If you've read this blog at all then you know that the universe is conspiring against me. For real. And that the manufacturer of my body used faulty parts. I mean, how else do I end up with knees that look like they belong to an 80 year old? And now, I apparently have spontaneously rupturing muscles. At least with the torn meniscus I had a great story and could call it a "sports injury". This latest thing? Yeah, I got nothing with a capital "N".
It started Wednesday. I drug Mike to town (yeah, seriously drug him. It's boy scout camp time and he's busier than a cranberry farmer at bogging time. And the way it works is once he steps foot off camp property at least one thing breaks.) But we had an appointment we had to keep, we'd already rescheduled three times. And I had to go have some ridiculous ABI test done for my doctor. It was like musical blood pressure cuffs. Arms, legs, all at once, one at a time. Not too bad except I'm not sure why they feel the need to blow those cuffs up all the way when I have relatively low blood pressure. Anywho, we got all that done and we even snuck in lunch beforehand. But of course, on the way home, he gets calls and texts and apparently all hell broke loose at camp while he was gone.
So we get home and he rushes back down into camp. No one else is home so I go to the computer and start working. As I'm working, I notice that its beginning to hurt when I move my right arm a certain way. I really didn't think much about it til I got up at 7 to see about something to eat. Then I noticed that it really hurt to move my arm. It got increasingly worse and when Lu got home from work, I showed her how it hurt to move it certain ways. Her expert advice? "So don't move it like that". Seriously, that girl could be a doctor.
So Mike asks if I want to go to the ER. Who wants to go to the ER at ten o'clock at night? So I say "no". And he goes to his workshop to work on some stuff. But by 11? I can't move my arm without bringing tears to my eyes. And let me just remind you that I am not a wuss when it comes to pain. Walk around on a torn meniscus for 6 months? No prob. Birth a 10lb breech baby with no drugs? Been there, done that. So if I'm in tears, it's serious. So Mike and I proceed to the ER at 11pm.
Cue Twilight Zone music because really? Those people who are at the ER at that time of night? Born in a Walmart if you ask me. There was the pregnant meth head (no lie) who was both scary and pathetic. There was the old lady that they took back immediately even though she appeared in no distress. There was the guy I thought was going to pass out on the floor in front of me. And the whiny chick (who again did not look sick). And the triage nurse from hell. Mike suggested that we bring food some night and just hang out there and people watch. He said it might be fun if I wasn't in so much pain.
But I was in pain. And after sitting in the waiting room for an hour I was highly tempted to take the security guard's firearm and blaze a trail back to a treatment room. And when I heard the meth head say that she should be next, I believe the words that came out of my mouth (quietly so only Mike heard me) were "she better back that crap up because I will cut a b**ch!" Have I explained that extreme pain makes me cranky??
Then the guy comes and gets me for an xray of my shoulder. He informs me I have to remove my shirt and bra and put on a gown. Well, I managed painfully to remove my things and get the gown on but I had to have him tie it. He does the xrays, also painful and then tells me I can get dressed.
Me: Dude, that is so not happening. There's no way I can get that stuff back on by myself.
Him: *mouth open. crickets chirping*
Me: Can I borrow this gown? I'll go out and get my husband to come with me to the restroom and help."
Him: oh yeah, that's fine. (Seriously? Did he really think I was going to ask him to help??)
So I grab my clothes and go get Mike. We go to the ladies restroom and I go in to be sure it's empty. He comes to the handicapped stall with me and I shut the door.
Mike: I'm so going to get arrested. And then I'll be branded a sex offender and lose my job and have to register on a list and...
Me: Um. It's pretty obvious I can't use my arm. I think the security guard will understand.
Finally we see a doctor. And for the third time that night I get the "What did you do to it?" NOTHING! I wasn't skydiving, playing tennis, doing chin-ups or falling down stairs. I was typing when it started. Every time I say this, I am greeted with dubious looks. I'm halfway tempted to tell everyone Sean beats me. I mean, he tells people I beat him so it's only fair, right? The xrays look fine. The doctor has no idea what's wrong. So they give me a shot of dilaudid and a Valium and send me home with a vial of narcotics and instructions to see my doctor the next day. So I'm higher than a kite, but it hasn't even touched the pain. And I have to stay awake on the drive home so I can keep poking Mike, who's falling asleep at the wheel. Because it's now 2 am.
Nothing helped the pain so I went and saw the doctor who was covering for my doctor on Thursday. After moving my arm and watching me tear up he determined that it was my bicep and it's likely ruptured. He gave me a shot of Toradol, which is an anti-inflammatory and a regimen of high dose Motrin round the clock. He also put me in a sling. If it's better by next week, then it's only strained. If it's not, it's likely I separated the tendon from the muscle and will need surgery. You all know how much I love surgery. Like a fat guy loves diet food. So far, it's helped. Whether it's the immobilization or the Motrin, I don't know. I hate the sling with a passion, but if I don't wear it, I forget and use my arm and then it hurts again. Fingers crossed for the strain. I don't have time for anything else.
And this whole episode is the exact reason why I love Mystery Diagnosis so much. It makes me and my medical issues seem normal in comparison!
Have a great forth y'all!
♥Spot
Showing posts with label how the universe is constantly trying to get me. Show all posts
Showing posts with label how the universe is constantly trying to get me. Show all posts
Saturday, July 2, 2011
Saturday, August 28, 2010
The one where you try to remember who I am...
It feels like years since I last blogged even though it's only been two weeks. I did get a chance to read some of your blogs but not to comment. It still feels like I'm lost in blogland though. I feel like I'm constantly apologizing for not writing and some of my Kindle subscribers have probably dropped me, but honestly I'm afraid to check to see if they have! If you're friends with me on Facebook then you have some general idea of what's been going on. If you aren't you've probably been going "WTF?!". Don't feel bad, I've done alot of thinking that lately too.
So on the 17th of August we headed to the hospital with Lu for her splenectomy. The surgery went well. The doctor came out and talked to us afterward and said it took longer than planned because he tried to keep the incision small for her. (and yet it still ended up being 6 inches long!) He said she only lost a quarter unit of blood. Things seemed promising. They put her in the ICU for the night just to monitor her. They'd put in an epidural for pain relief and it was working so well that she wasn't in any pain at all. The night was good even though we got very little sleep. ICU is a noisy place and they check on you frequently. Plus Lu is a beautiful young girl and the nurse was a hott young very talkative guy.
