We got home from the hospital on Friday evening after a little more than 48 hours at the hospital. We went in Wednesday afternoon because of some vomiting and a rising temperature. They started blood work as soon as we got in to check the regular stuff and for blood cultures to check for infection. Because of all of Aida's craziness, she has to be admitted for the 48 hours it takes for the blood cultures to grow (or whatever they do).
Unfortunately, our room on "the floor" wouldn't be ready when clinic closed a 6, so we were sent to a room in the ER. Having just been in the ER two weeks before, I was not excited about that plan. Sure enough, it was a hassle, and it was about 10pm before we got our real room. Aida had really only eaten once all day, but at 315a, she got back on track. That is the eats-all-the-time track. We've all been saying that when she's off steroids it'll be better, but her dose is lower than ever these days. No one told her appetite. And there is no holding her off...not if you intend to be in the same room. Or even the one over. Anyway, after a rough day Wednesday, she had a really good day Thursday. She was all smiles, and since she was just there for observation and to wait it out, it was a pretty relaxed couple of days by hospital standards. She didn't feel well Friday, but we were going home, so at least I was happy about that. Exhausted fom a night of seemingly endless eating...but happy.
We've learned what to expect in dealing with all the hospital stuff in general, and I am better each time at doing what I need to do (and saying what I need to say) to make our lives as easy as possible. Still, over the course of the two days, Aida managed to have 2 or 3 unnecessary tests. (Health care costs, anyone?) I was at home getting our stuff together during the first test and argued about the second one. The third wasn't worth discussing. There's a lot of picking our battles in this setting for sure. So though it was a pretty calm couple of days, it was also frustrating. We didn't see OUR doctors until we were discharged...when I had them paged. The car was packed, I'd signed th discharge papers, but we waited and waited. There was no explanation as to why our doctors didn't even stop by during our two days. We were all a little annoyed. It turned out that the stupidity in the ER was because the staff there did not read her chart which already had a treatment plan or whatever from her doctor. It was only supposed to be our holding room for a few hours, but she ended up with a stomach ultrasound and a head CT. Seriously. We had a restful day Saturday, but I know you can still hear my frustration. Imagine the post I originally started working on as we waited for our doctors to come on Friday. :) I realized pretty quickly I wouldn't be posting it, but it made me feel better at the time.
The good news is, Aida doesn't have a bacterial infection. She did/does have a virus apparently, which was the official guess from the previous visit as well. The disappointing news is that any time she has a fever, we're in for 2 days at the hospital at a minimum. She can't afford to let a more serious infection go undiagnosed and untreated, so we have to be extra cautious. And there's not much hope for avoiding the viruses it seems. We're doing our best, but the doctors said it'd be almost impossible for her not to get them anyway. I guess we're working to reduce the occurrances. Funny thing - on Tuesday before all this started, one doctor told us that, of course, we needed to be very careful and use common sense; but that for our own sanity, we should still leave the house occasionally. I was pretty excited...now I'm pretty nervous. If you do see me out, I'll be the one with the hand sanitizer, Clorox wipes and blanket draped over her car seat...all of which is terribly unnatural for me.
In other news, Aida has surgery scheduled for July 2 in Cincinnati to have the lesion on the back of her head removed. In addition to that significant event, I'm pretty excited about actually getting a few days with the doctor there. She's like the good parent or grandparent that makes every kid think he/she is her favorite. :) Other than that, I went on a fun Target run to get finally a "go bag" ready like the agents on "Criminal Minds". ;) Really, I was half way there already, but after this week and the likelihood of similar visits in the future, I needed to make it for real - everything for 2 days at the hospital from toothpaste to bottles. It was like the shopping trip before the a big, fun trip when I was a kid - except without the big, fun trip part and it was my money. :) At least it will make those visits a little easier.
Even among the viruses and fevers and whatnot, we're getting more and more smiles and wannabe laughs. She's looking more like Mark when she grins! Please add NO viruses OR infection to the list of big asks when you're praying. :) That would truly be a miracle! Love to all until next time...
