Yes, you read that right. I know, I'm usually not given to freaking out. And I'm definitely not given to public acknowledgement of freaking out. But there you have it. Why this behavior you ask? Because Friday is the day. The day of my knee surgery. Um. Yeah. I do know that it's supposed to be a very simple surgery. Yes. I do know that the incisions are tiny and require only one stitch. Sure I know that I should be completely healed up in a week. So why am I freaking out? Because last summer they gave me the same song and dance and I ended up with a 4 inch gash and major recovery, oh yeah and then it go infected and then I found out they nicked an artery while they were in there. So pardon my freak out, but me and surgery are not on good terms.
I visited Mike's aunt yesterday and we got to have a long chat. We have very much the same personalities and outlook. Having been through what she's going through just last year, we were able to really connect. I zeroed in on her exact fears because they were the same ones I had harbored. I think our talk helped some. And I know the trashy magazines, travel bottles of soap and shampoos, and Lindor Truffles I took her helped. A girl has got to have her stuff. Fortunately, so far they haven't found anything that specifically points to cancer. Now it's a waiting game til surgery when they can remove the cyst and biopsy it.
Lu and I both have doctor appointments today. Mine to discuss some hopefully minor stuff and hers with her hematologist to check her blood counts. Positive thoughts that they are good please. Then she sees the surgeon on Thursday and she's hoping to get released for work.
After the doctors visits we will be going to the visitation for my friend's husband. I'm wearing tons of waterproof mascara.
Sean started his full time job today. I think I was ten times more nervous than he. I packed him a lunch. I can't wait to hear how it goes.
And Mike and I had this conversation this morning~
Me: (knocking on his office door and entering) Um. So I wanted to give you the bad news in person since I'm such a supportive wife and all.
Mike: (turning to me expecting a money issue I'm sure) What?
Me: I'm really sorry, but Bob from "Bob and Tom" died.
Mike: Um. Ok.
Me: He was in a car accident in Arizona.
Mike: Um. Huh.
Me: I thought you loved that show?!
Mike: Well I don't get to listen to it very often.
Me: Whatever. That's the last time I break things to you gently. Next time you get a Post It note.
And today I received an email from one of my Kindle readers. How cool is that?! I always wonder about them. You know, who they are and how they found my blog, ect. So thank you Donna from Texas for the blog love! It was great to hear from you.
Happy Tuesday,
♥Spot
Showing posts with label Lu's battle with ITP. Show all posts
Showing posts with label Lu's battle with ITP. Show all posts
Tuesday, September 7, 2010
Thursday, September 2, 2010
The one where I have appendicitis in my ovary and other weird shit
Why is it that on any given day I can be completely in love with some doctors (yes, Lu and I have decided to leave Mike and Luke and become part of Dr. Saeed's harem. No, I don't know if he has an actual harem, but we aren't afraid to start one.) and completely disgusted by other doctors? Not to mention nurses...
First, Lu's appointments went well yesterday. She got the okay to leave the house and appear in public sans mask. Which is really good, because yesterday she was extremely pissy about having to wear one and I had to deliver (for roughly the 360th time) the lecture on accepting things gracefully versus acting like a spoiled five year old. But since she's currently on so many antibiotics and has more to take once she finishes those, I'm pretty sure she has like an invisible electrified germ fence around her. The unfortunate news is that they have to wait til early November to do most of the immunological testing since she had IVIG infusions the beginning of August. They said she has 3000 other peoples antibodies running through her system now. And yet she still managed to get two different kinds of pneumonia and a kidney infection. Unbelievable. But she feels pretty good and is hoping the surgeon will let her go back to work at her next appointment. She did take back over the laundry which makes my knee happy.
So lets move on to the bizarre portion of this post. For those of you who have been reading from the beginning (thank you Danica!) or those of you who have read the archived posts, when I started this blog I was about to have surgery to remove my right ovary and the cyst that had taken it over. The surgery was a comedy of errors but the cyst was benign and I slowly healed up. Lately however, I've been having some pain in the exact area where the cyst used to be. It feels exactly like it did when I had the cyst. So I called the doctor's office.
Me: Um. Yeah. I had my right ovary removed last August due to a huge cyst. But now I'm having pain in the exact same place and it feels like it did when I had the cyst.
Nurse: Well you can't have pain in an ovary you don't have.
Me: (duh) well I didn't say it was the ovary, it's just in that vicinity.
Nurse: How long have you been having the pain?
Me: Off and on for the last couple of months but more so the last two days.
Nurse: What are you taking for pain?
Me: Nothing. (because I'm not a whiny little b*tch)
Nurse: Well are you sure they took out your ovary?
Me: Well, if they didn't I'm gonna be really pissed off since that's the whole reason they split me open!
Nurse: Well it's probably not gynecological.
Me: Um. Couldn't it be something at the surgical site? Doesn't she want to take a look?
Nurse: *huge exasperated sigh* I'll talk to the doctor and call you back.
So the next day, she calls back~
Nurse: The doctor says to take Tylenol or Motrin for pain.
Me: Um. Okay. (shouldn't we figure out why I'm in pain first?)
Nurse: and if you start to run a fever it might be appendicitis so you should call your regular doctor.
Me: That's it?
Nurse: Yes.
Really?! I almost asked if I was being punked!! Who has appendix pain in their right lower quadrant?! Do they think my appendix shifted in to fill the empty space left by my ovary? Or is the appendicitis in my non existent ovary?? Bear in mind this was the doctor who only did an ultrasound on the ovary after I put my foot down about it. I'm so finding a new doctor, if the ovarian appendicitis doesn't kill me first.