Wednesday they moved her to the pediatric floor. The surgery floor was full and she was close enough in age to be able to stay there. That was a great choice. The nurses on that floor were wonderful. Wednesday was another good, pain free day for her. The only complaint she had was the bladder catheter they have to leave in while you have an epidural. It grossed her out.
Thursday the surgeon said they could take out the catheter and the epidural and she could get out of bed. Unfortunately, when the epidural meds wore off, there wasn't enough other pain meds in her system. I watched my baby writhe in pain for 3 hours while they tried to get it under control. Three shots of Toradol, two shots of Morphine and countless Loritab later she was finally comfortable again. Watching your baby in that much pain is something no mother should have to do. I've never felt so helpless. And in case anyone is wondering, Lu has a really high pain tolerance so this had to be agony for her to complain.
Friday, the pain was under control, but since she hadn't been able to use the bathroom, despite countless tries, they had to re-catheterize, she'd also spiked a temp so they added an IV antibiotic and did a urine specimen. It came back positive. So they added another antibiotic. Unfortunately, that same day she began vomiting and couldn't keep anything down. They gave her anti-nausea meds every four hours and they would knock her out for 3 and then she'd be awake and nauseous for the hour in between. It was a rough day.
Saturday she was still nauseous and feverish and the surgeon decided to do a CT scan to check things out. The CT scan revealed pneumonia in her left lung and a pocket of fluid in her pleural space. The surgeon called in a pulmonologist (lung specialist). The lung doctor wanted to watch her and wait, if things got better, no problem. If things got worse then he would have to draw some fluid off her lung. That night she ran a 101.8 fever.
Sunday I started wondering why the doctors couldn't seem to get this figured out. I mean the surgeon was off the hook- he had done his job and whatever was wrong now was beyond his speciality. He continued to see us and coordinate with the other doctors but he readily admitted he was baffled. She did get that catheter out again and seemed to have no trouble in that respect. And I do admit she wasn't giving the doctors much to go on. She had no cough, no pain, no shortness of breath, no real symptoms save fever. Sunday night she spiked a 103.5 fever. As the on call hematologist said "we could pop popcorn on you girl!". The nurse said "I'm going to call the doctor as soon as I can figure out which one to call!" A doctor was called, tylenol was ordered and the fever broke. And Lu ate pizza.
Monday I was frustrated. They did the Thoracentisis, which means they gave her a numbing shot in the back, then inserted a huge needle and drew off a sample of the pleural fluid. Lu took it like a champ. She is the strongest bravest girl I know. And I managed to comfort her and not pass out when I saw the sight of that needle. I did move so I wouldn't actually see it enter her back though. They sent off the sample. When her regular hematologist, who'd been off all weekend, showed up he was angry that they still didn't know what was going on and had called in an infectious disease specialist. Finally, someone agrees with me that this is crap and they should be able to figure it out. I was seriously considering demanding they send her to a bigger hospital but figured I'd see what the new guy had to say. I'm glad I waited. Dr. Saeed is amazing. He studied her chart before he came in, then he pulled up a chair and said "tell me about the last time she was healthy". I explained that Lu had always been kind of sickly, that she'd had whooping cough her freshman year, and that when the ITP was under control was when she'd been her healthiest. He asked about me and I said, that yeah I'm also puny and get sick easy. I told him I'd seen an immunologist once but no one ever followed up because my doctor moved. He told us we were very interesting. Then he examined her and told us that he was very sure Lu had a immune deficiency to begin with and when they removed her spleen (the captain of the immune system) it seriously depleted her immunities. He said the catheter introduced bacteria into the urinary tract causing that infection. The ventilator probably allowed some perfectly normal mouth germs to infiltrate her lung causing an anaerobic infection in the fluid in her chest. And that she also picked up pneumonia. He changed antibiotics around and added a special one for the anaerobic infection. He said she should be better in a few days and able to go home.
Tuesday her fever never did go above 100.8 degrees. Unfortunately that's still considered a fever and you can't be released from the hospital until your afebrile for 24 hours. She still had nausea and wouldn't eat much and she did throw up the antibiotic he ordered. So she was started on anti nausea meds again. I got my records from the immunologist faxed to the hospital so he could see them. He declared them interesting and said that I should have the follow up testing and that he was sending Lu to an immunologist here in town, but if he didn't seem to be going to do the testing she needed he would find us one in a larger city. He believes that Lu has basically no immune system currently.
Wednesday she was doing better. And her fever never went about 100 degrees. We'd started doing laps in the hallways to help get the fluid from her lungs. She had to wear a mask when she left her room but finally we were free of catheters and IV poles. That makes the going a little faster. People looked at us funny of course. Some pitying, thinking she had cancer. Some scared, thinking she was contagious. We'd gotten to know all the nurses so well and even the secretaries and housekeepers. There was always someone to chat with. But we were ready to go home.
Thursday she was discharged. We left with two antibiotics and anti nausea meds. And Dr. Saeed gave implicit instructions: Lu is not allowed in public except for doctor appointments and she has to wear a mask.If she should run any fever at all, call him. If she runs a fever over 100 or has a cough or chills we are to go immediately to the Emergency Room and tell them he sent us, he will come and admit her. I'm praying that doesn't happen.
It's good to be home. We both were happy to sleep in our own beds and take a shower in a room without bumping into anything. Those hospital bathrooms are killer. I do have to set my alarm and wake her up to take meds so that they are spaced evenly apart. And I do take her temperature alot but so far so good. And she's still not eating normally. Smoothies, noodle cups and such at least give her some nutrition. She lost 9 pounds in the hospital. By the end, dietary was sending up protein shakes. Because when you weigh just barely enough to begin with, 9 pounds is alot.
Someone asked me if we knew this was a possibility before we did the splenectomy. The answer is no. No doctor had ever really questioned her immune system. We had no idea she might be immune deficient to begin with and that taking out her spleen would cause serious and life threatening complications. And yet, the spleen had to come out. All treatments for ITP are immune suppressing. But the future is uncertain. We're facing alot of testing in upcoming months while they try to figure out which immune deficiency she has and how to treat it. We don't know when she will be allowed to leave the house. Once again, her life is on hold. I'm not sure she realizes the seriousness of it quite yet, but so far she is handling things with remarkable calm.
