion's cell phone and it was his boss Charlie to tell me that they were calling an ambulance for Rion because he was having trouble speaking. Charlie described that Rion had been working with another co-worker doing inventory and became unable to answer questions and then he tried to write something to them which he could not do either. Rion remembers clearly that he was walking in and out of the office and suddenly realized he didn't know what he was doing and couldn't remember why he kept walking in and out. He tried to ask a co-worker what was going on but could not form words. He also remembers trying to write out "I don't feel right" but he couldn't do that either. He was aware the whole time of what was going on around him- from Charlie calling me on his phone and the ambulance getting there, to actually getting into the ambulance. However after that he doesn't remember anything else until he was in ICU.
I arrived at the hospital (Athens Regional Medical Center in Athens, GA) around 9:00 and Rion was in the Emergency Room, he had actually just been taken to have a CT scan done. The neurologist Dr. Morris met with me once the CT scan was complete to show that a large mass of abnormality was present in Rion's left brain hemisphere. The abnormality plus the symptoms he was experiencing were consistent with a stroke. However, the size of the area was so severe that it was surprising Rion had remained conscious and able to breathe on his own. The size indicated a massive stroke. (The first time I saw Rion in the ER, he was awake but completely comatose- he was staring straight ahead and not acknowledging anyone in the room. He was also salivating a lot and unable to swallow so the nurses showed me how to use a vacuum to keep him from salivating on himself.)
Based on the 1st CT scan Dr. Morris advised that we would need to give Rion TPA which is a clot busting medicine used to stop strokes. However it is a very risky procedure and can lead to fatal brain hemorrhaging. The medication would have to be given by 10:30 because that would be the 3 hour time limit from when the stroke began. I would have to sign a waiver for this treatment because it is so risky and can lead to death.
Because a clot was not present on the initial CT, Dr. Morris was ordering a 2nd CT to check for clots in Rion's neck as well as an MRI & blood work to confirm that the abnormal region was actually a stroke and not something else. Dr. Morris also advised that if the clot was found in the neck, based on the severity, TPA may not be advised and instead Rion may have to be life flighted to Emory to have emergency surgery. Dr. Morris would not give TPA until the 2nd CT, MRI and blood work were received but he did want to make me aware of the TPA because I would only have a few minutes to make a decision once the remaining test results were received and if a stroke was confirmed.
Almost simultaneously with being given this information, the 2nd CT scan results were received and no clot was present in his neck. This ruled out a stroke and any need for TPA or emergency surgery. But Rion was still out of it so we knew something serious was happening. While waiting for the MRI, my parents arrived and were there when Dr. Morris called us over to the computer where he was reviewing the MRI. The mass of abnormality that appeared on the 1st CT scan also showed up on the MRI and Dr. Morris confirmed that Rion has a rather large brain tumor and the symptoms he was experiences were from a seizure.
Dr. Morris advised that Rion should be coming back around soon however he would need to be moved to ICU until he was stabilized and for monitoring at least over night. By this point he had already started following people around the room with his eyes and when I kissed him he kissed me back. He was unable to speak still but he was attempting to. In fact, Dr. Morris was there when Rion spoke for the first time- he said something along the lines of gosh darn it but not quite so nice! Additionally, Dr. Morris was contacting a neurosurgeon, Dr. Kimberly Walpert, who would be coming to the hospital later that day to review the MRI and meet with us regarding our options.
Rion was moved to ICU early afternoon and it was there we waited for the neurosurgeon to come. We knew that she was in surgery at another hospital but would come to Athens Regional to meet with us as soon as possible. In the mean time, they started Rion on an anti-seizure drug (Keppra) and tried to make him as comfortable as possible. His speech was slowly coming back but he was still saying very little and became very frustrated when he tried to speak and could not. He was also asking for food but was not allowed to eat in case Dr. Walpert wanted him to go straight into surgery.
Dr. Walpert showed up around dinner time and met with me, Rion and Dana (Rion's mother.) She did not think Rion needed immediate surgery; in fact she did not want to discuss operating until his seizure activity had stopped. (She told us this is because operating on someone's brain when they are having seizure activity is very risky and likely to cause another seizure.) She agreed he needed to remain in the ICU over night and have an EEG done to watch his brain wave activity to determine if he was at risk for having another seizure even if one did not actually happen.
I left at this point to pick up Rion's car from work and take it home and to take a shower and pack some clothes. Normally patients are not allowed to have family stay over night when they are in ICU but I offered to sleep in the waiting room so I was allowed to stay. I am very glad I did because the night nurse came and woke me up around 2:00 AM because Rion was awake and asking for me. I was able to go in and spend about an hour with him until he was able to calm down and go back to sleep. (I appreciate that the nurses turned their head when I climbed up in the bed and laid down with him until he fell asleep.) At one point Rion said he was hungry so I had the nurse heat up him a cup of soup. But he took one sip and changed his mind because the soup was so nasty. The rest of the night was uneventful and Rion slept on an off until about 8:00 AM the next day. (I use the term sleeping loosely because he was hooked up to an IV drip, the EEG machine, the heart rate monitor, blood pressure cuff and oxygen...to say it was difficult to get comfortable enough to sleep would be an understatement).
______________________________________________
This is becoming so long I am going to take a break and continue later. He did end up staying until Wednesday 11/23 and while not much happened, I don't want to rush and leave out any important details.