And in other news, Sean withdrew from College. A week after classes started he came to me with a plan. He said he was miserable every minute of class (which I thought he might be) and that he was too young to be miserable (which he knew I'd agree with). So he withdrew and is planning to get a job or two and save all year. Next year he wants to go to three different high adventure boy scout camps. He'd go on the OA work program so he works there for half the time and then gets to play. The prices aren't bad and I'm all for seeing some sights and having some fun before you settle down. He'd get to go to the mountains in West Virginia, the Florida Keys and Philmont in the New Mexico mountains. So he's been busy filling out applications. One he filled out was for Bonkers, which is our towns version of Discovery Zone or Gymbaree.
Me: You just want to work there so you can check out all the hot single moms.
Sean: Yep. Nothing says sexy like a diaper bag.
I'm hoping he doesn't mean that.
Well, I'm off. Mike has his appointment today with the orthopedist to go over his shoulder MRI. Then we're off to his physical therapy and dinner at a Mexican restaurant I've never been to. I guess that's worth having to kill an hour while he's being tortured.
♥Spot
First, Lu's appointments went well yesterday. She got the okay to leave the house and appear in public sans mask. Which is really good, because yesterday she was extremely pissy about having to wear one and I had to deliver (for roughly the 360th time) the lecture on accepting things gracefully versus acting like a spoiled five year old. But since she's currently on so many antibiotics and has more to take once she finishes those, I'm pretty sure she has like an invisible electrified germ fence around her. The unfortunate news is that they have to wait til early November to do most of the immunological testing since she had IVIG infusions the beginning of August. They said she has 3000 other peoples antibodies running through her system now. And yet she still managed to get two different kinds of pneumonia and a kidney infection. Unbelievable. But she feels pretty good and is hoping the surgeon will let her go back to work at her next appointment. She did take back over the laundry which makes my knee happy.
So lets move on to the bizarre portion of this post. For those of you who have been reading from the beginning (thank you Danica!) or those of you who have read the archived posts, when I started this blog I was about to have surgery to remove my right ovary and the cyst that had taken it over. The surgery was a comedy of errors but the cyst was benign and I slowly healed up. Lately however, I've been having some pain in the exact area where the cyst used to be. It feels exactly like it did when I had the cyst. So I called the doctor's office.
Me: Um. Yeah. I had my right ovary removed last August due to a huge cyst. But now I'm having pain in the exact same place and it feels like it did when I had the cyst.
Nurse: Well you can't have pain in an ovary you don't have.
Me: (duh) well I didn't say it was the ovary, it's just in that vicinity.
Nurse: How long have you been having the pain?
Me: Off and on for the last couple of months but more so the last two days.
Nurse: What are you taking for pain?
Me: Nothing. (because I'm not a whiny little b*tch)
Nurse: Well are you sure they took out your ovary?
Me: Well, if they didn't I'm gonna be really pissed off since that's the whole reason they split me open!
Nurse: Well it's probably not gynecological.
Me: Um. Couldn't it be something at the surgical site? Doesn't she want to take a look?
Nurse: *huge exasperated sigh* I'll talk to the doctor and call you back.
So the next day, she calls back~
Nurse: The doctor says to take Tylenol or Motrin for pain.
Me: Um. Okay. (shouldn't we figure out why I'm in pain first?)
Nurse: and if you start to run a fever it might be appendicitis so you should call your regular doctor.
Me: That's it?
Nurse: Yes.
Really?! I almost asked if I was being punked!! Who has appendix pain in their right lower quadrant?! Do they think my appendix shifted in to fill the empty space left by my ovary? Or is the appendicitis in my non existent ovary?? Bear in mind this was the doctor who only did an ultrasound on the ovary after I put my foot down about it. I'm so finding a new doctor, if the ovarian appendicitis doesn't kill me first.
And in other news, Sean withdrew from College. A week after classes started he came to me with a plan. He said he was miserable every minute of class (which I thought he might be) and that he was too young to be miserable (which he knew I'd agree with). So he withdrew and is planning to get a job or two and save all year. Next year he wants to go to three different high adventure boy scout camps. He'd go on the OA work program so he works there for half the time and then gets to play. The prices aren't bad and I'm all for seeing some sights and having some fun before you settle down. He'd get to go to the mountains in West Virginia, the Florida Keys and Philmont in the New Mexico mountains. So he's been busy filling out applications. One he filled out was for Bonkers, which is our towns version of Discovery Zone or Gymbaree.
Me: You just want to work there so you can check out all the hot single moms.
Sean: Yep. Nothing says sexy like a diaper bag.
I'm hoping he doesn't mean that.
Well, I'm off. Mike has his appointment today with the orthopedist to go over his shoulder MRI. Then we're off to his physical therapy and dinner at a Mexican restaurant I've never been to. I guess that's worth having to kill an hour while he's being tortured.
♥Spot
Tuesday, August 31, 2010
The one where I re-think my goals for the year...
Thank you to everyone for all your wonderful comments! Except you...you follower who deserted me. For real?? Kick a girl while she's down?! What kind of person does that? Rude.
You know what weirds me out? Not much actually. But it weirds me out when I'm in a group and I go to tell a story and someone says "Oh yeah! I read that on your blog". I know right?! In a sense it's a little annoying, because obviously I wanted to tell that story and now they've ruined it. But also because it means people I know know way more about me than I do them. It also makes me think twice before I write anything, which shouldn't be the case but it is. I mean if I bitched about someone I know on the blog now it would totally get back to them and probably blown all out of proportion. I mean, don't get me wrong, being widely read (at least in my little neck of the woods) is awesome but also kind of surreal.
Lu is doing well here at home. She hasn't run a fever, she's eating more, and other than tiring really easily she is symptom free. She takes her medicine with a jello cup or pudding cup and that seems to help it stay down. She is going stir crazy though. It's tough to be stuck at home when you're eighteen. So I spend alot of time hanging out with her to keep her entertained. Since I love hanging out with her, it's not much of a hardship but I do seem to fall behind in my tasks. Which got me to thinking about goals and how I haven't accomplished any this year.