Thank you to all the staff and doctors who worked with her during our hospital stay. Everyone was respectful,kind and caring. And thank you to Dr. Saeed for getting us home at least. I have the utmost confidence in his ability to see this through to a solution.
And thank you to everyone who sent prayers, well wishes, good thoughts and offered real and moral support. I don't know how I'd get through this without you all.
♥Spot
So on the 17th of August we headed to the hospital with Lu for her splenectomy. The surgery went well. The doctor came out and talked to us afterward and said it took longer than planned because he tried to keep the incision small for her. (and yet it still ended up being 6 inches long!) He said she only lost a quarter unit of blood. Things seemed promising. They put her in the ICU for the night just to monitor her. They'd put in an epidural for pain relief and it was working so well that she wasn't in any pain at all. The night was good even though we got very little sleep. ICU is a noisy place and they check on you frequently. Plus Lu is a beautiful young girl and the nurse was a hott young very talkative guy.
Wednesday they moved her to the pediatric floor. The surgery floor was full and she was close enough in age to be able to stay there. That was a great choice. The nurses on that floor were wonderful. Wednesday was another good, pain free day for her. The only complaint she had was the bladder catheter they have to leave in while you have an epidural. It grossed her out.
Thursday the surgeon said they could take out the catheter and the epidural and she could get out of bed. Unfortunately, when the epidural meds wore off, there wasn't enough other pain meds in her system. I watched my baby writhe in pain for 3 hours while they tried to get it under control. Three shots of Toradol, two shots of Morphine and countless Loritab later she was finally comfortable again. Watching your baby in that much pain is something no mother should have to do. I've never felt so helpless. And in case anyone is wondering, Lu has a really high pain tolerance so this had to be agony for her to complain.
Friday, the pain was under control, but since she hadn't been able to use the bathroom, despite countless tries, they had to re-catheterize, she'd also spiked a temp so they added an IV antibiotic and did a urine specimen. It came back positive. So they added another antibiotic. Unfortunately, that same day she began vomiting and couldn't keep anything down. They gave her anti-nausea meds every four hours and they would knock her out for 3 and then she'd be awake and nauseous for the hour in between. It was a rough day.
Saturday she was still nauseous and feverish and the surgeon decided to do a CT scan to check things out. The CT scan revealed pneumonia in her left lung and a pocket of fluid in her pleural space. The surgeon called in a pulmonologist (lung specialist). The lung doctor wanted to watch her and wait, if things got better, no problem. If things got worse then he would have to draw some fluid off her lung. That night she ran a 101.8 fever.
Sunday I started wondering why the doctors couldn't seem to get this figured out. I mean the surgeon was off the hook- he had done his job and whatever was wrong now was beyond his speciality. He continued to see us and coordinate with the other doctors but he readily admitted he was baffled. She did get that catheter out again and seemed to have no trouble in that respect. And I do admit she wasn't giving the doctors much to go on. She had no cough, no pain, no shortness of breath, no real symptoms save fever. Sunday night she spiked a 103.5 fever. As the on call hematologist said "we could pop popcorn on you girl!". The nurse said "I'm going to call the doctor as soon as I can figure out which one to call!" A doctor was called, tylenol was ordered and the fever broke. And Lu ate pizza.
Monday I was frustrated. They did the Thoracentisis, which means they gave her a numbing shot in the back, then inserted a huge needle and drew off a sample of the pleural fluid. Lu took it like a champ. She is the strongest bravest girl I know. And I managed to comfort her and not pass out when I saw the sight of that needle. I did move so I wouldn't actually see it enter her back though. They sent off the sample. When her regular hematologist, who'd been off all weekend, showed up he was angry that they still didn't know what was going on and had called in an infectious disease specialist. Finally, someone agrees with me that this is crap and they should be able to figure it out. I was seriously considering demanding they send her to a bigger hospital but figured I'd see what the new guy had to say. I'm glad I waited. Dr. Saeed is amazing. He studied her chart before he came in, then he pulled up a chair and said "tell me about the last time she was healthy". I explained that Lu had always been kind of sickly, that she'd had whooping cough her freshman year, and that when the ITP was under control was when she'd been her healthiest. He asked about me and I said, that yeah I'm also puny and get sick easy. I told him I'd seen an immunologist once but no one ever followed up because my doctor moved. He told us we were very interesting. Then he examined her and told us that he was very sure Lu had a immune deficiency to begin with and when they removed her spleen (the captain of the immune system) it seriously depleted her immunities. He said the catheter introduced bacteria into the urinary tract causing that infection. The ventilator probably allowed some perfectly normal mouth germs to infiltrate her lung causing an anaerobic infection in the fluid in her chest. And that she also picked up pneumonia. He changed antibiotics around and added a special one for the anaerobic infection. He said she should be better in a few days and able to go home.
Tuesday her fever never did go above 100.8 degrees. Unfortunately that's still considered a fever and you can't be released from the hospital until your afebrile for 24 hours. She still had nausea and wouldn't eat much and she did throw up the antibiotic he ordered. So she was started on anti nausea meds again. I got my records from the immunologist faxed to the hospital so he could see them. He declared them interesting and said that I should have the follow up testing and that he was sending Lu to an immunologist here in town, but if he didn't seem to be going to do the testing she needed he would find us one in a larger city. He believes that Lu has basically no immune system currently.
Wednesday she was doing better. And her fever never went about 100 degrees. We'd started doing laps in the hallways to help get the fluid from her lungs. She had to wear a mask when she left her room but finally we were free of catheters and IV poles. That makes the going a little faster. People looked at us funny of course. Some pitying, thinking she had cancer. Some scared, thinking she was contagious. We'd gotten to know all the nurses so well and even the secretaries and housekeepers. There was always someone to chat with. But we were ready to go home.
Thursday she was discharged. We left with two antibiotics and anti nausea meds. And Dr. Saeed gave implicit instructions: Lu is not allowed in public except for doctor appointments and she has to wear a mask.If she should run any fever at all, call him. If she runs a fever over 100 or has a cough or chills we are to go immediately to the Emergency Room and tell them he sent us, he will come and admit her. I'm praying that doesn't happen.
