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!

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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!

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!

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!

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!

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.

Sick Little Man

As you can clearly see, John is very sick right now. He had a flare with his arthritis late Friday, and things just kind of went downhill from there. Let's start at the beginning ...

Late Friday night, John developed a rash on his knees. I knew immediately when I saw it that within the next two days he was going to have a flare-up with his arthritis. Come Saturday he had a fever, and his knees hurt (classic arthritis flare-up). Sunday he was still hurting but doing better.

Monday he was still feeling icky and stayed home from daycare. Josh took him to the pediatrician that afternoon, and they didn't see anything. We figured it was just the arthritis flare-up lingering a bit, had him rest all day Monday, and sent him to daycare on Tuesday.

By Tuesday afternoon his fever was back (102*), and we picked him and Jake up from daycare around 4pm. By 6pm his fever was up to 103, and we called his pediatrician. She suggested we take him to urgent care. Before Celeste could get there to watch Jake for us, John began vomiting. His fever spiked just over 104, and he became extremely lethargic. Josh and I decided to head to the emergency room rather than urgent care, and we are so very glad we made that choice!

Once we got to the ER, John was immediately taken for height/weight and taken to a bed. The doctor was very concerned with his temperature and the fact that he was so dehydrated his mouth was nearly dry. They tried to start an IV, but the first line failed. They tried a second time in the other arm and managed to get it started.

After what felt like forever, a bag of IV fluid was hung. The doctor saw a slight ear infection in his left ear. Nothing major, but he ran a bag of antibiotics as well. Right after they started the antibiotics, we were sent down for x-rays of John's knees. The x-rays came back normal, but during the process John's IV line infiltrated (basically went through the vein and poured all the liquid/medicine straight into his arm). His arm became extremely swollen around the IV -- it felt like a balloon that was about to burst -- but it started going down right away when they just pulled the tape off the IV and stopped the fluids. His arm ended up bruised a bit, but nothing major from it thank goodness.

His fever started to go down but was still over 100* when the doctor started talking about sending us home. I said we would rather have him admitted and monitored overnight, and the doctor said that was fine as well. Around midnight John officially became a patient of the pediatric wing of St. Joseph Med Center in Mishawaka.

Throughout the night he was clearly in a lot of pain. He refused to eat or drink anything, and he had continuous fluids running through his (new -- that made three) IV for hydration. The poor child was extremely lethargic and very whiney.

All Wednesday morning he was monitored, hydrated, given antibiotics, and cuddled. The doctors could not see anything irregular on his labs (this being the second time bloodwork was run made for five pokes) and were very worried about him, especially since there were no clear indicators as to what was going on. Wednesday afternoon I asked if we needed to take him to Riley Children's Hospital in Indianapolis, where his pediatric rheumatologist is located. They agreed, and after just a couple hours John and I were loaded into an ambulance and headed down to Riley.

We arrived at Riley around 7pm Wednesday evening. They were able to get us admitted right away and get John to his room. Immediately, I could see that his team of nurses and doctors was excellent. They were all very concerned for John. A special team came in to start his IV -- they used an ultrasound machine to locate a good vein (there's six pokes ... here's when I stopped counting). John was very fussy and uncomfortable throughout the night. His fever gradually got lower and lower until it pretty much returned to normal finally. When his labs came back, I learned that his wbc (white blood count) was actually down to 26k (was 40k at the hospital in Mishawaka), but his sed rate (indicates inflammation and possible infection) was clear up to 112 (was 88 in Mishawaka and just 40 two weeks before all this). One doctor said his sed rate was "impressive." I joked that when we do something, we go all out. They rarely see a sed rate this high, especially in a child, and it has been cause for great concern.

All throughout that first night, we were up every hour or less for another poke, prod, or something. Poor John was just miserable. He even had to have catheters done twice in attempts to get urine samples for tests. By about 1am, he was just laying in his bed screaming and crying that he wanted to go home. Talk about break a mama's heart! I sat in the recliner with him all snuggled into my lap all through the night and the next morning.

