Since plans A-G have failed............ again, we go with plan F, which is Plan FORWARD.
So, Josh didn't tolerate the new meds very well, at all. In fact, he tolerated them so poorly that within just a few days (by Monday of the next week!) I was becoming very concerned about him. I brought my concerns to the attention of the doctor and staff, and they assured me that this was all "normal" (yeah, sure), and that they wanted to give him another week or so before doing anything. Besides, the residential treatment center they wanted to send him to could handle it.... and they were only a mere 500 miles away. Nice, huh? Well, we continued with much fasting and prayer, pleading for answers from Heaven. And, isn't it strange how those come about? The following week at treatment team, I again expressed my concerns about the combination of medications they had Joshua on, but they assured me that he was fine, and that they'd be ready to release him by the end of that week. It was "any day", they were going to get the go-ahead to send Josh to Reno. I had done my research, and honestly, Willow Springs doesn't seem like all that bad of a place. Better, by far, than the place he was in, it seems. But, still, I was very concerned about what to do with Joshua in the meantime.
Well, God answers our prayers in strange ways sometimes. His ways are not our ways. But, thankfully, I've been studying His ways for long enough that I can recognize His hand, even in spite of the strange circumstance surrounding things. After treatment team and family therapy that day, I left with the idea that I would request a med wash when we got to Reno. We'd be likely going there in just a few days, and I was getting my schedule cleared so that we could do that.
Fast forward to 3:30 pm that day. The nurse called to see if she could give Joshua some Tylenol, because he had a fever. Sure, go head, I said. Well, half an hour later, they called again, in a panic because now Josh's fever had jumped to 105.5 degrees, and they were letting me know that I needed to meet them at the ER so they could check Josh out. I went, we were there for several hours, they gave Josh some gatorade, said he looked fine, and sent us on our way.
The next day, same thing.... only this time, they waited til 10pm to call me, when his fever spiked again..... back to the ER, stayed there til 4am, and then came home, and was just so exhausted I could barely move. Got my kids to school, and vegged the rest of the day. Thursday they said he was okay, but then Friday morning, I got another call that I needed to come down right away, because now Josh had broken out into a horrible rash all over his body, and they didn't know what to do. So, I dropped everything, farmed out the little ones to my friend, and went down there. Yup, he was COVERED in this rash, his fever was back up, and he was NOT feeling good at ALL! The staff pediatrician came in, and she was perplexed.
Josh had thrown up several times in the last few days, and now with the rash, they were very concerned that he might give this illness to the other children in the unit. I asked OVER AND OVER AGAIN, "could this be a reaction to the medication?", knowing that one of the major side effects of the meds he was taking was rash and feeling of malaise, and vomitting. We were just going down the list. Oh, no, no, no... couldn't be that, they said. After all, we're professionals, and you're just a mom. What could you possibly know? We're sure it's a virus, they said, but we can't have him here, not knowing.... and our pediatrician doesn;'t really DO sick kids, so yeah... you gotta take him back to the ER.
Well, we contacted OUR pediatrician, through the nurses there at the facility, and he actually said to bring Josh in to his office, and he'd have a look. Somehow, they interpreted that to mean to take him to the ER. I dunno.... I just found this out a couple of days ago. But anyway, we took him there, poor kid was just shaking like a leaf (which is also a common side effect, whaddaya know?) he's covered all over with this rash, and everyone in the ER freaked out.
(Side note, they were plenty freaked out anyway, as they had a 15 year old kid who was brought in with a gunshot wound from a driveby shooting, and they ended up cracking his chest open, and still, could not save him. I so feel for his family, but I can tell you, they really DID try to save him. During all of this, they tried to throw me out of the ER, but I stood my Mommy ground, and told them that they would have to send us BOTH out -- me AND Josh -- because I was NOT going to leave him alone. They let us stay, but made us stay in our tiny little room.)
Several doctors came in and looked at Josh's rash, they quarantined us, and it was alot like the ET movie, where everyone had to dress up in these yellow suits with gloves and masks and goggles..... except for me, and I could come and go as i pleased, pretty much, as long as I promised to wash my hands. Yeah, thanks. I think they figured I had already been exposed or something. LOL The staff pediatrician at the ER couldn't come in the room to even look at him, because she was pregnant, and they thought MAYBE he had Fifth Disease (which is no big deal unless you are pregnant and get exposed), but they couldn't say for sure, because the test you do for that comes back in 7 - 10 days, maybe? Sometimes, longer. The staff at the psychiatric unit didn't want him back, because what if it WASN"T just Fifth Disease... oh wait... I have to tell you...... they went ON AND ON, about this being some form of Parvo virus, and they were sure he'd picked it up from a dog, and they just couldn't chance him infecting the general public with this very strange horrific disease,and on and on......
