...I just got my official discharge date!! I am so excited!! After almost six weeks in the hospital, I can't wait to go home! Thanks to everyone who has been praying and crossing their fingers, because I am getting out ONE day before my birthday!!! I am so excited!! I don't even need a party, it will be the best birthday ever! I am also really excited to be out for the Christmas season.
It's funny, because I should be more nervous about going home than I am. I am still not safe to take steps on my own, so I am going home in a wheelchair, which has plenty of logistical and safety challenges that should make me uneasy, but I am so excited to get out of the hospital that all I feel is excitement!! Just the chance to go outside, to get a full night's sleep, to escape needles and blood pressure cuffs....I can't even imagine the luxury!!
So my official discharge date is this Thursday. Starting next week I will begin home health, which will send in physical therapists to help me orient to the house and my new equipment. I am hoping all this equipment will be very temporary and that I'll be running up and down the stairs before long. We'll see. I have been using a walker in therapy, and once I get a little more stable and my knees get a little more predictable, I should be able to make my way around the house (and the world!) a little more easily. As cool as a walker is, it makes me look no less than 90 years old, so soon as possible, we will be working towards crutches. I did get to try them out a couple times here in therapy... Have you ever tried walking with crutches when both your legs are impaired?? Haha. It's a pretty complicated process. Remembering a safe stepping pattern is enough of a challenge, let alone remembering other important things like balancing and watching for obstacles! But it shouldn't be long before I'm there.
Once the home health physical therapists sign off on my safety at home, I will begin outpatient physical therapy several times a week. We will continue working on all the things I've been doing here in rehab, with the goal of getting me back to my normal self. As for the medical side of things, I have an appointment with an MS neurologist and an appointment with a Barrow's neurosurgeon (thanks Vanie!) later on this month. So rehab is the first focus, and solving my medical mysteries is up and coming!
Reflecting back on the past six weeks (and the seven weeks of being sick before that!) it is hard to really process everything. So much has happened; so many challenges, so many blessings. Thanks to all of you for the many expressions of love and friendship. So many people have made great sacrifices to help both me and my family. I have been truly stunned and encouraged by the unexpected outpouring of love. I am realizing that no matter how hard life is, it is the people who make it worth living. I don't think I've made enough time in my life for people in the past year. Maybe that's what I needed....a wake up call to truly see all the people in my life for the amazing blessing they are. Thanks to everyone for supporting me, praying for me, and cheering me on. It has meant so much! I have honestly felt your prayers. There have been many difficult days and moments where I felt peace and hope instead of fear or despair. It is amazing what a prayer can do...I know now, more than ever, how real God is, and how much he loves us individually as his children.
I will try to share updates over the next few weeks, as I can.
Love,
Mandy
Tuesday, December 6, 2011
Monday, December 5, 2011
Diagnosis?
Many people have asked about my diagnosis, so I thought I would try to explain a bit. Sadly (mostly sad for me!) there isn't an easy answer to that question. After two weeks of intensive testing and puzzling out confusing clues, I had about five doctors, including two neurologists sign off on a diagnosis of MS. Since then, things have gotten a little more hazy, as we have had some differing opinions from additional doctors. It has all been a little complicated and frustrating, to say the least. When it comes to further investigating the diagnosis, we won't know anything for at least 6-8 weeks, probably longer. Waiting and repeating the MRI is the only way to get additional clues about the lesion without doing a biopsy. Given the risk of doing a biopsy in my motor cortex, waiting is the safer (though certainly not less stressful) option. So the diagnosis is on hold for a bit. Many people have been asking specific questions about tests we have and have not done, things we have ruled out, my condition, why we think MS, etc. For those of you who are asking, I will try to list out some of the things I know, and answer some of the questions that I have been asked frequently. For those of you who have thoughts or questions, feel free to email me (mandyclive@gmail.com)
Things I know:
1. The most important thing right now is my physical rehab, and getting back to passable function, and then on to normal function.
2. The lesion in my head is located in my motor cortex. It is almost 3 cm, which is much larger than most MS lesions.
3. MS, by definition, should have more than one lesion in either brain or spine. Not all lesions are detectable by MRI in the early stages, and this is one thing we will be watching for in follow up MRI's, to see if there are new lesions forming
4. I have several other "areas of enhancement" on my MRI, which could be signs of venous inflammation, and could be emerging lesions. Future MRIs will tell.
5. The MS panel of my cerebrospinal fuid (spinal tap) is positive. MS isn't the only thing that can cause this test result, but we have ruled out most of the other things that can.
6. My symptoms are responding to steroids and physical therapy, which is expected for a demyelinating disease like MS, or something related.
7. There have been several symptoms (heart, lungs, kidneys) that don't have explanations.
8. We have ruled out most infectious causes. We had an infectious disease doc who ran tests for every virus, bacteria, and parasite the labs and send-out labs could test. All came back negative except Rocky Mountain Spotted Fever (RMSF) and Typhus.
9. For whatever strange reason, we think the RMSF and Typhus are triggering false positive. We treated them, just to be safe. There is still some lingering curiosity over this one.
10. We have done several nerve studies, some which are completely normal, one which was abnormal (evoked potentials test).
11. My ongoing symptoms include extreme fatigue (unlike anything I've experienced before. Something as simple as showering can sap all of my energy and leave me feeling unable to even lift my arms to brush my hair), head fogginess and pressure, loss of balance, vertigo, muscle pain, extreme joint pain, trouble standing/walking (obviously), loss of coordination in my left hand (this is improving).
12. Yes, we ruled out Guillain Barre. We did several tests to be sure.
13. My lesion has been described as "Tumefactive." If you Google "Tumefactive Lesion" or "Tumefactive MS" you will find several stories that are similar to mine. It is rare, but there is precedent for such confusion over diagnosing a lesion and symptoms.
14. Every doc has a different opinion about my diagnosis or non-diagnosis. The neurologist here completely disagrees with the Mayo doc. The Mayo doc disagrees with the neurologists back at Desert. I honestly don't think we have found the doc I want to work with long term.
15. Without more information, the puzzle pieces of my case are not going to fit together. Hopefully follow up MRI's will tell us what we need to know.
Next Steps: We are hoping I will break out of the hospital later this week. (My birthday is Friday, and I am dropping some very not-subtle hints to the docs and therapists here!!) When they release me from here, the next step will be physical and occupational therapy at home for a couple weeks. As soon as the therapists are comfortable that I am safe with daily tasks at home, and able to transfer to a facility, I will begin outpatient therapy. Sadly for my family, I will be completely dependent on them to get me to and from therapy. (This has all been a tremendous lesson in accepting help. My family has been amazing in helping me and supporting me in every way; I really couldn't feel more loved.) I have an appointment with another MS specialist (Dr. Grainger) on December 15th (he is supposedly better than the Mayo doc, so we'll see. We are kind of shopping around for someone we really like). No matter who I am working with, we will repeat that MRI in about six weeks to see how things have changed.
