Tuesday, October 23, 2012


1) Holding a baby is a strenuous activity
2) Someone is finally AWOL
3) Preparing for flu season
4) Finally getting somewhere with doctors
5) A light is dawning

The first one is obvious I should think.  I held my friends baby for about 30 minutes on Sunday afternoon with not much support for me and then again for a good 2 hours Sunday night and woke up with a shoulder and upper arm so sore you would have thought I had been in a prized fight.  I was even surprised when I didn't see bruises.  How can something so small (under 7lbs) cause any pain.  However, there is no way that I will ever not hold him because I am worried about pain the next day.  Just not going to happen!!

Second is actually welcomed news.  My mom finally admitted over Thanksgiving weekend that my brother has gone missing.  They have heard nothing since the early early hours on October 5th, he is not updating his facebook page and his cell phone has been disconnected.  Just what my mom needs during this time she is supposed to be using for healing in the run up to more surgery.  So we are back to the whole keeping doors locked and not answering any phone calls from unknown numbers.

My mom, K and myself all went over to the doctor's office yesterday to get our flu shots.  I know this can be a controversial topic but we choose to get ours.  Last year I didn't get one (as I was sick) and I was sick from mid-October through February.  I am not doing that again!!  It was easy getting K to get one this year, I just told him he couldn't see the baby if he didn't get his flu shot!  He got his shot then looked at me and said "That was it? It didn't hurt!".  We are still waiting on dad to get his but keep telling him with mom's upcoming hospital excursions, her need to heal and my crappy immune system he has to get one!

Fourth on the list is one that is pretty frustrating.  As you all know from my LONG post the other day about my mom, we have been in limbo for a while.  Dad decided on Monday that since it had been three weeks since the 'surgery' that he was going to call around and see what was going on.  He called mom's ob/gyn (Dr. P)'s office to see just what was going on and they hadn't heard anything but told him that they would make a few calls and find out what was going on.  They called back shortly and told dad that they were glad that dad called because when they called 'big city' they were told that mom's appointment was actually last week!!!!!  They had an appointment set up for her on October 18th that we never knew about and they never even questioned why someone in our situation wouldn't show up for an appointment.  Well dad was pissed!!!  I wouldn't have wanted to be on the other end of the phone.  So he called the general surgeons (Dr. B) office and just let go saying that they could be there in an hour and 15 minutes and that they would come at any time.  They told dad that Dr. B operates on every other Thursday and sees patients the other Thursday's (not sure what she does every other day of the week :S ) so they 'squeezed' mom in on November 1st at 8:45 in the morning!!  Which leads me to think that the doctor is coming in early to get mom's appointment.  Now remember, we live over an hour away so this makes it an insanely early time to get on the road for the appointment.  I honestly would suggest that mom and dad went up the night before and got a hotel but I don't think mom would go for that.  Now, here is the tricky part.  Thankfully mom was sound asleep through all of dad's phone calls and just woke up to find out that she has an appointment on November 1st.  Dad doesn't want to put anymore stress on her so we are not going to tell her about the 'missed' appointment.  Not sure how that will work out when she gets to the appointment so we will just see what happens.  Now this is only a consultation visit but we are hoping that we get a lot more information and dates from this.

Lastly, something I have been trying to avoid I think.  I am starting to realize just how messed up my GI system is getting.  I have all the 'normal' EDS and gastro lower GI issues (constipation, bloating, bleeding, cramping etc) but always just chalked that up to the pain medications that I am on and never thought anything of it.  A few weeks ago we found out that the stool softeners I have to take are not supposed to be taken within two hours of other medications!  I always took them with my normal night time medications.  So mom and I figured that maybe we should try stopping that to see if my night meds might just have been affected and messing with my sleep.  I went out and bought some Miralax and switched to that for a week.  I have never had the stomach cramps that I have had this week, and lots more issues with constipation so I will definitely be switching back to the pills as I haven't even noticed a difference with the other meds.  But at least I tried and saw what happened.  Now as to upper GI issues, I have noticed them getting a lot worse, especially after the scope I had last January.  I have finally got the real bad reflux under control with changing my actonel drug dosage thankfully but have lately been noticing other issues.  I have had a lot of problems with eating and having it feel like it is just sitting in my stomach.  I am not talking about feeling full a few hours after supper, I am talking not wanting to eat for a few days because I was still full from a meal I had a few days ago.  Also have found that I have to be careful when feeding the dogs and actually sit on the floor to feed them instead of bending and reaching down as if I do this (like touching your toes) the food literally comes back up and I have been quite close to throwing up.  I have to watch more which foods I eat as well as to figure out which cause me problems and stuff like that.  I have also been under a lot more stress with mom's problems but also quite run down as I have had to be more active this last month filling in for mom and stuff like that.  Once things settled down, this will be an issue that needs to be looked into for sure.