Then the testing started. John had his blood drawn ... again ... and a little red wagon was brought into his room and padded with blankets and a pillow. They don't put the little children in wheelchairs here. They pull them in wagons, which makes it much more fun and less scary when/if they know they're going for another test.

Thursday the doctors and nurses were in and out of the room constantly ... and so were we. Seemed like as soon as John would get settled in and start to sleep a little, we had to fuss with him and take him downstairs for another test. He had a CT of his head, xrays of his knees, and an echo-cardiogram of his heart. The CT showed that his minor ear infection may have set into the bone by the ear, but there was not a definite answer for that yet. The xrays were normal -- no bone damage, which is a HUGE praise. The echo-cardiogram results wouldn't come back immediately -- have to wait for a doctor update on that. John didn't like any of the tests. The xrays and CT scans scare him -- especially the CT -- but he fell asleep during the echo! He was super excited after the echo because he got two little two SUV trucks that he LOVES.

Amber and Daniel came down Thursday afternoon to visit, which made John very happy. Poor auntie got to be a makeshift bed for fussy little man for over an hour, but she was happy to make him happy.

The whole time we'd been down here, I was telling the doctors that he's in a lot of pain -- waking up crying and screaming in the night, can't stand, very very upset whenever he's awake, and even whimpering in his sleep. They tried tylenol at first, which didn't help. Then, they switched to tylenol with codeine in it, which was better than regular tylenol but still left him crying and very upset most of the time. The codeine just allowed him to sleep a little bit, which was good, but he needed more. Finally, the doctors allowed the nurse to give John 1mL of morphine through his IV. I could tell the instant the morphine kicked in. John was a completely different child. His tears dried, and he relaxed and fell asleep (this is where Auntie got to play mattress for John). When he woke up, he was very silly. He asked Uncle Dan, "Who wants to do wagon races in the hallway?" After a couple seconds pause, John raised his little arm that's covered in a padded sleeve to protect his IV and yelled, "MEEEEEEE!!!" He played with his trucks a little but was decidedly upset that one didn't talk to him when he pressed the hood (he has a toy car at home that does), and then he napped some more in his bed.

Thursday night ... well, early this morning (Friday ... uhhh ... I think? lol) was a little rough for him because they needed to draw more blood. They couldn't get any blood to pull out of his IV (it's still flushing well and letting fluids through, just not drawing back), so they had to poke him again. His nurse opted to find someone else who was more familiar with drawing blood from a child. She said she didn't do it very often, and she wanted it to be a "one and done" poking situation -- totally appreciate and respect her for that! The nurse that came in found a really good vein in John's foot, poked once, got what they needed, and were done! Now, we're just waiting on the doctors to make their rounds for the morning (that'll start in 45min or so).

John has been restricted to clear liquids (water, apple juice, etc) since 6am -- which is fine considering food is not an issue for him right now (he hasn't eaten since late Tuesday morning). After 9am he can't have any food or liquids whatsoever. Come 10am he's scheduled to received an injection for the bone scan he has to have at noon. He will be sedated for the scan. I am pushing and hoping they will do an MRI on him, too, since he has one scheduled back home for January 3rd anyway. May as well get it all done here while we can, right?

So, now we're just waiting on the doctors and waiting on more tests. The results of his bone scan and **hopeful** MRI will determine what tests he'll need next -- a spinal tap and some other pretty invasive tests are being talked about if the bone scan doesn't show anything.  Keep John in your prayers extra today and especially this afternoon -- it's gonna be a pretty painful one for him.

I'm updating more often on Facebook, and my mom is getting texts throughout the day with updates. If anything new happens, Mom will know. Contact her for updates or check facebook! I know Celeste is updating Facebook here and there, too.

Thanks for the thoughts and prayers. The nurse just came in saying they didn't get enough blood, so we have to poke the poor child again. I'll try to update again late tonight with any news.