::pack:: of fixations



life after tragedy. living while grieving. love and triplets.

2.27.2012

kidneys or kidney

I did receive the pleasure of going back to the hospital for 4 days again.  My fevers and night sweats were undeniable and my home-health-nurse and an Infectious Disease Docs basically forced me to go.  I went from the ER to the ECU to Internal Medicine Unit (where, oh where shall they put me.  A frequent flyer who has another mystery infections).  I immediately had a CT scan and an X-ray which showed that my kidney was enlarged and infected.  Yet, my blood and urine were perfectly clean... which makes no sense at all.  I was still on IV antibiotics (hardcore ones) at home, which could possibly kill all the bugs in my urine but is unlikely.  Basically, we need Dr. House to solve this one.  

While I was in the ECU I was told they were gonna take the stent out that was still in my bladder and kidney in a couple days.  The Urology team and the Infectious Disease team seemed to be at a very professional war regarding whether the stent could be harboring some infectious bacteria and causing my fevers.  Much to my surprise, two southern gals from the Urology team, whom I've met before had time to take out my stent while I was still in the ECU.  It wasn't pretty, and it wasn't painless.  No warning, no mental preparation, they just opened my door and started setting up shop.  They basically went up into my bladder with a camera, flashlight, and a claw to get that puppy out.  "You did good darlin', that was a hard one", they told me after the horrific procedure.  Luckily, I just love southern accents and that did help keep the 'freaking outs' at bay.

The Infectious Disease team won the battle.  My fevers, they simmered down right after they took out that rotten stent, and even my night sweats were almost non-existent!  I was cured.  I really thought we finally figured out what the problem was.  ...I was wrong, of course it's not gone, it never is silly.  My fevers are slowly getting worse and my night sweats creeped right back too.  I went to the Urologist today and he basically said if I go back to the hospital again we will probably take my kidney out.  He also said that since I have all that other internal damage they probably will not be able to do it Laroscopically(<--butchered the spelling).  They will have to re-open the huge incision on my tummy or have to cut through a ton of muscle and go through my side.  Both would be about 8-12 week recovery.  The whole time I was thinking he%$ no!  I know you can live with only one kidney but my poor body is so beat up, I just might need that other kidney someday.  I also, can't imagine one more incision on my body and laying in bed for 12 weeks.  

A cousin on Ryan's side came over yesterday with DoTerra essential oils and explained to me how to use them.  So I am putting all my faith into them and am going to use them consistently everyday at full throttle.  I may also do some sort of kidney cleanse.  I've got to do everything I can so I can keep my kidney and not be sick anymore!  

While in the hospital I had a lot of time to cry.  I miss every inch of him.  I can stare at just one picture of him for hours, memorizing all of his perfect features and fat rolls.  My sister-in-law had some footage from the Pack family Christmas party that she sent me.  I watch those videos over and over and over again.  I watch him walk around and stumble.  I watch him watch me and follow me around with his eyes, to make sure I wasn't going very far.  (Did I even notice how often he did that? probably not).   I watch him fearlessly sit on Santa's lap and just stare at him.  I watch him get up to dance when we are singing Jingle Bells.    Colum, my little dove Mommy and Daddy miss you, we think about you every second of everyday.  I'm so grateful for every picture and video I have of you, you are so beautiful and we are so lucky to have you in our family.

P.S.
I just want to say thank you for all your kind comments.  They mean so much to me.  I'm sorry that I don't answer all the questions that get asked, I'm gonna try to be better at that.  One question I've gotten is if we've gotten a car and the answer is yes, and it's my dream Subaru :).


2.19.2012

My little Dove

Sorry about the lack of posts lately, for I am sick again.  My right gland in my neck became swollen and sore.  And on Friday night my in-home-nurse came to change my dressing on my PICC line.  He felt my skin and immediately took my temperature.  I had a high fever.  I secretly knew something was wrong but was perfectly comfortable in my state of denial and inability to get out of bed.  He told me, I had to go in.  Then I remembered one of the Infectious Disease Docs so kindly gave me her cell #.  We called her, she said I had to go in. 

