Yes, that seems to be the dance we're dancing lately with John's diagnosis ... or lack thereof.
Tuesday was John's first follow-up appointments (three to be exact) with different doctors at Riley since he was down there in the hospital. He had appointments with his ophthalmologist, rheumatologist, and ENT ...
Appointment One :: Ophthalmologist
John sees an ophthalmologist every few months because the JRA can also attack the eyes. The bad part is that by the time outward symptoms show, the vision is almost guaranteed to be lost. The doctor dilates his eyes every couple appointments and looks at the backs of his eyes at each appointment. John does surprisingly well with all of this. We make a game of his putting his chin in the little chin rest of the machines and his forehead up against the top bar part.
At this last appointment the doctor did not need to dilate John's eyes because they'd just been dilated when John was admitted to Riley in December. She kept repeating one specific test with him and saying "hmmmm" a lot, so of course I asked if everything was okay. She mentioned the fact that John holds his head very far to one side, but I could not figure out why that would make any difference for an eye exam. After finishing the test (again), the doctor told me that she is almost certain that there are six nerves surrounding the eye, and John has one above one of his eyes that is misfiring, per say. The misfiring causes double vision when John holds his head upright and normal, but if he tilts his head to the side, the double vision clears. Odd, right? What could possibly cause that kind of thing? Glad you asked! Apparently, this problem is most often seen right after a virus or infection occurs. Makes sense considering John started tilting his head to the side just a day or two before we left Riley (remember, he had the mastoiditis of his ear and the bone behind the ear). The only way to fix the nerve and correct the vision and head tilting is with surgery. I don't know the details on the surgery or recovery at this point, but we go back to see the pediatric ophthalmic surgeon on March 22.
Appointment Two :: Rheumatologist
Dr. Chira is John's rheumatologist. From the beginning he has been baffled by John's case because John does not present classic symptoms of any one specific disease. Tuesday, Dr. Chira decided that he no longer feels John has JRA, but he still cannot give us an answer (or now even a guess) as to what John does have. He tried to tell me that John may just be "confused" and "feeling an odd sensation that he can't describe, so he just says 'ow' to describe it." This really ticked me off because a toddler does NOT wake up crying in the middle of the night and holding his knees/ankles/elbows and saying, "Mama, it hurts! It hurts!" because they are confused about some strange feeling. And boy, did I let the doctor know that I felt that was ridiculous! He then told me that John is apparently just having some random sort of chronic pain that has no rhyme or reason and can't be diagnosed or pinpointed ... I also let him know how I felt about that load of bologna!! Josh and I absolutely REFUSE to be told there is not reason, diagnosis, etc. for John's pain. We KNOW there is SOMETHING going on inside his little body, and we will NOT stop until we find out exactly what it is! He was a perfectly healthy child just six months ago, and we want to know what has taken that away from our little man. After arguing with Dr. Chira for quite some time, he finally said he would consult with a neurologist and the pain team to find their thoughts on John's pain. We see him again on March 22 as well.
Appointment Three :: ENT
I was very thankful John had a follow-up appointment with the ENT who placed the tube in his left ear (while he was admitted to Riley in Dec) because as I put John into the car in the morning, his ear started draining this disgusting goopy stuff! ... The doctor was quite clearly NOT used to working with very very young children like John. He was very clinical and not especially "fun" when he tried to get John to cooperate with different things. I was not impressed, but I guess he checked what he needed to check in John's ears. He said that the drainage is from yet another ear infection, but the good news is that the tube is doing its job! He gave us a prescription for ear drops that need to be used twice a day in that ear, so hopefully they'll do the job!
The long and short of the story is that we are once again without a diagnosis and treatment plan for John. This frustrates us like none other, but we refuse to be told there is nothing that can be done and that there are no more options. There have to be options. There have to be explanations. We will do absolutely everything and anything we need to do in order to find them. For now, John's medications are being switched around a bit. Dr. Chira wants us to wean him off of the tylenol a little bit and see how John does with less/lower pain meds. We're also still waiting (about six more weeks, give or take) on the genetic blood panel to come back with results. Hopefully those will tell us more. Until then, all we can do is as much research as possible. I am reading up on chronic pain in children, JRA, and some other things. Perhaps those will give me some insight or direction on what we can do for John or where we can take him. Please continue to keep him in your prayers as this road has just gotten more frustrating than ever before.
