ok, looks like I don't get to relax and sleep so I will post one of the stories I wanted to share...a couple of posts back I mentioned about how Andrew injured his "good" knee and ended up on crutches before I went in for surgery...
Now a funny story...we arrived at the hospital to check me in for surgery. I am dressed in my starry PJ pants, a tee shirt and my striped slippers because my other ones from Amanda :) were already packed in the van when they called to tell me to be at the hospital within two hours....
so being the people we are, my hubby's hobbling along on his crutches, I have my laptop strung around my chest/shoulder and he's carrying my backpack. We sit at the registration desk and immediately, they assume HE is the patient....
The volunteer at the registration desk runs off and gets a wheelchair...for HIM!? Haha!! We finish the registration process and are whisked away to the pre-op waiting area...My hubby being escorted in a wheelchair and me walking along side him :))
The volunteer gets Andrew out of the wheelchair and into a waiting area chair just as they call my name...to make it "look good" they put me in the wheelchair to transfer me to the post operative area (around a corner and through a door). Andrew had to stay in the waiting area until I was closer to prep....I felt foolish being in the wheelchair..so as soon as he stopped I hopped up like I was on fire...For some reason the nurse there thought I might be a 'feisty' one?! LOL
The rest of my hospital stay we teased my sweet dear in pain husband...nicknaming him "hop-a-long hubby"...Had to have fun with it ya know? When it came time to leave the hospital I tried to get him into a wheelchair while I walked but we decided to use the wheelchair to carry the bags and let the nurse push that...while we hopped along together into the sunset....
Monday, November 30, 2009
Good News on Zacky!
Well he doesn't have croup! Andrew took him to the doctor (and took Tyler too for good measure)...The doctor said they are both fine, no croup, no h1n1, nothing like that...and that if Zacky's cough is not better by Wednesday to come in again. She said we are doing a fine job trying to treat it ... using lemon tea with honey, nebulizer treatments and vicks vapor rub with a humidifier in their room. She said to keep up the good work and hopefully we won't have to see her on Wednesday. No meds either!! WHOOT!!
Apologies and Admissions
First I want to apologize for not keeping this updated...you'll understand why in just a little bit if I can get through this blog post.
ok, that being out of the way, my admission of the day is: I have totally completely overdone it and I am scared to death I am going to head back to the hospital if I continue...there I said it...you know it takes a lot to admit to that?
BUT Let me explain WHY...Harley had a rough time (can't remember if I blogged about it already, if not, I'll blog about it someday) in my absence...he is home sick from school and therapy today because he had diarrhea...I think it's an irritable bowel issue since there are no other symptoms.
Zac must've caught a cold or something while I was in the hospital. Andrew has him at the doctor now having him evaluated to see if he has croup (sounds like croup, but only by what other people are telling me since out of five children, I've never had one with croup!)
For those who aren't aware that my husband is disabled, here ya go...not a major disability but...14 years ago he had an on the job injury that turned him from an electrician to a stay at home dad. Three years ago he gave me the honor of becoming a stay/work at home mom and he became a certified nursing assistant. The On the job injury caused him to lose the use of his left leg from the knee down but because of his age, they would not do a knee replacement (he is too young we are told!)...Well just a couple of days before MY surgery...not exactly sure what happened...maybe he slipped on a little patch of ice or something but it seems he tore the medial menicus in the RIGHT knee now. He already wears a permanent brace on his left leg to walk and now he is on crutches...hard to let him take care of me when he is in pain and needing medical attention himself. And then add sick kids into the mix? Oy Vey!
Now for something I am proud to say I am a part of that has been taking a lot of my computer time (hence the lack of updates here!) is the Santa Swap Yahoo Group. Lindsay (love you girlie!) called me with this idea one day...we began this yahoo group and it is just amazing what the community is doing for each other. It is so touching and I am so blessed to be part of the movement. The program brings together those in need and those who wish to give...you have a toy your 2 yr old got for Christmas last year that he has since outgrown but barely used? It's still in gift giving condition? Please consider giving it to a family in need this year. Swap with them or just flat out gift it to them. Do you need a food basket for the holidays? Just arrange pick up or drop off and swap stuff...so many families hurting during this economic crisis and we want to make sure every child has at least one gift under the tree this year....Lindsay did her smooth talking and got the local elementary school to support it by letting us use a tax id number to ask for donations from community sponsors. Today we formulated the letter and delivered it to some of the stores in the community. It's a shame...even Toys for Tots are hurting so badly this year for donations they are not even serving the Denver Metro area....
Ok, company stopped by...I'll try to be back later...If you want more info on the Santa Swap group and how to start one in your community, please email me.
ok, that being out of the way, my admission of the day is: I have totally completely overdone it and I am scared to death I am going to head back to the hospital if I continue...there I said it...you know it takes a lot to admit to that?
BUT Let me explain WHY...Harley had a rough time (can't remember if I blogged about it already, if not, I'll blog about it someday) in my absence...he is home sick from school and therapy today because he had diarrhea...I think it's an irritable bowel issue since there are no other symptoms.
Zac must've caught a cold or something while I was in the hospital. Andrew has him at the doctor now having him evaluated to see if he has croup (sounds like croup, but only by what other people are telling me since out of five children, I've never had one with croup!)
For those who aren't aware that my husband is disabled, here ya go...not a major disability but...14 years ago he had an on the job injury that turned him from an electrician to a stay at home dad. Three years ago he gave me the honor of becoming a stay/work at home mom and he became a certified nursing assistant. The On the job injury caused him to lose the use of his left leg from the knee down but because of his age, they would not do a knee replacement (he is too young we are told!)...Well just a couple of days before MY surgery...not exactly sure what happened...maybe he slipped on a little patch of ice or something but it seems he tore the medial menicus in the RIGHT knee now. He already wears a permanent brace on his left leg to walk and now he is on crutches...hard to let him take care of me when he is in pain and needing medical attention himself. And then add sick kids into the mix? Oy Vey!