Tuesday, October 16, 2012

Unexpected Surprise and a Little Upset

Well I know this should have been about my mom and what is going on (and has gone on) but something else has come up that I wanted to blog about.  Because of all the moving I did with university and moving back home and honestly a lot because of EDS and the accompanying issues, I am down to one good friend in my hometown.  This friend "S" has been around a long time in my life.  Ironically our parents were acquaintances before we were even born!  They used to bowl on a league together but then lost touch with each other when my parents stopped bowling.  S and I became friends in grade 3 when I changed schools and we quickly learned our past history through out parents.  We were really close until about grade 8 and we grew apart.  We were in different levels at high school and in different circles of friends but were always friendly with each other, just didn't get together as often.  When I left to go to University we lost touch but when my nephew was born we got back in contact and kept in contact.  She was the only person I knew in my home town friend wise when I had to leave university part way through my second degree.  She had been there when I had some of my knee surgeries and always stopped by with Slushies and a movie. We grew apart a few years ago again mainly (knowing this now) as I fell into a deep depression and severed most ties with friends.  Anyways obviously we got back in contact, and she was married one year ago yesterday.  I was not in the wedding mainly because she knew I did not have the money to do it, didn't want to put a strain on our friendship (as we had both had friends that we stood up in for their weddings then the friendship would end) and honestly because my health couldn't take it.  We talked frequently on facebook and started spending more and more time together again as she had more problems with other friends.

Anyways, last year around the beginning of April she stopped by the house for a quick visit and we were talking about how my neighbours were pregnant (the girl who lives next door is one of S's good friends sister) and S gave a small smile and said "I'm about a month now" and rubbed her stomach.  Mom and I were so happy for her and then she said her mom would kill her because she wasn't supposed to be telling anyone about it as it was so early stages but that she knew I could keep the secret.  Since then she ended up losing her job and we fell into similar circumstances again.  Not having money to go out shopping all the time or movies every week so since this summer we have basically been getting together weekly and scrap booking or doing some occasional trip across the border for shopping.  She confined in me all her fears and worry's about being pregnant and not knowing what to do with a baby (she is pretty much the youngest in her entire family).  She was due to have her baby boy on Halloween.  She even talked to me about the name of the baby and told me that only family knew and they didn't want anyone else to know as they didn't want to 'jinx' it.

Last night I went facebook and was very surprised to see her brother post a picture of a gorgeous little baby and then confirmed that yes, S had her baby.  I went up to the hospital today around 2 and stayed there while they took him to get circumcised and tried feeding him (behind a curtain) and just be there.  I found out that her husband had dinner plans with his family and S's mom had plans to go on a day trip with family (remember she gave birth 3 weeks premature so plans had already been made) and that S would be alone from about 5:30 until the next morning!  I quickly offered to stay in with her and she looked relieved to have someone there with her.  I ran a few errands and got back to the hospital around 5:30 until 9ish when she was going to attempt another feed than get settled down for the night.  I found out that I was the only friend that had come up to the hospital to see her so I was the first non-family member (technically) to hold the little man.