18 January 2012
11 January 2012
Angels In Disguise
I am amazed at the generosity of the people around us right now -- friends, family, and even people I just chat with every now and again on facebook. Everyone has been so incredibly supportive of everything that's been going on with John and the journey we've taken thus far with him. The road has been stressful and frustrating and overall extremely difficult, but I am blessed to say we have not traveled it alone!
I wanted to put a special thank you out to everyone who has helped us. We appreciate each and every one of the angels that have entered into our lives -- from family who watched Jacob while we were down at Riley's, to those who have helped us financially in any way, to my co-workers for pulling together and covering my shifts so I could be with John, to those who have prayed for us, and even to those who have just been there to listen to our thoughts, concerns, and worries.
I cannot express enough how much all of you mean to us and how thankful we are to have you in our lives. We are still waiting on the genetic blood testing to come back -- it will take another 8wks approximately. Once we have that, we will have a more firm diagnosis and hopefully be able to set a more solid treatment plan. I have come to accept that this is not something that will go away for him, and it is not something that will get better for him. That is not an easy realization to come to, but knowing we have the support we do reassures me we can make it through whatever lies ahead of us on this bumpy road!
So ... thank you once again for everything. You are all angels in disguise!
I wanted to put a special thank you out to everyone who has helped us. We appreciate each and every one of the angels that have entered into our lives -- from family who watched Jacob while we were down at Riley's, to those who have helped us financially in any way, to my co-workers for pulling together and covering my shifts so I could be with John, to those who have prayed for us, and even to those who have just been there to listen to our thoughts, concerns, and worries.
I cannot express enough how much all of you mean to us and how thankful we are to have you in our lives. We are still waiting on the genetic blood testing to come back -- it will take another 8wks approximately. Once we have that, we will have a more firm diagnosis and hopefully be able to set a more solid treatment plan. I have come to accept that this is not something that will go away for him, and it is not something that will get better for him. That is not an easy realization to come to, but knowing we have the support we do reassures me we can make it through whatever lies ahead of us on this bumpy road!
So ... thank you once again for everything. You are all angels in disguise!
02 January 2012
Home Sweet Home
As I believe most of you already know, we are home with our little man now. We were released from Riley on Wednesday the 28th because John was clinically doing much better. He was walking pretty well by then and had even tried to run a couple times. The doctors sent out a pretty extensive genetic blood screening the night before we were discharged, but those will take 8-10 weeks to get the results. We won't have a more definite diagnosis for whatever is going on with John's knees until those come back. We'll get into that a little more later in this post ...
John's nurses were all very sweet when we left. He'd fell asleep in the wagon, and they were all disappointed that they couldn't tell him bye! They were very kind and wished us the best with John's journey and finding out what is wrong with his knees.
When we left Riley it felt like we had orders for enough prescriptions to start our own pharmacy! John is on an antibiotic for two weeks, a strong anti-inflammatory, a stomach protectant, a high dose of tylenol, and he also has an extremely strong pain prescription for when he has another flare up in his knees. Getting all of John's meds filled here at home proved to be quite the struggle due to their high grade and potency, but we finally got everything filled for him! His doctor also gave us another prescription for physical therapy. I have a physical therapist that we will use; I am in the process of scheduling his first appointment. The goal with the therapy will be to have exercises that will help get John through the flare ups, and we'll also be working on getting his gait back to normal when he walks and runs. He's stiff and sore, so this could be a challenge; but the therapist we'll be going to is the same that worked with Jake's foot after he was born, so I'm confident she'll do a great job.
Now, back to those genetic blood tests the doctors sent out ... If they come back with positive results, then that will mean John has a severe genetic problem ... but we'll deal with that if we have to turn that corner. If the genetic tests all come back clear, then the doctors fall back on Juvenile Rheumatoid Arthritis again. JRA is very difficult to diagnose because there is no specific test that can determine "yes, you have JRA." The only way to diagnose JRA is to eliminate everything else under the sun and hope you can find a combination of extremely potent medicines that help ease the symptoms. If in fact the doctors do fall back on JRA, then John will fall under a special category of JRA called "systemic JRA." It's a much more rare form of JRA, and we'll go into more details on it if we find out that's what he has.