Now for something I am proud to say I am a part of that has been taking a lot of my computer time (hence the lack of updates here!) is the Santa Swap Yahoo Group. Lindsay (love you girlie!) called me with this idea one day...we began this yahoo group and it is just amazing what the community is doing for each other. It is so touching and I am so blessed to be part of the movement. The program brings together those in need and those who wish to give...you have a toy your 2 yr old got for Christmas last year that he has since outgrown but barely used? It's still in gift giving condition? Please consider giving it to a family in need this year. Swap with them or just flat out gift it to them. Do you need a food basket for the holidays? Just arrange pick up or drop off and swap stuff...so many families hurting during this economic crisis and we want to make sure every child has at least one gift under the tree this year....Lindsay did her smooth talking and got the local elementary school to support it by letting us use a tax id number to ask for donations from community sponsors. Today we formulated the letter and delivered it to some of the stores in the community. It's a shame...even Toys for Tots are hurting so badly this year for donations they are not even serving the Denver Metro area....
Ok, company stopped by...I'll try to be back later...If you want more info on the Santa Swap group and how to start one in your community, please email me.
Friday, November 27, 2009
A quick update ( a partial copy & Paste,sorry)
I am doing well...easily exhausted...headaches hit frequently and I can't breathe through my nose...but hey, I got a bonus tummy tuck LOL...and it's official--I GET TO GO HOME TOMORROW!! IV's are out, no more catheter!!
I can't wait to see my babies...and see my sweet hubby...and hopefully even get to meet some of the wonderful people my family has had the honor to meet over the last week....Melody, Starr and family, Amy and all the other people I am forgetting to mention!
Please email me back with your snail mail addys if you didn't leave it at home for me...I'd like to get a personalized handwritten thank you letter to you all! Lindsay, Patti and Tricia,THIS INCLUDES YOU! LOL
I can't wait to see my babies...and see my sweet hubby...and hopefully even get to meet some of the wonderful people my family has had the honor to meet over the last week....Melody, Starr and family, Amy and all the other people I am forgetting to mention!
Please email me back with your snail mail addys if you didn't leave it at home for me...I'd like to get a personalized handwritten thank you letter to you all! Lindsay, Patti and Tricia,THIS INCLUDES YOU! LOL
"Just One More Day?"
I am so sick of hearing that...as i'm sure you guessed, I don't get to go home today...I'm just crushed...and it's out of my control. DH won't bring the little ones to see me, Harley had a major meltdown when he came to visit yesterday...Dh goes back to work today and tomorrow's a "hell" schedule for him...All I can do is sit alone in this room and watch TV...
I just wanna go home...I miss my family...
I just wanna go home...I miss my family...
Thursday, November 26, 2009
Please bear with me and my typos
As you can imagine, I have so many updates to make on both blogs. I do not have much endurance and my memory may be lagging in some areas since I am only able to report what has been reported to me. I may just copy & paste, I hope y'all understand...I know some people only read here and some people only read there...
So I guess i will start with my daughter's little shenanigan's...i know she was trying to be helpful though...yes my 16 yr old with just a driver's permit - not an official license -- decided not to wake up dad to get the babysitter...just took the keys to the NEW van and took off down the highway (she's also never driven on the highway). She got herself lost so she pulled over and called Andrew..tellng him she was on the highway and couldn't find the exit. This is how he found out she was not home...at this point it is illegal for her to be driving without a licensed adult in the vehicle. andrew directed her to someone's house that was closeby to where she was and was advised to bring kelly home. This person decided to go ahead and pick up the babysitter...and have Kelly drive herself home in the new van. She managed to do just fine...and we are lucky she didn't get caught...and we know she was just trying to be helpful...
She and Robert got to come and visit me yesterday afternoon. This afternoon both of them and Harley got to come visit. The hospital is not allowing any visitors under the age of 18 past the lobby because of H1N1.
I finally got moved out of ICU today...I made the mistake of bending over to retreive something last night...forgetting that I am not supposed to be bending over..and gave myself a bloody nose...tell ya I've never been so freaked out to get a bloody nose in my life!
i got more things to say and update, but I am already worn out and seeing blurry-eeeyy so I'll have to come back...
So I guess i will start with my daughter's little shenanigan's...i know she was trying to be helpful though...yes my 16 yr old with just a driver's permit - not an official license -- decided not to wake up dad to get the babysitter...just took the keys to the NEW van and took off down the highway (she's also never driven on the highway). She got herself lost so she pulled over and called Andrew..tellng him she was on the highway and couldn't find the exit. This is how he found out she was not home...at this point it is illegal for her to be driving without a licensed adult in the vehicle. andrew directed her to someone's house that was closeby to where she was and was advised to bring kelly home. This person decided to go ahead and pick up the babysitter...and have Kelly drive herself home in the new van. She managed to do just fine...and we are lucky she didn't get caught...and we know she was just trying to be helpful...
She and Robert got to come and visit me yesterday afternoon. This afternoon both of them and Harley got to come visit. The hospital is not allowing any visitors under the age of 18 past the lobby because of H1N1.
I finally got moved out of ICU today...I made the mistake of bending over to retreive something last night...forgetting that I am not supposed to be bending over..and gave myself a bloody nose...tell ya I've never been so freaked out to get a bloody nose in my life!
i got more things to say and update, but I am already worn out and seeing blurry-eeeyy so I'll have to come back...
Not going to be home for Thanksgiving...
But they are transferring me out of ICU. I'll try to update more later.
Wednesday, November 25, 2009
Today's Update--so far
Got word this morning that I will be in ICU for another night (tonight)...which means I will not be home tomorrow because I have to spend at least 24 hours in a step-down ward before being released to home. At this point, it is day by day as my diabetes insipidus acts up at night.
I was able to talk the dr/nurses into letting me see my kids today thou. Because of h1n1 no one unde 18 is allowed into the hospital. They will take me outside to see the kids.
I called Andrew to get a time from him and found out that kelly- my 16 yr old with just a driver's permit - not an official license -- decided not to wake up dad to get the babysitter...just took the keys to the NEW van and took off down the highway (she's also never driven on the highway). She got herself lost so she pulled over and called Andrew..tellng him she was on the highway and couldn't find the exit. This is how he found out she was not home...at this point it is illegal for her to be driving without a licensed adult in the vehicle. andrew directed her to someone's house that was closeby to where she was and was advised to bring kelly home. This person decided to go ahead and pick up the babysitter...and have Kelly drive herself home in the new van.