It's good to be home. We both were happy to sleep in our own beds and take a shower in a room without bumping into anything. Those hospital bathrooms are killer. I do have to set my alarm and wake her up to take meds so that they are spaced evenly apart. And I do take her temperature alot but so far so good. And she's still not eating normally. Smoothies, noodle cups and such at least give her some nutrition. She lost 9 pounds in the hospital. By the end, dietary was sending up protein shakes. Because when you weigh just barely enough to begin with, 9 pounds is alot.
Someone asked me if we knew this was a possibility before we did the splenectomy. The answer is no. No doctor had ever really questioned her immune system. We had no idea she might be immune deficient to begin with and that taking out her spleen would cause serious and life threatening complications. And yet, the spleen had to come out. All treatments for ITP are immune suppressing. But the future is uncertain. We're facing alot of testing in upcoming months while they try to figure out which immune deficiency she has and how to treat it. We don't know when she will be allowed to leave the house. Once again, her life is on hold. I'm not sure she realizes the seriousness of it quite yet, but so far she is handling things with remarkable calm.
Thank you to all the staff and doctors who worked with her during our hospital stay. Everyone was respectful,kind and caring. And thank you to Dr. Saeed for getting us home at least. I have the utmost confidence in his ability to see this through to a solution.
And thank you to everyone who sent prayers, well wishes, good thoughts and offered real and moral support. I don't know how I'd get through this without you all.
♥Spot
Saturday, July 10, 2010
The one where I want to throw in the towel...
Alright Universe, you win, I give, now quit the crap! First, let me apologize to my faithful readers for leaving you hanging and for not getting to comment on anyone else's blog. I've lost two Kindle subscribers (go on, desert me while I'm down, rude!) but gained two followers. Weird, huh? Anyway, hello new followers! I'm normally funny and consistent, I promise.
So, here we are roughly five weeks after Mike's accident. He's doing well. Very well for someone who almost died. And let's not mince words, he did almost die. And sometimes I still have flashbacks to that trauma room in the ER and I shudder. Luckily for him, he doesn't remember that part. But he does remember coming to after the accident and being stuck in the truck and unable to breathe. But it's not so bad. Because those are the memories that make us realize he almost wasn't here any longer. Those are the memories that remind us to be thankful. The memories that remind us to be grateful for one another.
The surgeon says he's healing great and he doesn't need to see him anymore. The GI doctor cleared him. The kidney specialist doesn't need to see him for three months. Ah, but the medical doctor. He's the one who won't let him go back to work just yet. (Thank you Dr. Andrews!) Mike's doing well except for a funny little drop in blood pressure. Forty points to be exact. His BP drops forty points when he stands up and his heart rate increases the same, making him a prime candidate for another fainting episode. Remember the last one? Yeah, me too. Let's not do that again! So he took back his driving privileges and said he had to have supervision at all times. He's not a happy camper. In fact, he argued with the doctor, who then told him he was acting like one of his kids. (This does explain where Molly gets it from). In the end, the doctor won, of course. But I got to listen to Mike complain and bluster about it. It was then that I realized thinking I'd never get annoyed with my husband again, may have been a tad unrealistic. And then we had this conversation~
Me: So this is what I'm getting from all this...you are so bored spending time with me and can't wait to get back to work and away from me. That all that time I spent helping to keep you alive and healing was for nothing because you don't care if you go back to work too soon and have an accident. Nothing matters except what you want and that since you didn't get you're way, you're going to behave like a 5 yr old.
Mike: I really don't understand how you can twist things like that. What kind of mind do you have? I don't mean any of that! Except maybe the not getting my way part.
Me: Whatever. I see how it is. You can just start taking care of yourself again buster.
Mike: I'm sorry sweetie honey punkin-poo (um. okay, so did anyone just throw up in their mouths a little? He only uses this name when he knows he's in deep sh*t) I'm just so bored and ready to get back to work.
Me: Mentally yes. Wait for the physical to catch up please. Two weeks and you see him again.
Then there's Lu. Poor Lu. I waver between deep sympathy for her and extreme frustration. She wants to schedule her disease around her life and it doesn't work that way. Sometimes you have to schedule your life around your disease. She went in for her first IVIG infusion Tuesday. Her platelets had dropped further to 78,000. We had been told that the infusion would take about four hours. Well, it took six. But they give her tylenol and benadryl before hand so she slept for the first 3 hours. But then she was angry that it took so long, when she wanted to get back to camp. It's staff week at the camp she works at and she hated taking time off. The next day she had a severe headache and nausea. They gave her meds for it when we went in for the infusion and since she'd done well the day before, they got to go a little faster and it only took four hours. But that night she started running a 101 degree fever, severe headache, nausea, stiff neck, kidney pain, aching legs and rash. I called the doctor first thing in the morning.
Here's where it gets stupid...the doctor's office made me bring her in to their office. She had blood taken first and then luckily they took pity on her and got her back to a room with a bed so she could lay down. The doctor came in finally and examined her and then said it was all side effects from the IVIG. No Sh*t Sherlock!! I told you guys that on the phone. You made me drag her in here for that revelation?! Then he says to take her home and give her tylenol. For real genius?! Tylenol? Yeah, so I've already done that because it's not my first day wearing the Mom hat. It did nothing for her. So after much discussion, he ordered painkillers and nausea meds. Hello waste of time. Couldn't that have been accomplished over the phone?? You know, while my child was sleeping in her own bed?
The good news was that her platelets were up to 145,000 so the IVIG is working. Hopefully it will buy her four weeks of higher counts. Next blood test on Thursday. When they do the IVIG next month they said they would stretch it out over 5 days in hopes of reducing some of the reaction. Hopefully that works. Luckily, she's better, only a much less intense headache has hung on. She did see the surgeon and set up a date for the splenechtomy. August 17th. Unfortunately, it will be a full surgery, not laparoscopy. So there will be a smallish scar under her left ribs. The surgeon has promised to make it as pretty as possible, no railroad Frankenstein thing like her Dads. Lol. But she will be in the hospital for 5-6 days and have a 4 week recovery.
And then, there are the results of my MRI. Guess who gets to schedule her surgery sometime when everyone else is doing well? Yep, me. Turns out my meniscus is torn. And the chrondomalacia is severe. The doctor asked how I was walking around on my knee without chewing on painkillers all the time. I told her no one sent me the memo where I had a choice?! Anyway, hopefully it will get taken care of in September. Seems like a relatively easy surgery compared to the others. Two small incisions on either side of my knee to remove torn part of the meniscus and shave away some of that roughened cartilage on the back of my kneecap. Maybe that knee won't make that grinding noise anymore! And then a week on crutches and I'm good to go.