When I arrived at the ER my fever had broke and I had no temperature.  I was placed on a very uncomfortable bed for 5 hours in the hallway of the ER before I was taken for observation.  The hospital was very crowded a lot of the floors had no empty beds.  In ECU where they took me the only room that was empty was a cement square room that had a bolt lock on the door, which had a small square window with blinds on the outside.  The bolt lock, locked only from the outside.  "Is this where you take patients who are prisoners",  I asked.  "No, no", they awkwardly replied.  Before I fell asleep a girl came to draw more blood and told me this is where violent patients are kept, and from that moment on my imagination ran wild about what had happened in that very room in the past.  The room had no heater, and my fever never spiked but was consistently low, so I was cold in a very cold room.  They drew cultures which take 3 days to determine if there are any new bugs in my system.  Since my fever didn't spike I was positive it was connected to my swollen gland and it was viral.  I was miraculously released the next morning. 

On arriving home I put my heating blanket on the highest setting and laid under it for almost 4 hours before I was able to finally get warm.  I turned it off and took a nap.  When I woke I took my temperature and it was 102.3 deg.  "Okay, if I'm still feverish tomorrow then I give up all hopes of it being viral", I've thought to myself.  It's tomorrow, and another fever is about to break right now.  I probably should go back to the hospital.  I can't bring myself to do it, not yet.  There are no Doctors there on the weekends or at least very little of them and + Monday is a holiday.  I'm rationalizing that what I'm doing at home is what I'd be doing there anyways...laying under blankets in bed waiting for the results of the cultures to come back.  Am I surprised this is happening again?  Yes!  I'm still doing very strong IV antibiotics at home, what on earth is wrong with me now?!?  I cry at the thought of having to leave my family again and go back.  I HATE not being in control of my own body.  If I want a drink a water,,,,I want a drink of water, if I'm cold I put a blanket on etc.  I dread the thought of eating hospital food.   My bones are healing nicely.  Everyday, it gets easier and easier to do normal, everyday tasks.  I went to my first outpatient physical therapy appointment.  I could tell my therapist was blown away and didn't know quite where to start with me due to the extent of my injuries, but it went well.  I LOVED IT!  I haven't been able to do physical therapy in 3 weeks, he couldn't believe how well I was getting around.  It felt amazing to move again.  My bone injuries feel so much better that sometimes I forget they ever happened and that I could just get up and walk into the kitchen without my walker.  Running again doesn't feel impossibly distant anymore.

What's my body fighting now?  I want so badly to move forward and to stay home.  I don't want to be exposed to more radiation.  I've done what I was supposed to.  My heart breaks for Colum.  I don't want to leave my family.

I decided to look up the meaning of Colum again, because I shamefully had forgotten.  It means Dove.  My little Dove, Colum.  It fits him with his soft blonde hair.  We cut his hair only for the 2nd time just days before the accident.  I cut my boys hair myself.  One of my sisters asked if I'd seen the hair we saved.  I'd forgotten we'd saved it!  There isn't much, but I've been running it through my fingers the last couple days.  It's so soft.  My little Dove, I miss you.  Help me be strong for I am getting weak.

2.12.2012

Mi Casa

I spent 5 days in the hospital.  Within the first couple days I tested positive for Staph infection of the blood as a result from all the problems with my kidney.  It was decided that I'd head home and administer IV antibiotics via PICC line.  I am about to sleep for the 3rd night in my own bed.  I am absolutely in love with being home.  The last few days in the hospital it was determined what antibiotics I'd be given to fight the infection, and I very nervously got a ultrasound done on my heart to make sure the Staph hadn't spread there (which it hadn't).  A nurse was scheduled to come to our house and show us how to administer the antibiotics and all the supplies were delivered.  Shortly after the nurse arrived that night we found that both lines in my PICC were clogged.  So we called the "PICC guy" from the hospital and some un-clogger solution was ordered and delivered a couple hours later.  There were a couple steps I didn't learn because of where I was sitting.  They are to be administered at 3pm, 11pm, & 7am.  One of them runs for 1 hour and the other runs for 3 hours.  The lines can't sit after it's finished, so they don't get clogged they promptly need to be flushed.  