*sigh* once this all gets straightened out they will figure a time they can come and visit with me. Harley will be in therapy and would try to pull my IV out so we won't be able to let him visit...Andrew's afraid the younger ones will have a tough time seeing me and not taking me home...at the very least though I can see my older kids.
So that's really my only update so far today...
(sorry for the C&P LF Mommas).
I was able to talk the dr/nurses into letting me see my kids today thou. Because of h1n1 no one unde 18 is allowed into the hospital. They will take me outside to see the kids.
I called Andrew to get a time from him and found out that kelly- my 16 yr old with just a driver's permit - not an official license -- decided not to wake up dad to get the babysitter...just took the keys to the NEW van and took off down the highway (she's also never driven on the highway). She got herself lost so she pulled over and called Andrew..tellng him she was on the highway and couldn't find the exit. This is how he found out she was not home...at this point it is illegal for her to be driving without a licensed adult in the vehicle. andrew directed her to someone's house that was closeby to where she was and was advised to bring kelly home. This person decided to go ahead and pick up the babysitter...and have Kelly drive herself home in the new van.
*sigh* once this all gets straightened out they will figure a time they can come and visit with me. Harley will be in therapy and would try to pull my IV out so we won't be able to let him visit...Andrew's afraid the younger ones will have a tough time seeing me and not taking me home...at the very least though I can see my older kids.
So that's really my only update so far today...
(sorry for the C&P LF Mommas).
Tuesday, November 24, 2009
Update from the hospital
Surgery went well. The doctor confirmed it was a benign tumor and *thinks* he got it all. I have only seen him once since waking up from surgery. They ended up cutting both nostrils andnot going through the roof of my mouth so i am already stuffing my face with yummy solid foods. I am only needing pain meds every 4 hours or so and the nurses think that is great! Epecially since I am taking only 1 percocet and not 2.
I have been having a couple of issues that will be keeping me i ICU for an extra night. Originally I had no urine output. They finally allowed me out of bed to walk to a recliner in my room...NOW I cannot stop peeing and am severely dehydrated (officially called diabetes insipidus)--thank goodness for catheters...since I cannot yet walk as far as the bathroom.
I am also having to stay on oxygen as i cannot keep my oxygen levels high enough. My nasal passages are so congested (I do not have any packing in there) and I cannot blow my nose for 4 weeks yet. Waiting to see if I an take a decongestant so i can at least have a runny nose! (never thought I would wish for that).
Seems I can't stay awake very long right now either. Originally I was told I was doing so well, I might get to go home tomorrow..now I *might* be able to come home ON thanksgiving day.
So that's really all the updates i have..sorry if I rambled:)
I have been having a couple of issues that will be keeping me i ICU for an extra night. Originally I had no urine output. They finally allowed me out of bed to walk to a recliner in my room...NOW I cannot stop peeing and am severely dehydrated (officially called diabetes insipidus)--thank goodness for catheters...since I cannot yet walk as far as the bathroom.
I am also having to stay on oxygen as i cannot keep my oxygen levels high enough. My nasal passages are so congested (I do not have any packing in there) and I cannot blow my nose for 4 weeks yet. Waiting to see if I an take a decongestant so i can at least have a runny nose! (never thought I would wish for that).
Seems I can't stay awake very long right now either. Originally I was told I was doing so well, I might get to go home tomorrow..now I *might* be able to come home ON thanksgiving day.
So that's really all the updates i have..sorry if I rambled:)
Update of Mom :D
This is Kelly the DD.
She wrote this on facebook and asked me to put it up here
EDIT TO ADD: November 23, 2010 - a year later
Andrew admits now that he didn't bring the camera for good reason. I am now told that I looked like I had been shot...there was blood all over my hair, my pillow looked like the back of my head had been blown off (his words, not mine)...They explained it was because they didn't want to reposition my head and for 2 days I remained on this bloody pillow...A year later I am learning this...
She wrote this on facebook and asked me to put it up here
Hey All...sitting in ICU with Andrew. Dr "thinks" he got it all and that surgery went well. Output problems and magenisium is low so I will probably have to say in ICU another night. Andrew forgot the camera or I'd post pics...really not bad. They went thru my nose and not the roof of my mouth. Sleepy...More updates later
EDIT TO ADD: November 23, 2010 - a year later
Andrew admits now that he didn't bring the camera for good reason. I am now told that I looked like I had been shot...there was blood all over my hair, my pillow looked like the back of my head had been blown off (his words, not mine)...They explained it was because they didn't want to reposition my head and for 2 days I remained on this bloody pillow...A year later I am learning this...
Monday, November 23, 2009
Still no idea on what time
I just called surgery scheduling and was told that they have no clue...that it will be up to the hospital to call me when 'they are ready'...Well I'm at the point that I don't trust the hospital or have faith in my doctor's office at all. I just get this feeling that they will continue to put me off until Tuesday arrives, wednesday...then of course it will be a holiday so maybe next month? maybe next year?
The stress of sitting here waiting not even allowed to have a cup of coffee or a sip of water is going to make me sick and then it will be my fault that surgery won't happen...right?
Sorry I am just super frustrted with this whole situation...and then Andrew not being able to walk just makes my stress even higher...i give up!
The stress of sitting here waiting not even allowed to have a cup of coffee or a sip of water is going to make me sick and then it will be my fault that surgery won't happen...right?
Sorry I am just super frustrted with this whole situation...and then Andrew not being able to walk just makes my stress even higher...i give up!
things just get so crazy
So I thought I would try to get a couple of days of updates done here.
On Thursday Andrew and I went to our very first childless date night...Thanks to the kindness of a lady named Nikki from Wish Upon A Hero -she had sent us a gift card for $25. I could not read the menu, the lighting was awful and the paper was shiny and the print small. Andrew mentioned that I would be having surgery on Friday and they asked if it was Lasik...so we told them...