Normally, I don't do New Year's resolutions. But turning forty last year had me thinking I needed to set some goals. You know, something to strive for. We're almost three quarters of the way through the year and I have accomplished exactly none of my goals. So either I need to reevaluate my goals or step up my game.
My goals were simple, because I believe in making them attainable so I don't feel like a failure (the way I kind of do right now). I wanted to lose twenty pounds (should be easy to do in a year, right? Hmmph). I wanted to get two stories accepted for publication. And I wanted to finish a novel. I have not lost any weight. Unless you count the five pounds I'm continually losing and then re-gaining. I guess I've done it at least four times now so technically I lost twenty pounds and said goal didn't state that I had to keep them off. I haven't had any stories accepted for publication although I have collected some really nice and some form rejection letters. And I have two novels in progress but nowhere near finished. And I haven't written a word of fiction in over two months. These goals are kicking my ass. So my Dad suggested I make a list of the things I have accomplished this year even if they weren't even in my thoughts when I made the last goals. So here goes:
1. Began freelancing. This wasn't even something I'd given thought to last December when I made my goals. I didn't think I had the skills or connections. But now I make enough money freelancing to pay the payments on my new vehicle plus save some. Thank you to Kathryn who talked me through getting started and gave me the pushes I needed.
2. Attended my first writing conference. Thank you to Deena and everyone at Coyote Con for coming up with and presenting an online conference that made it easy to attend. I learned so much and met so many amazing folks. I'm a better writer for it.
3. Began submitting again. Thank you to Tina for her encouragement and editing skills. Thanks also to Suzicate and Kenzie for being my fruit loop girls! I so want success for all of you as much as I do for myself. I haven't had any acceptances yet, but there are still three more months to the year...
4. Renewed my relationship with my husband. It's funny that this wasn't one of my original goals when I now know that it should have been. This relationship is the backbone of our family and both of us had taken it for granted for far too long. It's a shame it took such an earth shattering event for us to realize it, but you take your wake up calls where you find them.
5. Found out that I have the most amazing (and world wide) support group ever. So much love and support were sent our way after Mike's accident, not only from family and close friends, but from the entire community and the Internet. It feels amazing to realized that you are so blessed.
6. Found a renewed sense of my spirituality. I'm not going to preach here, but it's hard not to have faith in a higher power after everything this year has brought.
7. Managed to retain and even add a few followers to this blog (except for the deserter...). That means alot to me, because this blog has become so much a part of who I am.
And that's where my mind is at right now. Contemplative. What were your goals and have you reached them? Are you progressing towards them or is it time for a re-evaluation? Do you even set any? Enquiring minds want to know...
♥Spot
You know what weirds me out? Not much actually. But it weirds me out when I'm in a group and I go to tell a story and someone says "Oh yeah! I read that on your blog". I know right?! In a sense it's a little annoying, because obviously I wanted to tell that story and now they've ruined it. But also because it means people I know know way more about me than I do them. It also makes me think twice before I write anything, which shouldn't be the case but it is. I mean if I bitched about someone I know on the blog now it would totally get back to them and probably blown all out of proportion. I mean, don't get me wrong, being widely read (at least in my little neck of the woods) is awesome but also kind of surreal.
Lu is doing well here at home. She hasn't run a fever, she's eating more, and other than tiring really easily she is symptom free. She takes her medicine with a jello cup or pudding cup and that seems to help it stay down. She is going stir crazy though. It's tough to be stuck at home when you're eighteen. So I spend alot of time hanging out with her to keep her entertained. Since I love hanging out with her, it's not much of a hardship but I do seem to fall behind in my tasks. Which got me to thinking about goals and how I haven't accomplished any this year.
Normally, I don't do New Year's resolutions. But turning forty last year had me thinking I needed to set some goals. You know, something to strive for. We're almost three quarters of the way through the year and I have accomplished exactly none of my goals. So either I need to reevaluate my goals or step up my game.
My goals were simple, because I believe in making them attainable so I don't feel like a failure (the way I kind of do right now). I wanted to lose twenty pounds (should be easy to do in a year, right? Hmmph). I wanted to get two stories accepted for publication. And I wanted to finish a novel. I have not lost any weight. Unless you count the five pounds I'm continually losing and then re-gaining. I guess I've done it at least four times now so technically I lost twenty pounds and said goal didn't state that I had to keep them off. I haven't had any stories accepted for publication although I have collected some really nice and some form rejection letters. And I have two novels in progress but nowhere near finished. And I haven't written a word of fiction in over two months. These goals are kicking my ass. So my Dad suggested I make a list of the things I have accomplished this year even if they weren't even in my thoughts when I made the last goals. So here goes:
1. Began freelancing. This wasn't even something I'd given thought to last December when I made my goals. I didn't think I had the skills or connections. But now I make enough money freelancing to pay the payments on my new vehicle plus save some. Thank you to Kathryn who talked me through getting started and gave me the pushes I needed.
2. Attended my first writing conference. Thank you to Deena and everyone at Coyote Con for coming up with and presenting an online conference that made it easy to attend. I learned so much and met so many amazing folks. I'm a better writer for it.
3. Began submitting again. Thank you to Tina for her encouragement and editing skills. Thanks also to Suzicate and Kenzie for being my fruit loop girls! I so want success for all of you as much as I do for myself. I haven't had any acceptances yet, but there are still three more months to the year...
4. Renewed my relationship with my husband. It's funny that this wasn't one of my original goals when I now know that it should have been. This relationship is the backbone of our family and both of us had taken it for granted for far too long. It's a shame it took such an earth shattering event for us to realize it, but you take your wake up calls where you find them.
5. Found out that I have the most amazing (and world wide) support group ever. So much love and support were sent our way after Mike's accident, not only from family and close friends, but from the entire community and the Internet. It feels amazing to realized that you are so blessed.
6. Found a renewed sense of my spirituality. I'm not going to preach here, but it's hard not to have faith in a higher power after everything this year has brought.