Well, I wouldn't want to leave you thinking we've had only bad news this week. So in the good news category: We had an awesome 4th of July with my sister and her family. Great food, swimming, and some small fireworks for the girls. Kids and sparklers are so much fun! Sean got his class schedule set and is officially a college freshman! And I got a new (used) SUV that I love. And I didn't get any rejection notices this week on the stuff I have out on submission. So there is positive. Always. And there has been funny. I promise funny next time.
Hope everyone in blogland and facebook world are doing well. Your emails, comments and well wishes are always appreciated. Even if I don't have the time (or energy) to respond, know that they make me smile.
Happy Saturday,
♥Spot
So, here we are roughly five weeks after Mike's accident. He's doing well. Very well for someone who almost died. And let's not mince words, he did almost die. And sometimes I still have flashbacks to that trauma room in the ER and I shudder. Luckily for him, he doesn't remember that part. But he does remember coming to after the accident and being stuck in the truck and unable to breathe. But it's not so bad. Because those are the memories that make us realize he almost wasn't here any longer. Those are the memories that remind us to be thankful. The memories that remind us to be grateful for one another.
The surgeon says he's healing great and he doesn't need to see him anymore. The GI doctor cleared him. The kidney specialist doesn't need to see him for three months. Ah, but the medical doctor. He's the one who won't let him go back to work just yet. (Thank you Dr. Andrews!) Mike's doing well except for a funny little drop in blood pressure. Forty points to be exact. His BP drops forty points when he stands up and his heart rate increases the same, making him a prime candidate for another fainting episode. Remember the last one? Yeah, me too. Let's not do that again! So he took back his driving privileges and said he had to have supervision at all times. He's not a happy camper. In fact, he argued with the doctor, who then told him he was acting like one of his kids. (This does explain where Molly gets it from). In the end, the doctor won, of course. But I got to listen to Mike complain and bluster about it. It was then that I realized thinking I'd never get annoyed with my husband again, may have been a tad unrealistic. And then we had this conversation~
Me: So this is what I'm getting from all this...you are so bored spending time with me and can't wait to get back to work and away from me. That all that time I spent helping to keep you alive and healing was for nothing because you don't care if you go back to work too soon and have an accident. Nothing matters except what you want and that since you didn't get you're way, you're going to behave like a 5 yr old.
Mike: I really don't understand how you can twist things like that. What kind of mind do you have? I don't mean any of that! Except maybe the not getting my way part.
Me: Whatever. I see how it is. You can just start taking care of yourself again buster.
Mike: I'm sorry sweetie honey punkin-poo (um. okay, so did anyone just throw up in their mouths a little? He only uses this name when he knows he's in deep sh*t) I'm just so bored and ready to get back to work.
Me: Mentally yes. Wait for the physical to catch up please. Two weeks and you see him again.
Then there's Lu. Poor Lu. I waver between deep sympathy for her and extreme frustration. She wants to schedule her disease around her life and it doesn't work that way. Sometimes you have to schedule your life around your disease. She went in for her first IVIG infusion Tuesday. Her platelets had dropped further to 78,000. We had been told that the infusion would take about four hours. Well, it took six. But they give her tylenol and benadryl before hand so she slept for the first 3 hours. But then she was angry that it took so long, when she wanted to get back to camp. It's staff week at the camp she works at and she hated taking time off. The next day she had a severe headache and nausea. They gave her meds for it when we went in for the infusion and since she'd done well the day before, they got to go a little faster and it only took four hours. But that night she started running a 101 degree fever, severe headache, nausea, stiff neck, kidney pain, aching legs and rash. I called the doctor first thing in the morning.
Here's where it gets stupid...the doctor's office made me bring her in to their office. She had blood taken first and then luckily they took pity on her and got her back to a room with a bed so she could lay down. The doctor came in finally and examined her and then said it was all side effects from the IVIG. No Sh*t Sherlock!! I told you guys that on the phone. You made me drag her in here for that revelation?! Then he says to take her home and give her tylenol. For real genius?! Tylenol? Yeah, so I've already done that because it's not my first day wearing the Mom hat. It did nothing for her. So after much discussion, he ordered painkillers and nausea meds. Hello waste of time. Couldn't that have been accomplished over the phone?? You know, while my child was sleeping in her own bed?
The good news was that her platelets were up to 145,000 so the IVIG is working. Hopefully it will buy her four weeks of higher counts. Next blood test on Thursday. When they do the IVIG next month they said they would stretch it out over 5 days in hopes of reducing some of the reaction. Hopefully that works. Luckily, she's better, only a much less intense headache has hung on. She did see the surgeon and set up a date for the splenechtomy. August 17th. Unfortunately, it will be a full surgery, not laparoscopy. So there will be a smallish scar under her left ribs. The surgeon has promised to make it as pretty as possible, no railroad Frankenstein thing like her Dads. Lol. But she will be in the hospital for 5-6 days and have a 4 week recovery.
And then, there are the results of my MRI. Guess who gets to schedule her surgery sometime when everyone else is doing well? Yep, me. Turns out my meniscus is torn. And the chrondomalacia is severe. The doctor asked how I was walking around on my knee without chewing on painkillers all the time. I told her no one sent me the memo where I had a choice?! Anyway, hopefully it will get taken care of in September. Seems like a relatively easy surgery compared to the others. Two small incisions on either side of my knee to remove torn part of the meniscus and shave away some of that roughened cartilage on the back of my kneecap. Maybe that knee won't make that grinding noise anymore! And then a week on crutches and I'm good to go.
Well, I wouldn't want to leave you thinking we've had only bad news this week. So in the good news category: We had an awesome 4th of July with my sister and her family. Great food, swimming, and some small fireworks for the girls. Kids and sparklers are so much fun! Sean got his class schedule set and is officially a college freshman! And I got a new (used) SUV that I love. And I didn't get any rejection notices this week on the stuff I have out on submission. So there is positive. Always. And there has been funny. I promise funny next time.