At the end of our meal, our server came over with the bill...with a balance of $0.00...The server had told the manager that I was having surgery the next morning and the manager comp'd our meal. Her name is Amy...So if you are interested in going out to dinner..stop on by the Chili's at Cross and Wadsworth.
A big thank you to tricia and her kids for watching our kids on last minute notice so that we could go on our date...
I wanted to get more updates done tonight, but my eyes are not cooperating so I will try to be back tmorrow to make more updates.
I will make a quick post here when/if I get word of what time my surgery will be.
On Thursday Andrew and I went to our very first childless date night...Thanks to the kindness of a lady named Nikki from Wish Upon A Hero -she had sent us a gift card for $25. I could not read the menu, the lighting was awful and the paper was shiny and the print small. Andrew mentioned that I would be having surgery on Friday and they asked if it was Lasik...so we told them...
At the end of our meal, our server came over with the bill...with a balance of $0.00...The server had told the manager that I was having surgery the next morning and the manager comp'd our meal. Her name is Amy...So if you are interested in going out to dinner..stop on by the Chili's at Cross and Wadsworth.
A big thank you to tricia and her kids for watching our kids on last minute notice so that we could go on our date...
I wanted to get more updates done tonight, but my eyes are not cooperating so I will try to be back tmorrow to make more updates.
I will make a quick post here when/if I get word of what time my surgery will be.
Friday, November 20, 2009
Thanks Sue F.
Sorry I didn't get any pictures this time...I HAVE to get this recipe though! Sue brought over a wonderful delicious chicken dish...drumsticks that she removed the skin and then grilled...then cooked them (in the oven?) til tender and falling off the bone. Drizzled some BBQ Sauce on them...oh my they were delicious!! Robert ate FOUR!!
Also included were some mashed potatoes and carrot/green beans that tasted like buttery garlic.
Thanks Sue!! I will have to get a hold of you for that recipe for sure! (Sure wish I had taken some pics of my littles with their happy little faces!)
Also included were some mashed potatoes and carrot/green beans that tasted like buttery garlic.
Thanks Sue!! I will have to get a hold of you for that recipe for sure! (Sure wish I had taken some pics of my littles with their happy little faces!)
Update on surgery scheduling
I guess because of the stress this morning I developed a migraine...I took a nap and woke up about 1:30. The surgery scheduling department still hadn't called me. I called surgery scheduling and the neurosurgeon's office to find out the status of when surgery on Monday would be so that I could schedule child care. No one at surgery scheduling even KNEW that my surgery was cancelled this afternoon. Grh! I called the neurosurgeon's office back and reamed them a new a$$ telling them that I have a special needs child that requires quite a bit of coordination to schedule care and I need to know NOW! As rude as this woman at the office was...someone will be losing her job in time for Christmas if I have my way. (OK, I didn't report her...yet...but she was rude telling me that it wasn't my business to get them moving on this...that my job is to stay healthy and calm down and let them do their job).
I did finally get a call from surgery scheduling this evening just before 5pm (when they close). I am on "standby" for Monday. They are not sure what time I will be scheduled but may know over the weekend, but they have assured me that Monday it will happen. The lady I spoke to at surgery scheduling was very nice and understanding and said the OR may call me over the weekend and if they don't she will call me first thing when she arrives on Monday morning to let me know if they have a definite time. I just have to be ready to go anytime from 6am to midnight to be there within an hour's notice (I live 30 mins from the hospital as long as it's not snowing!). However, even if it's scheduled for midnight on Monday (Tuesday?) I have to be ready with an empty stomach on a moment's notice...that means no food or drink after midnight on Monday (Sunday?)...LOL
I am not necessarily happy with it, but it's a better answer than I've had all day. Andrew is a little worried that they will rush through the surgery though and chance making a mistake (a knick in the wrong place could cause me to lose my vision, or even my life since it's touching the stem of my pituitary gland and near the cartoid artery). I am in touch with some people who are just planning to come over at 6am on Monday and plan to stay through Tuesday or when they hear from Andrew.
This means only two respite days for Harley are being wasted, but I really have no choice if I want it done by Christmas. Andrew was able to call his job and explain what was going on so they put him back on the schedule for this weekend and then extended his time off through Friday (to return to work on Saturday)--where before he was scheduled to return on Thanksgiving day. Hopefully I will be released on Friday because if they wait til Saturday it will have to happen on OUR schedule instead of theirs...
it's been a very long emotional day. Thankfully we had/have some people "on call" that are willing to run errands, do transportation, childcare for the younger children whenever needed. The people who were / are bringing meals were very understanding and one even brought over a cooked meal tonight so I wouldn't have to cook.
Now my sweet dear husband is telling me that it is good because we now have time to clean the carpets...so guess what I will be doing tomorrow afternoon? or maybe tonight if I can't sleep...
Thanks for checking in...Hopefully I'm not boring you all to death with my long, whiny posts!
I did finally get a call from surgery scheduling this evening just before 5pm (when they close). I am on "standby" for Monday. They are not sure what time I will be scheduled but may know over the weekend, but they have assured me that Monday it will happen. The lady I spoke to at surgery scheduling was very nice and understanding and said the OR may call me over the weekend and if they don't she will call me first thing when she arrives on Monday morning to let me know if they have a definite time. I just have to be ready to go anytime from 6am to midnight to be there within an hour's notice (I live 30 mins from the hospital as long as it's not snowing!). However, even if it's scheduled for midnight on Monday (Tuesday?) I have to be ready with an empty stomach on a moment's notice...that means no food or drink after midnight on Monday (Sunday?)...LOL
I am not necessarily happy with it, but it's a better answer than I've had all day. Andrew is a little worried that they will rush through the surgery though and chance making a mistake (a knick in the wrong place could cause me to lose my vision, or even my life since it's touching the stem of my pituitary gland and near the cartoid artery). I am in touch with some people who are just planning to come over at 6am on Monday and plan to stay through Tuesday or when they hear from Andrew.