John's nurses were all very sweet when we left. He'd fell asleep in the wagon, and they were all disappointed that they couldn't tell him bye! They were very kind and wished us the best with John's journey and finding out what is wrong with his knees.
When we left Riley it felt like we had orders for enough prescriptions to start our own pharmacy! John is on an antibiotic for two weeks, a strong anti-inflammatory, a stomach protectant, a high dose of tylenol, and he also has an extremely strong pain prescription for when he has another flare up in his knees. Getting all of John's meds filled here at home proved to be quite the struggle due to their high grade and potency, but we finally got everything filled for him! His doctor also gave us another prescription for physical therapy. I have a physical therapist that we will use; I am in the process of scheduling his first appointment. The goal with the therapy will be to have exercises that will help get John through the flare ups, and we'll also be working on getting his gait back to normal when he walks and runs. He's stiff and sore, so this could be a challenge; but the therapist we'll be going to is the same that worked with Jake's foot after he was born, so I'm confident she'll do a great job.
Now, back to those genetic blood tests the doctors sent out ... If they come back with positive results, then that will mean John has a severe genetic problem ... but we'll deal with that if we have to turn that corner. If the genetic tests all come back clear, then the doctors fall back on Juvenile Rheumatoid Arthritis again. JRA is very difficult to diagnose because there is no specific test that can determine "yes, you have JRA." The only way to diagnose JRA is to eliminate everything else under the sun and hope you can find a combination of extremely potent medicines that help ease the symptoms. If in fact the doctors do fall back on JRA, then John will fall under a special category of JRA called "systemic JRA." It's a much more rare form of JRA, and we'll go into more details on it if we find out that's what he has.
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Now that we are home, we're facing a completely new set of challenges. John is having nightmares of being poked with needles (which isn't surprising considering he was poked over 20 times while he was in the hospital for that week, and they woke him almost every night with a needle at least once). He wakes up screaming, "Stop it! Stop it! It hurts! Owie! Owie!!!" It's absolutely heartbreaking to hear him cry like that and see him curled in a ball with his arms over his head. He is also afraid to sleep in his bed. I think it reminds him of the crib in the hospital because they both have bars/slats on the sides. I'm considering upgrading him to a full-size bed, but we'd have to get him a new mattress and the bed rails for his bed, so we shall see. The good news is that his fits to fight sleep are getting **slightly** shorter, so I guess that's a start.
Since we're back I probably won't be posting on here as often because I am very busy with working full time, tending the boys, coordinating appointments, and still running my crafty business (www.arielscustomdesigns.com for those of you who haven't seen it yet). I will keep everyone updated as much as I can, though!
We hope everyone had a Merry Christmas and a fabulous New Year! May this year be brighter than last, and may your hopes and dreams come true!
27 December 2011
We're Getting There!
Sorry for the lack of updates the last couple days. There hasn't been too much going on around here with Christmas and whatnot. Let me think where I left off last ...
John's MRI came back mostly clear. They went ahead and just did it on his knees as well while they were in there. The results showed something "odd" in a couple spots on his brain, but the neurologist said not to worry about it. They don't know if it's just circumstantial because his body has been under so much stress, something that developed along with everything that's going on right now, or something that's always been there and is really nothing. We've been told to just watch how his motor skills are over the next several months to make sure he doesn't digress in anything. Overall, they aren't concerned with it. The rest of the MRI came back clear and gave no new leads on anything ... of course.
The bone scan confirmed the mastoiditis (infection in the inner ear that also spread to the bone behind the ear), but it didn't give any new information either. John is on ear drops and antibiotics for the mastoiditis, and the tube in his ear will also be helping that. The fluid from his ear that they sent out for lab tests came back fine, but they half expected that considering he'd been on antibiotics for nearly a week before it was tested. The doctors said the antibiotics basically sterilize any fluids like that and make the lab results not nearly as helpful.