Sunday, June 24, 2012
Monday, June 18, 2012
A Happy Father's Day Indeed
It was a really good week last week. Really good. Monday - Friday Aida seemed to feel really well. She's getting very fun (a little more interactive), so we're having a blast making faces, funny noises and jerking her arms and legs around for her. :) Her current favorite is what I call "the cowgirl." Funny mouth noises (courtesy of yours truly) with crazy arm motions like she's shooting pistols. I promise it's way cuter than it sounds. Especially since she grins and (tries to) laugh. Maybe "Sheriff Aida" is a better name. She does seem to be the boss. Anyway, early in the week Mark's parents went to see other family for a couple of days so that my Uncle Doug, Aunt Ramona and cousins Meredith and Luke could hang out/help out or a few days. Aida was terribly entertaining if I do say so myself.
Her numbers at clinic last Tuesday were great. No trace of the crazy week before except that her platelet count was actually a little high! We go back tomorrow for more of the same (lab work and chemo) after dropping the grandparents at the airport. I'm posting tonight before any potential news tomorrow since we'll be on our own again by then without so much time on our hands. Aida's not going to know what to do without MULTIPLE people at her beck and call. :) At any rate, Father's Day was generally uneventful...a pleasant contrast to our Mother's Day at the hospital! In fact, we began to notice that some of the tumors are feeling "different." I can't say for sure they're smaller, but they're definitely different. Our Cincinnati doctor told me last week that the numbers would improve (like they have been) before the tumors would significantly shrink. Looks like we may be on track. One day at a time though...celebrating today and knowing tomorrow could bring all sorts of surprises. On a side note, the Cincy doctor is at an international vascular conference in Europe this week. I bet Aida's the talk of the town. :)
At any rate, we're planning a little trip to Cincy to do a little more digging. First, we're planning (again) to have the tumor on the back of her head removed - this time by the surgeon that worked on her last time. They'll do some fancy shmancy testing to look for more info for an actual diagnosis. (For all you Googlers and medical enthusiasts playing at home, we're talking about exome sequencing.) Second, I believe we may look at the bone lesions as well. I'd rather find things out by looking for them than being surprised by them later. We may not find anything out, but we'll do our best! At the very least, we'll be part of a little research that could help some other little boy or girl later. We can only hope! In the mean time, we're very happy with the improvements all around.
I'm personally struggling a little with suddenly (perhaps temporarily) having what appears to be a happy, healthy (excepting the tumors) little girl that is basically quarantined. It's not so much that I want to get out (though I do) but that she can't go with me (us). That was a lot of parentheticals. Anyway, the doctor here says her immune system is equivalent to that of their transplant patients. I so want to share her with our friends here - our Nashville family...not to mention make runs to Target on a whim! I know. I know. We're definitely better to be safe. When we were at the clinic so much time seemed to move more quickly than one might expect. Now that we're home a bit more the prospect of being here ALL THE TIME is a little disheartening. Freedom feels so close yet so far! I'm still very glad to be home and not at clinic or the hospital. Do you hear me preaching to myself? The steroids are still being slowly reduced, so I'm hoping when she's done with that we'll be given a little room to live!
One final note...I've recently been reading about prayer. I realize that many of you may have been doing a better job than me, so this won't be earth shattering. What I mean is that I haven't been putting it all together very well. I've been asking for big things - healing, for example - but have only been specific about small things. I've decided to pray for the following (among other things, of course):
*I pray that the tumors shrink shockingly quickly...in weeks - not months or years
*I pray that the answer to the prayer above will allow her to quit taking all the crazy meds very soon
*I pray that all evidence of these tumors will disappear COMPLETELY - I guess she can keep a cool scar on her liver if she wants ;)
*I pray that the current (and any future) lack of income will go UNNOTICED while medical bills get paid - loaves and fishes anyone?
Again, there are a lot of other things to pray for, but for today, these are my big four. They're all my now tired brain can handle tonight anyway. Thank you all for continuing to support us in every way. We cannot do it without you!