This means only two respite days for Harley are being wasted, but I really have no choice if I want it done by Christmas. Andrew was able to call his job and explain what was going on so they put him back on the schedule for this weekend and then extended his time off through Friday (to return to work on Saturday)--where before he was scheduled to return on Thanksgiving day. Hopefully I will be released on Friday because if they wait til Saturday it will have to happen on OUR schedule instead of theirs...
it's been a very long emotional day. Thankfully we had/have some people "on call" that are willing to run errands, do transportation, childcare for the younger children whenever needed. The people who were / are bringing meals were very understanding and one even brought over a cooked meal tonight so I wouldn't have to cook.
Now my sweet dear husband is telling me that it is good because we now have time to clean the carpets...so guess what I will be doing tomorrow afternoon? or maybe tonight if I can't sleep...
Thanks for checking in...Hopefully I'm not boring you all to death with my long, whiny posts!
Doctor Postponed SURGERY!!! Til Monday
and I am LIVID!! Does he not understand all the work and coordination that has gone into this? Does he not understand that I won't have respite for Harley? There's no way I will be able to get that rescheduled with such short notice...The kids will be home from school, so Tyler and Harley will get to see me leave for the hospital...Do they understand that all these wonderful people that have offered to help me now have to be contacted? Do they not understand I get to write a new letter to the judge about the mediation? And that my surgery has been rescheduled? Do they not understand I have FIVE children...and my husband has already scheduled his time off of work? Do they not understand this means I will be missing Thanksgiving with my family altogether? Especially since they won't allow anyone under 18 into the hospital, I won't even get to see my children on Thanksgiving.
I told them to find another doctor who could do the surgery today on schedule and they said they could not...there are no other doctors available. I said ok, tomorrow which of course they said no...Neuro docs don't work weekends...ok...so WHEN? First they told me two weeks...and I told them NO, that is NOT acceptable...so my surgeon called and said he is rearranging his calendar and guaranteed it will happen on Monday. He doesn't have a definite time yet, but the office will call me by the close of business today.
I just can't believe this has happened...This is the THIRD time I've been bumped otherwise my surgery would've happened on Halloween as originally planned...the only difference is it wasn't actually scheduled and then cancelled TWO HOURS before I was supposed to check in...
Yes, I am livid...I am trying to contact the people who have offered help and meals over the weekend and see if they want to reschedule...Lindsay will also be calling some of them so that will help some.
I told them to find another doctor who could do the surgery today on schedule and they said they could not...there are no other doctors available. I said ok, tomorrow which of course they said no...Neuro docs don't work weekends...ok...so WHEN? First they told me two weeks...and I told them NO, that is NOT acceptable...so my surgeon called and said he is rearranging his calendar and guaranteed it will happen on Monday. He doesn't have a definite time yet, but the office will call me by the close of business today.
I just can't believe this has happened...This is the THIRD time I've been bumped otherwise my surgery would've happened on Halloween as originally planned...the only difference is it wasn't actually scheduled and then cancelled TWO HOURS before I was supposed to check in...
Yes, I am livid...I am trying to contact the people who have offered help and meals over the weekend and see if they want to reschedule...Lindsay will also be calling some of them so that will help some.
I feel awful
I gave my older kids (Robert & Kelly) the option of staying home today. I know it's going to be rough on them...They decided to go to school anyways thinking it would keep their minds off of things...BUT
They have both called and texted me since going to school that they cannot concentrate. They want to be near their friends and have support from friends, but can't concentrate well enough to go to classes....
I understand completely where they are coming from. I think I will excuse them from their classes today...even though they are both at school. Guess I should call the counselors?
They have both called and texted me since going to school that they cannot concentrate. They want to be near their friends and have support from friends, but can't concentrate well enough to go to classes....
I understand completely where they are coming from. I think I will excuse them from their classes today...even though they are both at school. Guess I should call the counselors?
We leave in FIVE hours
for hospital check in. I'm not sure if my husband is allowed visitors in the surgery waiting room while I am in surgery...but if you want to stop by we'll be at Saint Joseph's. I'm not sure how often they will update him but I know they want him to stay in the general area of the waiting room.
And yes, it's only 4:50 AM, been up since 3:15 -- just not able to sleep...can't imagine why?!
I'm going to post a test from my cell phone to see if I can post from there...Lindsay will try to keep in contact with Andrew and post updates on my wall at Facebook as the day goes on.
Wish me luck! And pray the surgeon has steady hands!
And yes, it's only 4:50 AM, been up since 3:15 -- just not able to sleep...can't imagine why?!
I'm going to post a test from my cell phone to see if I can post from there...Lindsay will try to keep in contact with Andrew and post updates on my wall at Facebook as the day goes on.
Wish me luck! And pray the surgeon has steady hands!
Thursday, November 19, 2009
Update
Harley's fever broke with no meds by 9:30 yesterday morning. Today is a crazy day trying to get everything ready for the family to be mommy-less for the next five to six days.
I am trying to stay in and have Andrew run all my errands today...can't take any chances of getting exposed to ANYTHING before tomorrow....
Started to hyperventilate last night when explaining to Kelly that they would be putting a tube down my throat so I can breathe...then Andrew's client felt the need to go down the list of everything that can go wrong with this type of surgery....
UGH! Now Andrew's nervous as all get out too...poor guy!
I feel on the verge of tears...Not quite sure why? Maybe because of major surgery?
I will try to get Kelly to keep the blog updated, either this one or the Harleyism blog. I updated my cell service to allow for mobile web so I can check email and maybe facebook, but I'm really slow at it since I'm not very adept at texting...
Thank you everyone for your kindness and well wishes!
I am trying to stay in and have Andrew run all my errands today...can't take any chances of getting exposed to ANYTHING before tomorrow....
Started to hyperventilate last night when explaining to Kelly that they would be putting a tube down my throat so I can breathe...then Andrew's client felt the need to go down the list of everything that can go wrong with this type of surgery....
UGH! Now Andrew's nervous as all get out too...poor guy!
I feel on the verge of tears...Not quite sure why? Maybe because of major surgery?
I will try to get Kelly to keep the blog updated, either this one or the Harleyism blog. I updated my cell service to allow for mobile web so I can check email and maybe facebook, but I'm really slow at it since I'm not very adept at texting...
Thank you everyone for your kindness and well wishes!