Things I know:
1. The most important thing right now is my physical rehab, and getting back to passable function, and then on to normal function.
2. The lesion in my head is located in my motor cortex. It is almost 3 cm, which is much larger than most MS lesions.
3. MS, by definition, should have more than one lesion in either brain or spine. Not all lesions are detectable by MRI in the early stages, and this is one thing we will be watching for in follow up MRI's, to see if there are new lesions forming
4. I have several other "areas of enhancement" on my MRI, which could be signs of venous inflammation, and could be emerging lesions. Future MRIs will tell.
5. The MS panel of my cerebrospinal fuid (spinal tap) is positive. MS isn't the only thing that can cause this test result, but we have ruled out most of the other things that can.
6. My symptoms are responding to steroids and physical therapy, which is expected for a demyelinating disease like MS, or something related.
7. There have been several symptoms (heart, lungs, kidneys) that don't have explanations.
8. We have ruled out most infectious causes. We had an infectious disease doc who ran tests for every virus, bacteria, and parasite the labs and send-out labs could test. All came back negative except Rocky Mountain Spotted Fever (RMSF) and Typhus.
9. For whatever strange reason, we think the RMSF and Typhus are triggering false positive. We treated them, just to be safe. There is still some lingering curiosity over this one.
10. We have done several nerve studies, some which are completely normal, one which was abnormal (evoked potentials test).
11. My ongoing symptoms include extreme fatigue (unlike anything I've experienced before. Something as simple as showering can sap all of my energy and leave me feeling unable to even lift my arms to brush my hair), head fogginess and pressure, loss of balance, vertigo, muscle pain, extreme joint pain, trouble standing/walking (obviously), loss of coordination in my left hand (this is improving).
12. Yes, we ruled out Guillain Barre. We did several tests to be sure.
13. My lesion has been described as "Tumefactive." If you Google "Tumefactive Lesion" or "Tumefactive MS" you will find several stories that are similar to mine. It is rare, but there is precedent for such confusion over diagnosing a lesion and symptoms.
14. Every doc has a different opinion about my diagnosis or non-diagnosis. The neurologist here completely disagrees with the Mayo doc. The Mayo doc disagrees with the neurologists back at Desert. I honestly don't think we have found the doc I want to work with long term.
15. Without more information, the puzzle pieces of my case are not going to fit together. Hopefully follow up MRI's will tell us what we need to know.
Next Steps: We are hoping I will break out of the hospital later this week. (My birthday is Friday, and I am dropping some very not-subtle hints to the docs and therapists here!!) When they release me from here, the next step will be physical and occupational therapy at home for a couple weeks. As soon as the therapists are comfortable that I am safe with daily tasks at home, and able to transfer to a facility, I will begin outpatient therapy. Sadly for my family, I will be completely dependent on them to get me to and from therapy. (This has all been a tremendous lesson in accepting help. My family has been amazing in helping me and supporting me in every way; I really couldn't feel more loved.) I have an appointment with another MS specialist (Dr. Grainger) on December 15th (he is supposedly better than the Mayo doc, so we'll see. We are kind of shopping around for someone we really like). No matter who I am working with, we will repeat that MRI in about six weeks to see how things have changed.
Tuesday, November 22, 2011
Making Progress
Hello Everyone!
Things are progressing nicely in Mandy's world. Yesterday she stood at the edge of the parallel bars and got herself to a standing position and back down in the chair multiple times. Then they made her put one foot on a phone book and then stand, which makes one leg work more than the other. It's not easy for her but she can do it!
It amazes me how complex it is to re-learn balance and walking. We take it so for granted every day.
For our family night, we met here in the dining room while Mariah and Mylee did homework and Michael played his guitar and sang for all of us. It was a really wonderful evening. Michael knows enough songs to keep us entertained for a long time. It was wonderful. Mandy loved it!
Today they got Mandy using a special walker with armrests at the top. She said it was kind of scary but they did it. When I came in she was sitting in a wheelchair with her feet on a rolling stool moving the stool towards her and then away from her. I was teasing her that she looked like she was taking it easy but it was harder than you might think. She's doing great! So positive and cheerful.
One of the patients sitting across from her last night at dinner abruptly said, "Mandy, do you know what your example does for all of us here?" Mandy was at a loss for words. She said " We're all old and tend to feel sorry for ourselves. Then we see you, so young and with such hard struggles, yet you are so happy and so bright and so positive. You care about everyone and you bring such happiness to everyone you meet. I just wanted to tell you that and thank you before I leave." It brought tears to everyone's eyes as they all agreed with what was being said. It was such a sweet moment.
When she took those steps on Sunday in rehab the word spread like wildfire on the unit! Everyone, from staff to patients was congratulating her when they saw her. It's such an amazing process. We love the people here. And this rehab facility is so awesome. We feel very blessed.
Today, we surprised Mandy with a massage from Micaela's friend Robin. She was SO excited! I have to admit I'm jealous. She totally deserves it! She's been through SO much and she's finally at a point where she can actually enjoy it.
Yesterday her case workers came in to tell her that they had done a group conference with all of her therapists and they projected her discharge date to be in approximately 3 weeks. Mandy thought they were teasing because her original discharge date from acute rehab was the 19th then the 22nd. She's doing so much better now so she thought they would be kicking her out. But what we came to understand was that they were not feeling like therapy was making any difference before because she was still so sick. But now that's she's stronger she is making serious progress and they can realistically work with her now to get her back on her feet. That was a good news/bad news moment! :-) But we are so happy to be finally seeing good progress. She celebrated her 3rd week in the hospital on Sunday. She still gets so tired so easily but she works very hard when she's in therapy. They have to insist that she rests more in between sessions. Even just a few days ago she would be pretty strong in the morning but by evening she had very little strength. Now she's gaining more strength and more endurance every day! it's so exciting!
Thank you for your continuous prayers. We know they make a difference and that God is truly watching over her.
Love, Tami
Things are progressing nicely in Mandy's world. Yesterday she stood at the edge of the parallel bars and got herself to a standing position and back down in the chair multiple times. Then they made her put one foot on a phone book and then stand, which makes one leg work more than the other. It's not easy for her but she can do it!
It amazes me how complex it is to re-learn balance and walking. We take it so for granted every day.
For our family night, we met here in the dining room while Mariah and Mylee did homework and Michael played his guitar and sang for all of us. It was a really wonderful evening. Michael knows enough songs to keep us entertained for a long time. It was wonderful. Mandy loved it!
Today they got Mandy using a special walker with armrests at the top. She said it was kind of scary but they did it. When I came in she was sitting in a wheelchair with her feet on a rolling stool moving the stool towards her and then away from her. I was teasing her that she looked like she was taking it easy but it was harder than you might think. She's doing great! So positive and cheerful.
One of the patients sitting across from her last night at dinner abruptly said, "Mandy, do you know what your example does for all of us here?" Mandy was at a loss for words. She said " We're all old and tend to feel sorry for ourselves. Then we see you, so young and with such hard struggles, yet you are so happy and so bright and so positive. You care about everyone and you bring such happiness to everyone you meet. I just wanted to tell you that and thank you before I leave." It brought tears to everyone's eyes as they all agreed with what was being said. It was such a sweet moment.
