January 2, 2012 § Leave a comment
No, I’ve not forgotten about the blog. Forgotten is how I think we’re feeling lately. Nothing much has changed at all. Still fighting with start/stop GI bleeding – both upper and lower. I get no response whatsoever from the bleeding disorder clinic when I call and/or email asking for updates on possible appointments that they were supposed to be scheduling with their GI and ENT departments. Amazing, isn’t it?
We managed to spend the holidays at home without a significant bleed. We did seek the help of our pediatrician, though, as D had developed a very nasty chest cold (that he was kind enough to share with me on top of my sinus infection that morphed into something that swelled one entire side of my face for days). While we were there, I asked him to consider writing a referral to St Jude’s or another treatment facility after the holidays, as we didn’t want to be gone from home unless it was absolutely necessary. With an almost apologetic chuckle he agreed that we definitely needed help outside of the state of Arkansas.
Where we will end up is yet to be determined. Though we know that St Jude’s has already agreed to try to find some answers for us, I want to make sure we end up at the place most likely to be of help instead of constantly bouncing around. Dr Mac mentioned Oklahoma City, St Louis, Vanderbilt, and St Jude’s, but said that wherever we felt most comfortable was who he would attempt to work with. As much as I appreciate his willingness to work with us, I couldn’t help but wonder out loud after we left his office exactly what was going on to give him such an immediate change of heart. He is one who so many times before stated there was no better place for us than Children’s, and this time, I didn’t even have to give him any details of what was going on at all. It was almost as if he’s heard the same type of story from other patients and is starting to get the same view that we’ve had for a while now… just not getting the help we need. Again, I have to qualify that statement with a disclaimer that the orthopedic team there has been, and continues to offer us top notch treatment – sending much love to Dr B!
Anyway … as I said, sort of feeling forgotten in this health care mess. I’ve spent a lot of time working the last several months, and on my down-time, I’ve been attempting to shy away from the computer by doing a bit of crochet work. I spent New Years Day doing nothing but crochet for about eight straight hours! Unfortunately, it was at that point that I ran out of the yarn I was using to make D a camo afghan for his bed. At least this habit is one that is portable, so I can stock up on yarn and take it with me, wherever this new year finds us.
Wishing all a happy, healthy, and bleed free 2012.
November 20, 2011 § 1 Comment
Those who have followed our blog are familiar with what I call a Boom! day. We’ve all had them, and yet, we’re seemingly caught off-guard when they arise. A Boom! day is one of those days where everything appears to be normal and suddenly, Boom!, everything gets turned upside down in the blink of an eye. If you’re a member of the bleeding disorder community, those Boom! days typically include the out-of-nowhere bleeds that immediately throw everyone into a panic. We’ve made a return to the Boom! days around here.
Tuesday was a predictable day. D went to school, I began working, and R was focused on her school work here at home. I got a text from D telling me that during a basketball game at school, he accidentally got smacked in the face by a hand and then the basketball that he was attempting to rebound. His nose was bleeding, and the coach wouldn’t allow him to see the nurse. (In all fairness, I will say that the blood was draining backward, down the throat and not flowing down out of the nose so it wasn’t readily apparent to the eye that D was bleeding.) At any rate, the taste of blood that was steadily flowing faster and thicker, and the refusal of permission to see the nurse was enough to strike fear in the heart of a young man who has a bleeding disorder and has been hospitalized and on the verge of transfusions from nosebleeds! He asked that I bring Stimate, and please help him. So, if he can’t go to the nurse, I needed the nurse to go to him. I called the nurse and got her started to the gym, then texted D back and told him to go with her and I’d bring Stimate. Within ten minutes, I was checking him out and he did need the medication. We got the bleeding stopped, and once he threw up all the blood that was in his stomach he felt better even though his face was still pretty swollen. Too add insult to injury, we were told that he would be suspended for three days for using his cell phone at school because a teacher saw him checking his text message where I had instructed him to meet me in order to get meds. Boom! day number one …
Boom! day number two occurred yesterday. Everything was rolling along like a normal Saturday around our home. Things were finally beginning to calm down after the extreme chaos with D at school (who hasn’t been suspended – but we haven’t been told WHAT their plan is yet). We went out to eat last night and then we headed to buy groceries. For some reason, both R and I were feeling a bit ‘strange’, but I chalked it up to the exhaustion of the past week. As we were looking for the perfect turkey for a Thanksgiving feast with the extended family, I noticed R suddenly looked very pale. I turned back around to the turkey bin, and when I looked back over my shoulder, I saw her make a move to the trashcan. I already knew what was going on. Quietly, she pushed open the trashcan and leaned over it, opened her mouth, and out spilled approximately half a cup of bright red thick blood. Boom! I told dad, “We’ve gotta get out of here. We have to go NOW.” The look on my face must’ve been enough to convey the situation because he instinctively looked directly at her and asked if she needed him to carry her, or could she walk out to the car while I paid for what we had in the cart. She walked, but was in tears before getting halfway up the aisle.