7. Managed to retain and even add a few followers to this blog (except for the deserter...). That means alot to me, because this blog has become so much a part of who I am.
And that's where my mind is at right now. Contemplative. What were your goals and have you reached them? Are you progressing towards them or is it time for a re-evaluation? Do you even set any? Enquiring minds want to know...
♥Spot
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
Sunday, August 15, 2010
The one where I reassure you that I'm still alive...
Yes indeed I am still alive for those of you who are wondering. I do apologize sincerely for not posting even somewhat regularly lately. And for not reading and commenting and knowing what's also going on in your lives. The last two weeks have been hectic and stressful and some days I just don't have the brain power left to post. So this is a quick update.
Mike is still doing well after being released to go back to work. He did end up with an infection in his finger where the stitching had left a hole. And we saw an orthopedic doctor about the shoulder pain he's had since the accident. The doctor wants an MRI.
Sean won his election yesterday. He's now the chief of the OA Lodge. Yes it is an honor and also a huge responsibility. I know, without a doubt, he'll live up to the challenge. And besides, he has an awesome speech writer (me). He starts his first college courses on Monday. I think I'm more excited than he is.
Molly had a blood test Monday and her platelets had only climbed to 122,000 after the IVIG. It was very disappointing that they didn't get boosted more. On Friday we went back to her hematologist to find that they had dropped to 93,000. The IVIG was not doing it's job. The doctor put her on a high dose of steroids to hopefully boost them up for the surgery Tuesday. The continued dropping and non response to treatment has me very worried. Her hemoglobin is also down. He's convinced that the two are not related and that the low hemoglobin is just iron deficiency anemia. But she's already on a high dose of iron twice a day. I'm not one to ask for prayers but any love, positive thoughts, prayer, or good karma that you can throw our way would be greatly appreciated on Tuesday and beyond.
And me? Well, I'm exhausted, stressed, slightly grumpy and the knee is giving me trouble. And I'm currently without my best friend. My computer is having issues and is unusable. I'm borrowing Mo's laptop and it's a civil relationship at best. I miss my computer. The good news is I backed up all my writing online and pictures on SD cards. Somedays I'm smarter than the average bear.
So here's just a few random items:
*Mike got an awesome new work truck. Like the last one, only better. And thank god it's dark blue and not red. I would have flipped out. I still get trauma room flashbacks and hate when he drives off camp property alone.
*Thursday night I dreamed I got a rejection notice on one of the stories I currently had out on submission...guess what was in my email inbox Friday morning. How come prophetic dreams are always about bad stuff?!
*Mo's Luke got a job at Applebees and likes it.
*I'm going to a writer's conference in Ohio the end of the month (provided Mo is doing okay) and my sister Hildi is going with me!!
*We have to be at the hospital for Mo's surgery at 6 am on Tuesday morning. Are they freakin serious?? Apparently they are.
*I haven't written a single word on my fiction works for almost a month. That's no way to treat your career. Luckily I'm (just barely) managing to keep up with my freelancing. And that's only because I need the paycheck.
*When Mo was getting her infusions, the pastors from my Grandmother's church stopped in on different days. One is older and always tells a joke. The other is young and very personable. The young one and I had this conversation-
Him: Well God always has a plan even if we don't know what it is.
Me: so everything happens for a reason, right?
Him: Yes.
Me: when Mike was in the hospital someone told me that God never gives you more than you can handle.
Him: that's right.
Me: (leaning in conspiratorially) well, just between you and me, I think he may have seriously overestimated my capabilities.
Him: No, he just has faith in you.
Me: I think he may have too much faith.
So friends, bloggy buds, tweeples, bear with me. I am certain things have to slow down. And I will be taking the laptop to the hospital with me while I stay with Mo. I'll post updates when I can. Take care of yourselves and be good to one another in my absence. You are all in my heart and thoughts.
Always,
♥Spot
Mike is still doing well after being released to go back to work. He did end up with an infection in his finger where the stitching had left a hole. And we saw an orthopedic doctor about the shoulder pain he's had since the accident. The doctor wants an MRI.
Sean won his election yesterday. He's now the chief of the OA Lodge. Yes it is an honor and also a huge responsibility. I know, without a doubt, he'll live up to the challenge. And besides, he has an awesome speech writer (me). He starts his first college courses on Monday. I think I'm more excited than he is.
Molly had a blood test Monday and her platelets had only climbed to 122,000 after the IVIG. It was very disappointing that they didn't get boosted more. On Friday we went back to her hematologist to find that they had dropped to 93,000. The IVIG was not doing it's job. The doctor put her on a high dose of steroids to hopefully boost them up for the surgery Tuesday. The continued dropping and non response to treatment has me very worried. Her hemoglobin is also down. He's convinced that the two are not related and that the low hemoglobin is just iron deficiency anemia. But she's already on a high dose of iron twice a day. I'm not one to ask for prayers but any love, positive thoughts, prayer, or good karma that you can throw our way would be greatly appreciated on Tuesday and beyond.
And me? Well, I'm exhausted, stressed, slightly grumpy and the knee is giving me trouble. And I'm currently without my best friend. My computer is having issues and is unusable. I'm borrowing Mo's laptop and it's a civil relationship at best. I miss my computer. The good news is I backed up all my writing online and pictures on SD cards. Somedays I'm smarter than the average bear.
So here's just a few random items:
*Mike got an awesome new work truck. Like the last one, only better. And thank god it's dark blue and not red. I would have flipped out. I still get trauma room flashbacks and hate when he drives off camp property alone.
*Thursday night I dreamed I got a rejection notice on one of the stories I currently had out on submission...guess what was in my email inbox Friday morning. How come prophetic dreams are always about bad stuff?!
*Mo's Luke got a job at Applebees and likes it.
*I'm going to a writer's conference in Ohio the end of the month (provided Mo is doing okay) and my sister Hildi is going with me!!
*We have to be at the hospital for Mo's surgery at 6 am on Tuesday morning. Are they freakin serious?? Apparently they are.