When she took those steps on Sunday in rehab the word spread like wildfire on the unit! Everyone, from staff to patients was congratulating her when they saw her. It's such an amazing process. We love the people here. And this rehab facility is so awesome. We feel very blessed.
Today, we surprised Mandy with a massage from Micaela's friend Robin. She was SO excited! I have to admit I'm jealous. She totally deserves it! She's been through SO much and she's finally at a point where she can actually enjoy it.
Yesterday her case workers came in to tell her that they had done a group conference with all of her therapists and they projected her discharge date to be in approximately 3 weeks. Mandy thought they were teasing because her original discharge date from acute rehab was the 19th then the 22nd. She's doing so much better now so she thought they would be kicking her out. But what we came to understand was that they were not feeling like therapy was making any difference before because she was still so sick. But now that's she's stronger she is making serious progress and they can realistically work with her now to get her back on her feet. That was a good news/bad news moment! :-) But we are so happy to be finally seeing good progress. She celebrated her 3rd week in the hospital on Sunday. She still gets so tired so easily but she works very hard when she's in therapy. They have to insist that she rests more in between sessions. Even just a few days ago she would be pretty strong in the morning but by evening she had very little strength. Now she's gaining more strength and more endurance every day! it's so exciting!
Thank you for your continuous prayers. We know they make a difference and that God is truly watching over her.
Love, Tami
Sunday, November 20, 2011
Sunday November 20th, 2011
Happy Sabbath!
We are SO excited! I came in this morning and Mandy was sitting at the
parallel bars in a wheelchair. The physical therapist was putting hospital
shoe covers on her shoes. I was just sitting on a stool watching like always
and suddenly they helped her to a standing position and she started walking!
I was blown away! Serious and amazing progress!
I'm sorry I've been so slow in updating the blog. I often can't get computer
reception at the hospital and it's either so late when I get home or I'm busy
catching up on everything that's piling up at home.
We had some angels come and help get Mandy moved out of her apartment
yesterday. Her longtime friends Kelly (Robbie), Katie(Brandon) and Brianna (Justin)
got everything packed up and moved to the storage unit. Michael and Luis helped too.
Steve and Michael and Luis were helping me at home as well. We're trying to get the house
wheelchair ready for her to come home. ( But she's determined to WALK) out of here.It
was a busy and productive day. It's so touching to see such great and loyal friends
helping so lovingly and willingly. That's what the Savior meant when he invited us to
serve one another.
Mandy's friend and missionary companion,Jessica Olsen came last night and did her
weave and tinsel here in the hospital. They were having SUCH a good time laughing
and talking! The nicely done hair was good therapy but the laughing was even better!
We are SO encouraged! Thank you so much for all of your continued love and prayers.
And thanks to my sweet visiting teachers, Debbie Monks and Christi Alder for the lovely
meals. They are much appreciated!
Love, Tami
hair was good therapy but the friendship even more so.
We are SO excited! I came in this morning and Mandy was sitting at the
parallel bars in a wheelchair. The physical therapist was putting hospital
shoe covers on her shoes. I was just sitting on a stool watching like always
and suddenly they helped her to a standing position and she started walking!
I was blown away! Serious and amazing progress!
I'm sorry I've been so slow in updating the blog. I often can't get computer
reception at the hospital and it's either so late when I get home or I'm busy
catching up on everything that's piling up at home.
We had some angels come and help get Mandy moved out of her apartment
yesterday. Her longtime friends Kelly (Robbie), Katie(Brandon) and Brianna (Justin)
got everything packed up and moved to the storage unit. Michael and Luis helped too.
Steve and Michael and Luis were helping me at home as well. We're trying to get the house
wheelchair ready for her to come home. ( But she's determined to WALK) out of here.It
was a busy and productive day. It's so touching to see such great and loyal friends
helping so lovingly and willingly. That's what the Savior meant when he invited us to
serve one another.
Mandy's friend and missionary companion,Jessica Olsen came last night and did her
weave and tinsel here in the hospital. They were having SUCH a good time laughing
and talking! The nicely done hair was good therapy but the laughing was even better!
We are SO encouraged! Thank you so much for all of your continued love and prayers.
And thanks to my sweet visiting teachers, Debbie Monks and Christi Alder for the lovely
meals. They are much appreciated!
Love, Tami
hair was good therapy but the friendship even more so.
Friday, November 18, 2011
Getting Worse
Hi,
Things have been a little busy. Mandy's symptoms were getting worse yesterday and her
trunk strength and head control were decreasing. The people in inpatient rehab were finally
concerned. They didn't give us much warning last night when they SUDDENLY decided they
weren't comfortable with her medical symptoms on their rehab floor. So they transferred Mandy
by ambulance to Good Samaritan. It was late, they put her in a semi-private room on a crowded,
insanely noisy unit and really didn't do anything at all for her. This morning she saw a neurologist
and all of his tag-alongs and they really didn't have anything to suggest that would help. ZERO help. So
we are currently scheduled to go back to rehab. To say that I am completely frustrated would be the
understatement of the century! And you can imagine that it's way worse for poor Mandy.
The good news is that even though her trunk strength is still diminished, her legs are improving.
Whatever this is, it doesn't seem to be through with it"s course yet.
We love you! Thanks for all of the prayers and love.
Tami
Things have been a little busy. Mandy's symptoms were getting worse yesterday and her
trunk strength and head control were decreasing. The people in inpatient rehab were finally
concerned. They didn't give us much warning last night when they SUDDENLY decided they
weren't comfortable with her medical symptoms on their rehab floor. So they transferred Mandy
by ambulance to Good Samaritan. It was late, they put her in a semi-private room on a crowded,
insanely noisy unit and really didn't do anything at all for her. This morning she saw a neurologist
and all of his tag-alongs and they really didn't have anything to suggest that would help. ZERO help. So
we are currently scheduled to go back to rehab. To say that I am completely frustrated would be the
understatement of the century! And you can imagine that it's way worse for poor Mandy.
The good news is that even though her trunk strength is still diminished, her legs are improving.
Whatever this is, it doesn't seem to be through with it"s course yet.
We love you! Thanks for all of the prayers and love.
Tami
Wednesday, November 16, 2011
Update 11/16/2011
Hey Everybody,
Mandy has had a couple of rough days. She got up yesterday and did some of
her therapy before we took the transport to Mayo Clinic again. They scheduled
electrical studies that specifically evaluated her spinal column. (Today we found
out that those studies are normal.) Mandy did not feel well at all. I was worried
she wouldn't be able to tolerate the tests. But she was an absolute trouper and
got the tests done in record time. She got back to the unit and they tried to do
some of her remaining therapy but she was completely wiped out. She still tried
hard and was able to do some things but her therapist could see she wasn't up
for much. One of the things that concern me the most is that she is loosing her
trunk strength and can't always maintain her balance sitting up. We have had to
strap her into her chair while we have been at Mayo so she can sit up. Last night
she couldn't do anything at all to help get herself in bed. It's VERY discouraging.