The GI bleed was back with a bang. Abdominal pain, blood, clots, gagging … yes, we experienced it all last night in a matter of minutes. R refused to go to the hospital. Why didn’t I make her go? Because we both feel the same way … they aren’t going to help her anyway. We’ve been through this too many times, and they may or may not administer Humate-P, but regardless, they send her home. No searching for a reason… “uncontrolled von Willebrand Disease”. BOOM
November 11, 2011 § Leave a comment
I *thought* I had posted last week, only to come here and find that I managed to store the brief posting as a Draft and not fully publish the silly thing. I apologize, and I’ll catch you up real quick.
Basically all I had to say was that the mysterious GI bleeds had managed to stop on their own, no thanks to any help from our local HTC. We’ve been waiting for months now for them to even SCHEDULE us an appointment with the GI Clinic and/or the ENT Clinic, both of whom we were told we needed to see again. I’ve tried calling, I’ve tried emailing … nothing. No response other than, “We’ll have them schedule and send you an appointment in the mail.” Hmm … why am I absolutely positive that if I told the billing department that something wouldn’t sit well with them?
Anyway … as I said, the bleeding did stop … for a total of about 9 days. Now, guess what?? It just returned. Literally, like within the last 15 minutes. It isn’t like R was doing anything crazy, either. She’s been here with me all day, doing school work, watching a bit of television, ate some fries for lunch … not one thing to start up this craziness. Yet, out of nowhere, she suddenly had a mouth full of blood for no reason. I have said before that I would not question God on why my kids have von Willebrand Disease, and I still haven’t. I will admit, though, I’m beginning to question why we can’t control it, or why it only stops for a matter of days, and then we’re back fighting it for months. Through it all, though, I’m still thankful for a diagnosis of vWD, and not something for which there is no treatment, or that the chances of survival are bleak.
We saw our beloved orthopedic surgeon earlier this week. He said R is healing nicely, though there are still a few “soft spots” in areas where the bone is still attempting to bond together strongly. Unfortunately, our next visit with him won’t be for six months, but we’ll sure be happy to go see him! None of us are looking forward to ending that relationship, but we will be glad to know the bone is finally healed well. Who knows? We’ll probably see him within six months – if, for no other reason, than to deliver to him some fresh-baked goodies.
So .. there you have it, folks! I’m really wishing I could be in attendance at the National Hemophilia Foundation’s convention this year, but considering the bleeding started anew today, I suppose this may be one reason why it didn’t work out. I’m keeping up with all the goings-on via Twitter, and thanks to Ryan’s wonderful Facebook postings and pictures! Hoping all have a fantastic time and leave Chicago wondering what hit ’em!! :)
October 16, 2011 § 1 Comment
Although I have been incredibly busy on a new project at work, I intentionally waited to post to the blog because I wanted to post good news for a change. Seems all I end up writing is more doom and gloom, and I wanted to lighten up the mood a bit! So… guess what? Our good news is: R was finally able to be baptized, and the very next day, she got her learner’s permit to drive. My (personal) good news is that my dear, sweet husband actually bought ME a gift for his birthday – a brand new car! Whatever I wanted, he said.🙂 Yes… he likes living dangerously, I suppose. I didn’t get too extravagant, though – and we got a really good deal on new Toyota Camry.