I am still sweating buckets at night.  When my alarm goes off at 7am to administer the 1st antibiotic of the day I am sopping wet and the air outside of the blankets feels equivalent to a freezer.  But every morning Ryan pops up right out of bed without saying a word, gets all the supplies and hooks up the medicine to my PICC for me.  He knows the times of which goes when.  He takes it upon himself to take care of me that way throughout the day and I don't/didn't ask him too.  It's the little things like this that reassures me that I have the best Husband and I am definitely a very lucky girl.  When I arrived to the ER this last time, my nurse took me back to the room.  I liked her right from the start.  I don't remember what we were talking about but she stopped and looked at me and said "I just want you to know that your family really affected all of us that night".  My first response was 'affected' did one of my relatives say something offensive?  She said, "there's something special about your family, you guys affected us a lot and we see a lot of trauma".  I don't know why but that comment has stuck with me, maybe there is something special about us.  I realized later that I didn't bring my purse, wallet, insurance card, or ID.  They remembered me from that first night.


Finn is so sweet.  He loves me.  He lets me hug and snuggle him a lot more than a little boy should.  Being around him everyday again is helping me heal.  When he was 2 I took him to a mom and me class at The Little Gym.  They did a fundraiser for us on one of their parent survival nights.  The workers donated their time and parents pay $20 and drop their kids of to jump, play, and eat pizza from 5:30-9pm.  They invited Finn to come and I went back and forth all day debating if I could muster up the energy to go somewhere if we dropped him off.  We decided last minute to try to go to a movie and pulled up to drop Finn off at one of his favorite places.  I immediately was brought to tears because there was such a huge turnout. I'm so blown away by all the love and support we have received, I frequently get emotional.  A group of girls I went to school with through a very successful auction/yard sale... some of them I am/was friends with, but about half I wasn't.  They worked so hard for weeks and never tried to receive any glory, they just did it to help us.  Angels.  They are all around us.


I spend most of my time in bed.  For some reason I am really cold all the time and feel most comfortable under warm blankets.  Sometimes I still wait for Colum to walk through my bedroom door with his blanket.  Sometimes when I'm watching something on tv there is a child that sounds like him.  We tear up regularly about only having one carseat in the back of our new car.   I'm able to heal at home, where my special family, and heart is.

2.07.2012

Back in the saddle

I've put off writing this post, but not because I didn't want to write it. I've had the chills so bad from the worst fevers, & been so sick that I didn't want to pop even one finger out from underneath the blankets; teeth chattering. I have a fever of 102 as I type, but my fingers are allowing me to write this. This is the third night back in the hospital. I only got 3 days at home with my little family. On the 2nd day I felt a little sick but, the 3rd day I got a high fever and vomited. I was told I needed to come to the ER if I had a fever of 101 or higher, so we loaded up my Wheelchair and my walker & my oldest sister who'd been in charge of watching us that day drove the long drive back up here.

I'm sick because of my infection in my kidneys, which is a very complicated infection. I can almost smell it in the air when a fever caused by T.B.U.( The Big Ugly <-- that's what I'm gonna call it) is coming on. A specific light-headedness shortly followed by, horrible chills, overheating, & last but not least a massive amount of sweating; which eventually makes me cold again.

I'm glad I got to go home for at least 3 days. I was a Mother to my Finn, I got to experience a tv in my bedroom for the first time in my life (thanks Dad), & I got to smell Colum & cry with Ryan and talk about old memories of him. If you happened to talk to me while I was in the hospital, shortly after TBU was discovered you would've heard me talk about how I knew I would be back. I felt strongly that the treatment I was given wasn't working, I was frustrated for about a month about it, Im really in tune with my body. I have wonderful doctors (the best actually) trying to cure my TBU but, it's so complicated I fear the only way to make it disappear is very drastic measures that include removing my kidney which all my wonderful doctors that really care are trying to avoid. My current treatment is to administer antibiotics via a PICC line, that I may or may not be allergic to.

I want this to be over. I'm tired of fevers & hospital food. I don't want to feel any more physical pain so I can focus on my emotional pain. I want to go on a date with my husband, & lunch with a friend. I want to hang up 100 photos of Colum randomly all over my house so I can see him with every turn. I'd die to re-organize my storage room, junk drawer, vacuum closet, & kitchen cabinets. I miss going to Callie's for breakfast on Sunday mornings with our little family & watching The Real Housewives & Project Runway while I run. ....I miss Colum.

