On My Way Back...

Yesterday, I got up!  Yes - I did!  And I got a shower - and put a REAL outfit on.  My plan was to fake it till I made it.  And I made it - until 1:30pm when I went back to bed.  But it was a start!  Yay, me.

Today, I got up!  Again!  I repeated yesterday's program and this time - I stayed up longer.  I took a rest when the boys did in the afternoon, and then I came down for the rest of the day and night.  Woo Hoo!

That's the good news.

The bad news?  I'm still not "well" and I still feel pretty crappy.  You know that feeling when you think that if you could just throw up you'd feel better?  Yep - that's me all day and night.  STILL!  And my abdominal pain is still severe enough that I called my doctor today to whine - "Shouldn't I be better by nooowwwww?  Why do I still have these sharp, stabbing, twisting, awful painnnnnsssss?"  And then he laid it on me - "I'm afraid you will suffer from Irritable Bowel for at least a month while your body heals from this."  

Deep breaths.  In through the nose - out through the mouth.

He called in a prescription for me for a medication called Bentyl to hopefully stop this wicked abdominal cramping.  Fingers crossed.  I have things to do... presents to wrap... a birthday to plan... Santa to see... I have a life I need to get back to, thank you very much.  It's bad enough that I've missed what I have already - and will miss Ed's fancy work Christmas party this weekend.  I love a chance to get decked out.  But my super fancy dress is now super frumpy on my anorexic body.  Ok - I'm done whining.  Let's move on to some great news....

For the past few days, I've come downstairs to see the boys off to school every day.  This morning they both looked extra handsome in the outfits I laid out the night before.  Gavin got lots of compliments at school on his new shirt, Miss Sara told me.

He's been doing so well.  His Physical Therapist, Miss Wendy, said he walked down the entire school hall holding one hand the other day!

And Brian - he makes me laugh all the time.  He was nice enough to pose for me this morning by the staircase garland.

I'm very excited for him that he is "Star of the Week" next week in school!  It's fun that it's the week leading up to his birthday on the 16th!

The mornings have turned cold here.  This past week the boys have been driven to and from school by Miss Sara.  Since coats and car seats are a no-no, she kindly warms up her cars for the boys and then slips their winter coats on before they get out of the car at school.

About a month ago, I came up with an idea to keep Gavin warm in his wheelchair as he waits for the bus.  I turned to my Mom who is an amazing seamstress and she offered to make it for him!  We picked out this cool "burberry-like" fleece and I explained my vision.  I wanted something that velcroed around his neck and went around his seat and foot plate with elastic.  Like a temporary blanket that I can take off just as he gets on the bus.  She came by today...

...with the finished product!  He looks pretty comfortable, eh?  Thanks, Granny!

Brian, who was just finishing up his lunch, was not interested in a photo-op.  He said, in his best "Eyore" impersonation (as Miss Sara calls it!) - 

"I don't want to get my picture taken."  {big sigh}

So I snapped this picture and said - 

"Ok - I don't have to take your picture."  

As I started to put my camera down, I heard...

again, in his "Eyore" voice, 

"You can try again."  {big sigh}

And - POOF! - just like that, he was transformed.

I'm telling you - this little actor of mine is destined for stardom.

My neighbors have been delivering meals every night this week - we are so grateful and so lucky!  It's been such a blessing, as I've said before.  The meals were set to go all the way through next week, but yesterday I wrote to everyone and relieved them of their voluntary "duties," so to speak.  I really think I'm on my way back.  Slowly, but surely on my way back to life.  One of my neighbor friends wrote back to me and said, "How do these things keep happening to you?  I don't understand the man upstairs sometimes."

Well, neither do I.  But I think I'll adress all of that and more about my life in my upcoming book.  Oh, I didn't tell you I'm going to write a book?  Yes - it's going to be my life story.  The working title is... 

"You Can't Make This $h!t Up."

I'm kidding - I'm not writing a book.  But you have to admit... that's a pretty perfect title for my life story.

Dressed in Blue...

I made it downstairs this morning as Miss Sara was giving the boys their breakfast.  As I sat on the stool at our kitchen island watching... watching my life it seemed... I had a feeling of despair mixed with gratitude.  I'm so glad to have her here - to have her help - to have her friendship.  She loves my children so much.  But let's face it - if you know me, you know it would have to take a LOT to let anyone - even Mother Theresa herself - drive not just one, but BOTH of my children anywhere.  It was a decision that was so difficult to make and it filled me with dread and despair.  I hate being sick like this - unable to "be" - unable to "mother" - trapped.  I hate it.  But Ed and I knew the boys couldn't keep missing school and their routine and their therapy.  And, as the doctor told me, there's really no prediction for when I'll turn a corner.  It... quite frankly... sucks.  Saying goodbye to them this morning was so hard.  I had to shuffle my way back upstairs to literally vomit and didn't see them walk out the door.  