However, I was really hoping to get to post some good news about R’s fight with von Willebrand disease. Last night we were cautiously optimistic about going three whole days without a bleed. Of course, about 45 minutes ago, that all came to a crashing halt. Looks like it’s the lower GI bleed that we thought had ceased that is causing us the most problems right now. Of course, any GI bleed is scary. This one, though, even though it doesn’t appear to be a hemorrhagic bleed, just will not go away for any length of time.
I emailed the treatment center earlier to inquire as to where things stand with getting an appointment with the gastroenterology department since we still haven’t heard from them. I really don’t want to go out of state if we don’t have to — at this point, though, I’m seriously beginning to question things… I know we have good doctors, and I know that things sometimes take time. I also believe that I’ve been about as patient as they could expect and then some. My patience has definitely ran out. My daughter is still bleeding and in pain to the point of tears. But, of course… until her blood volume drops below the “normal” range, nobody will take anything serious… I’m seriously sick of it all.
… So much for good news.
September 21, 2011 § Leave a comment
Today is day number 9 (yes NINE) of the on-going lower GI bleed. We went to the hospital ER last week, and when R’s CBC results came back, she was given an abdominal x-ray, one dose of Factor, and we were sent on our not-so-merry way. It seems that the x-ray came back normal, so there was no explanation for the intense abdominal pain that her literally doubled over on the ER exam bed. Because her blood volume was on the lower side of normal, they assured us she was not hemorrhaging internally and recommended one dose of Factor Wednesday night, and two beginning on Thursday. Because we only had two doses at home, they agreed to order a dose to be given in the emergency department.
R’s Factor dose was increased to 3,000 units twice daily. Original orders on Thursday were that we were to continue the two doses daily until the bleeding stopped completely and then follow this with one 3,000 unit dosage daily for at least seven days. Enough Factor was ordered to get us through the weekend and we were to check in again on Monday. If the bleeding continued after that much Factor, everyone agreed that something else must be going on. Fast forward to Monday morning — still bleeding. Granted, the bleeding was slowing, but there was definitely still blood – and anyone who knows what gastric blood smells like knows that it’s a smell not easily forgotten. I called the treatment center and the decision was made that since the bleeding was slowing, we automatically dropped to one dose of Factor a day for four days. … Today is Wednesday … she’s still bleeding …
For those following our journey, please understand that I am not intentionally waiting so long to post. Well, in some respects, I suppose I am. Regardless of our bleeds, everyone else’s life goes on – and that means we can’t stop everything on a dime all the time. Work, family obligations, school obligations, you name it … these things do tend to be a double-edged sword sometimes. Even though my mind is constantly playing out scenarios and mulling possibilities for why this bleeding continues unchecked, sometimes the distraction of just every day living is nice to force my attention elsewhere. At the same time, my frustration level is beyond what I’ve ever experienced before. We’ve been dealing with a slow, but on-going upper GI bleed for almost a year now. I guess if it hasn’t killed her this far …. No, I really do NOT feel that way, but I honestly question whether that’s how it is looked at through other’s eyes at times. It’s because of my heartbreak, frustration, and helplessness over this entire situation that sometimes I just avoid posting anything. I’m sure if you are a member of bleeding disorder community, you can understand this sentiment. I truly do appreciate the well wishes and warm thoughts you’ve been sending – they help more than you might think.
August 31, 2011 § Leave a comment
Things here have been crazy, and I’ve steadily postponed adding to the blog. Seems time has gotten away from me.
R was finally able to be set free from the wheelchair last week. Dr B at the Ortho Clinic at Children’s said she seemed to be progressing very well, and furthermore, he didn’t see the need for any physical therapy. She was elated, as the thought of having to go back to church in a wheelchair was definitely not appealing to her. She is working away on one of her subjects from the American School — psychology. She seems to like it well enough.
