Pond Hopper

The wait is over

After a long and painful wait, we had our follow-up appointment with the specialist on new year's eve.  It wasn't a happy new year for us because he scheduled Ethan for surgery the following Tuesday to have the lump in his neck removed.  He'd be admitted in the morning and would even have to be put under anesthesia.  This was no small procedure for a year and a half old baby.  I was a mess over it and wasn't exactly in the mood to ring in the new year with any celebration and went to bed before midnight.
I couldn't believe we went from ear infection to biopsy with literally nothing in between.  We have been just sitting on our hands for the last two months with not even a blood test or urine sample.  The specialist (Ear Nose & Throat specialist) never even examined Ethan to any great extent.  I wanted to scream.  The doctor assured me this was necessary which to me, made me think he made his mind up on what it was which didn't require a test.  My husband was against the surgery and we were at odds over it.  But the doctor told me it was what we had to do.  I told Wayne when he got his medical degree that I'd take his opinion over a doctor's.  It was awful not being on the same page when it came to our son and his health.
On Monday, we had an appointment with a pediatrician for a 2nd opinion before Ethan's surgery the following day. Over the weekend (between appointments)  Ethan had come down with the flu and was quite sick - Sicker than he'd ever been.  I was out of my mind with worry, thinking that his flu was a symptom of something much more sinister.  I moved Ethan into our bed at night and kept him close at all times.  I was falling apart at the seems.  By the time the appointment came, I was sick to my stomach and fighting back tears on a moment to moment basis.
In this country, a pediatrician is not regular doctor.  A pediatrician is a specialist that your child sees only if there is a real problem.  Your family doctor treats the entire family including babies and children.  It was a comfort to finally be able to see a specialist in children.  The first thing she did was strip Ethan down to his diaper and give him a thorough examination.  She then sat us down to discuss what was happening.  When she found out Ethan was scheduled for surgery the next day, she was shocked.  She said I wish you were sent to me first.  She said she didn't recommend surgery.  She recommended a battery of tests and said if the tests came back showing anything abnormal we would discuss it then but lymph nodes like these sometimes happen with children and it isn't anything to worry about as long as the tests come back ok.  It can even take years for them to go down.  I was so relieved by all that she said, I just broke down and cried in her office. The surgery was cancelled.
We were immediately sent down for a chest xray to check for lumps in the chest or lungs and then for a blood test.  She also set him up for an ultrasound of his belly to make sure there were no additional lumps there.  FINALLY, something was being done! 
The following day, she called to let us know the blood work came back fine and as long as everything else came back fine, she would follow up with us in 6 weeks.  We're waiting for the ultrasound appointment to come through, but this time - the wait is seamless and I'm not at all worried.  For the first time in months - I can breath.

Nothing New

Ethan had his scan yesterday.  The technician told us the results right then and there.  She said that it ruled out fatty tissue, cysts and confirmed that it's his lymph nodes.  So basically, it just confirmed what the doctor already told us.  I asked if it was something serious if she'd be able to tell - the answer was no.  I had really hoped the scan would be the answer we needed but it was really nothing new and we are no closer to an answer than we were before.  The only thing to do now is wait for our next appointment with the doctor to see what the next step will be.  Our next appointment is on the 31st.  The waiting game begins - again.
My saving grace here is that Ethan doesn't seem to be in any real discomfort.  It's not as if we have to watch him suffer as we wait.  The only time it's evident that there is a problem is at night when he's trying to sleep.  I think the pressure on his ear is worse when he's laying down and he wakes up several times a night.  Other than that, he pulls on his ear occasionally throughout the day and gives his head a little shake.  You can tell it bothers him, but for the most part he is a happy little guy who is always smiling and full of energy.  Thank goodness for that.  If he was suffering, I don't think I could stand the wait.