Well, they ended up admitting him, after many many hours.... the nurses on the peds unit were GREAT, but they were also totally freaked out with the parvo virus diagnosis, having never treated this TERRIBLE disease, and SO worried they would take the virus home and infect their puppies or something.... (Now, in case you don't know, Fifth Disease is caused by Human Parvo virus B19, but it is NOT the same virus that the dogs get, and again, unless you're pregnant, it's not a big deal. In fact, once the rash shows up, you're not likely contagious anymore anyway, so..... yeah.) They kept Josh for 6 days. That's right....... SIX days. I was there EVERY day, for at least a few hours, to check on him. He was fine, and his rash went away after a few days....... and the fever went away, too.
Now, during all of this, I just pretty much sat and watched God do His work. And, we continued to pray and fast and look for answers. As soon as Josh started his fevers, they stopped giving him the medications that I was worried about. They did give him another dose the day before he broke out into the rash. Coincidince? I don't know.... I know some people call it that. I don't.
The whole time Josh was in Summerlin Hospital, he didn't have anything other than Tylenol and Motrin. That was IT. Guess Josh got his med wash, and not only that, he got it under the supervision of medically trained personnel in the PICU unit (it was the only bed they had available!) And, in the midst of all of this, we also got an MRI of Josh's brain, and a visit with a pediatric neurologist.
During the time that Josh was in the hospital, I woke up one morning with an idea that I just could NOT let go of. It just sort of SLAMMED into my consciousness, and would not let up. The idea was... horse therapy! I contemplated the fact that we live in a small gated community, on a very small lot, and no room for a horse. But, that didn't stop me. I knew that the area we live in has a LOT of horses, and that SURELY there was a horse around us that was lonely, and needed some love. I determined that I would begin my search, even if it meant just driving around and knocking on doors, I was going to FIND a horse! Also, we had the idea of treating Josh with herbs, and giving his body a rest from all those chemicals in the medications they had been giving him. We knew we couldn't just NOT treat him, ya know? I had read in a book about parenting bipolar children which herbs had been found to be effective, and we decided it was worth giving it a try.
Well, I did find a horse! I didn't have to do any knocking... I just asked around. And, then at church last week, I made a public request for help. Immediately, a friend of mine told me that she had JUST the horse for Josh! She talked with the owner, and sure enough..... Daisy, an old appaloosa mare, will be our therapy horse! We will try to go and meet her today. (Last week was just too frazzled with all the appointments we had).
I ran all of this horse therapy ideas, and the idea of treating Josh with herbs past the pediatrician and Josh's therapist at the psych unit. Also, the school psychologist who has become my friend through all of this. They all agreed that it was worth a try. Much to the chagrin of the people at the psych unit (nurses), our pediatrician released Josh to me, and we have moved forward. We went to visit a master herbalist's staff, and they hooked us up with some herbs to get us started. The first week was different with Josh, as we saw him begin to cycle, but now it seems that he is evening out pretty good. He doesn't seem to mind taking the herbs, even though they taste strong, and he is seeing a difference in himself, too.
Aaron's brother turned us on to a homeopathic chiropractor, who we will be going to see today. Tomorrow, we will follow up with the neurologist, and then we will go from there.
Josh did VERY well at church yesterday, which is usually a really hard thing for Josh to handle. Three hours. But, he did really, really well! We were SO impressed!
Last weekend, we cleared out and painted the bedroom where Josh and two of his brothers sleep. It changed from a neon celery color to a nice spring waterfall blue. The change is amazing! Aaron built a triple decker bunkbed for them, and it is now in the room. It's awesome! I will have to post pictures soon. We now have the children arranged so that Josh essentially has his room to himself every other week, while Nate & Tim are with their mom. SO far, so good!
We will see how things go, and honestly, we are taking things one day at a time. We have received communication from the residential treatment center up in Reno, and that is still an option that we are keeping open. I am homeschooling Josh at the moment, and will likely enroll him in tbe K-12 charter homeschool for next fall. The school district will pay for the curriculum, and there will be a qualified teacher who will check in with us. I am excited about that. Josh just hasn't tolerated a full classroom very well -- since Kindergarten!
We are trusting that God will lead us down His paths, and so far, he has done just that. We will be starting work on Josh's pinewood derby car, and we will find a way to work that in to our homeschool curriculum for math and science. We are SO thankful for all the prayers that have been offered on our behalf, and for our friends who have chipped right in to help get the other children where they need to be while I have been trapsing around the countryside, so it seems, taking Josh to all his appointments. ;)
I have been reading this great book about parenting bipolar children, and wow, do I have a LOT to learn! Aside from the herbs, we are also finding that there are other accommodations that these kids need. And, we are implementing them one by one. I've gotta figure out how to download songs onto an MP3 player I got for Josh over the weekend. Mostly, we'll have primary church songs, hymns, and classical music on there, but it also has an FM tuner on it, so he can listen to other music as well.
Well, it's time to get moving... Gotta be out the door in one hour, and I've gotta get some kids dressed before we go. I just wanted to update, and sorry it's so long.... I am sure I didn't even include everything. There's plenty going on with the other children, but that will have to wait for another day.
In meantime..... we'll be playing with Daisy. :)
Monday, March 3, 2008
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