*I haven't written a single word on my fiction works for almost a month. That's no way to treat your career. Luckily I'm (just barely) managing to keep up with my freelancing. And that's only because I need the paycheck.
*When Mo was getting her infusions, the pastors from my Grandmother's church stopped in on different days. One is older and always tells a joke. The other is young and very personable. The young one and I had this conversation-
Him: Well God always has a plan even if we don't know what it is.
Me: so everything happens for a reason, right?
Him: Yes.
Me: when Mike was in the hospital someone told me that God never gives you more than you can handle.
Him: that's right.
Me: (leaning in conspiratorially) well, just between you and me, I think he may have seriously overestimated my capabilities.
Him: No, he just has faith in you.
Me: I think he may have too much faith.
So friends, bloggy buds, tweeples, bear with me. I am certain things have to slow down. And I will be taking the laptop to the hospital with me while I stay with Mo. I'll post updates when I can. Take care of yourselves and be good to one another in my absence. You are all in my heart and thoughts.
Always,
♥Spot
Thursday, August 5, 2010
The one where we spend alot of time at the hospital and Mike thinks he's funny.
Hola! For those of you who don't watch Dora the Explorer, that's "hello" in Spanish. See how coming here is totally educational? New languages, new words for the old language, zombie apocalypse survival strategies, it's like one stop shopping only for blog reading. And I'm hoping it's totally making up for my sporadic blog posting of late.
This week has been mostly spent (or at least it feels like it) at the hospital with Lu while she gets her infusions. Monday we had to see the doctor first and it took forever. Her platelets had dropped 33,000 points over the weekend leaving her again at 22,000. Good thing we'd already scheduled the IVIG. They decided to spread it out so that she may not have such a bad reaction this time. So the first day took 4 hours. It's not so bad for Lu, they give her a huge dose of Benadryl and Tylenol to help combat any reaction and once she's hooked up she pretty much passes out for the rest of the time. Seriously, even the blood pressure cuff taking her BP every half hour doesn't wake her up. But Luke and I are here just basically watching her sleep. I finally thought about bringing the laptop yesterday but I forgot the plug and it was dead. This time I was better prepared! So far so good reaction wise. Other than fatigue (even with a 3 hour nap every day) she's had no other side effects. She looks really pale today though, but I've got my fingers crossed she stays okay. The receptionist, the nurses, everyone now knows Molly by name. They're all extremely nice and caring. And we've met some wonderful people who are in here having treatments too. Most of them are elderly so they are very curious about a young girl and what her ailment might be.
Sean is doing well. He called last night from the hotel in Virginia again. They left Jamboree yesterday and began their whirlwind DC tour. He sounds exhausted. I asked if he was still Jewish and he said he might be. Lol! He said one of the oddest things from the day was how a homeless man stole food from one of the scouts in Union Station. Apparently it was Taco Bell on a tray the boy was holding and the homeless man walked up and grabbed it and mumbled something and ran off. I said it's probably good karma to let bums steal your food. And he probably mumbled "thanks, dude". He's having a good time but he sounds ready to come home.
So apparently since Mike's accident he thinks he's developed a real funny streak. Some illustrations~
Me: (on a Sunday night when once again he's asking if I want to go to the bar) No. I'm not going anywhere. I had to go to town every flippin day this last week. I'm being a hermit today. I don't want to deal with people. Did I tell you how much I don't like people sometimes?
Mike: Yes. You made your opinion known. Loudly. Yesterday. While you were throwing groceries at me.
Me: Good. But I was not throwing groceries. I might have been slamming them around, but I was not throwing. I wouldn't want to dent cans or smoosh bread.
That same night, our air conditioner froze up and we had to shut it off so it could defrost. I'm so not good with heat. We found a fan and set it up to blow directly on my side of the bed.
Me: I'm sorry I'm going to be hogging all the fan.
Mike: It's okay. I'm considering sleeping on the couch.
Me: Why??
Mike: Because I'm afraid I'll roll over in the night and accidentally touch you and you'll yell "don't touch me...it's hot" and I'll lose an appendage.
Me: Wow. You really do know me well.
Pretty sure I like this more snarkastic side of him. Pretty sure I still need to move north to avoid the heat. *note to self* Write Blockbuster Bestseller sooner rather then later.
Hope you all are having a good week!
♥Spot
PS- hamletsmistress- took your advice, upped the calories, five pounds fell off! Score! Thanks mucho!
This week has been mostly spent (or at least it feels like it) at the hospital with Lu while she gets her infusions. Monday we had to see the doctor first and it took forever. Her platelets had dropped 33,000 points over the weekend leaving her again at 22,000. Good thing we'd already scheduled the IVIG. They decided to spread it out so that she may not have such a bad reaction this time. So the first day took 4 hours. It's not so bad for Lu, they give her a huge dose of Benadryl and Tylenol to help combat any reaction and once she's hooked up she pretty much passes out for the rest of the time. Seriously, even the blood pressure cuff taking her BP every half hour doesn't wake her up. But Luke and I are here just basically watching her sleep. I finally thought about bringing the laptop yesterday but I forgot the plug and it was dead. This time I was better prepared! So far so good reaction wise. Other than fatigue (even with a 3 hour nap every day) she's had no other side effects. She looks really pale today though, but I've got my fingers crossed she stays okay. The receptionist, the nurses, everyone now knows Molly by name. They're all extremely nice and caring. And we've met some wonderful people who are in here having treatments too. Most of them are elderly so they are very curious about a young girl and what her ailment might be.
Sean is doing well. He called last night from the hotel in Virginia again. They left Jamboree yesterday and began their whirlwind DC tour. He sounds exhausted. I asked if he was still Jewish and he said he might be. Lol! He said one of the oddest things from the day was how a homeless man stole food from one of the scouts in Union Station. Apparently it was Taco Bell on a tray the boy was holding and the homeless man walked up and grabbed it and mumbled something and ran off. I said it's probably good karma to let bums steal your food. And he probably mumbled "thanks, dude". He's having a good time but he sounds ready to come home.