Today Mandy was scheduled for a repeat MRI They couldn't give her a schedule
so she started therapy then they called her at 10:30. She was gone 2 1/2 hours.
Then a quick lunch and right back to therapy. Long day. The MRI results were
supposed to be sent to Mayo asap so on a hunch I went down to radiology to see
if they were on their way. They looked at me like I was crazy and said they don't
transfer records to Mayo. (Of course.) So I got copies of the disk and the reports
and ran them to Mayo myself. Dr. Carter called Mandy shortly after that which was amazing.
He gave her the news about the electrical studies (normal) and told her he hasn't been able
to get the specifics on the MS Panel. He needs the EXACT number of bands and he's
looking at a specific kind of band. All we have been able to get is a report that says there
are "bands present." After multiple calls I FINALLY got the name of the lab and the doctor can call
the lab directly. If they didn't do the complete panel, the spinal tap will have to be repeated.
The sample would be too old now. I will be SO ANGRY if that is true! The spinal tap
has been (according to Mandy) the worst part of this entire experience! And that's saying
a lot!!! We're still waiting on the blood tests. As far as the MRI, Dr. Carter hadn't looked at the
radiologists report but looking at the MRI himself, he said it was what he would expect to
be seeing an MS lesion to be doing with high steroid therapy. It hasn't changed much. The lack
of response to steroids also decreases the likelihood that it's cancer. And Dr. Carter is not pushing
to do a biopsy at this point. However nothing still explains her level of disability. We don't have all
the info yet. What else is new?
Mandy is completely exhausted and went to bed early tonight. These days have been really
tough on her. They're already planning her discharge. When they told me that yesterday I
about lost it! She's losing ground and they're sending her home?? What's wrong with this
picture? After a re-evaluation they extended her projected discharge date to the 22nd. We
have been measuring doorways and counter heights etc., to figure out how we can accommodate
a wheelchair at home. That's the least of our worries.
Thank you for the continued prayers and loving support.
Tami
Mandy has had a couple of rough days. She got up yesterday and did some of
her therapy before we took the transport to Mayo Clinic again. They scheduled
electrical studies that specifically evaluated her spinal column. (Today we found
out that those studies are normal.) Mandy did not feel well at all. I was worried
she wouldn't be able to tolerate the tests. But she was an absolute trouper and
got the tests done in record time. She got back to the unit and they tried to do
some of her remaining therapy but she was completely wiped out. She still tried
hard and was able to do some things but her therapist could see she wasn't up
for much. One of the things that concern me the most is that she is loosing her
trunk strength and can't always maintain her balance sitting up. We have had to
strap her into her chair while we have been at Mayo so she can sit up. Last night
she couldn't do anything at all to help get herself in bed. It's VERY discouraging.
Today Mandy was scheduled for a repeat MRI They couldn't give her a schedule
so she started therapy then they called her at 10:30. She was gone 2 1/2 hours.
Then a quick lunch and right back to therapy. Long day. The MRI results were
supposed to be sent to Mayo asap so on a hunch I went down to radiology to see
if they were on their way. They looked at me like I was crazy and said they don't
transfer records to Mayo. (Of course.) So I got copies of the disk and the reports
and ran them to Mayo myself. Dr. Carter called Mandy shortly after that which was amazing.
He gave her the news about the electrical studies (normal) and told her he hasn't been able
to get the specifics on the MS Panel. He needs the EXACT number of bands and he's
looking at a specific kind of band. All we have been able to get is a report that says there
are "bands present." After multiple calls I FINALLY got the name of the lab and the doctor can call
the lab directly. If they didn't do the complete panel, the spinal tap will have to be repeated.
The sample would be too old now. I will be SO ANGRY if that is true! The spinal tap
has been (according to Mandy) the worst part of this entire experience! And that's saying
a lot!!! We're still waiting on the blood tests. As far as the MRI, Dr. Carter hadn't looked at the
radiologists report but looking at the MRI himself, he said it was what he would expect to
be seeing an MS lesion to be doing with high steroid therapy. It hasn't changed much. The lack
of response to steroids also decreases the likelihood that it's cancer. And Dr. Carter is not pushing
to do a biopsy at this point. However nothing still explains her level of disability. We don't have all
the info yet. What else is new?
Mandy is completely exhausted and went to bed early tonight. These days have been really
tough on her. They're already planning her discharge. When they told me that yesterday I
about lost it! She's losing ground and they're sending her home?? What's wrong with this
picture? After a re-evaluation they extended her projected discharge date to the 22nd. We
have been measuring doorways and counter heights etc., to figure out how we can accommodate
a wheelchair at home. That's the least of our worries.
Thank you for the continued prayers and loving support.
Tami
Tuesday, November 15, 2011
Mayo Clinic
Hey Everyone,
As most of you know, we had an appointment at Mayo Clinic today. This
doctor is a specialist in MS. After reviewing the chart and conducting his
own neurological exam, he is NOT convinced that this is MS. MS is still a possibility
of course, but he doesn't think it looks like an MS lesion and he doesn't feel like
this lesion could possibly be causing the symptoms she is having. So he has
ordered more blood tests, he's repeating the nerve conduction studies and he's
repeating the MRI's to see what effect the steroids have had on the lesion. If we find
no answers, the biopsy is back in the conversation.
It's another twist in a very difficult course. It's really rough on Mandy to feel
like she's back to square one without a diagnosis. (Of course getting the news
that you have MS isn't exactly good news or a big relief either!)
The doctor reminded us that speculating about this until we know what it is, is
really wasted energy and accomplishes nothing helpful. (Especially for the patient)
It's good advice. We don't know if this news is good, bad or ugly so just hang tight and
we will all be patient together. Thank you for all of the positive, uplifting, spiritual
messages. Those are the things that help Mandy the most.
We know that it's a complete miracle that we got into this doctor. Please keep
praying for the doctor's to find the answers we need so we can chart the
appropriate course. And obviously don't stop praying for a miracle. :-)
Mandy was feeling really lousy and flu-like again today. Her left hand still has some
weakness but she can do a little more with her legs. Part of her progress is because
she's been taught in physical and occupational therapy how to use the rest of her body to
compensate for the things her legs can't do. She's really focused on everything they
are teaching her and is amazingly resilient, even when she is utterly exhausted. Which
happens often with everything she endures. She's a rock star!
Mandy's meeting new people every day in rehab and each one has a story. Some have no
family or friends in AZ and are all alone. It makes us appreciate all the more, the vast love
and support of family and dear friends. Thank you so much for that!
Love, Tami
As most of you know, we had an appointment at Mayo Clinic today. This
doctor is a specialist in MS. After reviewing the chart and conducting his
own neurological exam, he is NOT convinced that this is MS. MS is still a possibility
of course, but he doesn't think it looks like an MS lesion and he doesn't feel like
this lesion could possibly be causing the symptoms she is having. So he has
ordered more blood tests, he's repeating the nerve conduction studies and he's
repeating the MRI's to see what effect the steroids have had on the lesion. If we find
no answers, the biopsy is back in the conversation.