Hope everyone in blogland and facebook world are doing well. Your emails, comments and well wishes are always appreciated. Even if I don't have the time (or energy) to respond, know that they make me smile.
Happy Saturday,
♥Spot
Tuesday, June 22, 2010
The one where the Universe decides to see how much I can take...
So we have two Doctor's appointments down this week for Mike and both went well. The Surgeon is pleased with his progress, but told him to take it easier and not be in such a rush to get back to work. I resisted doing the "told ya so" dance. He made another appointment for two weeks and said absolutely no work. He had also done a chest x-ray, which is looking good. Today we saw the kidney specialist, who also said Mike was doing well. He did repeat blood work and Mike's hemoglobin has climbed back to 12 (almost normal!) on it's own. This is an awesome sign that there's no further internal bleeding. He also concurred with the two more weeks of no activity. Of course, Mike is chafing at the bit. Fortunately, these short jaunts to town make him realize just how weak he still is.
As if we didn't have enough to deal with...bring in the workman's comp case nurses. For real ladies? First they wanted to come into the Dr appts with us. Invasion of privacy much?? I put my foot down there. But they do come in and talk with the doctor (with us present) at the end of the appointments. And ladies...you can stop telling me how you don't really work for the insurance company and you are there on our behalf since every question you ask is geared towards how soon my husband can get back to work. Trust me, no one wants that more than him. But no one is more determined to see that it doesn't happen until he's recovered than me. And I thought you were nurses?? Seriously, even I knew that the recovery period for major surgery is 6 weeks and that's not counting the trauma and broken ribs. You better tread lightly.
And then there's poor Lu. Who was it that said "If you want to make God laugh, tell him your plan"? I guess that applies to the Universe too. Because the Universe sure screwed up my summer plans. And now it's decided to play hell with Lu's school plans. While her Dad was still in the hospital I noticed that she had several awful bruises and was looking pale and tired. Well, of course we were all stressed and not getting much sleep, but my "spidey senses" kicked in. I told her to get a blood test since she hadn't had one in 6 weeks. (Since her platelets had been holding their own at a safe level, the doctor was letting her go two months between appointments.) She argued that she didn't need one, didn't want one. We bickered and finally her Dad threw his weight on my side. The Monday he got out of the hospital, Lu had a blood test and received a frantic call from her hematologist's office. Her platelets had nose-dived to 21,000. We saw him the next day and he explained that since her ITP was recurring it was now classified as chronic and we'd have to look at treatment options. Lu cried. She told him that she didn't want to be on steroids for a year again (the side effects are nasty). He gave us a few options, though he recommended removing her spleen and prescribed some high dose steroids that she'd take four days a month.
The high dose steroids worked and this week her platelets had jumped to 245,000 which is firmly in normal range. But the steroids caused insomnia and muscle pain. We did our research and sadly there are no good options. There's the steroids, but they have harsh side effects with long term use and only buy her a couple of months at a time. She's not a candidate for another treatment because she has RH negative blood. The platelet growth stimulator's only buy a small bump in platelets and can mess with your bone marrow chemistry causing other problems. Also, they are so new that no one knows the long term effects. The Rituximab might buy her a few years of normal platelets but again has harsh side effects and is the doctor's last resort. IVIG infusions only buy a couple of months at a time. With the splenectomy she faces the same infection risks that her father now does. But the chance that it could cure her condition are 65% for a complete remission. Her age and relatively short duration of disease (18 months) puts her in the group that has the best chance. If not a complete remission, it could at least buy her 2-5 years of good platelets. It has been a heart wrenching decision, both for her and for us. But she decided to talk with the surgeon (the same one who did her dad's surgery) about the splenectomy. Oddly enough, their appointments are the same day, one right after another.
Since she works at the camp for kids with disabilities in July, she's hoping to schedule her surgery for the first part of August. This means she won't be moving that month. The move and school will have to be post-poned. I admire the fact that she doesn't whine and cry and ask "why me". Don't get me wrong, there've been a few tears, but mostly she just deals. She gets that from her Dad.
So by the time Mike is ready to vacate the sickroom, I'll be moving Lu in. I'm thinking of putting a revolving door on my office. What do you think?
♥Spot
As if we didn't have enough to deal with...bring in the workman's comp case nurses. For real ladies? First they wanted to come into the Dr appts with us. Invasion of privacy much?? I put my foot down there. But they do come in and talk with the doctor (with us present) at the end of the appointments. And ladies...you can stop telling me how you don't really work for the insurance company and you are there on our behalf since every question you ask is geared towards how soon my husband can get back to work. Trust me, no one wants that more than him. But no one is more determined to see that it doesn't happen until he's recovered than me. And I thought you were nurses?? Seriously, even I knew that the recovery period for major surgery is 6 weeks and that's not counting the trauma and broken ribs. You better tread lightly.
And then there's poor Lu. Who was it that said "If you want to make God laugh, tell him your plan"? I guess that applies to the Universe too. Because the Universe sure screwed up my summer plans. And now it's decided to play hell with Lu's school plans. While her Dad was still in the hospital I noticed that she had several awful bruises and was looking pale and tired. Well, of course we were all stressed and not getting much sleep, but my "spidey senses" kicked in. I told her to get a blood test since she hadn't had one in 6 weeks. (Since her platelets had been holding their own at a safe level, the doctor was letting her go two months between appointments.) She argued that she didn't need one, didn't want one. We bickered and finally her Dad threw his weight on my side. The Monday he got out of the hospital, Lu had a blood test and received a frantic call from her hematologist's office. Her platelets had nose-dived to 21,000. We saw him the next day and he explained that since her ITP was recurring it was now classified as chronic and we'd have to look at treatment options. Lu cried. She told him that she didn't want to be on steroids for a year again (the side effects are nasty). He gave us a few options, though he recommended removing her spleen and prescribed some high dose steroids that she'd take four days a month.