Exhausted

I'm exhausted.  I don't know the last time I slept through the night.  Evan if Ethan sleeps, I can't.  Right now all I want to do is sleep, but every time I go to bed, I lay there either on the verge of tears or terrified by the uncertainty of what's happening.  I just can't bring myself to go to bed.
I got Ethan's scan moved up to tomorrow.  That would be really good news if I didn't just find out that the Doctor that's giving us the results is on vacation.  I don't know when he'll be back and it may be that I will have to wait until the 31st to get the results.  I have a call into our family doctor.  He's supposed to call me back in the morning.  I'm going to beg him to try to find out for me, but I'm not sure he'll be able to.  I can't believe the dumb luck of it!  I get the scan moved, but still can't get the results until after Christmas!
Ethan has come down with a cold and fever.  The poor guy was really miserable earlier.  I just want a magic wand I can wave to just make it all ok.  half the time, I feel like crying and the other half, I feel like I can't breath.  No matter what though, we never let Ethan get even a hint of there being anything wrong.  The best thing we can do for him is keep him comfortable and happy.  He is the happiest little boy.  I can't imagine anything getting him down for very long.  He just has to be ok.  He has to be.

The waiting is killing me...

Each day is different than the one before.  A couple of days ago, I cried randomly throughout the day.  The next day, I had nervous energy, but never shed a tear.  It's the nights that are the worst.  If Ethan sleeps through the night and I can sleep, it's fine, but I think the pressure in Ethan's ear is really painful (the lump has gotten so big that it's closing the the opening in his ear) and he usually wakes up at least once in the middle of the night.  I go in, sit on the glider chair with him, lay him down on me and stroke his hair until he's ready to go back down.  Those little quite moments with him are the ones that send me reeling because all I want is for it to just go away and be OK.
When I go back to bed, I'm either fighting tears, restless and nervous or wanting to scream - SOMEBODY DO SOMETHING! It usually takes hours to get back to sleep if I do get back to sleep at all.
The only thing that remains the same each day is the wait and disappointment when the mail comes through the door.  Today, the letter for his scan finally arrived.  The appointment isn't until the 22nd.  Not only do we have to wait another 12 days, but it's now certain that we won't know the results before Christmas unless by some miracle his pediatrician appointment ends up being on the 23rd or 24th.  That would be a Christmas miracle and would probable have me re-think my religious beliefs.  I'm not counting on it though so it doesn't look like it's going to be a very Merry Christmas for us with all this hanging over us.  Maybe the new year will be different.  If the wait doesn't kill me by then...

Keeping it together...

Wayne's night sweats came back last night.  His incision is still open and not healing.  It looks like the infection is gone, but it's still worrying.  I just want to be rest assured that he's healing and healthy, but it seems to be one thing after another.  He goes to the doctor today so we'll find out what is normal and what isn't.
To add to our stresses, he can't go back to work until it heals and we're quickly running through our savings.  What we saved for our move back to the States is almost gone.  We will have to start over once this has all passed.  I know what's important is that I still have my husband and father of my child, but it's still a disappointment.  The move will be postponed.  On top of that, we got a letter about 6 weeks ago (when all of this started) saying that to continue with his green card application, he has to go in for a health examination.  We've apparently been delayed with responding...
The letter for Ethan's scan still hasn't come.  I'm waiting with baited breath.  He's sleeping a little better at night, but at times he apparently in pain and I can't help but worry.  I have a little cry at least once a day, but try to put on a brave face.
I'm trying hard to stay strong for all our sakes.  Too much stress will cause a flair up of my condition and that's the last thing we need in this house.  I've already had signs of a flair up and went to the doctor to start on some meds and keep it at bay.  They wanted to start me on physiotherapy, but with that you get worse before you get better and I just don't have that luxury right now.  I haven't had a serious flair up in about 6 years and now is not the time.  Hopefully the meds will do their job. 

What doesn't kill us - only makes us stronger??