It's another twist in a very difficult course. It's really rough on Mandy to feel
like she's back to square one without a diagnosis. (Of course getting the news
that you have MS isn't exactly good news or a big relief either!)
The doctor reminded us that speculating about this until we know what it is, is
really wasted energy and accomplishes nothing helpful. (Especially for the patient)
It's good advice. We don't know if this news is good, bad or ugly so just hang tight and
we will all be patient together. Thank you for all of the positive, uplifting, spiritual
messages. Those are the things that help Mandy the most.
We know that it's a complete miracle that we got into this doctor. Please keep
praying for the doctor's to find the answers we need so we can chart the
appropriate course. And obviously don't stop praying for a miracle. :-)
Mandy was feeling really lousy and flu-like again today. Her left hand still has some
weakness but she can do a little more with her legs. Part of her progress is because
she's been taught in physical and occupational therapy how to use the rest of her body to
compensate for the things her legs can't do. She's really focused on everything they
are teaching her and is amazingly resilient, even when she is utterly exhausted. Which
happens often with everything she endures. She's a rock star!
Mandy's meeting new people every day in rehab and each one has a story. Some have no
family or friends in AZ and are all alone. It makes us appreciate all the more, the vast love
and support of family and dear friends. Thank you so much for that!
Love, Tami
Friday, November 11, 2011
Mandy Update
Dear Family,
I'll keep everyone updated on Facebook as I go. If anyone is not currently connected on FB who wants to be, tell them I'd love to. Just send an invite. Also, I don't have a good collection of everyone's email addresses, so if you know someone not listed here, I'd love to have you forward the message.
Thanks to everyone who has been fasting, praying, and thinking of me. If anyone has questions, wants to talk, email, text, etc, I'm always open to it. In fact, emails, facebook messages, etc have all been really awesome in helping me through the last few weeks. For anyone not on Facebook, my email is mandyclive@gmail.com
I'm going to post this on Facebook today, but I wanted to let you know I've officially been diagnosed with Multiple Sclerosis. It's really rare to have MS present so dramatically the first time, but with a brain lesion, the fact that I can't walk, and some recent test results, the doctors are certain.
They just transferred me to the acute rehab hospital at Banner Baywood, and intensive treatment and rehab start immediately. Also, an unbelievable miracle ...we got an appointment with the top MS specialist at Mayo Clinic for next Monday. It normally takes months to get in. The girl who helped me book my appointment was completely in shock, saying how she had looked at the schedule only an hour before and there was nothing available. The next possible appointment wasn't until December 21st. Completely amazing, and a strong reminder that we are not alone in this.
Overall, my case so far has been very extreme and unusual, and there have been several unexplained complications that have left doctors confused and wondering if there may be other things going on as well. We're excited to be getting into Mayo so I can get the best care and try to sort out what has been happening in the past several weeks, and figure out how to move forward.
As for how I actually am, and the rehab....still pretty sick overall and exhausted from two weeks of torture and treatment in the hospital. I must have been poked with needles 30-40 times while at Banner Desert. Also, because I'm so young, and because of where the lesion is in my head, they've been giving me nearly experimental doses of steroids. It's been a little much, and that part of the treatment will continue for a few weeks more, and then we'll be able to see how the lesion in my head is responding. I currently can't stand or walk myself, so it's a great thing to be here at the rehab hospital now. It's going to be a rough road, but the Lord has helped us in amazing ways already, and I know he will continue to do so.
Overall, my case so far has been very extreme and unusual, and there have been several unexplained complications that have left doctors confused and wondering if there may be other things going on as well. We're excited to be getting into Mayo so I can get the best care and try to sort out what has been happening in the past several weeks, and figure out how to move forward.
As for how I actually am, and the rehab....still pretty sick overall and exhausted from two weeks of torture and treatment in the hospital. I must have been poked with needles 30-40 times while at Banner Desert. Also, because I'm so young, and because of where the lesion is in my head, they've been giving me nearly experimental doses of steroids. It's been a little much, and that part of the treatment will continue for a few weeks more, and then we'll be able to see how the lesion in my head is responding. I currently can't stand or walk myself, so it's a great thing to be here at the rehab hospital now. It's going to be a rough road, but the Lord has helped us in amazing ways already, and I know he will continue to do so.
I'll keep everyone updated on Facebook as I go. If anyone is not currently connected on FB who wants to be, tell them I'd love to. Just send an invite. Also, I don't have a good collection of everyone's email addresses, so if you know someone not listed here, I'd love to have you forward the message.
Thanks to everyone who has been fasting, praying, and thinking of me. If anyone has questions, wants to talk, email, text, etc, I'm always open to it. In fact, emails, facebook messages, etc have all been really awesome in helping me through the last few weeks. For anyone not on Facebook, my email is mandyclive@gmail.com
I'll try to keep everyone updated.
Lots of love,
Mandy
Wednesday, November 9, 2011
Hey Everyone!
I know Micaela did an update on Facebook but I wanted to take a minute to
add to the blog. Last night we had a fun spa night. We washed Mandy's hair
in a very clean and amazingly useful bedpan! It was actually a pretty good
system. Then Micaela blow dried her hair and flat ironed it. It was quite a
production for 11 o'clock at night. And Mandy was so exhausted that she actually
slept through the night for the first time in literally months. That was amazing!
Mandy had a pretty good day yesterday and we had her up in the wheelchair so
she could get out of the claustrophobic room she's in now. Physical therapy came
and worked with her legs while she was in the wheelchair. It was pretty tough to do
but she was a trouper.
Today she got to take her heart monitor off which also meant she could get out of a
hospital gown. She's ultra sensitive to smells right now and hospital smells are
especially disagreeable to her. (It's a little hard to avoid them but we're trying! She's off
most of her pain medications. The neurontin is really helping keep the pain under control.
That's a big deal because she has had so much pain throughout this ordeal and when
we get one issue resolved, there's a new one to deal with.
Tomorrow they are going to try to get her transferred to the inpatient rehabilitation center
so they can concentrate more on her physical and occupational therapy. She only sees
physical therapy here once a day for 20-30 min. Once she gets to the new unit they will be
working 3 hours a day in divided sessions which should be a workout! 3 hours doesn't seem
like it's that much but it will be. She's finally well enough to begin but it won't be easy by any
means. (Tonight her left hand started doing funky things again. It comes and goes.) The
neurologist thinks she will do well in therapy but he cautions her that this COULD be a long road
to travel. Some patient's only need 2 weeks of therapy. Some need much more. And Mandy's isn't
exactly a minor case. There are no definitive answers in this process. We're praying things will progress
rapidly. We will keep you posted.