Can I just say how confused even I am that this Campylobacter - which is basically a food poisoning - has done this to me??  I have been so sick for so long.  If I dwell on it too long, it gets me depressed because it reminds me that my body is already fighting disease which makes fighting other things harder.  It's a very out of control feeling.  If you followed that at all, I'm impressed.

Miss Sara is incredible.  When she got to Brian's school - she texted me to let me know.  When she and Gavin got to school - another text.  I watched the clock and silly morning TV shows from my bed until the text came that she and Gavin were leaving.  She wrote:

"Gavin and I are headed to pick up Brian.  He did great this morning and was so happy to be back!!  He has a surprise for you which is going to make your day... and hopefully the past 14 for that matter.  See you soon!"

I couldn't wait.  

When I heard the garage door open she sent me a text again:

"We're home!  Would you like some visitors?"

The three of them came up to my bed and told me stories of the day.  How Gavin spent circle time with the Kindergarten class today and will be joining them for music once a week - a way to start preparing him for when he enters Kindergarten next September!  How Brian's teachers and friends were so happy to see him and learning that Brian will be "Star of the Week" all next week - the week before his birthday!  You could tell that both of them had a great morning.

But the surprise that Gavin and Sara brought home for me was what made my day and my spirit turn around.  I know I sound like a broken record, but I really am filled with so much gratitude to have Miss Sara.  She knows Gavin.  They have a bond.  So when I can't be there - she is an excellent substitute.  They truly love each other.

When picture day came around a few weeks ago, it was up to Sara to capture Gavin's attention and get him to smile.  These days, getting him to sit still is a miraculous feat!  But she did it.  Here is Gavin's very first official school portrait.

I dressed him in navy blue and chose the blue background to honor his Pop.  Pop loved blue and thought everyone looked good in that color.  I think I'll always put Gavin in blue for school pictures from now on.  A way of thanking my Dad for watching over him, which I know he does.

Can I just say - I love this photo.  Not just because he's gorgeous.  (Can I say that?)  But because of what it represents.  Gavin is growing up.  And as he grows, I grow.  Not just as a Mother - but as a person.  This little child has changed me profoundly.  (I hear some of my family members saying, "And thank God for that!")  

So today's despair for not being there?  It was definitely replaced when this photo came home.  It's hard to feel sorry for yourself when you realize that your children are happy and healthy... and maybe, just maybe, you're doing a pretty good job raising them after all. 

Even from bed.

From the Rabbit Hole...

This morning, as I watched the nurse push a large dose of pain medication into my IV, I turned my head away and closed my eyes.  I had reached my limit.  The last two days were pure torture.  I spent the day holding onto that hospital blue bucket - vomiting air and bile.  My abdominal pain increasing with every heave. I have been here for seven long days.  I have been away from my husband and my children.  I miss my boys and my bed and my health.  The doctor told me yesterday there is no end in sight at the moment - I could be better in a day or I could be better in a week.  With this disease, there are no predictions.  Unfortunately, this bug ravaged through my body and I was, as he put it, in bad shape.  

For the first few days (was it?  It's all a fog.) I was able to write my blog from my phone's key pad.  I wasn't able to access Blogger from either my laptop or my iPad.  Of course I wasn't.  Why make something easy for me during a terribly difficult time, right?  But two days ago - I couldn't even focus my eyes to do much at all.  I spent most of the day with my head in that blue bucket - or with a wet hospital rag covering my face.  Not even the pull of readers reaching out to me could get me to type on those miniscule little keys.  I'm glad that so many of you found me on Facebook to get updates - but I apologize that even there there weren't many.

This morning, with my eyes closed, I decided to give in.  To do everything it took to get home to my children.  I slept until I heard a voice calling my name.  My eyes focused on the clock - it was close to noon.  I had been dreaming drug induced dreams - Alice in Wonderland dreams - I was happy to be down the rabbit hole for that time because it meant I wasn't feeling the abdominal pain.  I turned my head and saw the face attached to the voice.  It was the wonderful Indian born doctor that has been carefully and thoroughly taking care of me since I arrived.  We went through the usual conversation we had each day - "How are you feeling?  Is the pain any better?  You have lost about 9 pounds to date, I have been told.  Can I examine your belly?"