Wednesday, November 18, 2009
No!! not NOW!!?!
Harley woke up with a fever of 100.4 today. He won't be going to school but at the same time I can't have him anywhere near me! I can't take any chances of getting sick and having a fever on Friday morning! UGH! Why now?!
I have face masks and anytime he comes into the room with me, I put one on...We've disinfected the house the best we could this morning before Andrew left for work. If I have to go into his room, I put on a face mask too...I hooked up a converter box in his room so he has PBS kids and Qubo..he has a DVD player and a VCR...the only thing missing is the Wii...Which I really don't want to put into his room....we're having to let him break all the rules and have food and drink in his room....just can't take ANY chances!! Anytime he comes out of his room we disinfect the door knobs and the bathroom. We're even letting him wear a depends during the day today...
Oh please let his fever break...
I have face masks and anytime he comes into the room with me, I put one on...We've disinfected the house the best we could this morning before Andrew left for work. If I have to go into his room, I put on a face mask too...I hooked up a converter box in his room so he has PBS kids and Qubo..he has a DVD player and a VCR...the only thing missing is the Wii...Which I really don't want to put into his room....we're having to let him break all the rules and have food and drink in his room....just can't take ANY chances!! Anytime he comes out of his room we disinfect the door knobs and the bathroom. We're even letting him wear a depends during the day today...
Oh please let his fever break...
Monday, November 16, 2009
Thanks Amanda!
We only took pictures of the cute ones enjoying the wonderful meal you made for our family last night. You are an amazing cook!
Zachary really loved all of it, but he thought it was his job to pass out the rolls...and had to taste them first!!
Tyler
Zachary had seconds of the potatoes!
Tyler just had to show off too!
Zachary really loved all of it, but he thought it was his job to pass out the rolls...and had to taste them first!!
Tyler
Zachary had seconds of the potatoes!
Tyler just had to show off too!
Thursday, November 12, 2009
Time for Thanks
So many people to thank already....
Crystal: for being my rock and my sounding board through this whole ordeal...and before!! Thank you!
Lindsay: for getting people together to help me out with meals--and for connecting me with Freecycle all t hose years ago! You are so wonderful...always helping everyone...I am so honored to call you a friend.
Sam: for dropping off meals already...It's really helped the stress levels and now we even have a few meals stored in the freezer.
Marion (who won't be reading this because she's not on the internet): For staying with the boys so Andrew could attend medical appointments with me. For always being there "on call" when we can't get home in time for Harley's bus...For being the "friendly witch" for 12 years!!
Kelly & Robert: for helping with the littles over the past few weeks while Dad and I stress out over the things that need to be done!
Teresa (From Tyler's school): for making contacts and having someone donate free daycare for Zachary and Tyler for the week after surgery when the teens are back in school.
Anne: For calling me today and inviting me to a "girl time lunch"! I am so excited!
Ramee (Harley's RC): for jumping right in and getting Harley's respite increased so quickly..now if only we could find some providers!!
Gina and the staff at Creative Perspectives: For bending the rules and picking up Harley from home for therapies when he is out of school and I am at the hospital. For coming to Harley's BSP meetings...providing specialized support in writing Harley's BSP (Travis) and for Mike meeting with us as a family and confirming that we are really under much more stress than the typical family and that it's ok...For agreeing to meet with the "men" right after surgery!
Patti: for praying with me when I lost my baby in July...and for your reports from school when they were not communicating with me (via your daughter!)...for giving me your number for Andrew to have an ear to bend and a friend to pray with while I am in the hospital and recovering.
Jesse, Kim and Angela: for reconnecting with me...I really do miss family....
Christine S.: for bringing over quiche so I will have something soft to eat when I get home.
Sue F: for agreeing to bring a hot cooked meal for the kids while Andrew's at the hospital with me the day of surgery.
Amy: who has agreed to bring two meals over on Saturday the 20th. I hope I can meet you someday and give you thanks in person!
Dawn B: for agreeing to bring 3 meals to freeze for during recovery! That means a lot too...I am sure I will not feel like cooking (nor will I be able to!)
Connie: who has agreed to bring a meal over on Tuesday the 24th...I may even be home (wishful thinking...but still) to meet you!
Suzanne M: who is bringing Chicken noodle soup and sandwiches over the day I am released for the hospital! I cannot wait to try out that chicken soup...and it's even on my "soft foods diet"!!
Katrina For signing up to bring a meal over on the 28th--Hope I can meet you and we can exchange information so I can write you a thank you note!
Belinda: for bringing lunch over on Sunday the 29th and the 5th and 13th of December--maybe we can have some coffee and chat?!
Sandy R: for signing up to bring over dinner on the 30th and December 11th (Zachary's 2nd birthday!)...I hope to see you again...I know we've exchanged things a number of times, but have always been on the run!
Carlynne for bringing lunch and dinner on the 4th and the 9th--maybe we can spend some time together when you stop by?!
Nancy from Haven's Hope: for helping out financially to pay for the in-home care by Rees--and your prayers too of course!
I still have so many people to contact who responded to Lindsay's call for assistance. It is so touching to know there are so many people in the community willing to reach out and help a mom in need...I do "know" most of you from freecycle (at least I know we've exchanged items as I recognize your email addresses!)...and I hope that I can meet you all in person and thank you!
Crystal: for being my rock and my sounding board through this whole ordeal...and before!! Thank you!
Lindsay: for getting people together to help me out with meals--and for connecting me with Freecycle all t hose years ago! You are so wonderful...always helping everyone...I am so honored to call you a friend.
Sam: for dropping off meals already...It's really helped the stress levels and now we even have a few meals stored in the freezer.
Marion (who won't be reading this because she's not on the internet): For staying with the boys so Andrew could attend medical appointments with me. For always being there "on call" when we can't get home in time for Harley's bus...For being the "friendly witch" for 12 years!!
Kelly & Robert: for helping with the littles over the past few weeks while Dad and I stress out over the things that need to be done!
Teresa (From Tyler's school): for making contacts and having someone donate free daycare for Zachary and Tyler for the week after surgery when the teens are back in school.