The high dose steroids worked and this week her platelets had jumped to 245,000 which is firmly in normal range. But the steroids caused insomnia and muscle pain. We did our research and sadly there are no good options. There's the steroids, but they have harsh side effects with long term use and only buy her a couple of months at a time. She's not a candidate for another treatment because she has RH negative blood. The platelet growth stimulator's only buy a small bump in platelets and can mess with your bone marrow chemistry causing other problems. Also, they are so new that no one knows the long term effects. The Rituximab might buy her a few years of normal platelets but again has harsh side effects and is the doctor's last resort. IVIG infusions only buy a couple of months at a time. With the splenectomy she faces the same infection risks that her father now does. But the chance that it could cure her condition are 65% for a complete remission. Her age and relatively short duration of disease (18 months) puts her in the group that has the best chance. If not a complete remission, it could at least buy her 2-5 years of good platelets. It has been a heart wrenching decision, both for her and for us. But she decided to talk with the surgeon (the same one who did her dad's surgery) about the splenectomy. Oddly enough, their appointments are the same day, one right after another.
Since she works at the camp for kids with disabilities in July, she's hoping to schedule her surgery for the first part of August. This means she won't be moving that month. The move and school will have to be post-poned. I admire the fact that she doesn't whine and cry and ask "why me". Don't get me wrong, there've been a few tears, but mostly she just deals. She gets that from her Dad.
So by the time Mike is ready to vacate the sickroom, I'll be moving Lu in. I'm thinking of putting a revolving door on my office. What do you think?
♥Spot
Monday, May 3, 2010
The one where the Universe gets even with me.
So it never fails...begin to whine about how much is going on in your life...even if you preface it with an "I know I am so blessed" and the Universe will smack you down. Every. Damn. Time. The cat will develop a digestive issue and throw up in an eight foot square on your light colored Berber carpet. Your home office will be invaded by a grumpy invalid in the form of your 18 yr old son.
Yesterday was going well. I managed to blog! I was going to attend two sessions at the online conference. I'd found a story to work on for my submission. Sean and I were in the middle of catching up on *Stargate Universe* when the phone rang. Sean answered it then handed it to me with a funny look on his face~
Me: Who is it?
Sean: I think it's Bobby, but something's wrong.
Me: Hello?
Bobby: (voice strained) I wrecked my bike. Ambulance is here. Get to hospital quick.
Me: On the way!
Sean and I flew out of the house. We called hubby on the way. He said he'd be there as soon as he could. Called Lu because she was at work in town and could get there quickest. I told her he'd had an accident and to meet us at the ER. I neglected to tell her he was alive. Oops.
As we make the 30 minute drive (in 20 minutes), Sean tries to make me laugh~
Sean: Remember the other day when you told him if he wrecked and was paralyzed, you weren't taking care of him because it was his fault??
Me: Yep. But I would, you know?
Sean: If he's in a wheelchair, I'm going to put him on the deck and leave him and then admonish him for not coming in out of the rain.
Me: That's funny. But mean! Hey! Now we can beat all his Wii scores.
We make jokes in this family to deal with stress. And he may not be my son by birth, but my heart was pounding just as bad as it would have if it had been one of the others. The whole ride I imagined the worst. Paralysis, spinal cord injury, broken legs, road rash, nerve damage. At least I knew he was alive and conscious. That ruled out major head trauma. Then Lu called~
Lu: He's alive!
Sean: We knew that. He called us.
Lu: Oh. I didn't know that.
Sean: Well we're almost there.
We got there and rushed back to the room. Lu and his girlfriend were standing outside. Xray was with him. I took in both tear stained faces and hugged them hard.
Lu: They think he broke his clavicle and messed up his left arm.
An EMT we know came up to me.
EMT: Hey, how you doing?
Me: Better now that I know what's going on.
EMT: Yeah. He'll be okay. He's in pain though.
Me: Thanks for bringing him in. Just can't keep them out of trouble.
EMT: He was more worried about his jacket than himself. He wouldn't let us cut it off.
Me: Doesn't surprise me a bit.
We got to go in. He'd been give painkillers but was still in pain. I hugged carefully and kissed the top of his head. His girlfriend's sister and mother came in. Then one of his managers from work came in. In a strange twist of fate, he'd happened by the accident scene, realized it was Bobby's bike and took it to his house so Bobby wouldn't have a towing and storage fee. He said it was in bad shape. (GOOD!) They took him to xray to get more pictures. Lu told me she'd just rushed out of work and to the hospital. She arrived at the same time as the ambulance. She cried the whole way.
After the xrays, he was in a lot of pain again, so I asked the nurse for another shot. About then his real Dad and his girlfriend showed up. His Dad talked to the doctor and me, while his girlfriend went in to check on Bobby. They didn't stay long, but well, things are awkward. I promised to keep them updated. The doctor came in and confirmed the broken left clavicle. Other than assorted bruises and scrapes that was it. They put a sling on it, gave us a prescription for painkillers and released him. We see the orthopedic doctor tomorrow. The first few hours were rough. It's a lot of pain. But luckily, thanks to the meds, he got some sleep. Not as bad today as long as we stay on top of the pain meds. It's going to be a long couple of weeks though. He can't drive and probably can't work.
But it could have been so much worse. All those things that went through my head could have happened. This is just a bump in the road and it too shall pass.
***Don't forget to tune in Wednesday for the giveaway results!!
♥Spot
Yesterday was going well. I managed to blog! I was going to attend two sessions at the online conference. I'd found a story to work on for my submission. Sean and I were in the middle of catching up on *Stargate Universe* when the phone rang. Sean answered it then handed it to me with a funny look on his face~
Me: Who is it?
Sean: I think it's Bobby, but something's wrong.
Me: Hello?
Bobby: (voice strained) I wrecked my bike. Ambulance is here. Get to hospital quick.
Me: On the way!
Sean and I flew out of the house. We called hubby on the way. He said he'd be there as soon as he could. Called Lu because she was at work in town and could get there quickest. I told her he'd had an accident and to meet us at the ER. I neglected to tell her he was alive. Oops.
As we make the 30 minute drive (in 20 minutes), Sean tries to make me laugh~
Sean: Remember the other day when you told him if he wrecked and was paralyzed, you weren't taking care of him because it was his fault??
Me: Yep. But I would, you know?
Sean: If he's in a wheelchair, I'm going to put him on the deck and leave him and then admonish him for not coming in out of the rain.
Me: That's funny. But mean! Hey! Now we can beat all his Wii scores.
We make jokes in this family to deal with stress. And he may not be my son by birth, but my heart was pounding just as bad as it would have if it had been one of the others. The whole ride I imagined the worst. Paralysis, spinal cord injury, broken legs, road rash, nerve damage. At least I knew he was alive and conscious. That ruled out major head trauma. Then Lu called~
Lu: He's alive!