Her numbers at clinic last Tuesday were great. No trace of the crazy week before except that her platelet count was actually a little high! We go back tomorrow for more of the same (lab work and chemo) after dropping the grandparents at the airport. I'm posting tonight before any potential news tomorrow since we'll be on our own again by then without so much time on our hands. Aida's not going to know what to do without MULTIPLE people at her beck and call. :) At any rate, Father's Day was generally uneventful...a pleasant contrast to our Mother's Day at the hospital! In fact, we began to notice that some of the tumors are feeling "different." I can't say for sure they're smaller, but they're definitely different. Our Cincinnati doctor told me last week that the numbers would improve (like they have been) before the tumors would significantly shrink. Looks like we may be on track. One day at a time though...celebrating today and knowing tomorrow could bring all sorts of surprises. On a side note, the Cincy doctor is at an international vascular conference in Europe this week. I bet Aida's the talk of the town. :)
At any rate, we're planning a little trip to Cincy to do a little more digging. First, we're planning (again) to have the tumor on the back of her head removed - this time by the surgeon that worked on her last time. They'll do some fancy shmancy testing to look for more info for an actual diagnosis. (For all you Googlers and medical enthusiasts playing at home, we're talking about exome sequencing.) Second, I believe we may look at the bone lesions as well. I'd rather find things out by looking for them than being surprised by them later. We may not find anything out, but we'll do our best! At the very least, we'll be part of a little research that could help some other little boy or girl later. We can only hope! In the mean time, we're very happy with the improvements all around.
I'm personally struggling a little with suddenly (perhaps temporarily) having what appears to be a happy, healthy (excepting the tumors) little girl that is basically quarantined. It's not so much that I want to get out (though I do) but that she can't go with me (us). That was a lot of parentheticals. Anyway, the doctor here says her immune system is equivalent to that of their transplant patients. I so want to share her with our friends here - our Nashville family...not to mention make runs to Target on a whim! I know. I know. We're definitely better to be safe. When we were at the clinic so much time seemed to move more quickly than one might expect. Now that we're home a bit more the prospect of being here ALL THE TIME is a little disheartening. Freedom feels so close yet so far! I'm still very glad to be home and not at clinic or the hospital. Do you hear me preaching to myself? The steroids are still being slowly reduced, so I'm hoping when she's done with that we'll be given a little room to live!
One final note...I've recently been reading about prayer. I realize that many of you may have been doing a better job than me, so this won't be earth shattering. What I mean is that I haven't been putting it all together very well. I've been asking for big things - healing, for example - but have only been specific about small things. I've decided to pray for the following (among other things, of course):
*I pray that the tumors shrink shockingly quickly...in weeks - not months or years
*I pray that the answer to the prayer above will allow her to quit taking all the crazy meds very soon
*I pray that all evidence of these tumors will disappear COMPLETELY - I guess she can keep a cool scar on her liver if she wants ;)
*I pray that the current (and any future) lack of income will go UNNOTICED while medical bills get paid - loaves and fishes anyone?
Again, there are a lot of other things to pray for, but for today, these are my big four. They're all my now tired brain can handle tonight anyway. Thank you all for continuing to support us in every way. We cannot do it without you!
Friday, June 8, 2012
You zig, I'll zag
I didn't mention specifically before, but Aida's numbers on Sunday were the highest they've been since I can remember. Odd, since she had so much else going on. Anyway, the numbers had dropped some on Tuesday and Wednesday but were still reasonably good. We were scheduled for surgery on Wednesday at 1030a which meant Aida couldn't eat after 4a. Restricting a BABY on STEROIDS is just not fun...especially since we'd just done it two days before. At any rate, as I was feeding her for the last time at 330a, I began to have second thoughts about surgery altogether. I really wasn't sure about whether I thought something bad was going to happen, or if we were just supposed to cancel "in obedience." I must say, that kind of obedience feels like stupidity. It was one of those rare times that I felt like I was having a conversation with God..meaning, every third thought was, "Am I making this up? I'm making this up. Wait, am I making this up?" I prayed for some sort of confirmation but like a dummy, wasn't specific. ;) I didn't want to "limit" God in that way...but were we limiting God's opportunity to heal her by having surgery? Still, God allows doctors and medicine to be the answer all the time, right?