Now that John has decided to start walking again, he doesn't want to stop! We took him for a walk around the hospital last night for some exercise. I expected him to walk for a little bit and then chill in the wagon the rest of the time. Nope! He actually decided he was going to pull the wagon himself! Silly boy! We literally had to fight him to let us carry him so his knees could rest! He's not walking completely normal yet, but that is probably a combination of the joint pain, not being on his feet for a week, and suddenly being on his feet constantly.
Today he's been pretty happy and even joined in for activity time in the playroom on our floor. He painted and played with trains and had an all around great time! So wonderful to see him playing again! He does seem to be overdoing it a little bit with all this walking, running, and activity. His knees are very sore, and he's whiney and irritable. But he's landslides better than he was when we first got here!
At some point today he has to have some pretty extensive blood work done to test for some less common problems. Also, a hem/onc doctor is supposed to come talk to us about some other tests to rule out any form of childhood cancer. His doctors said they don't think it is because he isn't presenting a classic case of symptoms ... but then again, he's not presenting a classic case of symptoms for anything at this point. We're just trying to rule out anything and everything we can think of at this point.
This morning the doctors said they expect us to be able to go home in the next couple days! Yay!
John's MRI came back mostly clear. They went ahead and just did it on his knees as well while they were in there. The results showed something "odd" in a couple spots on his brain, but the neurologist said not to worry about it. They don't know if it's just circumstantial because his body has been under so much stress, something that developed along with everything that's going on right now, or something that's always been there and is really nothing. We've been told to just watch how his motor skills are over the next several months to make sure he doesn't digress in anything. Overall, they aren't concerned with it. The rest of the MRI came back clear and gave no new leads on anything ... of course.
The bone scan confirmed the mastoiditis (infection in the inner ear that also spread to the bone behind the ear), but it didn't give any new information either. John is on ear drops and antibiotics for the mastoiditis, and the tube in his ear will also be helping that. The fluid from his ear that they sent out for lab tests came back fine, but they half expected that considering he'd been on antibiotics for nearly a week before it was tested. The doctors said the antibiotics basically sterilize any fluids like that and make the lab results not nearly as helpful.
Now that John has decided to start walking again, he doesn't want to stop! We took him for a walk around the hospital last night for some exercise. I expected him to walk for a little bit and then chill in the wagon the rest of the time. Nope! He actually decided he was going to pull the wagon himself! Silly boy! We literally had to fight him to let us carry him so his knees could rest! He's not walking completely normal yet, but that is probably a combination of the joint pain, not being on his feet for a week, and suddenly being on his feet constantly.
Today he's been pretty happy and even joined in for activity time in the playroom on our floor. He painted and played with trains and had an all around great time! So wonderful to see him playing again! He does seem to be overdoing it a little bit with all this walking, running, and activity. His knees are very sore, and he's whiney and irritable. But he's landslides better than he was when we first got here!
At some point today he has to have some pretty extensive blood work done to test for some less common problems. Also, a hem/onc doctor is supposed to come talk to us about some other tests to rule out any form of childhood cancer. His doctors said they don't think it is because he isn't presenting a classic case of symptoms ... but then again, he's not presenting a classic case of symptoms for anything at this point. We're just trying to rule out anything and everything we can think of at this point.
This morning the doctors said they expect us to be able to go home in the next couple days! Yay!
24 December 2011
Hangin' In There
John woke up in MUCH better spirits today than he has so far this week! He actually smiled and played off and on this morning. I spoke to his doctor about decreasing his morphine dose, so we cut it in half. Apparently, that was just a little too soon for him, and we had to bump him back up for a couple doses. He's back down to the half dose right now, and he's doing well with it.
This morning's blood work came back with some good news and some not so good news. His wbc is completely normal again, but his sed rate is still at 95. Down a little, but nowhere near where it ought to be (normal sed rate is 15). His rheumatologists feel that they can "blame" the high wbc and extreme irritability on the ear problems, but none of his doctors feel that his knee/joint problems can be blamed on the ear issues -- especially considering the joint issues began back in June.