So apparently since Mike's accident he thinks he's developed a real funny streak. Some illustrations~
Me: (on a Sunday night when once again he's asking if I want to go to the bar) No. I'm not going anywhere. I had to go to town every flippin day this last week. I'm being a hermit today. I don't want to deal with people. Did I tell you how much I don't like people sometimes?
Mike: Yes. You made your opinion known. Loudly. Yesterday. While you were throwing groceries at me.
Me: Good. But I was not throwing groceries. I might have been slamming them around, but I was not throwing. I wouldn't want to dent cans or smoosh bread.
That same night, our air conditioner froze up and we had to shut it off so it could defrost. I'm so not good with heat. We found a fan and set it up to blow directly on my side of the bed.
Me: I'm sorry I'm going to be hogging all the fan.
Mike: It's okay. I'm considering sleeping on the couch.
Me: Why??
Mike: Because I'm afraid I'll roll over in the night and accidentally touch you and you'll yell "don't touch me...it's hot" and I'll lose an appendage.
Me: Wow. You really do know me well.
Pretty sure I like this more snarkastic side of him. Pretty sure I still need to move north to avoid the heat. *note to self* Write Blockbuster Bestseller sooner rather then later.
Hope you all are having a good week!
♥Spot
PS- hamletsmistress- took your advice, upped the calories, five pounds fell off! Score! Thanks mucho!
Sunday, August 1, 2010
The one where I totally ramble on because that's what I do best.
I know, I know. I left everyone in the lurch this last week. *hangs head in shame*. Very heartfelt apologies. It has been one of "those" weeks. Who'm I kidding? It's pretty much been one of "those" summers and to tell the truth fall is not looking to be much better. So this post will be a long one and a bit of a mash-up as I catch you all up on what's going down in Spot Town.
Monday I had an MRI on the right knee because it does pretty much the same as the left and if I'm going to get one fixed I might as well try to hit the two for one deal, right? I mean walking is highly overrated, right? Seriously, you save money if you combine surgeries because they only charge you once for the operating room, anesthesia, ect. A surgeon taught me this several years ago. And besides the monetary savings, I only have to freak out once this way. And if you've been here since the beginning you know how bad being put under freaks me out. After the MRI, we headed to Springfield, met my folks at Texas Roadhouse (thanks for dinner Mom & Dad!!). It was super yummy and we had a great time. Then we picked up CJ from his house and headed home. Unfortunately, due to a communication snafu between his school and his home they had already given him his night meds. Which means when we got home at eleven, he was wide awake. He didn't fall asleep til 2:30 am. Which means I didn't get to sleep til then. And while he woke up bright and chipper at 8:30, my butt was dragging.
In spite of that we had a great day. We swam in the lake. CJ does a vicious dog-paddle which he learned at the age of two and still continues to manage to propel himself through the water with. We took golf cart rides through camp (his favorite) and then made a trip to town to run a few errands and pick up pizza. And CJ got his haircut at the salon. This is monumental. He hates haircuts and starts freaking the minute you turn on the clippers. But if we don't cut his hair he grows this wild Harpo Marx 'do. The girl was amazing. She spoke softly and reassuringly, let him hold her hand and warned him before she did anything like "I'm going to turn the chair just a bit now". And it worked. Which was a huge relief.
Wednesday Mike & I had to run to town in the morning for an appointment, so Luke accompanied CJ down into camp to hang out with Lu and her campers. I think this was an eye opening experience for Luke who has not spent alot of time around people with disabilities but he did well. After Mike & I returned we swam again and took more rides.
And Thursday CJ accompanied Mike and Luke to camp while they ran the zip line and I took Lu to the doctor. Mike tried to get CJ to ride the zip line. No go. I warned him. That afternoon we took CJ back to his house and I cried. It's so hard to leave him when we've had a great visit. We've decided that when he turns 21 we will move him to a group home in the nearby town so that we can see him more frequently.
On to Lu's doctor visit. Her counts have dropped back down to 50,000. They have to be brought up for the surgery so we start IVIG treatments again on Monday. She was not happy, but she seems to be taking it in better stride. Mostly she hates missing work and spending hours at the hospital (um Me too!). They will spread it out over five days this time in hopes of lessening her side effects. Fingers crossed. The surgery is getting closer though and this last treatment should keep her boosted up enough for the surgery. They will take a blood test that morning to be sure and they will have blood and platelets standing by in the operating room should they need them. She will be in the hospital about 5-6 days. So you know where I will be as well. And then at home recuperating for several weeks. I guess the silver lining is that I will get to spend some quality time with my daughter before she heads out to start her life.
Wondering about Sean? Yeah, it's cool, I know you are. He called me Sunday from the hotel in Virginia. He enjoyed Gettysburg and took pictures for me. Then he called me again Friday night. He was pretty psyched about scuba diving. And he'd just attended a Jewish religious service. Apparently he was quite impressed because it was fun. They sang and danced.
Me: So are you going to become Jewish now?
Sean: No. Probably not. But if we have the chance to attend a service somewhere around where we live, I'm totally gonna take you. I think you'd like it. And I will never make fun of Jewish people again. I'm still wearing my yarmulke. And we're eating dinner with some Jewish boy scouts so I'm totally eating kosher.
Me: Let me know how that goes. What else did you do today?
Sean: I did some archery. I really suck at it. Then we did air rifles, tomahawk throwing and knife throwing. I'm pretty good at throwing tomahawks and knives.
Me: You get that from me. And that will come in pretty handy during the zombie apocalypse. I can back you up with the archery, I'm pretty good at it. Plus I throw darts like no body's business.
Sean: I think I'm just going to go with a flamethrower in the zombie apocalypse.