I held her little boy most of the evening and even admitted to her that I had regrets.  If I had of known that I would end up disabled and my parents having custody of K, I would have stopped school when he was born so that I could be there to watch him grown up more.  Then I told her how I wasn't going to have kids and even said that I would love to be able to watch a little baby grow up as this would be my only chance.  I told her that if she needed absolutely anything to just call me and that this weekend when her husband has to work, I have no qualms about packing up an overnight bag to go in and stay with her.  Both her and her mom looked a little more relaxed when I said that.  I helped change a diaper, helped with the creams and gauze from the circumcising and just held and rocked him and she remarked that I knew what I was doing and she was going to need help and was glad that I knew what I was doing lol.

So all of that was really good news... the bad news?  I am in pure agony right now.  My entire right leg is in spasms and painful (even a pain killer isn't dulling it) and my right arm right from neck down to fingers is burning.  It really makes me mad that just going in and getting to know my best friends new little baby and holding him for a few hours has caused so much pain.  It is just so frustrating :(  Going to have to double up on the pain meds if I want any chance to sleep tonight :S

Monday, October 15, 2012

Worst Day Of My Life...

... and I am not being overly dramatic here!  I haven't posted yet about this as it was quite a few rough weeks around here medical wise - and it wasn't me!  I will start from the beginning and apologize in advance as this will most likely be long as it was a very very long day.

My mom has been having 'female problems' for quite a while now and after two D&C's within the last few years she wanted to finally get it all over with, by the way she does not have EDS. The doctor she usually saw classified her as a new patient so she was facing a six month wait before she could get in to see him again.  So the receptionist at our GP's office asked if she wanted her to try a different doctor and actually referred mom to her personal ob/gyn and mom was able to go in and see him mid-September.  Mom went to the appointment and Dr. P suggested a more 'sophisticated' D&C done in 'big-town' an hour away but mom instead asked if she couldn't just 'get it over with' and have a full hysterectomy.  Dr. P smiled and said that he hoped mom would ask for one.  Then he asked how soon mom wanted to get it done and she said any time so he went to check his calendar and had a date for her... October 1st - only two weeks away which she took and was glad to be getting it over with well before Christmas.  She was told that she would be in the hospital for 3 nights before being allowed to go home and would be on 'lifting restrictions' for 6 - 8 weeks.

So on September 30th, mom packed her bag for the week and I packed up all I needed for a day at the hospital.  When I have surgery it is generally mom that comes with me and when mom has surgery it's generally me going, dad hates the hospital so tries to avoid it at all costs and is really not good with sitting around and waiting.  October 1st we woke up really early and headed to the hospital.  We do the normal stuff and are taken to the same area I went when I had my scope (that bad horrible scope!!! uh-oh bad feeling #1) before she is taken up to the pre-op area and they let me go up with her.  I meet Dr. P at that time and was glad to see that her anesthesiologist was actually the one that I had a consult with before my last surgery who was really really nice!  I have no clue about any times for this day.  I know her surgery was supposed to be around 9:30ish and that she got to go back slightly early.  So I grabbed her stuff and my stuff and headed down to Tim Hortons to get a bagel and an iced cap as I hadn't eaten anything yet.  I then headed up to the waiting area for the in-patient surgery ward.  I had my breakfast and took out my book to read, knowing that I would be there for awhile before hearing anything.

I honestly don't remember what time it was but Dr. P entered the room and told me to sit down because we had to talk (uh-oh bad feeling #2).  He was very calm and collected and even though I knew it was serious, he put me instantly at ease just with his presence.  He told me that they did not do the surgery.  He said that he was glad that he was the one to do the surgery because when he does a hysterectomy he likes to look around the entire abdominal cavity whereas most ob/gyn's don't do this.  He tells me that they found what is called an abdominal aortic aneurysm and once he saw that he didn't want to proceed.  He told me that generally if an aneurysm is less than 5cm they aren't too concerned about it.  Then he tells me that my mom's is 12cm in size.  I went kind of numb at that point but he kept on saying that they were waiting for transport as they needed to take her to 'big city' urgently.  Dr. P says they are having slight difficulties with the paperwork as they have never had to send a patient from post-op straight to 'big city' by ambulance before (it is usually done out of ICU).  He also said something along the lines that there were no decisions that I had to make (thankfully!!  I was her emergency contact for the day because I was with her) and he was calling the shots.  He asked if I had any questions and all I said was I wanted to go and see her.  He told me that this was generally not allowed but he would talk to the nurse about it.  I quickly went on the Internet there to look up symptoms to see if there was anything that might be able to help.  I called my dad and told him what was going on and said that I would leave keep him up to date.  He told me that we would change places once she was off so I would be home with K and he would head to 'big city' with mom.