We saw the specialist for Ethan's lump on Thursday.  Another lump has formed in his neck.  the doctor said that it's his lymph nodes.  He said that typically, this sort of thing is caused by an infection, but it usually clears after 4 to 6 weeks.  It's been 5 weeks.  He said he will arrange for him to have a scan and will also arrange for him to see a pediatrician.  If there is no change by the end of the month, they will have to remove the lump surgically and do a biopsy.
The only thing we can do now is wait.  The way it works with the health care system in this country is they make the appointment for you and then send you a confirmation by mail.  You have no idea when the appointment will be or how long you will have to wait.  The wait is the worst part with something like this.
I cried quietly the whole way home but have tried to stay strong in front of Ethan.  I am constantly on the verge of tears and am sick with worry.
Ethan seems fine (besides still waking up at night, but that has gotten considerably better).  He's full of energy and perfectly happy.  You can tell he's in pain because every once in a while he puts his hand on his head and then shakes it.  Other than that, you'd never know there is anything wrong.  I'm hoping that is a good sign.
Wayne's night sweats have finally stopped.  His incision is still open & oozing, but has improved a bit.  He goes to the doctor every 2 days to have the wound cleaned and the dressing changed.  It looks like he is finally on the mend.

What doesn't kill us (part 5)...

Wayne's night sweats continued and Ethan was still waking up several times a night apparently in pain.  I hadn't slept in weeks and was now taking care of both of them on my own (my in-laws left the morning after Wayne came home). 
After a week, Wayne's incision started to ooze, he was complaining of pain in his chest and Ethan wasn't improving.  We took them both to the doctor and found out that Wayen's incision was infected and he also had a partially collapsed lung and chest infection.  The lump on Ethan's ear had doubled in size and the ear infection still hadn't cleared.  The doctor put them both on antibiotics and made follow-up appointments for them a week later.
Before Wayne's follow up appointment came, he was back in the hospital.  His incision was so infected, they had to open and drain it.  That night, I had to stay home with Ethan and had to send Wayne on his own.  An hour later, there was a black out and I had to sit alone in the dark for hours.  He was released later that night (after the lights were back on) with an open incision and was told he'd be treated on an out-patient basis.
The following day, we took Ethan back to the doctor.  The lump had become so big, it was closing the opening of his ear.  The doctor said since he didn't respond to antibiotics that maybe it wasn't being caused by an infection and made an appointment to see a specialist.  We couldn't get an appointment for a week and a half.  I thought the wait would kill me...

What doesn't kill us (part 4)...

My visit to recovery was brief.  I couldn't bear to see him that way and he wasn't really aware of my presents.  The nurse told me he would be up to the ward in about 15 minutes and I left to wait there. 
An hour later, he wasn't out of recovery.  I was worried sick.  A nurse saw me sitting there and came over to check on me.  He called recovery and told me they couldn't get the fever down and wouldn't let him out until the fever was more manageable.  Another hour past before they brought him up.  He was awake and had an oxygen mask on.  By this time it was late into the night.  I stayed until he wanted to sleep and went home to an empty bed.
Back at home, my son had a low grade fever and wasn't sleeping at night (he hadn't slept good in the weeks prior due to a cold he was just getting over).  I had to get up 3 or 4 times a night to calm him.  I put it down to a cold,teething and things being so different for him.  Mommy wasn't there for bed time, Daddy wasn't there either and Nannie and Granddad were giving him dinner, doing bath time and putting him to bed.  I figured he was out of sorts and not feeling great. 
I hadn't slept through the night in weeks and with the added stress, felt like hell each day.  Wayne's infection took a week to clear.  Every night, I would arrive at the hospital to find him delirious from the fever.  They had him on super strong antibiotics and kept telling me he would start to respond to them with time.  His incision area became swollen and red as well and I thought he'd never get better.  After a week in the hospital, the fever broke and they said he could be discharged as long as the fever didn't come back in 24 hours.
The night before Wayne was due to come home, up with Ethan in the middle of the night, I found a lump just outside his ear.  My heart sank .  I called the doctor fist thing in the morning and took him straight in.  The doctor said he had an ear infection and the lump was most likely caused by the infection.  He said if it wasn't gone in a weeks time, he'd give him antibiotics.
Wayne came home that day and the following night, the night sweats returned...
continued in the next post - - -

What doesn't kill us (part 3)...