It's so humbling to realize all the things we take for granted every day. Having the use of your
legs is a big one. But we realize there are many things that could be worse and this trial is just
a moment in time. Mandy is realizing how much she hasn't fully appreciated the suffering that others
go through. She used to have a job in Provo doing home health care. She now gets to see the
other side of the equation. It's such a lesson in compassion for the suffering of others and a reminder
to us all to be more compassionate and more grateful for our health and strength.
Tonight, Mandy's friends Kelly and Katie came to be with her while I went to YW in Excellence with
the girls. That was such a great experience for Mandy. They escaped the floor in the wheelchair
and even went outside. Mandy loved it! I didn't know it was Kelly's birthday when I asked them to come.
What sweet and loving friends! How blessed we truly are.
Love to all,
Tami
I know Micaela did an update on Facebook but I wanted to take a minute to
add to the blog. Last night we had a fun spa night. We washed Mandy's hair
in a very clean and amazingly useful bedpan! It was actually a pretty good
system. Then Micaela blow dried her hair and flat ironed it. It was quite a
production for 11 o'clock at night. And Mandy was so exhausted that she actually
slept through the night for the first time in literally months. That was amazing!
Mandy had a pretty good day yesterday and we had her up in the wheelchair so
she could get out of the claustrophobic room she's in now. Physical therapy came
and worked with her legs while she was in the wheelchair. It was pretty tough to do
but she was a trouper.
Today she got to take her heart monitor off which also meant she could get out of a
hospital gown. She's ultra sensitive to smells right now and hospital smells are
especially disagreeable to her. (It's a little hard to avoid them but we're trying! She's off
most of her pain medications. The neurontin is really helping keep the pain under control.
That's a big deal because she has had so much pain throughout this ordeal and when
we get one issue resolved, there's a new one to deal with.
Tomorrow they are going to try to get her transferred to the inpatient rehabilitation center
so they can concentrate more on her physical and occupational therapy. She only sees
physical therapy here once a day for 20-30 min. Once she gets to the new unit they will be
working 3 hours a day in divided sessions which should be a workout! 3 hours doesn't seem
like it's that much but it will be. She's finally well enough to begin but it won't be easy by any
means. (Tonight her left hand started doing funky things again. It comes and goes.) The
neurologist thinks she will do well in therapy but he cautions her that this COULD be a long road
to travel. Some patient's only need 2 weeks of therapy. Some need much more. And Mandy's isn't
exactly a minor case. There are no definitive answers in this process. We're praying things will progress
rapidly. We will keep you posted.
It's so humbling to realize all the things we take for granted every day. Having the use of your
legs is a big one. But we realize there are many things that could be worse and this trial is just
a moment in time. Mandy is realizing how much she hasn't fully appreciated the suffering that others
go through. She used to have a job in Provo doing home health care. She now gets to see the
other side of the equation. It's such a lesson in compassion for the suffering of others and a reminder
to us all to be more compassionate and more grateful for our health and strength.
Tonight, Mandy's friends Kelly and Katie came to be with her while I went to YW in Excellence with
the girls. That was such a great experience for Mandy. They escaped the floor in the wheelchair
and even went outside. Mandy loved it! I didn't know it was Kelly's birthday when I asked them to come.
What sweet and loving friends! How blessed we truly are.
Love to all,
Tami
Tuesday, November 8, 2011
Monday in the hospital
Hey everyone! It's been a good day. The Neurontin has really made a
difference in Mandy's pain. Her lungs feel better and her back pain is
much less severe. She's busy charming all the staff. She's gotten really
brave about asking the laboratory staff if they're good at blood draws. Some
of them are really taken aback but she seriously asks them how confident they
are. She's tired of being stuck and insists on people that know what they're doing.
This from the girl who had to have 4 people hold her down once for a penicillin shot.
Life is all about perspective!
Micaela came and stayed with Mandy last night and I'm pretty sure it was more like
a slumber party. You should have seen Micaela's chicken dance. The only problem
with staying here is that Mandy likes the temperature in the room at about 65!! It feels
like camping in the Uintas in December! Really? But whatever makes her comfortable!
I think her body themostat has gone crazy too! I come to the hospital dressed like it's
winter and I think people on the outside think I'm over-anticipating the sudden cool weather!
We have finally graduated from the spacious ICU room to the closet on the telemetry floor.
This room is insanely SMALL!!!! We are up close and personal. I'm serious. The bed
has to be on a slant for the door to even close. Mandy is fine but my claustrophobia is
in full swing! It's so nice that she's finally feeling a little better.
They called in a kidney doctor to consult today so she now has 7 doctors following her
case and that isn't counting their partners! When Mandy does something she does it BIG!!
We are still waiting on test results and we have no new news. Patience!
Mandy has nerve conduction studies in the morning. She's so excited to have little needles
sticking in her everywhere. It's become a way of life.
We're checking out rehab centers so we know where she wants to go when we get to that point.
Thank you so much for your prayers and support. My grandson Garner even has his friends
at school praying for Mandy. (That made her cry)
Love to all! Tami
difference in Mandy's pain. Her lungs feel better and her back pain is
much less severe. She's busy charming all the staff. She's gotten really
brave about asking the laboratory staff if they're good at blood draws. Some
of them are really taken aback but she seriously asks them how confident they
are. She's tired of being stuck and insists on people that know what they're doing.
This from the girl who had to have 4 people hold her down once for a penicillin shot.
Life is all about perspective!
Micaela came and stayed with Mandy last night and I'm pretty sure it was more like
a slumber party. You should have seen Micaela's chicken dance. The only problem
with staying here is that Mandy likes the temperature in the room at about 65!! It feels
like camping in the Uintas in December! Really? But whatever makes her comfortable!
I think her body themostat has gone crazy too! I come to the hospital dressed like it's
winter and I think people on the outside think I'm over-anticipating the sudden cool weather!
We have finally graduated from the spacious ICU room to the closet on the telemetry floor.
This room is insanely SMALL!!!! We are up close and personal. I'm serious. The bed
has to be on a slant for the door to even close. Mandy is fine but my claustrophobia is
in full swing! It's so nice that she's finally feeling a little better.
They called in a kidney doctor to consult today so she now has 7 doctors following her
case and that isn't counting their partners! When Mandy does something she does it BIG!!
We are still waiting on test results and we have no new news. Patience!
Mandy has nerve conduction studies in the morning. She's so excited to have little needles
sticking in her everywhere. It's become a way of life.
We're checking out rehab centers so we know where she wants to go when we get to that point.
Thank you so much for your prayers and support. My grandson Garner even has his friends
at school praying for Mandy. (That made her cry)
Love to all! Tami
Sunday, November 6, 2011
Sunday, Nov.6th, 2011
Update,
Mandy is doing a bit better today. They've tried a different medication to try to
specifically relieve nerve pain. It's really helping a lot. She's been up in the chair
most of the day and is much more awake and alert. We've had some great
conversations. Her infectious disease doctor came in and has been doing LOTS of
research to see if there is anything else she can test for. She actually has a couple
more tests she wants to run. Tomorrow they are planning more nerve conduction
studies. They were going to transfer her out of ICU today but she is not quite ready.