They are all still very undecided as to what is causing John to have the flare ups. They are saying that it may just be a different "class" of the rheumatoid arthritis. Either way, he is going to end up on much stronger medicine. We still aren't sure if he is going to have to have the bone marrow testing. His regular rheumatologist is on the floor starting Monday, so we'll talk more with him then (he's been talking to the rheumatologist who's making rounds this week, but he'll be actually making rounds starting Monday).
Today, he finally decided he wanted to eat a little something. Yay! He had about one and a half travel-size boxes of cheerios, which is fabulous! And he's been downing sippies like a champ, too -- another great sign!
Each day the nurses set a goal of something we want to accomplish. Today's goal was to "have a poop" as they put it. lol : ) Mission accomplished! Finally!
Another goal I set for us was to try to get him to walk or at least stand today. He tried! Another yay! He didn't get very far and was extremely stiff, but I am extremely proud of him for at least trying! Considering he hasn't been able to bear any weight on his legs since Tuesday, the fact that he even tried is amazing.
Crazy child is completely wired right now and does NOT want to go to bed lol I'm hoping he passes out soon because I am exhausted. I believe Santa is visiting the hospital tomorrow, so that'll be fun!
Here you can see him playing in a wagon -- they use wagons here to transport the kids around the hospitals rather than wheelchairs. Makes it more fun, and John really enjoys it! He generally naps in his wagon after he has tests done, and (as you can see) he even likes to play in it when he has no tests!
This morning's blood work came back with some good news and some not so good news. His wbc is completely normal again, but his sed rate is still at 95. Down a little, but nowhere near where it ought to be (normal sed rate is 15). His rheumatologists feel that they can "blame" the high wbc and extreme irritability on the ear problems, but none of his doctors feel that his knee/joint problems can be blamed on the ear issues -- especially considering the joint issues began back in June.
They are all still very undecided as to what is causing John to have the flare ups. They are saying that it may just be a different "class" of the rheumatoid arthritis. Either way, he is going to end up on much stronger medicine. We still aren't sure if he is going to have to have the bone marrow testing. His regular rheumatologist is on the floor starting Monday, so we'll talk more with him then (he's been talking to the rheumatologist who's making rounds this week, but he'll be actually making rounds starting Monday).
Today, he finally decided he wanted to eat a little something. Yay! He had about one and a half travel-size boxes of cheerios, which is fabulous! And he's been downing sippies like a champ, too -- another great sign!
Each day the nurses set a goal of something we want to accomplish. Today's goal was to "have a poop" as they put it. lol : ) Mission accomplished! Finally!
Another goal I set for us was to try to get him to walk or at least stand today. He tried! Another yay! He didn't get very far and was extremely stiff, but I am extremely proud of him for at least trying! Considering he hasn't been able to bear any weight on his legs since Tuesday, the fact that he even tried is amazing.
Crazy child is completely wired right now and does NOT want to go to bed lol I'm hoping he passes out soon because I am exhausted. I believe Santa is visiting the hospital tomorrow, so that'll be fun!
Here you can see him playing in a wagon -- they use wagons here to transport the kids around the hospitals rather than wheelchairs. Makes it more fun, and John really enjoys it! He generally naps in his wagon after he has tests done, and (as you can see) he even likes to play in it when he has no tests!23 December 2011
Little Taste of Sweet Relief
**This entry was supposed to be posted late on 12/23 but for some reason never posted. Figured I"d post it now so there weren't any gaps in John's story** :)
John didn't get back from his MRI until after 10pm tonight. They said it went very well, and they had no problems during it. We won't know the results until tomorrow since it was done so late today. He was very upset when he came out of the anesthesia, but once I got there and held him he was okay. Little stinker peed all over my lap (and I do mean ALL over lol) while I was holding him! :)
Once we got back to the room, I was prepared for an absolutely inconsolable child. He was due for his pain meds at 6pm but obviously didn't have them since he was in MRI. To my surprise and delight, he was actually not too bad! He was still irritable and upset, and he cried a little about pain -- but it was NOTHING like how he was before! Prior to getting the fluid drained from his inner ear and the tube in his ear, he was an absolute mess. Any time he was awake, he was screaming and thrashing from pain. Now, he's just fussy! HUGE improvement! He's still on antibiotics and has to get drops in his ear. He also had a dose of morphine tonight, which (as usual) sent him on a loopy ride. Silly boy, he cracks me up.