Anne: For calling me today and inviting me to a "girl time lunch"! I am so excited!
Ramee (Harley's RC): for jumping right in and getting Harley's respite increased so quickly..now if only we could find some providers!!
Gina and the staff at Creative Perspectives: For bending the rules and picking up Harley from home for therapies when he is out of school and I am at the hospital. For coming to Harley's BSP meetings...providing specialized support in writing Harley's BSP (Travis) and for Mike meeting with us as a family and confirming that we are really under much more stress than the typical family and that it's ok...For agreeing to meet with the "men" right after surgery!
Patti: for praying with me when I lost my baby in July...and for your reports from school when they were not communicating with me (via your daughter!)...for giving me your number for Andrew to have an ear to bend and a friend to pray with while I am in the hospital and recovering.
Jesse, Kim and Angela: for reconnecting with me...I really do miss family....
Christine S.: for bringing over quiche so I will have something soft to eat when I get home.
Sue F: for agreeing to bring a hot cooked meal for the kids while Andrew's at the hospital with me the day of surgery.
Amy: who has agreed to bring two meals over on Saturday the 20th. I hope I can meet you someday and give you thanks in person!
Dawn B: for agreeing to bring 3 meals to freeze for during recovery! That means a lot too...I am sure I will not feel like cooking (nor will I be able to!)
Connie: who has agreed to bring a meal over on Tuesday the 24th...I may even be home (wishful thinking...but still) to meet you!
Suzanne M: who is bringing Chicken noodle soup and sandwiches over the day I am released for the hospital! I cannot wait to try out that chicken soup...and it's even on my "soft foods diet"!!
Katrina For signing up to bring a meal over on the 28th--Hope I can meet you and we can exchange information so I can write you a thank you note!
Belinda: for bringing lunch over on Sunday the 29th and the 5th and 13th of December--maybe we can have some coffee and chat?!
Sandy R: for signing up to bring over dinner on the 30th and December 11th (Zachary's 2nd birthday!)...I hope to see you again...I know we've exchanged things a number of times, but have always been on the run!
Carlynne for bringing lunch and dinner on the 4th and the 9th--maybe we can spend some time together when you stop by?!
Nancy from Haven's Hope: for helping out financially to pay for the in-home care by Rees--and your prayers too of course!
I still have so many people to contact who responded to Lindsay's call for assistance. It is so touching to know there are so many people in the community willing to reach out and help a mom in need...I do "know" most of you from freecycle (at least I know we've exchanged items as I recognize your email addresses!)...and I hope that I can meet you all in person and thank you!
Interesting Videos
These are videos I ran across on YouTube of Transsphenoidal Surgery (the type of surgery I am having done). Originally I was told that the surgeon would go through my nostril but at my pre-op appointment I was told that they feel the tumor is too large to pull through that way so they will be going through the roof of my mouth and into the sinus cavity.
Symptoms and Diagnosis Process
I went to the dr for dizziness 2 years ago, she looked in my ears and said I had a lot of wax and gave me a script. A year later I went in for my annual exam still complaining of dizziness, and again was given antibiotics.
The vision problems -- blurred vision, blacking out feeling, seeing spots, tunnel like vision have been happening on and off for years. I thought it was due to diet, dehydration, etc and adjusted my diet...still that didn't help.
I have always had tingling/numbness in my feet and attributed that to a car accident I was in where I injured my back and neck.
I started to get shakes and feel "drunk" while walking over this past summer...again I attributed it to the heat, dehyration (I am also not one to run to the dr for things until they are really bothersome).
I could not focus on written word and had been to the eye dr for my annual eye exam in July and was told my eyes were fine. I was told that maybe just a small adjustment but nothing really that would require glasses or affect my vision severely enough to get glasses for driving.
I attributed my problems to many things...then one day in July I went blind while driving. This was such a scary situation I called my dr right away. I blamed it on everything from exhaustion to diet to dehydration to heat, etc....
I had my husband go in with me for fear they would blow me off. I told them I had researched it on Dr. Google and had the EXACT symptoms of a pituitary tumor. Thankfully my dr is a good listener. I took a printout of the hormone tests that need to be run to rule out a hormone producing tumor and she had no qualms about ordering those blood tests. She also ran some other tests that weren't on that list to rule out things like Lupus, vitamin deficiencies and liver and kidney failure. She ordered an MRI to rule out MS and to see if there might have been a tumor.
She also referred me to the eye dr who did another exam to confirm it was nothing wrong with my eyes. He ordered a visual field test. At this point all of my bloodwork had come back as normal (except for high potassium) and my eyes checked out fine so I was in a severe depression thinking I had the same disorder my mother had (called somatatorm disorder, which is basically hypochondriac)...I cancelled my apponitment for my visual field test because I didn't want anyone to think I was as crazy as she had been.
By the end of the week I had the MRI done...I was tempted to cancel it, but went ahead and kept the appointment. I thought for sure my tumor would be a hormone producing one since I had so many miscarriages (10 losses in 22 months) -- and the hormone producing ones are known to cause infertility/pregnancy problems.
It was a long grueling 2 weeks before I got the results...and unfortunately the results were to have it redone with dye because there "was something there, but we need to confirm it with another MRI".
Another 2 weeks went by and my symptoms continued to get worse seems like daily...although I have good and bad days. It seems the more fatigued I get or the more strain I put on my eyes, the worse my symptoms get. I had the 2nd MRI and had the results by the end of the week...a confirmation that I had a tumor...the PCP didn't want to give me any more information than that because it wasn't her area of expertise and referred me to an endochronongist (not to be confused with a reproductive endochronologist -- Totally different drs) and the neurosurgeon.
It took another 6 weeks to get in to see the endo and 8 weeks to see the neurosurgeon. The endo reviewed my case and said that the only treatment for this type of tumor is surgery...had it been a hormone producing tumor it could've been treated with medications. He went over some of the things related to surgery and showed me my MRI. He warned me that side effects of the surgery could be damage to the pituitary gland which could cause diabetes insipidus and/or a need to be on hormone replacement therapy for the rest of my life. He told me to keep the appointment with the neurosurgeon.