Her potassium is FINALLY normal but now her calcium is low. The doctor's keep
reminding me that she just finished massive doses of steroids and that doesn't do a
body good! She is now on steroids by mouth and they will gradually wean her off them.
Sounds like it will take a couple of weeks to do that. We're checking out inpatient
rehab centers in anticipation of her discharge from the hospital. She has to regain her
strength first as they have a pretty intensive therapy program. Right now she continues to
have full feeling in her legs and can move them a little more than before. They haven't
done physical therapy in the ICU so we're looking forward to her feeling better so she can
begin therapy again.
Thank you to the many, many dear people who fasted for Mandy today. We really feel
so much peace in this process and know that we are being blessed in SO many ways.
You help in ways you may never know and I want you to know that we literally feel your
prayers in Mandy's behalf. And we are deeply grateful.
Pray for the doctors to be inspired to find the answers here. It still remains a big mystery.
Mandy remains strong, calm, cooperative, patient, kind and spiritual. She totally keeps me in awe.
Love,
Tami
Mandy is doing a bit better today. They've tried a different medication to try to
specifically relieve nerve pain. It's really helping a lot. She's been up in the chair
most of the day and is much more awake and alert. We've had some great
conversations. Her infectious disease doctor came in and has been doing LOTS of
research to see if there is anything else she can test for. She actually has a couple
more tests she wants to run. Tomorrow they are planning more nerve conduction
studies. They were going to transfer her out of ICU today but she is not quite ready.
Her potassium is FINALLY normal but now her calcium is low. The doctor's keep
reminding me that she just finished massive doses of steroids and that doesn't do a
body good! She is now on steroids by mouth and they will gradually wean her off them.
Sounds like it will take a couple of weeks to do that. We're checking out inpatient
rehab centers in anticipation of her discharge from the hospital. She has to regain her
strength first as they have a pretty intensive therapy program. Right now she continues to
have full feeling in her legs and can move them a little more than before. They haven't
done physical therapy in the ICU so we're looking forward to her feeling better so she can
begin therapy again.
Thank you to the many, many dear people who fasted for Mandy today. We really feel
so much peace in this process and know that we are being blessed in SO many ways.
You help in ways you may never know and I want you to know that we literally feel your
prayers in Mandy's behalf. And we are deeply grateful.
Pray for the doctors to be inspired to find the answers here. It still remains a big mystery.
Mandy remains strong, calm, cooperative, patient, kind and spiritual. She totally keeps me in awe.
Love,
Tami
Friday, November 4, 2011
Update: Mandy mentioned the rough night she had last night. Emergency CT scan. EKG. She really hasn't felt right all day either. They called in a pulmonologist who ordered more tests. He was concerned enough about her weak respiratory condition to put her in the ICU for observation. Her electrolytes are out of wack, her heart rate is too low. So many issues it's ridiculous. They did an echocardiogram as well. She's so miserable uncomfortable I wish I could trade her places. Even for a little while. We now have 6 doctors working with her. And no clear answers. Yet
She continues to be positive and strong and amazing in the midst of great suffering.
More soon. Love, Tami
Sent via BlackBerry from T-Mobile
Need Prayers Today
Need prayers today. I swear I almost died last night, I felt so awful and strange. Heart rate in the low 40's and emergency CT scan showed "opacities" in my lungs. No blood clot, so they are making me wait till morning to talk to a pulmonologist about what's in my lungs. Docs baffled about my heart rate being in the 40's. It's normally 77. Not sure how today will play out, but hopefully for the best. As I was being rushed for emergency tests last night, I kept thinking of everyone fasting and praying for me. Your support and love means more than you know. Thank you all for everything. More details from my mom later. This is all we know for now. Pray that the docs will be able to find a clear diagnosis so they can treat me properly. Love you all!
Mandy
Mandy
Thursday, November 3, 2011
Thursday, November 3rd 8pm
Update: It's been a very busy day for Mandy. Blood draws first thing. Then more electrical studies. This time with a focus on her legs. It took a couple of hours. Then I saw her for 5 whole minutes before they whisked her off for an MRI about noon. (This is the different kind of MRI suggested by the neuroradiologist. It looks more like graphs than pictures and the MRI tech told us they don't even know how to read it. Very specialized) Mandy hadn't even eaten breakfast and it was noon!!! So I gave her a liquid yogurt and she was eating a muffin as they were wheeling her down the hall. Really? Sleeping and eating are obviously NOT priorities around here! She was just a little wiped out when she got back. The lab came in to draw blood AGAIN and we both freaked out. Too many blood draws each day. In trying to cover every possible base, they are now testing for two specific parasites that can cause tumor like lesions in the brain. Interesting. These parasites aren't common in the US but they are in developing countries; and Mandy has been in so many countries. The most recent trip had her in Thailand. Apparently these parasites can live in your body for prolonged periods of time without being recognized. The parasites encapsulate so the body doesn't recognize or respond to them as a foreign body. But apparently the body develops antibodies to them which can be found in the blood. It's a LONG SHOT but we're looking at everything. We're still waiting on a bunch of tests. Patience is the name of the game.
Mandy gets SO frustrated with some of these IV medications. She can taste the chemicals, and some of them make water and other liquids taste funny. She describes drinking water like "drinking hydrogen peroxide and rubbing alcohol." And that is pretty frustrating for a big water drinker! So today when the nurse started to hang the IV she said "Wait! Let me drink some water while it tastes like water." The things we take for granted. Right?
Mandy got up and walked again today. The physical therapist noted definite improvements in her leg's ability to coordinate. We were also able to wash her hair while she was up and that made her feel a little better.
We are working on creating a blog for future information. We will keep you posted on that. Thanks for all of your love and prayers.
Tami
Mandy gets SO frustrated with some of these IV medications. She can taste the chemicals, and some of them make water and other liquids taste funny. She describes drinking water like "drinking hydrogen peroxide and rubbing alcohol." And that is pretty frustrating for a big water drinker! So today when the nurse started to hang the IV she said "Wait! Let me drink some water while it tastes like water." The things we take for granted. Right?
Mandy got up and walked again today. The physical therapist noted definite improvements in her leg's ability to coordinate. We were also able to wash her hair while she was up and that made her feel a little better.
We are working on creating a blog for future information. We will keep you posted on that. Thanks for all of your love and prayers.
Tami
Wednesday, November 2nd 6pm
Update: Today has been a pretty tough day for Mandy. She's been very nauseated again and we haven't been able to get on top of it completely. There is encouraging progress though. She got up with occupational therapy and was able to walk 12 steps (with a walker, a safety belt and lots of assistance) She's now in league with Laney! (Micaela's baby who just turned one and can take 12 steps too! LOL) It unfortunately made her more nauseous though and life in the hospital doesn't allow any breaks.A healthy person would be wiped out! The best news is that she is now able to raise each leg about 6 inches off the bed by herself!!!!. And she can bend her knees. She hasn't been able to do that since she arrived here. Her arms are pretty normal now and she uses both equally. She had new studies today. An EEG (electroencephalogram) and other electrical studies that identify how her nerves are transmitting. It took about 3 of hours and I couldn't be with her. She said it was pretty interesting. They attached her to a bunch of electrodes and had her watch a monitor while they stimulated different nerves looking for any "disconnects" It's exhausting. And they're doing more tomorrow. The techs saw me in the hall and were so amazed that Mandy was so cheerful and cooperative even when she was feeling so lousy. We're now waiting for a different kind of MRI contrast that a Neuroradiologist recommended.