So, like I said, draining the fluid from his ear and getting the tube definitely helped, but didn't totally fix things. We'll have to wait and see what the bone scan, MRI, and fluid test (from the fluid they drew from his inner ear) all come back to say; and we'll go from there! I'm so incredibly encouraged with his progress from the ear procedures today. I'm anxious to find out the test results and see what other tests lie in his near future ... but we'll deal with those as they come!
John didn't get back from his MRI until after 10pm tonight. They said it went very well, and they had no problems during it. We won't know the results until tomorrow since it was done so late today. He was very upset when he came out of the anesthesia, but once I got there and held him he was okay. Little stinker peed all over my lap (and I do mean ALL over lol) while I was holding him! :)
Once we got back to the room, I was prepared for an absolutely inconsolable child. He was due for his pain meds at 6pm but obviously didn't have them since he was in MRI. To my surprise and delight, he was actually not too bad! He was still irritable and upset, and he cried a little about pain -- but it was NOTHING like how he was before! Prior to getting the fluid drained from his inner ear and the tube in his ear, he was an absolute mess. Any time he was awake, he was screaming and thrashing from pain. Now, he's just fussy! HUGE improvement! He's still on antibiotics and has to get drops in his ear. He also had a dose of morphine tonight, which (as usual) sent him on a loopy ride. Silly boy, he cracks me up.
So, like I said, draining the fluid from his ear and getting the tube definitely helped, but didn't totally fix things. We'll have to wait and see what the bone scan, MRI, and fluid test (from the fluid they drew from his inner ear) all come back to say; and we'll go from there! I'm so incredibly encouraged with his progress from the ear procedures today. I'm anxious to find out the test results and see what other tests lie in his near future ... but we'll deal with those as they come!
Whirlwind
Today has been just that -- a whirlwind.
The nurses woke John twice last night to draw blood -- both times from his foot. I didn't even know that was possible, but apparently it is! He was obviously not a happy little dude. The results from that showed in his favor, though! His white blood count was down to 13k, and his sed rate was also starting to drop a little (I don't know the numbers for his sed rate). The antibiotics are apparently helping fight whatever infection he has going on in there right now. He's still in a ton of pain and is resting well with his morphine.
John had another very busy day today. Doctors have been in and out all day, and so have we! He was limited to just clear liquids starting at 9am, but he was sleeping then so he hasn't had anything since 8am. At 10am he was given an injection (into his IV) that would show certain things on the bone scan he had to have at noon. For the bone scan, he had to be sedated. He did wake up and fight a bit at one point, but they just gave him a little more meds and he was right back out.
While he was sedated they figured they'd just go ahead and do the spinal tap on him since he would need one anyone to rule out a few other big diseases and infections. It was very sad to watch them pick him up and lift him from one table to the next while he was completely limp. I had to leave the room during the spinal tap -- there was no way I could watch that, and since he was completely sedated I was okay with leaving.
After the spinal tap we headed back up to our room. We weren't up there very long before an ENT came to take a look at John. He said that John's left ear is infected, and one of the CT scans he had showed there was fluid in John's middle ear (behind the ear drum) as well as in the bone by the ear. They weren't sure if there was infection or not, so they wanted to go in and drain the fluid from the inner ear and possibly put a tube in; and he said there was a good possibility it would happen today (mind you it was already like 2pm).
Right as the ENT was leaving, the rheumatologist team came in. The doctors all went back out into the hallway to discuss things and make sure they were on the same page. When they came back in, they told me that John would indeed be having his left ear drained and a tube inserted, and he was also going to be having an MRI tonight. The MRI would be of his head, neck, and full spinal chord. I asked if they'd be doing his knees as well, and she said there wouldn't be enough time tonight, but that he will most likely have one before we leave. The rheumatologist explained that John's spinal tap came back irregular -- his white blood count in the fluid was like 20x's higher than normal (hence the MRI of head, neck, and spine).