Except today was a little different.  When he pressed on my belly to see how much pain he could evoke, I burst into tears.  He pulled his hands back in shock - "Are you okay?  Did the pain get worse?"  He was used to me wincing and sometimes crying out in pain... and we had just gotten over my instinctive sucker punch that one day (just kidding)... but this was different.  I was done.  I just sobbed and he put his hand on my knee and waited.

"I want to go home.  I need to go home.  I have been away from my children for far too long.  Doctor, please.  I need to go home to my children."

And then... after seven days... I heard:  "You can go home."

I looked back at the clock.  I wanted to be sure it had moved since I checked it last.  To be sure I wasn't still in that rabbit hole.  I looked back at the doctor and said "How?  Really?  Are you sure?"

He told me I am no longer contagious really.  The way someone in my house would get it is to come in contact with my stool and then ingest it.  I'm pretty confident that won't be happening.  He did say, however, that I have a ways to go.  I would need to rest a lot and take my medication.  I am still on the pain medication, nausea medication and a protonix.  The protonix medication will be used to hopefully heal esophageal erosion.  Of course it will.  Good God.  Moving on...

If it had been up the good doctor, I would have stayed probably through the weekend and then let go reluctantly.  But I guess he's a sucker for a mother in distress.  I promised him that I had a husband who will take good care of me.  I'm very grateful to Miss Sara who has taken exceptional care of the boys in my absence.  And Ed took charge once she left and was wonderful.

When I walked in the door at 4:00 this afternoon, I was never so happy to see these two faces (captured so poorly with my phone and my foggy eyes and shaky hands).

Gavin smiled and clapped.  Brian wanted to "show me" everything (including a very obvious Christmas present that had arrived and was sitting in the living room).  He was also fascinated with the neck pillow I used in the hospital.  That was a Godsend - thanks to Ed for that.

Gavin stared at me a lot - Buddha style.  He looked happy and healthy and free and clear of his RSV illness.  Nursed back to health by the village at home, thank God.  And Brian was super excited and ran circles around me.  When Ed was about to load them in the car to head to the pharmacy for my medication - Brian looked back at me very concerned that I wasn't going with them.  It broke my heart.  I feel at this moment (and I know I'll change my mind) that I'll never want to leave them again.

Which leads me to what you're all probably wondering.  How in the hell did I get Campylobacter??  Well, I spoke with the head of Infectious Disease at the hospital before I left today.  He explained that I most likely got it from food.  I took out my calendar and told him that before Gavin got sick that Sunday night, Ed and I had taken a little getaway to Atlantic City.  We stayed at the Borgata.  I enjoyed some spa treatments, spent time in my room doing nothing (which was quite blissful) and we ate in their restaurants.  Then, we got home and soon I was headed to DuPont with a very sick Gavin.  I was awake for two days with him and fell ill with a fever the evening of his discharge on Tuesday.  He said - based on the timing of my fever and the incubation time for the Campylobacter - I got it from something I ate at the Borgata and not from the hospital.  It has been reported by the lab to the Pennsylvania Department of Health.  They will be contacting me for more information of my whereabouts and what I ate.  Then they will trace it back to the Borgata.  It will be interesting to see if there were other people affected by this.  I hope there wasn't - I wouldn't wish this on anyone.  

So, let's recap.  Home from a mini-getaway to a sick Gavin who gets hospitalized with RSV.  Awake for two days in the hospital with him and threatened by an obnoxious roomate's father.  Home not even 4 hours before I start to get the shivers and shakes.  In the ER on the eve of Thanksgiving with suspected appendicitis - and sent home with pain meds and orders to rest.  It is only an ovarian cyst about to burst, prepare yourself.  Thanksgiving day in bed - feeling like I was going to die.  Fevers up to 102.4.  The worst pain I've ever felt.  I've never had real "labor" but I suspect it felt like that.  It's Thanksgiving so I don't call a soul to say, "Hey - can you come sit with my two sick and highly contagious children so my husband can take me to the hospital?" and my pride (and fear of traumatizing Brian) kept me from calling the ambulance.  Back in the ER, I was taken very, very seriously.  They were extremely concerned about me and quickly had an IV in each arm.  Turned out my ovarian cyst had ruptured and I had - after many tests and blood draws and finger exams - Campylobacter... which, by the way, can cause Arthritis and Guillan-Barre syndrome.  Beat ya on one of them!  I spent seven days alone on isolation in bed.  A girl with terrible arthritis that is intensified when she stays still for too long.  Yeah... that.

Really - there's only so much a chick can take.