Me: Why? You know flames don't kill them and then they just end up setting things on fire.
Sean: I read that blog by the Bloggess too. I'm not going to set them on fire inside my house. And I will for sure close the chimney flue.
Because, no matter how far away he is, he realizes the importance of preparing for the zombie apocalypse. I've taught him well. I may or may not be a little miffed though that he's managed to text a pretty girl the whole time, but not his mama. Rude. They leave the Jamboree Wednesday morning and head for DC. Look out Washington, hear comes Sean.
So lately I've been doing something that I thought I would never in a million years do. Forgetting to eat. For real. I seriously never thought I would forget food. But without Sean to remind me that it's time to cook, I've actually been skipping quite a few meals. I realize sometime in the afternoon (when I get dizzy) that I haven't eaten. I'm also eating less at meals. You'd think that would translate into losing weight wouldn't you? Um. No. The scale refuses to budge. Even when I call it nasty names. I'm also crankier. Seriously, Friday I had to go through a 4 1/2 hour virus removal with the company we get our computer security from. And I had to be here the whole time. I was so cranky that day I threatened to rip some one's arm off and beat them about the head with it. And yesterday? Well, I had to grocery shop. Alone. On a Saturday. I came to the conclusion that I do not really like the general public anymore. Although, I did let an elderly gentleman go in front of me in line because he'd already checked out once and forgot to get ice. I do that every. damn. time. So I let him ahead of me so his ice wouldn't melt. He called me a sweetie. I figured I needed the Karma points since I was going through the express lane with 24 items instead of 20. C'mon, those lines were long!! Anyway, I've concluded that the crankiness is a direct effect of low blood sugar so I'll probably try harder to remember to eat. Now I'm staying chubby to save lives. Is there no end to my generosity??
Happy Sunday,
♥Spot
Monday I had an MRI on the right knee because it does pretty much the same as the left and if I'm going to get one fixed I might as well try to hit the two for one deal, right? I mean walking is highly overrated, right? Seriously, you save money if you combine surgeries because they only charge you once for the operating room, anesthesia, ect. A surgeon taught me this several years ago. And besides the monetary savings, I only have to freak out once this way. And if you've been here since the beginning you know how bad being put under freaks me out. After the MRI, we headed to Springfield, met my folks at Texas Roadhouse (thanks for dinner Mom & Dad!!). It was super yummy and we had a great time. Then we picked up CJ from his house and headed home. Unfortunately, due to a communication snafu between his school and his home they had already given him his night meds. Which means when we got home at eleven, he was wide awake. He didn't fall asleep til 2:30 am. Which means I didn't get to sleep til then. And while he woke up bright and chipper at 8:30, my butt was dragging.
In spite of that we had a great day. We swam in the lake. CJ does a vicious dog-paddle which he learned at the age of two and still continues to manage to propel himself through the water with. We took golf cart rides through camp (his favorite) and then made a trip to town to run a few errands and pick up pizza. And CJ got his haircut at the salon. This is monumental. He hates haircuts and starts freaking the minute you turn on the clippers. But if we don't cut his hair he grows this wild Harpo Marx 'do. The girl was amazing. She spoke softly and reassuringly, let him hold her hand and warned him before she did anything like "I'm going to turn the chair just a bit now". And it worked. Which was a huge relief.
Wednesday Mike & I had to run to town in the morning for an appointment, so Luke accompanied CJ down into camp to hang out with Lu and her campers. I think this was an eye opening experience for Luke who has not spent alot of time around people with disabilities but he did well. After Mike & I returned we swam again and took more rides.
And Thursday CJ accompanied Mike and Luke to camp while they ran the zip line and I took Lu to the doctor. Mike tried to get CJ to ride the zip line. No go. I warned him. That afternoon we took CJ back to his house and I cried. It's so hard to leave him when we've had a great visit. We've decided that when he turns 21 we will move him to a group home in the nearby town so that we can see him more frequently.
On to Lu's doctor visit. Her counts have dropped back down to 50,000. They have to be brought up for the surgery so we start IVIG treatments again on Monday. She was not happy, but she seems to be taking it in better stride. Mostly she hates missing work and spending hours at the hospital (um Me too!). They will spread it out over five days this time in hopes of lessening her side effects. Fingers crossed. The surgery is getting closer though and this last treatment should keep her boosted up enough for the surgery. They will take a blood test that morning to be sure and they will have blood and platelets standing by in the operating room should they need them. She will be in the hospital about 5-6 days. So you know where I will be as well. And then at home recuperating for several weeks. I guess the silver lining is that I will get to spend some quality time with my daughter before she heads out to start her life.
Wondering about Sean? Yeah, it's cool, I know you are. He called me Sunday from the hotel in Virginia. He enjoyed Gettysburg and took pictures for me. Then he called me again Friday night. He was pretty psyched about scuba diving. And he'd just attended a Jewish religious service. Apparently he was quite impressed because it was fun. They sang and danced.
Me: So are you going to become Jewish now?
Sean: No. Probably not. But if we have the chance to attend a service somewhere around where we live, I'm totally gonna take you. I think you'd like it. And I will never make fun of Jewish people again. I'm still wearing my yarmulke. And we're eating dinner with some Jewish boy scouts so I'm totally eating kosher.
Me: Let me know how that goes. What else did you do today?
Sean: I did some archery. I really suck at it. Then we did air rifles, tomahawk throwing and knife throwing. I'm pretty good at throwing tomahawks and knives.
Me: You get that from me. And that will come in pretty handy during the zombie apocalypse. I can back you up with the archery, I'm pretty good at it. Plus I throw darts like no body's business.
Sean: I think I'm just going to go with a flamethrower in the zombie apocalypse.
Me: Why? You know flames don't kill them and then they just end up setting things on fire.
Sean: I read that blog by the Bloggess too. I'm not going to set them on fire inside my house. And I will for sure close the chimney flue.