I'm not one to over-spiritualize things (or sometimes even regular-spiritualize), but this one had me thrown. I should also note that even considering canceling a surgery because a possible conversation with God (or perhaps just exhaustion?) felt ridiculous, even potentially embarrassing. I can't imagine a scenario when I would suggest to anyone else that this would be a good idea. She was to have two large tumors removed, one of which impedes her head movement. Just to be clear, this surgery was not "necessary" in a life/death sort of way, but we definitely want them gone. The last thing we want is to pile on developmental delays. Still, I'd never been "all in" on this surgery for some reason, and now I was just plain not at peace. I wasn't looking forward to talking to Mark about these new questions because unless he'd had a night like me, he'd not be on the same page. That is to say, we were on the same page the day before.
Wednesday morning Aida's platelets - those that had been crazy high three days ago - had inexplicably plummeted. That was pretty discouraging...but perhaps that was the confirmation? If only I'd asked God to have someone sing "Polly Wolly Doodle" upon entering the room so I could be sure. But honestly, I was sure. And scared. I texted Mark to tell him about the platelets and that I was having second thoughts. I was praying he'd have had a dream or something. He had not. After he arrived at the hospital, we decided we would not have the second tumor removed because of the risk of later issues and possible need for reconstructive surgery. Again, neither of these tumors HAD to be removed...at least not right now. I felt a bit better with that decision and had agreed that if the doctors were comfortable with surgery, we'd go through with it. Mark, who still did not share my doubts, was praying that if she wasn't supposed to have surgery that it just wouldn't happen. I was worried about whether God would allow the decision to be made for us. Did I have the faith - and the gumption - to say "no" if the surgeons (and even Mark) said "yes?" Was I even supposed to?
When her fibrinogen level finally came back, we were furthered discouraged. It too had nosedived overnight. The doctors were as stunned as us and had no explanation. The decision was made to give her products and reevaluate. The surgeon was able to wait, so we would too. This meant Aida would go even longer without food....and one of us had to be holding for HOURS. I was exhausted, losing patience and beginning have trouble controlling my frustration. (Sorry, nurses.) I left for a bit, and shortly after I returned the new counts had come in. We'd seen the numbers minutes online before the surgeon came in to tell us. Her platelets were even lower than before they gave her the transfusion. There would be no surgery that day. I was half relieved and half concerned about the returning problem with numbers.
Meanwhile, blood cultures had come back negative, so at least some types of infection had been ruled out. A spinal tap to rule out meningitis for sure is too dangerous on patients with brain tumors, so she is continuing a 14 day round of antibiotics. Yay! More drugs! Of course, it's definitely better to be safe in this area. Nobody seems to have a real explanation for the fever, vomiting and enlarged fontanel that had brought us there in the first place. Her numbers began improving again, and we were discharged on Thursday afternoon (yesterday) just in time for Mark to pick his parents up from the airport. :) We returned to clinic today where again, her numbers were good. Hmmmmm. The doctors are convinced that a strong steroid (a different one) prescribed by the neurosurgeons was to blame for the drop in numbers. It really doesn't matter to me. As much as I want these tumors gone, I believe that TODAY we are exactly where we are supposed to be...as not-so-fun as that place may be. To say the least, this week did not go as we planned, but in my experience, God often moves a little less "as you wish" and a little more "See, I'm still here. I've still got this."
I'm not one to over-spiritualize things (or sometimes even regular-spiritualize), but this one had me thrown. I should also note that even considering canceling a surgery because a possible conversation with God (or perhaps just exhaustion?) felt ridiculous, even potentially embarrassing. I can't imagine a scenario when I would suggest to anyone else that this would be a good idea. She was to have two large tumors removed, one of which impedes her head movement. Just to be clear, this surgery was not "necessary" in a life/death sort of way, but we definitely want them gone. The last thing we want is to pile on developmental delays. Still, I'd never been "all in" on this surgery for some reason, and now I was just plain not at peace. I wasn't looking forward to talking to Mark about these new questions because unless he'd had a night like me, he'd not be on the same page. That is to say, we were on the same page the day before.