A nurse came to get me and told me that technically I was not allowed in the post-op area but that they were making an exception so mom could see me before she was shipped out (uh-oh bad feeling #3).  I get to the area and not only does mom still have her IV and catheter in but she is also now hooked up to oxygen, ekg, pulse ox and two or three additional IV's (one of which was designated for blood transfusions).  I remember a calm peaceful feel to the area as the nurses were all scrambling (uh-oh bad feeling #4) and at one point her pulse-ox fell off her toe and the machines started beeping but without even thinking I just put it back on her and the alarm stopped.  The one thing she asked of me was to call my aunt and NOT call my grandma at all!  

The ambulance was just arriving so I really didn't even get to talk to mom before hand (she was obviously quite groggy and confused).  I was not impressed with the ambulance man (AM) but the ambulance woman (AW) was really nice.  I asked immediately that I wanted to go with her in the ambulance and AM said 'no', AW then explained that they had to take a nurse with her so there would be no room for me.  At this point I am just searching my brain as to what to say / ask.  I told them that she had back pain for a long time that was termed as arthritis (learned this could be a symptom) and that made them even more put a bit more hurry in their step.  I then asked if they needed her medications - AM 'no', AW no we don't need them we have all that information on her forms and that 'big city' would handle her medications in hospital.  I asked if they wanted my dad's cell phone and explained that we were 'switching off' and once again AM says 'no' and AW tells me that they have me listed as a contact person and made sure that if I was called I could get any information to my dad (which I could) as they don't like having more than one phone number attached to each patient.  As they are strapping her all up, all I kept saying was that she was claustrophobic.  I needed to make sure that they knew that as I did not want mom having a panic attack in the ambulance on the way there.  AM didn't even acknowledge me where AW told me thank you for the information, made a mark on the clipboard and smiled at me.  I then asked where they were going and both AM, AW and a few other nurses all told me the same hospital (old children's hospital) so I knew where to send my dad.  They took her off and I was left with just a nurse and got out in to the hallway and was trying so hard to cry but when the nurse gave me a hug I broke down.  She just kept repeating what all the other doctor's and nurses I had seen had said - "This is a good thing!".  In my mind I knew it was but was still in shock about it all.  The nurse then told me that it was good as they could do non-emergent surgery and get it out before anything bad happened and that Dr. P did the right thing.  She walked me to the end of her unit, turned me around to look at me and asked if I was okay or did I want her to call me a cab.  I said I was fine and needed to get home so dad could leave.  She said to tell dad not to hurry (really?!?!?) as he might not even get to see her between tests until after surgery.

I called home and told dad that I was on my way home and that he could leave then (I had already told him where she was going and that he should pack an overnight bag for a few days just in case).  He said that he would wait until I got home and I was really mad about that.  I thought he should have left the minute I told him they were sending her to 'big city' but apparently he told mom that in his heart he had to see that I was okay before he left me here alone (K was at school).  We did a quick switch off and he tells me that he has called my nan already and a few other people that I was to keep informed as to what was going on. 