This is a hard thing to live with and be blown off for years..it was so hard to believe I had a 3 year ear infection! But with my mother's psychiatric condition, I didn't really pursue it..I have tried so hard to be NOTHING like my mother.
Here's a link to the "official" page that outlines the symptoms and types of pituitary tumors: http://www.mayoclinic.com/health/pituitary-tumors/DS00533/DSECTION=symptoms
It seems the diagnosis took forever...but now I am a short 8 days from surgery and I cannot wait to be able to see clearly and without pain...to not be as fatigued...to be rid of the headaches...and to enjoy the wonderful sunshine again!
Ask away any additional questions...I am not shy :)
I did have the visual field test done recently and also learned I have Pigmentation dispersion syndrome...a flaking off of the iris of your eye and early glaucoma symptoms. However, the eye dr has said that the visual symptoms I am having are not related to this 'dysfunction'. They cannot treat me for this until after surgery but there is treatment available for this as well. I go in for another visual field test just before I go in for my 4 week follow up appointment with the neurosurgeon...that will determine my driving capability and remove my driving restrictions.
The vision problems -- blurred vision, blacking out feeling, seeing spots, tunnel like vision have been happening on and off for years. I thought it was due to diet, dehydration, etc and adjusted my diet...still that didn't help.
I have always had tingling/numbness in my feet and attributed that to a car accident I was in where I injured my back and neck.
I started to get shakes and feel "drunk" while walking over this past summer...again I attributed it to the heat, dehyration (I am also not one to run to the dr for things until they are really bothersome).
I could not focus on written word and had been to the eye dr for my annual eye exam in July and was told my eyes were fine. I was told that maybe just a small adjustment but nothing really that would require glasses or affect my vision severely enough to get glasses for driving.
I attributed my problems to many things...then one day in July I went blind while driving. This was such a scary situation I called my dr right away. I blamed it on everything from exhaustion to diet to dehydration to heat, etc....
I had my husband go in with me for fear they would blow me off. I told them I had researched it on Dr. Google and had the EXACT symptoms of a pituitary tumor. Thankfully my dr is a good listener. I took a printout of the hormone tests that need to be run to rule out a hormone producing tumor and she had no qualms about ordering those blood tests. She also ran some other tests that weren't on that list to rule out things like Lupus, vitamin deficiencies and liver and kidney failure. She ordered an MRI to rule out MS and to see if there might have been a tumor.
She also referred me to the eye dr who did another exam to confirm it was nothing wrong with my eyes. He ordered a visual field test. At this point all of my bloodwork had come back as normal (except for high potassium) and my eyes checked out fine so I was in a severe depression thinking I had the same disorder my mother had (called somatatorm disorder, which is basically hypochondriac)...I cancelled my apponitment for my visual field test because I didn't want anyone to think I was as crazy as she had been.
By the end of the week I had the MRI done...I was tempted to cancel it, but went ahead and kept the appointment. I thought for sure my tumor would be a hormone producing one since I had so many miscarriages (10 losses in 22 months) -- and the hormone producing ones are known to cause infertility/pregnancy problems.
It was a long grueling 2 weeks before I got the results...and unfortunately the results were to have it redone with dye because there "was something there, but we need to confirm it with another MRI".
Another 2 weeks went by and my symptoms continued to get worse seems like daily...although I have good and bad days. It seems the more fatigued I get or the more strain I put on my eyes, the worse my symptoms get. I had the 2nd MRI and had the results by the end of the week...a confirmation that I had a tumor...the PCP didn't want to give me any more information than that because it wasn't her area of expertise and referred me to an endochronongist (not to be confused with a reproductive endochronologist -- Totally different drs) and the neurosurgeon.
It took another 6 weeks to get in to see the endo and 8 weeks to see the neurosurgeon. The endo reviewed my case and said that the only treatment for this type of tumor is surgery...had it been a hormone producing tumor it could've been treated with medications. He went over some of the things related to surgery and showed me my MRI. He warned me that side effects of the surgery could be damage to the pituitary gland which could cause diabetes insipidus and/or a need to be on hormone replacement therapy for the rest of my life. He told me to keep the appointment with the neurosurgeon.
This is a hard thing to live with and be blown off for years..it was so hard to believe I had a 3 year ear infection! But with my mother's psychiatric condition, I didn't really pursue it..I have tried so hard to be NOTHING like my mother.
Here's a link to the "official" page that outlines the symptoms and types of pituitary tumors: http://www.mayoclinic.com/health/pituitary-tumors/DS00533/DSECTION=symptoms
It seems the diagnosis took forever...but now I am a short 8 days from surgery and I cannot wait to be able to see clearly and without pain...to not be as fatigued...to be rid of the headaches...and to enjoy the wonderful sunshine again!
Ask away any additional questions...I am not shy :)
I did have the visual field test done recently and also learned I have Pigmentation dispersion syndrome...a flaking off of the iris of your eye and early glaucoma symptoms. However, the eye dr has said that the visual symptoms I am having are not related to this 'dysfunction'. They cannot treat me for this until after surgery but there is treatment available for this as well. I go in for another visual field test just before I go in for my 4 week follow up appointment with the neurosurgeon...that will determine my driving capability and remove my driving restrictions.
Tuesday, November 10, 2009
Purpose
This blog was created for two (maybe more) reasons...one is to keep volunteers informed of the status of what's going on here and the second is as an informational tool for information on Non-Functioning Pituitary Tumors.
I will attempt to back track to the best of my memory to give you an idea of what signs and symptoms I experienced finally leading up to the diagnosis of the tumor to the surgery to the recovery.
I hope you find this to be a helpful place to find information. While doing my many searches over the months, I have found very little from the actual patients about what to expect on this type of surgery and I am hoping that by documenting it someone will be helped and put more at ease.
I will attempt to back track to the best of my memory to give you an idea of what signs and symptoms I experienced finally leading up to the diagnosis of the tumor to the surgery to the recovery.
I hope you find this to be a helpful place to find information. While doing my many searches over the months, I have found very little from the actual patients about what to expect on this type of surgery and I am hoping that by documenting it someone will be helped and put more at ease.
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