Wednesday morning Aida's platelets - those that had been crazy high three days ago - had inexplicably plummeted. That was pretty discouraging...but perhaps that was the confirmation? If only I'd asked God to have someone sing "Polly Wolly Doodle" upon entering the room so I could be sure. But honestly, I was sure. And scared. I texted Mark to tell him about the platelets and that I was having second thoughts. I was praying he'd have had a dream or something. He had not. After he arrived at the hospital, we decided we would not have the second tumor removed because of the risk of later issues and possible need for reconstructive surgery. Again, neither of these tumors HAD to be removed...at least not right now. I felt a bit better with that decision and had agreed that if the doctors were comfortable with surgery, we'd go through with it. Mark, who still did not share my doubts, was praying that if she wasn't supposed to have surgery that it just wouldn't happen. I was worried about whether God would allow the decision to be made for us. Did I have the faith - and the gumption - to say "no" if the surgeons (and even Mark) said "yes?" Was I even supposed to?
When her fibrinogen level finally came back, we were furthered discouraged. It too had nosedived overnight. The doctors were as stunned as us and had no explanation. The decision was made to give her products and reevaluate. The surgeon was able to wait, so we would too. This meant Aida would go even longer without food....and one of us had to be holding for HOURS. I was exhausted, losing patience and beginning have trouble controlling my frustration. (Sorry, nurses.) I left for a bit, and shortly after I returned the new counts had come in. We'd seen the numbers minutes online before the surgeon came in to tell us. Her platelets were even lower than before they gave her the transfusion. There would be no surgery that day. I was half relieved and half concerned about the returning problem with numbers.
Meanwhile, blood cultures had come back negative, so at least some types of infection had been ruled out. A spinal tap to rule out meningitis for sure is too dangerous on patients with brain tumors, so she is continuing a 14 day round of antibiotics. Yay! More drugs! Of course, it's definitely better to be safe in this area. Nobody seems to have a real explanation for the fever, vomiting and enlarged fontanel that had brought us there in the first place. Her numbers began improving again, and we were discharged on Thursday afternoon (yesterday) just in time for Mark to pick his parents up from the airport. :) We returned to clinic today where again, her numbers were good. Hmmmmm. The doctors are convinced that a strong steroid (a different one) prescribed by the neurosurgeons was to blame for the drop in numbers. It really doesn't matter to me. As much as I want these tumors gone, I believe that TODAY we are exactly where we are supposed to be...as not-so-fun as that place may be. To say the least, this week did not go as we planned, but in my experience, God often moves a little less "as you wish" and a little more "See, I'm still here. I've still got this."
Monday, June 4, 2012
Just a Little Weekend Drama
So a quick recap from yesterday...
Mark and I took Aida took to the emergency room mid-morning after some alarming (for a kid with a brain tumor) vomiting. By the time we got there, she had a fever that ultimately lasted through the night. She had been having some other concerning symptoms that made us nervous about swelling in the brain or something of that nature. (Her fontanel [soft spot] had been feeling "full" in recent days and had gotten worse, for example.) After a CT scan, the initial opinion was that her ventricles were enlarged, but it was stable enough to wait until today to address when all the doctors were in. They ran the normal labs which came back really good, but infection was a serious concern. (Remember her immune system is pretty impaired.) They did blood cultures, but they take a couple of days to come back. In the meantime, they started her on 2 antibiotics in the event that she did have an infection, and ultimately we ended up in the PICU for neurological observation overnight. On a side note, the doctors here are great, but the doctor from Cincy is fantastic and incredibly accessible. When I couldn't get in touch with people I wanted to here yesterday, she was available. Then after the long day, she texted late last night for an update...and on and on. She is wonderful. I wish she were here!!!
And now today...
The blood cultures are still not complete, but the general consensus is that whatever caused fever and vomiting was probably viral - separate from any brain stuff which is definitely good. As for the brain, we seem to be okay. The scan from yesterday was compared to previous MRIs, and it was determined that there had not been any significant change. That is to say, there had been some enlargement (which we knew) but nothing new...also good. She wasn't able to eat from 2am until 10am when it was finally decided/confirmed that she wouldn't have any procedures. After that and a rough, feverish night, she ate and collapsed on Mark for a long nap - her favorite way to sleep. :) Her fever had broken middle of the night, so that helped. I got more sleep than I expected, but I still went home for a good nap while Mark hung out here. Since finally getting to eat, she seemed to feel much better...alert and happy while awake and sleeping well in between. The fontanel seems to be returning to normal as well which makes me feel better! Her blood numbers were up even more today too!