2.03.2012

Home Sweet Home

I'm writing this from my very own bed.  There have been a lot of changes around here since I've been gone.  I have my very own wheelchair ramp!  I begged and begged to have the plastic, fake, green grass put on it, but they said it wasn't my Birthday :).  The wood was donated and some very nice folks built it for us for free.  I don't have to cook!  We have people bringing us dinners and treats so we will never go hungry.  


I woke up in my own bed for the first time this morning, I hadn't taken my pain medications the whole night.  My whole body was throbbing.  Extremities ached that have never ached before.  I reached over, eyes still closed to push the button so I could sit up and page the nurse.  I reached and felt around some more... & then it hit me, I'm going to have to sit up all by myself even though every square inch of me was throbbing.  But then I looked to my right.  My boys were there by my side, sleeping so peacefully, my heart felt happy.  


The night before was amazing.  Finn snuggled up in between us, blankets and pillows piled high.  Listening to him breathe his sleeping steady breaths that can only come from a 3 1/2 year old.  Seeing him pick out his jammies and undies so enthusiastically.  Hearing him say full sentences and phrases I've never heard him say before.  It wasn't all peachy though.  Almost immediately after I'd gotten home, Ryan had a Dr's appt he had to go to.  My Mom stayed with me.  Finn would not stop playing games on our Ipad and he wouldn't eat any lunch.  He wasn't obeying me and so I took the Ipad away and his temper tantrum began.  I put him in time out because he was being very disrespectful and yelling "No" to everything.  He screamed and I cried.  My first hour home and he was acting like he hated me.  While in time out he just kept yelling for "mommy to go back to hospital again", over and over.  This put a dagger through me.  I opened the door bawling my eyes out and gave him a temper tantrum of my own.  I told him how bad that hurts my feelings, that I've been through a lot and have waited so long to come home to be his mommy again.  I said that but I said it like a 3 year old.  I laid in bed and cried.  A little while later I heard him walk down the hallway and stood outside my open door where I couldn't see him.  I asked him if he wanted to come lay in Mommy's bed and watch a show on my Ipad.  He said yes, and it has been mostly great since, cross your fingers.


He acted like he hated me while I was in the hospital.  It was a very heart wrenching, unbearable experience.  This boy who I was at home with 24/7, who wouldn't let me be more than 5 feet away from him.  He would barely look at me and cry/scream when people practically forced him to sit on my lap.  When all I wanted was to hold him as tight as I could, hold on to my one and only child that survived.  Hold him, for my own selfish reasons to satisfy my Mommy hunger cravings and to try and fill the hole in my heart.  He would rarely willingly sit by me.  I know that he has been traumatized.  I could tell that he either felt like I didn't love him anymore or was trying to detach himself from me.  He didn't do this to his Dad nearly as much, if at all.  I bought him (or had somebody buy him) a lightning Mcqueen pillow pet and told him to hug that pillow if he was ever scared or missed Mommy and Daddy.  I was told that he hugged that pillow a lot everyday.  I would tell him how much I loved him and how glad I was that he was okay, how he was so very special to me.   I'm still hoping that things improve and get back to normal really fast.  I'm motivated to walk soon so I can play the xbox Kinect with him and be the fun Mom again.


We are minus a car since ours got totaled.  I'm trying to work on my bargaining skills, and a lot of people I know are trying to find us a good deal.  Any experts out there, or any one know how much they can really come down from the sticker price?  We are buying another Subaru Outback because I truly believe that's why most of us survived and have no spinal or brain injuries.  I'm really hoping to find a really great deal and maybe even pay cash with our insurance money before all the hospital bills start rollin' in.  We also need to buy a headstone, and those look rather pricey as well.  Cross your fingers, maybe if we can get a car before Valentine's Day Ryan can take me on a romantic date and we can ride our wheelchairs into the sunset.


I love being home although it is very hard at times.  I can feel his presence all around me and every inch of this house brings back memories.  I sat alone in my bed last night smelling 1 of 3 of his blankets and it still has his smell.  I cried and cried.  I suppose crying  is what I do now, like a ritual such as working out or brushing your teeth.  Overall, being home is wonderful.  My family is here and I feel almost whole again and I'm where I'm supposed to be.


Have a great weekend!