If you need me, I'll be in bed for a while.  I'm not sure what, if anything, I'll be blogging about.  I may not blog at all some days... confident that you don't want to know about my bathroom trips.  So find me on Facebook.  We'll make it fun there for a while.

Thank you so much for your love and support.  I was insanely lonely in that hospital room on isolation. Even in my rabbit hole, I somehow got your comments and messages.  Every single one helped me through this nightmare.  I love all of you.

I'm HOME!!!!!!!!!!!!!!

Unimpressed...

I am sad to report that I am worse today.  Last night I started vomiting a lot which, in turn, caused significant abdominal pain.  They put me out of my misery with an extra dose of pain meds.  I was able to sleep for about four hours or so.

The vomiting continued all morning until I asked my nurse if there could possibly be any other options besides Zofran.  That clearly wasn't helping.  She came back a little later after having a pow wow with the pharmacist.  They now have me on a "cancer cocktail" - a combination of meds that they offer to cancer patients who need a powerful anti-emetic.  I still feel extremely nauseous, but so far I've only thrown up twice.

The events of last night and today have exhausted me.  I have not been able to eat and can only sip liquids slowly.  I had to write to Gavin and Brian's teachers to tell them they wouldn't be at school and each email took me about 15-20 minutes. I kept falling asleep and would wake up having to erase a whole lot ajjdhnnsdkjßxhdduwjb x

See what I mean?

The doctor was in and was unimpressed with my progress.  He said I'd likely be here a couple more days.  I'm sure you can guess how I feel about that... and I'm sure you are right.

Thank you for your support and friendship during this very stressful time.  I appreciate the nice notes so much.  I've been posting pictures sent from home on my Facebook page.  Feel free to friend me - I will accept you all!  Click on the Facebook logo at the top right of the page or search for Kate Gallagher Leong on the Facebook page.

Now I must lay back down for a good and ugly cry.

Diagnosis...

Last night I took another turn for the worse.  My abdominal pain intensified, I started vomiting and dry heaving (a very cruel joke when you have terrible abdominal pain) and...for the icing on the cake, I was slammed with my period.  I've been on Zofran (an anti-nausea medication) ever since.  I've noticed two things about this Zofran - it causes extreme fatigue in me and... it doesn't work.  I've continued to vomit up until - hold on - - - - - just now.  It's safe to say that I am completely and utterly miserable.

I was also starting to feel paranoid.  Every test was coming back negative, yet here was this patient saying she was in terrible pain.  Did they begin to doubt me?  And on the flip side - should I wonder if they missed something important?  Why haven't they figured it out by now??

But then, this afternoon, I got the news.  The last test came back - a stool culture that took a few days of growing in the lab before they could read it.  It came back positive for Campylobacter.    I'll let you click the link to read more about it - I'm just too tired to write anymore.

Basically it's a food borne illness and it causes a range of symptoms depending on the person.  If Ed and I both got it, he may have minimal symptoms.  But because I have immune issues, it wrecks me.  They are going to put me on IV antibiotics and keep me here until my body calms down.  

I will be very happy when this is all over.  I have no words to describe how I feel right now, but there have been lots of tears.

Holding Pattern...

I am still not able to access my journal on my laptop OR my iPad.  I have no idea why!  So once again, I am typing this from the tiny keys on my phone.  Not that easy when you're on pain meds that sometimes make your eyes drift into a semi asleep position.  So I will do my best tonight.  Don't expect much!

I'm still here, obviously.  I still feel positively awful.  The fevers are gone, but my abdominal pain has stuck around to torment me.  I cheered out loud when the doctor told me that the test for C. Difficile came back negative.  Go ahead and google it - I bet you'll cheer, too.  There are still a couple tests pending that should come back tomorrow.

The theory at this point after the doctor and surgeon discussed my case at length is this...

I have a bowel infection which causes inflammation... which produces pain.

Inconveniently, I had an ovarian cyst rupture at the same time... which added pain.  A lot.

They saw fluid in my abdominal cavity, which can cause discomfort.  And they suspect that the ruptured cyst leaked blood into my abdominal cavity.  The perfect storm.

I was grateful for a few things today.  I was able to sleep for two three hour stretches during the night.  I even dreamed!  This afternoon my doctor increased my pain medication which helped a lot.  My Mom came to visit me and brought beautiful pink roses.  I was so happy to have her there.  Then my Mom went to my house to stay with the boys so Ed could come see me!  And just as he arrived, so did my sister, Bean.  Tomorrow if the tests come back negative, they will take me off isolation and Ed will bring the boys to see me!

I'm in a very depressing and painful holding pattern.  Hopefully I'll have more to report tomorrow.  In the meantime, say a prayer for me?