D seems to be doing okay at school. He’s had some issues with teachers and administration trying to make some sort of point about him leaving the school to be homeschooled and then returning. I keep trying to bite my tongue and remember that it’s only the first few weeks of school, but even that logic is beginning to grow thin. One instructor did have the gumption to at least admit that he was being tougher on him than other children because he expected more from him. Does that make it right? Not necessarily; but at least he did admit to it, and that went a long way in D’s book.
As for me, I have to admit that I’ve been in a bit of a depression as of late. Nothing in particular has changed, but it just suddenly feels as if the weight of the world is upon my shoulders for whatever reason. Perhaps it’s the stress of the recent accident and all that has entailed. Perhaps it’s the stress of everything that’s happened in the last eight months since we’ve gotten the kids’ von Willebrand diagnosis. Perhaps it’s the stress of still having to constantly fight the legal issues since my dad died three years ago. I don’t know. I just know I’ve withdrawn into myself on most everything. The days are all, “just another day”, and I’ve spent more time in tears in the last week than I have in years. I’m sure things will get better … I’m just not sure how or when.
August 14, 2011 § Leave a comment
Sorry for the failure to update, but the last few weeks have been hectic. Appointments, registering for school, shopping, more appointments, working, etc, etc, etc. Since our last update we have been seen at the orthopedic clinic, and unfortunately, things did not go as well as we’d hoped. It seemed that while the x-rays were promising, something still isn’t quite right.
There was obvious nerve damage upon examination, and they aren’t quite sure if it’s temporary or more permanent. R left the clinic under strict orders to place absolutely zero weight on the left leg for at least three more weeks. So, she’s still wheelchair bound and very, very unhappy about it. (I don’t think it hurts her feelings not to have to help with housework and chores, though!) But, she’s making the best she can of the situation and has taken to her schoolbooks early and has already gotten quite a bit of work done.
D has decided that this year he will make his return to public schools. Though I don’t really think it’s the best thing for him, it’s what he wants and I’m trying to be supportive. School starts tomorrow, and he’s incredibly nervous. In all honesty, I think some of the school staff is a bit nervous about his return, too. To begin with, they’ve never even heard of von Willebrand Disease (vWD), much less know what to do to treat it. On top of that, they know I’m one mom who isn’t afraid or the least bit bothered to come and make a stand against things I don’t agree with or believe in. (It was not a very pretty picture when I pulled my kids out of the local school district!) I’m hopeful that things go well, but I already know I’m going to miss my not-so-little guy being home with me.
I’m also concerned about how his comprehension has been affected after the bleeding episodes. He scored incredibly well on the math portion of his tests (three grades above his level), but he simply could not grasp all the reading material in the short amount of time given and scored two grades below level in reading. The school counselor suggested we get documentation from his physician regarding the potential effects of the bleeding, but that’s impossible. No one I have talked to has experience with bleeds causing problems with comprehension ability. However, I still totally believe there’s a direct correlation because the exact same thing happened with both of my kids after big bleeds. Needless to say, on this issue, I’m really frustrated.
Tomorrow we go back to the Bleeding Disorder Clinic for R’s Stimate challenge test. D was scheduled to go at the same time, but once he made his decision about going back to school, he really didn’t want to miss the first day so his test was rescheduled. Hopefully I can get some sort of information tomorrow that I can take to the school. I know that his previous hematologist was concerned when he realized that D just totally blocks entire days from his memory if he has a bleed, and he went so far as to suggest a potential small bleed in the brain. But, since this guy has now moved across the country and his office no longer treats D, I can’t get anyone there to return a phone call.
Anyway – it’s finally a beautiful, sunny Sunday afternoon here in Arkansas. Three or four days of almost steady rain have cooled us off to more normal-like temperatures, though allergies are back into play for D. Hoping the sinus congestion he’s been experiencing won’t lead to a bleed in the near future. But, that’s a mom worrying over things not yet happened. Let’s take things one day at a time!