11/21/2011- Rion left the house for work at 6:30 as normal and was perfectly fine. He texted me around 7:20 to let me know that Larry Munson had died. On my way to work at 8:10 I received a call from Rion's cell phone and it was his boss Charlie to tell me that they were calling an ambulance for Rion because he was having trouble speaking. Charlie described that Rion had been working with another co-worker doing inventory and became unable to answer questions and then he tried to write something to them which he could not do either. Rion remembers clearly that he was walking in and out of the office and suddenly realized he didn't know what he was doing and couldn't remember why he kept walking in and out. He tried to ask a co-worker what was going on but could not form words. He also remembers trying to write out "I don't feel right" but he couldn't do that either. He was aware the whole time of what was going on around him- from Charlie calling me on his phone and the ambulance getting there, to actually getting into the ambulance. However after that he doesn't remember anything else until he was in ICU.
I arrived at the hospital (Athens Regional Medical Center in Athens, GA) around 9:00 and Rion was in the Emergency Room, he had actually just been taken to have a CT scan done. The neurologist Dr. Morris met with me once the CT scan was complete to show that a large mass of abnormality was present in Rion's left brain hemisphere. The abnormality plus the symptoms he was experiencing were consistent with a stroke. However, the size of the area was so severe that it was surprising Rion had remained conscious and able to breathe on his own. The size indicated a massive stroke. (The first time I saw Rion in the ER, he was awake but completely comatose- he was staring straight ahead and not acknowledging anyone in the room. He was also salivating a lot and unable to swallow so the nurses showed me how to use a vacuum to keep him from salivating on himself.)
Based on the 1st CT scan Dr. Morris advised that we would need to give Rion TPA which is a clot busting medicine used to stop strokes. However it is a very risky procedure and can lead to fatal brain hemorrhaging. The medication would have to be given by 10:30 because that would be the 3 hour time limit from when the stroke began. I would have to sign a waiver for this treatment because it is so risky and can lead to death.
Because a clot was not present on the initial CT, Dr. Morris was ordering a 2nd CT to check for clots in Rion's neck as well as an MRI & blood work to confirm that the abnormal region was actually a stroke and not something else. Dr. Morris also advised that if the clot was found in the neck, based on the severity, TPA may not be advised and instead Rion may have to be life flighted to Emory to have emergency surgery. Dr. Morris would not give TPA until the 2nd CT, MRI and blood work were received but he did want to make me aware of the TPA because I would only have a few minutes to make a decision once the remaining test results were received and if a stroke was confirmed.
Almost simultaneously with being given this information, the 2nd CT scan results were received and no clot was present in his neck. This ruled out a stroke and any need for TPA or emergency surgery. But Rion was still out of it so we knew something serious was happening. While waiting for the MRI, my parents arrived and were there when Dr. Morris called us over to the computer where he was reviewing the MRI. The mass of abnormality that appeared on the 1st CT scan also showed up on the MRI and Dr. Morris confirmed that Rion has a rather large brain tumor and the symptoms he was experiences were from a seizure.
Dr. Morris advised that Rion should be coming back around soon however he would need to be moved to ICU until he was stabilized and for monitoring at least over night. By this point he had already started following people around the room with his eyes and when I kissed him he kissed me back. He was unable to speak still but he was attempting to. In fact, Dr. Morris was there when Rion spoke for the first time- he said something along the lines of gosh darn it but not quite so nice! Additionally, Dr. Morris was contacting a neurosurgeon, Dr. Kimberly Walpert, who would be coming to the hospital later that day to review the MRI and meet with us regarding our options.
Rion was moved to ICU early afternoon and it was there we waited for the neurosurgeon to come. We knew that she was in surgery at another hospital but would come to Athens Regional to meet with us as soon as possible. In the mean time, they started Rion on an anti-seizure drug (Keppra) and tried to make him as comfortable as possible. His speech was slowly coming back but he was still saying very little and became very frustrated when he tried to speak and could not. He was also asking for food but was not allowed to eat in case Dr. Walpert wanted him to go straight into surgery.
Dr. Walpert showed up around dinner time and met with me, Rion and Dana (Rion's mother.) She did not think Rion needed immediate surgery; in fact she did not want to discuss operating until his seizure activity had stopped. (She told us this is because operating on someone's brain when they are having seizure activity is very risky and likely to cause another seizure.) She agreed he needed to remain in the ICU over night and have an EEG done to watch his brain wave activity to determine if he was at risk for having another seizure even if one did not actually happen.
I left at this point to pick up Rion's car from work and take it home and to take a shower and pack some clothes. Normally patients are not allowed to have family stay over night when they are in ICU but I offered to sleep in the waiting room so I was allowed to stay. I am very glad I did because the night nurse came and woke me up around 2:00 AM because Rion was awake and asking for me. I was able to go in and spend about an hour with him until he was able to calm down and go back to sleep. (I appreciate that the nurses turned their head when I climbed up in the bed and laid down with him until he fell asleep.) At one point Rion said he was hungry so I had the nurse heat up him a cup of soup. But he took one sip and changed his mind because the soup was so nasty. The rest of the night was uneventful and Rion slept on an off until about 8:00 AM the next day. (I use the term sleeping loosely because he was hooked up to an IV drip, the EEG machine, the heart rate monitor, blood pressure cuff and oxygen...to say it was difficult to get comfortable enough to sleep would be an understatement).
______________________________________________
This is becoming so long I am going to take a break and continue later. He did end up staying until Wednesday 11/23 and while not much happened, I don't want to rush and leave out any important details.
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