Sean: We knew that. He called us.
Lu: Oh. I didn't know that.
Sean: Well we're almost there.
We got there and rushed back to the room. Lu and his girlfriend were standing outside. Xray was with him. I took in both tear stained faces and hugged them hard.
Lu: They think he broke his clavicle and messed up his left arm.
An EMT we know came up to me.
EMT: Hey, how you doing?
Me: Better now that I know what's going on.
EMT: Yeah. He'll be okay. He's in pain though.
Me: Thanks for bringing him in. Just can't keep them out of trouble.
EMT: He was more worried about his jacket than himself. He wouldn't let us cut it off.
Me: Doesn't surprise me a bit.
We got to go in. He'd been give painkillers but was still in pain. I hugged carefully and kissed the top of his head. His girlfriend's sister and mother came in. Then one of his managers from work came in. In a strange twist of fate, he'd happened by the accident scene, realized it was Bobby's bike and took it to his house so Bobby wouldn't have a towing and storage fee. He said it was in bad shape. (GOOD!) They took him to xray to get more pictures. Lu told me she'd just rushed out of work and to the hospital. She arrived at the same time as the ambulance. She cried the whole way.
After the xrays, he was in a lot of pain again, so I asked the nurse for another shot. About then his real Dad and his girlfriend showed up. His Dad talked to the doctor and me, while his girlfriend went in to check on Bobby. They didn't stay long, but well, things are awkward. I promised to keep them updated. The doctor came in and confirmed the broken left clavicle. Other than assorted bruises and scrapes that was it. They put a sling on it, gave us a prescription for painkillers and released him. We see the orthopedic doctor tomorrow. The first few hours were rough. It's a lot of pain. But luckily, thanks to the meds, he got some sleep. Not as bad today as long as we stay on top of the pain meds. It's going to be a long couple of weeks though. He can't drive and probably can't work.
But it could have been so much worse. All those things that went through my head could have happened. This is just a bump in the road and it too shall pass.
***Don't forget to tune in Wednesday for the giveaway results!!
♥Spot
Tuesday, March 2, 2010
Okay Universe...I'm waiting...
So today my Hubby left at 5:30 am. He'll be out of town for 3 days. Every year he goes to a Ranger Rendezvous. It's kind of like continuing education for Rangers. They have classes and discuss new standards that were put out by The National Organization for everything from water safety to building standards. His job is actually alot more complicated than people think. And once again, he's teaching a welding class. That's what he did before this job, he was a welder in a factory.
He and the Ranger from the other Boy Scout Camp this council owns head off together every year. Sometimes to a Rendezvous in Wisconsin, sometimes to one near Kansas City. I look forward to this time every year with equal parts anticipation and dread. Anticipation because it gives him a chance to get away, talk to other guys about the frustrations of his job and have them really understand. He comes back with new ideas and new enthusiasm. And the kids and I enjoy the time because we can eat things he doesn't like. And the man is one picky ass eater. The kids pitch in more willingly around the house when he's not home and I get our bed all to myself.
I dread it because something always seems to go wrong. Last year it was the dishwasher. I got up the second morning after he'd left and the kitchen was full of water. After several long distance calls and both Sean and I practically climbing into the dishwasher, we gave up and washed dishes by hand til he got home. Turns out the lime stuff he told me to put through it to clean it, ate a lot of the plastic coating and clogged the drain. Awesome. The year before that I had to take his truck into camp and unlock some doors for some people who were doing some work the next day. The truck got a flat. Luckily, I made it to the parking lot and parked it. Sean and I walked a mile home in the pitch dark. Can we say spooky?? Especially since Sean kept bringing up horror movies we'd seen. The year before that? I was actually hospitalized with pneumonia the week he was gone. Thankfully, my mom had already planned to come that week. Since neither of the kids had drivers licenses at the time, she was a lifesaver.
So this week, I'm waiting for the catastrophe. I'm ready universe, bring. it. on. Unless it comes in the form of 8 or more inches of snow. Then I'm pretty much screwed. I don't know how to plow snow. But at least the pantry's stocked. And there's plenty of firewood. We could wait it out. I think...
♥Spot
PS. In case of a Zombie Apocalypse (don't be laughing, it is an ever present danger) we are also probably screwed. While all of us can shoot, he really is the best shot. He's like a ninja sniper. It's definitely one of the reasons I stay married to him. Mad ninja sniper skillz.
He and the Ranger from the other Boy Scout Camp this council owns head off together every year. Sometimes to a Rendezvous in Wisconsin, sometimes to one near Kansas City. I look forward to this time every year with equal parts anticipation and dread. Anticipation because it gives him a chance to get away, talk to other guys about the frustrations of his job and have them really understand. He comes back with new ideas and new enthusiasm. And the kids and I enjoy the time because we can eat things he doesn't like. And the man is one picky ass eater. The kids pitch in more willingly around the house when he's not home and I get our bed all to myself.
I dread it because something always seems to go wrong. Last year it was the dishwasher. I got up the second morning after he'd left and the kitchen was full of water. After several long distance calls and both Sean and I practically climbing into the dishwasher, we gave up and washed dishes by hand til he got home. Turns out the lime stuff he told me to put through it to clean it, ate a lot of the plastic coating and clogged the drain. Awesome. The year before that I had to take his truck into camp and unlock some doors for some people who were doing some work the next day. The truck got a flat. Luckily, I made it to the parking lot and parked it. Sean and I walked a mile home in the pitch dark. Can we say spooky?? Especially since Sean kept bringing up horror movies we'd seen. The year before that? I was actually hospitalized with pneumonia the week he was gone. Thankfully, my mom had already planned to come that week. Since neither of the kids had drivers licenses at the time, she was a lifesaver.
So this week, I'm waiting for the catastrophe. I'm ready universe, bring. it. on. Unless it comes in the form of 8 or more inches of snow. Then I'm pretty much screwed. I don't know how to plow snow. But at least the pantry's stocked. And there's plenty of firewood. We could wait it out. I think...
♥Spot
PS. In case of a Zombie Apocalypse (don't be laughing, it is an ever present danger) we are also probably screwed. While all of us can shoot, he really is the best shot. He's like a ninja sniper. It's definitely one of the reasons I stay married to him. Mad ninja sniper skillz.
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