While Wayne was in surgery I wandered around the hospital in a kind of a daze.  I couldn't find anywhere I wanted to be.  As I wandered, I found a single chair between floors in a stairwell and I sat there.  If I had to go through it alone, I didn't want to be around strangers.  I called my best friend and my mother to give them updates (as well as Wayne's parents) and spent the rest of my time either in that chair or in the hallway near the ward they would take Wayne to after his surgery.
The doctor in charge of Wayne's case turned out to be the same doctor that was my doctor when I had mt appendix out during my pregnancy.  After hours of waiting, as I sat in the hallway, the doctor came walking down the hall.  I jumped out of my seat and ran up to him (must have looked like a crazy woman).  I said, I am so happy to see you!  He had no idea who I was and must have been confused. I explained he was my doctor during my ordeal and that Wayne was my husband.  He said, 'oh, the man who just had his appendix out.' I was so relieved to hear the mass was actually his appendix.  The doctor explained that Wayne had a very nasty appendix that had burst and they took the equivalent of a Pepsi can full of puss out of his gut.  He not only had one large abscess, but two and the infection had spread to his blood.  He said they got to it in time and that he would be ok.  I hugged him - twice.   And then showed him my son's photo and told him he was responsible for him (if not for him doing my surgery during my pregnancy who knows what would have become of me or my son).  And then I hugged him again and let him go on his way (after all he wasn't looking for me when he came walking down the hallway.  I was just the crazy woman who grabbed him and hugged him several times).
Hours later, he came down the hall again and saw me still sitting there waiting.  He asked if I was ok (I must have looked a nervous wreck).  I said I was and asked if I was sitting in the right place.  He said, 'come with me'.  He walked me down to recovery (he's a head surgeon at the hospital).  He put the code into the keypad by the door and the doors opened dramatically.  He turned to me and said to wait there.  He walked in to the recovery room like super hero and announced he was looking for Wayne.  The doors closed behind him and I waited for him to come back.  When he came back, he took me in and introduced me to the recovery nurses and made his exit (my hero). 
I know it was a lovely gesture to take me in there, but the doctor was used to seeing people just out of surgery.  He probably didn't consider how it would be for me to see Wayne that way.  As soon as I walked over, I wasn't sure if I was going to be sick or pass out.  My strong strapping husband was laying there looking half dead.  He had dried blood on his hands and he was only semi-conscious.  He saw me and put his hand out to me.  I walked over nervously, asked if he was in pain and told him I loved him...
To be continued in the next post - - -

What doesn't kill us (part 2)...

The doctor took Wayne to our bedroom and examined him.  He called the hospital and had him admitted over the phone (sure it was his appendix).  I called one of the Moms I have play-dates with (whom I now call my friend) to come babysit Ethan and we took a taxi to the hospital.  3 hours later, after Wayne was finally comfortable, I had to leave him there because my friend couldn't stay with Ethan any longer.
The next morning, when when of the other moms found out what had happened, she came to my house at 7AM to sit with me so I didn't have to be on my own waiting for my in-laws to arrive so I could go to the hospital (friend number 2). 
My in-laws arrived later that day and by the end of that day, they took my husband in for emergency surgery.  They had done a scan and found what they described as a 'mass' and needed to operate to see what it was.  As they rolled him into the OR, I stood there alone in the hallway thinking they just took my whole life into that operating room.  The love I have for him is the same today as it was when we first fell in love and I couldn't imagine my life without him.  I have never been so terrified and the hours that followed were the longest hours of my life and I couldn't believe I had to endure them alone. 
To be continued in the next post - - -