Honestly, there's a lot I still don't entirely understand, but for now I'm happy to know that she's good. We can always get more details tomorrow. We are supposed to be moving to "the floor" (hematology/oncology where she normally stays) as soon as a room is available...apparently not tonight. PICU is actually better in most ways except that there's no bathroom in the room. Lame. Anyway, I expect we'd be going home, but she was already scheduled for surgery to remove one or more of the outside tumors on Wednesday. I didn't think they'd still do it, but assuming the cultures confirm she doesn't have crazy infections we're good to go. Crazy. So basically, we're in pretty much the same spot as two days ago except that neurosurgery is now "involved" and we have another good image to track where we are. I'm thrilled about all of that (wish it'd happened sooner and without all the drama), and I have a lot more peace of mind about all the symptoms we've been seeing. Maybe they're from the tumor or maybe they're side effects, but there's a little less worry about imminent danger.
Time to wind down and get some sleep. Thanks for your prayers! We are believing for miracles!
Mark and I took Aida took to the emergency room mid-morning after some alarming (for a kid with a brain tumor) vomiting. By the time we got there, she had a fever that ultimately lasted through the night. She had been having some other concerning symptoms that made us nervous about swelling in the brain or something of that nature. (Her fontanel [soft spot] had been feeling "full" in recent days and had gotten worse, for example.) After a CT scan, the initial opinion was that her ventricles were enlarged, but it was stable enough to wait until today to address when all the doctors were in. They ran the normal labs which came back really good, but infection was a serious concern. (Remember her immune system is pretty impaired.) They did blood cultures, but they take a couple of days to come back. In the meantime, they started her on 2 antibiotics in the event that she did have an infection, and ultimately we ended up in the PICU for neurological observation overnight. On a side note, the doctors here are great, but the doctor from Cincy is fantastic and incredibly accessible. When I couldn't get in touch with people I wanted to here yesterday, she was available. Then after the long day, she texted late last night for an update...and on and on. She is wonderful. I wish she were here!!!
And now today...
The blood cultures are still not complete, but the general consensus is that whatever caused fever and vomiting was probably viral - separate from any brain stuff which is definitely good. As for the brain, we seem to be okay. The scan from yesterday was compared to previous MRIs, and it was determined that there had not been any significant change. That is to say, there had been some enlargement (which we knew) but nothing new...also good. She wasn't able to eat from 2am until 10am when it was finally decided/confirmed that she wouldn't have any procedures. After that and a rough, feverish night, she ate and collapsed on Mark for a long nap - her favorite way to sleep. :) Her fever had broken middle of the night, so that helped. I got more sleep than I expected, but I still went home for a good nap while Mark hung out here. Since finally getting to eat, she seemed to feel much better...alert and happy while awake and sleeping well in between. The fontanel seems to be returning to normal as well which makes me feel better! Her blood numbers were up even more today too!
Honestly, there's a lot I still don't entirely understand, but for now I'm happy to know that she's good. We can always get more details tomorrow. We are supposed to be moving to "the floor" (hematology/oncology where she normally stays) as soon as a room is available...apparently not tonight. PICU is actually better in most ways except that there's no bathroom in the room. Lame. Anyway, I expect we'd be going home, but she was already scheduled for surgery to remove one or more of the outside tumors on Wednesday. I didn't think they'd still do it, but assuming the cultures confirm she doesn't have crazy infections we're good to go. Crazy. So basically, we're in pretty much the same spot as two days ago except that neurosurgery is now "involved" and we have another good image to track where we are. I'm thrilled about all of that (wish it'd happened sooner and without all the drama), and I have a lot more peace of mind about all the symptoms we've been seeing. Maybe they're from the tumor or maybe they're side effects, but there's a little less worry about imminent danger.
Time to wind down and get some sleep. Thanks for your prayers! We are believing for miracles!
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