Because, no matter how far away he is, he realizes the importance of preparing for the zombie apocalypse. I've taught him well. I may or may not be a little miffed though that he's managed to text a pretty girl the whole time, but not his mama. Rude. They leave the Jamboree Wednesday morning and head for DC. Look out Washington, hear comes Sean.
So lately I've been doing something that I thought I would never in a million years do. Forgetting to eat. For real. I seriously never thought I would forget food. But without Sean to remind me that it's time to cook, I've actually been skipping quite a few meals. I realize sometime in the afternoon (when I get dizzy) that I haven't eaten. I'm also eating less at meals. You'd think that would translate into losing weight wouldn't you? Um. No. The scale refuses to budge. Even when I call it nasty names. I'm also crankier. Seriously, Friday I had to go through a 4 1/2 hour virus removal with the company we get our computer security from. And I had to be here the whole time. I was so cranky that day I threatened to rip some one's arm off and beat them about the head with it. And yesterday? Well, I had to grocery shop. Alone. On a Saturday. I came to the conclusion that I do not really like the general public anymore. Although, I did let an elderly gentleman go in front of me in line because he'd already checked out once and forgot to get ice. I do that every. damn. time. So I let him ahead of me so his ice wouldn't melt. He called me a sweetie. I figured I needed the Karma points since I was going through the express lane with 24 items instead of 20. C'mon, those lines were long!! Anyway, I've concluded that the crankiness is a direct effect of low blood sugar so I'll probably try harder to remember to eat. Now I'm staying chubby to save lives. Is there no end to my generosity??
Happy Sunday,
♥Spot
Friday, July 16, 2010
The one where my cold returns and so will the children
So I thought my cold was better. In fact, I felt pretty much fine yesterday. And then I got up this morning and it was back. With a vengeance. But I got up anyway and stumbled to my computer, mumbling "tea" as I passed Mike in the hall. We've been together so long that he understands that this is in actuality a request for him to please please pretty please make me a cup of tea and bring it to me in order that I might function properly. And he did. I could get seriously addicted to him being home more often. So I consumed my delicious cup of tea, wrote an article about the whole Mel Gibson fiasco, answered emails, played a few minutes of bejeweled. Then I started to stumble out of my office so I could straighten the kitchen, take something out for dinner, make the bed and take a shower. I was mumbling under my breath as I opened my door and nearly ran into Mike, who happened to be opening the door from the other side.
Mike: What did you say?
Me: I feel like crap.
Mike: You sound like crap. Your voice is all raspy and you sound stuffy.
Me: Huh.
Mike: Also your eyes are puffy and you have huge black circles. You look like you feel like crap.
Me: You do realize that you're not helping, right?
Don't you hate that when you feel awful and you tell someone and they agree that you look awful too? Is that supposed to make you feel better? But I haven't decided yet whether that upsets me more or when the person says "you don't look sick". I guess in one instance they're validating your sickness and in the other they're questioning it. I'm sick, OK? I don't need to know what you think. End of discussion.
Took Lu for her appointment yesterday. She got a pneumonia vaccine, which was required before her surgery. Mike got one in the hospital and Sean has had them before. I knew they hurt and swell up like baseball size lumps. I chose not to share that information with her prior to. Lu hates shots. This one was no exception. Then she had a blood draw and finally we saw the NP for her doctor. Platelets are up to 225,000. That puts her firmly in the normal range. Yay! So we don't have to go back for two weeks. I'm trying to be positive about this but we had the same result with the steroids last month only to have them drop by over half in a week. So I guess I'm cautiously optimistic. I'll keep a close eye on her.
Mike continues to do well. He tries to do a little more every day. He's anxious to go back to the doctor and get the results of his blood work and hopefully get released to go back to work. I will miss him. Having him home has been great. Not the way I would have preferred to do it, but still very nice.
The kids get back from camp tonight so I'm sure much hilarity will need to be posted tomorrow or Sunday. They will bring with them a mountain of dirty laundry, a bazillion stories to tell, and a whole heck of a lot of noise. Yeah, I'm totally looking forward to it. Besides, I want to find out what's up with Sean and his ex gf. I've heard rumors...
Have a great weekend everyone,
♥Spot
Mike: What did you say?
Me: I feel like crap.
Mike: You sound like crap. Your voice is all raspy and you sound stuffy.
Me: Huh.
Mike: Also your eyes are puffy and you have huge black circles. You look like you feel like crap.
Me: You do realize that you're not helping, right?
Don't you hate that when you feel awful and you tell someone and they agree that you look awful too? Is that supposed to make you feel better? But I haven't decided yet whether that upsets me more or when the person says "you don't look sick". I guess in one instance they're validating your sickness and in the other they're questioning it. I'm sick, OK? I don't need to know what you think. End of discussion.
Took Lu for her appointment yesterday. She got a pneumonia vaccine, which was required before her surgery. Mike got one in the hospital and Sean has had them before. I knew they hurt and swell up like baseball size lumps. I chose not to share that information with her prior to. Lu hates shots. This one was no exception. Then she had a blood draw and finally we saw the NP for her doctor. Platelets are up to 225,000. That puts her firmly in the normal range. Yay! So we don't have to go back for two weeks. I'm trying to be positive about this but we had the same result with the steroids last month only to have them drop by over half in a week. So I guess I'm cautiously optimistic. I'll keep a close eye on her.
Mike continues to do well. He tries to do a little more every day. He's anxious to go back to the doctor and get the results of his blood work and hopefully get released to go back to work. I will miss him. Having him home has been great. Not the way I would have preferred to do it, but still very nice.
The kids get back from camp tonight so I'm sure much hilarity will need to be posted tomorrow or Sunday. They will bring with them a mountain of dirty laundry, a bazillion stories to tell, and a whole heck of a lot of noise. Yeah, I'm totally looking forward to it. Besides, I want to find out what's up with Sean and his ex gf. I've heard rumors...
Have a great weekend everyone,
♥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
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