The doctors were able to coordinate everything to where John was taken down to the ENT, put under for the draining and tubes in his ear, sent to recovery for just a few minutes, and then sent straight over to MRI and put back under before he was even fully awake and aware. His MRI will last close to four hours, and then there will be recovery time, etc. afterwards. I'm waiting for him now in our room, and when they're done they are going to call the nurse's station here and have someone take me to wherever he is (they aren't sure which recovery area he'll end up in).
All we can do at this point is wait for the test results and go from there. The doctors are talking about testing his bone marrow, but they are putting that off for the very last thing only to do if we have to. Their goal right now is to obviously figure out what's caused his symptoms, treat it until it goes away, and find a way to manage his pain (obviously without morphine so we can go home). The doctors are excellent and are all working together. They're very concerned for John and are trying very hard to figure things out. Many times I've been told "He has this symptom, but he's not following it by the book," so it's very difficult for them to put everything together. They're still trying to figure out if everything started with his arthritis, if there's something else coupled with the arthritis, or if there's something bigger all together.
I'll keep everyone updated as best I can. Thanks again for all the prayers and thoughts.
The nurses woke John twice last night to draw blood -- both times from his foot. I didn't even know that was possible, but apparently it is! He was obviously not a happy little dude. The results from that showed in his favor, though! His white blood count was down to 13k, and his sed rate was also starting to drop a little (I don't know the numbers for his sed rate). The antibiotics are apparently helping fight whatever infection he has going on in there right now. He's still in a ton of pain and is resting well with his morphine.
John had another very busy day today. Doctors have been in and out all day, and so have we! He was limited to just clear liquids starting at 9am, but he was sleeping then so he hasn't had anything since 8am. At 10am he was given an injection (into his IV) that would show certain things on the bone scan he had to have at noon. For the bone scan, he had to be sedated. He did wake up and fight a bit at one point, but they just gave him a little more meds and he was right back out.
While he was sedated they figured they'd just go ahead and do the spinal tap on him since he would need one anyone to rule out a few other big diseases and infections. It was very sad to watch them pick him up and lift him from one table to the next while he was completely limp. I had to leave the room during the spinal tap -- there was no way I could watch that, and since he was completely sedated I was okay with leaving.
After the spinal tap we headed back up to our room. We weren't up there very long before an ENT came to take a look at John. He said that John's left ear is infected, and one of the CT scans he had showed there was fluid in John's middle ear (behind the ear drum) as well as in the bone by the ear. They weren't sure if there was infection or not, so they wanted to go in and drain the fluid from the inner ear and possibly put a tube in; and he said there was a good possibility it would happen today (mind you it was already like 2pm).
Right as the ENT was leaving, the rheumatologist team came in. The doctors all went back out into the hallway to discuss things and make sure they were on the same page. When they came back in, they told me that John would indeed be having his left ear drained and a tube inserted, and he was also going to be having an MRI tonight. The MRI would be of his head, neck, and full spinal chord. I asked if they'd be doing his knees as well, and she said there wouldn't be enough time tonight, but that he will most likely have one before we leave. The rheumatologist explained that John's spinal tap came back irregular -- his white blood count in the fluid was like 20x's higher than normal (hence the MRI of head, neck, and spine).
The doctors were able to coordinate everything to where John was taken down to the ENT, put under for the draining and tubes in his ear, sent to recovery for just a few minutes, and then sent straight over to MRI and put back under before he was even fully awake and aware. His MRI will last close to four hours, and then there will be recovery time, etc. afterwards. I'm waiting for him now in our room, and when they're done they are going to call the nurse's station here and have someone take me to wherever he is (they aren't sure which recovery area he'll end up in).
All we can do at this point is wait for the test results and go from there. The doctors are talking about testing his bone marrow, but they are putting that off for the very last thing only to do if we have to. Their goal right now is to obviously figure out what's caused his symptoms, treat it until it goes away, and find a way to manage his pain (obviously without morphine so we can go home). The doctors are excellent and are all working together. They're very concerned for John and are trying very hard to figure things out. Many times I've been told "He has this symptom, but he's not following it by the book," so it's very difficult for them to put everything together. They're still trying to figure out if everything started with his arthritis, if there's something else coupled with the arthritis, or if there's something bigger all together.
I'll keep everyone updated as best I can. Thanks again for all the prayers and thoughts.
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