We spoke to the Neurosurgeon last night. He was very kind and informative. Highlights? He agrees that the 2 most likely causes are MS or lymphoma. Her lesion is on the left side of her brain. The left side controls the functions of the right side of the body. It should ONLY be affecting the right side not both sides though. So the fact that both sides are involved is another puzzle piece and leads him to suspect it's something else. He said that lymphoma usually has defined borders and Mandy's lesion does not have defined borders. He was cautiously optimistic that it isn't lymphoma but we can't yet rule it out. The lesion is in the motor strip so removing it surgically would be out of the question because the risk of paralysis is too high. It would be treated with steroids and radiation (No chemo.) He says its usually a very successful treatment and the lymphoma just "melts away." The interesting thing is that she's currently on steroids. If we end up doing a biopsy (which we will only do if we can't diagnose this any other way because it's risky too) he will take her off steroids for 5 days before he does it. The steroids would make the biopsy inaccurate. (False negative) There are currently no cancer cells in her cerebral spinal fluid but he said that doesn't mean anything b/c a lymphoma is basically encapsulated. He also agrees it could be MS. The CSF tests we're still waiting on will hopefully give us more clues. This isn't a typical presentation for MS either though. It's not usually this dramatic and they usually see more than one lesion on the brain.
I talked to Mandy's original infectious disease doctor today. He reviewed everything and said that everything is clear from an infectious disease point of view. (They're even questioning the Rocky Mountain Fever diagnosis and are sending out samples of blood to be retested.) He said this is now completely in the neurologist's court because everything else is normal and unremarkable. The mystery continues. I can't help but think that her prolonged sickness has now led us to pay attention to something even more concerning which in the end will be a blessing. Early diagnosis is always better.
Thank you your your prayers, for fasting today and for keeping Mandy in your thoughts. She has loved hearing from so many people and continues to be so grateful for your love and concern. Her patience in suffering is unbelievable. I'm truly in awe.
Sorry this is so long. I tried to consolidate as much as possible.
Love, Tami
I talked to Mandy's original infectious disease doctor today. He reviewed everything and said that everything is clear from an infectious disease point of view. (They're even questioning the Rocky Mountain Fever diagnosis and are sending out samples of blood to be retested.) He said this is now completely in the neurologist's court because everything else is normal and unremarkable. The mystery continues. I can't help but think that her prolonged sickness has now led us to pay attention to something even more concerning which in the end will be a blessing. Early diagnosis is always better.
Thank you your your prayers, for fasting today and for keeping Mandy in your thoughts. She has loved hearing from so many people and continues to be so grateful for your love and concern. Her patience in suffering is unbelievable. I'm truly in awe.
Sorry this is so long. I tried to consolidate as much as possible.
Love, Tami
Wednesday, November 3rd
Thanks to everyone for the prayers and fasting, and words of love and encouragement. It's been a particularly rough day and hearing from so many of you has really meant alot and helped me to stay positive. I do believe the Lord is watching out for me and feel his presence in so many ways. Love you all, we'll keep in touch.
Mandy
Mandy
Tuesday, November 1, 2011, 5:23 pm
Update from Mom:
Mandy is having more pain in her back (partially from the lumbar puncture) and joint pain in her hips and knees. They gave her pain medicine that made her nauseous all morning, which was not fun on top of everything else. So we're trying milder meds, heat pads and other comfort measures to keep her pain under control. Physical therapy came in and got her standing up today (sadly, that is a big deal.) She can feel her legs, we just need to remind her brain how to make her them work. She needs more sleep and that just isn't happening.We are still waiting for results from the blood tests they drew last night. But what we DO know is that they have found a lesion in her brain. They honestly don't at this point know what it is. They are discussing MS (Multiple Sclerosis) and lymphoma. However, her symptoms don't completely align with either at this point. MS would typically have multiple lesions in the brain. And MS doesn't generally present with bilateral muscle weakness with this degree of severity. They did a spinal tap. The first thing they were looking for was any kind of infection. Once we got the all clear on infection, they started her on high doses of steroids to see if that would reduce the lesion. They also sent the fluid for other tests which won't be completed for a few more days. If it's MS, there are certain proteins that will be present in the cerebral spinal fluid. It's not a definite diagnosis but it would provide another piece of the puzzle. The obviously frustrating thing is that there are no definite answers here.
Obviously we don't want it to be lymphoma! That would require chemotherapy and radiation. There is talk of a biopsy. They have a consult with a neurosurgeon. We should see him tonight. We realize that there are SO many people who love Mandy and are so concerned for her welfare. We appreciate that so much. We are calling a family/friend fast tomorrow. We would be honored if everyone that can would join us. We will do our best to keep everyone updated. Mandy sends her love and appreciation for all the love, support and well wishes from all of you.
Love, Tami.
Tuesday, November 1, 12:41am
Update: Still at the hospital. Anemic after being attacked by the vampires! We are pretty sure they have run every test the lab knows how to process!! To clarify, she still has Rocky Mountain Fever and Typhus but the Drs are investigating what else is going on. They're not sure if we are looking at complications or possibly an additional diagnosis. She can't move her legs and has little use of her...... arms, with no explanation at this point, which is our primary concern and cause for investigation. They think she will be here for at least a few days. :( She has a neurologist and two Infectious Disease Drs on her case, we've been so blessed to have such a great team taking care of her. She's been a warrior today going through so much testing and uncertainty. Our sweet mom has been by her side all night last night and all day today. I now get to be with her tonight... Thank you so much for all your concern, love, and prayers. Ill keep you updated….--Posted on Mandy's Facebook by sister Micaela
October 31, 2011
Update: Mandy has gotten worse and has been admitted to the hospital until they can figure out what is going on with her. :( They have ordered a Ct scan, MRI, Lumbar puncture, and lots of lab work. Please pray for her and the Dr's to figure out this "medical mystery" girl! Pretty sure she will be in a medical book after this! However, as miserable as she is, through it all she has a smile on her face and is cracking jokes! We love you sis!! --Posted on Mandy's Facebook page by sister Micaela
October 29, 2011
After almost seven weeks of being sick, I've officially been diagnosed with Rocky Mountain Spotted Fever and Endemic Typhus. Apparently, the doc is required to report my diagnosis to the state department of health! Spotted Fever and Typhus?! I feel like I just walked out of a history book. If I disappear, you'll know I've been quarantined. --Mandy's Facebook Post
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