Then I sank on the couch.  From coming from such chaos and emotions and all of a sudden it was very overly quiet.  I knew that I should go lie down for an hour or so before K got home from school as I had told dad that he was to stay in 'big city' as long as mom was there and to not worry about me or K, that I had everything covered.  But that just wasn't an option with how fast my brain was running.  I called my Aunt (mom's side) and told her what I knew, what was going on and that I was basically leaving it up to her to relate the news to nan and my cousins, which she was fine with I might add.  I then called our neighbours (we have lived beside them for 23 years) and they said to keep them informed and that they were there day and night if I needed anything.  I will say though that I was disappointed with one person.  The only real friend I have around her, when I texted her and asked if she was free she said she was just heading out of town to go shopping with her mom and then asked if everything was okay and I said no.  I would have liked her to just cancel her trip but I know it wasn't that easy.  Then our good family friend (that came to talk to mom and I when the problems with my brother were going on from a few posts ago) was out of town on her honeymoon and I could only get her answering machine on her cell so had no option than to just leave a message (she felt horrible after!)  Anyways, I didn't want to be making a pile of phone calls so I decided that since most of dad's family was on facebook, I would just do updates on there. Ironically at that time it all worked out. My one set of aunt and uncle don't have facebook but their daughters do and the one was online at that time and called her parents.  My next set go on sporadically but her best friend was on so she called my aunt, same situation with my last set.  I felt horrible but I realized the next day that I did have another set of aunt and uncle not connected to facebook but found out another aunt had kept her up to date.

I ended up having one run in with a cousin (mom's side) when she posted on one of my facebook updates that 'someone' really needed to call my nan and let her know what was going on.  I was mad about that as my aunt on that side was the one person who I was telling everything to as soon as I heard anything.  I literally would hang up the phone with dad and call her.  I politely (I hope) basically said that since I was home alone with K I didn't want to be making endless phone calls and end up upsetting him.  I had told him when he got home that nanny had to have a different surgery by a new doctor in 'big city' but that was it.  I heard from dad late afternoon that they had taken her up for a CT scan and that they no longer thought it was an aneurysm but that they weren't sure what it was.  The vascular surgeon had been in and signed off on her so they were waiting for a new doctor to come and look her over.  At this point I was just all over the place so I just ordered pizza for supper.  When we got back the neighbour across the street was home so I went over to tell her what was going on and she said that she would leave her phone by her bed and for me to call her at anytime for anything.  Our other long-time neighbour echoed that.

I just went to start eating and I get a phone call from another family friend.  This family lived behind us for years and they watched my grow up and mom and dad watched their kids grow up.  They moved but dad is still good friends with them.  Ironically, she had been the OR nurse in the OR with mom which was strangely comforting that mom had someone there to hold her hand when she went under.  She wanted to know what was going on!  Apparently they originally thought it was a mass on her kidney so they called in a urologist but then she had to leave (not sure why) and when she got 'back' she found out they had sent mom to 'big city' with an aneurysm and had debated on calling or not.  I gave her the updates and she was relieved to hear it was not an aneurysm and that it was getting dealt with.  I told her I would keep her updated and call when I heard more and she had the nicest answer 'If you have time that's okay but don't worry about keeping my updated as I am sure you have your hands more than full talking to enough people'.  Someone understood.

Around 7ish I found out that it was a large cyst but they didn't know where it was attached but suspected the intestines and that they had met with the general surgeon and even though they needed to get it out, it wasn't an emergency and could be scheduled for another time.  He assured dad that it wouldn't be horribly long wait (we have dealt with 'big city' and surgery before).  At that point dad wasn't sure if they were sending mom home for the night, if they were staying there or what was going on so I assumed that he would be there over night and I was in charge of K for the night.  A few more calls and updates later and around 10 dad calls again saying they are shipping her home for the night so he is driving back, making sure she gets settled into her room and then will be home.  I figured since K was kinda out of sorts and I was exhausted I wasn't even going to bother trying to get him to sleep in his own bed (an ongoing battle) and just had us both curl up in mom's bed and tried to go to sleep.  But he knew dad was coming home, and I didn't want to sleep until dad got home, so we were up until 11:30ish that night.  I had set my alarm for the morning but dad got up with him and off to school. 

So that was Monday, October 1st, 2012.  It's a day I will never forget!  There is still more to tell but this is already novel length so I will post more tomorrow (or in a few days) about what has happened since.

Want to know the strangest thing?  As soon as Dr. P. said it was an abdominal aortic aneurysm my very first thought was...... "But she doesn't have EDS".