Day 6

.....And we're still here.  There are glimpses where I feel that Colin is improving, then I see a setback, and it kills me. 

The last two nights have been scary - both nights he has had an episode of respiratory distress.  The first night it happened, I had already decided I didn't like his nurse.  When he started to go into distress, his alarms were ringing, he was struggling, and I couldn't get her to come to us!  We had even rung the nurse call button.  It was terrifying.  Finally another nurse came in, got another nurse, and a few minutes later she comes waltzing in.  I was LIVID!!!!  I very strongly voiced my anger to the other nurses and I think she got a talking to.  The rest of the night she kinda kissed our butts!  It was very scary though.  I felt totally out of control and helpless, and what made it worse was the people that are supposed to help us, weren't.  I was PISSED.

Yesterday, one of our favorite doctors said she really wanted to send him for another chest xray and make sure there wasn't a pneumonia that had set in.  A little while after the xray, she came back to visit us and said there definately was pneumonia on both sides and an extra pocket of fluid on the left.  So we decided to start amoxicillian on top of the other stuff we were already doing.  Both Steve and I were very relieved.  It explained the constant spike of the high fevers and why he wasn't showing improvement.  We hoped this would be the turning point.

Last night, Colin had another episode of distress.  It started around 7:15pm  It was right at shift change, and again we had a hard time getting someone in our room.  His #s weren't falling like the night before, and he looked better, but he was gasping to breathe.  It is so disturbing to witness it and at that point, I lost it.  I know I was hysterical, but I just wanted to see my baby be able to breathe.  They decided to give him another breathing treatment and the dr ordered it to last an hour.  He was already mad because he couldn't breathe and now he was to have that stupid mask on his face during the treatment.  This made him even more angry.  He screamed the whole time.  He wimpered, he grunted, it was terrible.  So what's next??  His IV was leaking and they needed to change it.  They called 2 people up from the PICU to do it and they were wonderful!  By that point, Colin had totally tired himself out and gave up.  He was just laying there while they were doing his IV - and the dr ordered a blood gas so they had to get that blood.  When all of it was over, it was 9:30.  Two hours of panic and Colin freaking out.  At one point, we were down to .2litres of oxygen and now we're back up to 2.  Not good.

Today Colin has had a pretty good day.  He has finally eaten!  He's taken about 10oz of breastmilk - which is more then he has probably had all week!!  Definately a good sign.  He's been more alert and awake today.  We did have one scare with his iv.  He somehow bumped it/knocked it/messed with it and Steve saw it bleeding.  It took two nurses about 30 minutes, but they were able to save the IV!  Does it ever end?!?!

Originally they said he had to be off oxygen for 24 hours before they would send us home.  Two doctors have told me they could send us home on oxygen.  I'm glad to know the oxygen isn't what will keep us in the hospital.  It's breaks my heart to see how hard breathing is for Colin - for all of us, it's something that is so simple.  Stupid RSV.  We hope Tuesday to go home.  Hope, hope, hope.....  And for tonight?  I need a calm evening with no distress.  I already feel panicky knowing that the evening is sneaking up on us.  I can't handle another night like the last two.

Colin feeling a little better on Saturday and sitting up for a few minutes!

I really do want to smile, really....  

The terrible virus.....

RSV.

Three letters I never want to be around again.  Ever.  Never.  Seriously.

If you remember from a previous post, Colin had bronchiolitis a few weeks ago.  This past Sunday evening, Colin started coughing again.  I let his sitter know on Monday and asked her to keep an eye on him.  I called her Monday during the day to see how he was doing.  She said ok.  Smiling, breathing ok, it seemed ok.  When I went to pick Colin up from the sitter she said he was not sounding as good.  He had not eaten very well to - and his last bottle, he ate only about 1ounce of it.  I had a meeting at school so I Colin and I headed over to school.  I tried the bottle again, nothing.  He felt warm to me and I noticed he had started breathing hard, shallow and fast.  I called the ped's office but they couldn't get me in.  I decided to take Colin over to the ER. 

They got us in quickly, looked at his breathing, and the nurse got on the phone to say she needed respiratory to come to trauma 17.  TRAUMA?!?!  All of the sudden, I panicked, I started feeling flashbacks from taking Luke to the ER.  Immediately they got him on oxygen, his oxygen level was in the 80's but quickly came up to 100%.  They got a breathing treatment started, got an iv in, bloodwork, etc, etc.  Things were happening FAST and I was panicking.  They were asking me all sorts of questions.  The tears started to flow but they kept assuring me he was going to be ok, they just needed to get him breathing easier.They swabbed for RSV, took us to xray for another chest xray.  A little while later they said the good news is that his xray was clear although there was still some signs of bronchiolitis.  His RSV swab came back positive.  Eventually Steve got there to be with us.  I was able to relax a little now that I wasn't alone.  It was really scary - terrifying.  The ER doctor was fabulous, ironically, he was the same doctor that diagnosed Steve's pneumonia last June!  He made a decision fairly quickly that Colin needed to be somewhere else and we were given the choice of sending him to Riley or Univ. of Chicago Comer Children's Hospital.  We decided Univ of Chicago because of it's location to our house.  While they worked out the logistics of getting him ambulanced up here, the ER doctor would continue to come in to check on Colin's breathing.  I kept asking him, "is he ok?  Is he ok?"  He continued to reassure me he was going to be.  He just needed to be at another facility that had more resources in case things didn't go the way they should.

Steve rode up in the ambulance to Chicago with Colin.  I had to go home and get some stuff, knowing we would be up there at least 2 days.  I didn't get there too much later then they did.  They had Colin in the Intensive Care Unit.  This is where he was for the next day and a half.  He remained on oxygen, breathing treatments and monitored closely. 

Wednesday we were moved to a "regular" floor!  Woo Hoo!  We finally had our own room with a bathroom and didn't have to use a community shower, etc.  We have more space in here too.  We've seen a bazillion doctors and about as many nurses.  We've learned how to read his monitors and know when his alarm goes off it's really reading correctly, something is unplugged, or he's just moving around!  I've learned what high temps are in celcius, how much oxygen Colin is getting at any point in time. 

Colin's fevers keep going back and forth.  Today (Friday) they were around 100.  At one point, they've been as high as 103.  He gets very agitated when they get that high and his monitors go crazy cause everything gets out of whack! 

He doesn't want to eat.  This morning at 6, he ate about 2oz of breastmilk.  That was the last time he really took anything.  I gave him about 1/2 ounce by a syringe this afternoon.  They keep telling us he will eat when he feels better.  I am NOT going to want to put him on a scale when all of this is over.  All the positive gains we've made with his weight, and it's probably all gone downhill.  Boo.  Because he's not eating much, my freezer stash of breastmilk is growing quite nicely!  But, I'd rather it be going to Colin right now and not the freezer.

This morning they turned off his oxygen and had him on room oxygen.  That lasted about 2 hours.  He got slightly agitated and the doctor came back in and turned it up to 1litre.  Later, it was turned down to .5 litres.  That's where we still sit. 

Steve and I are both extremely discouraged right now.  Our hope was to head home tomorrow.  But now, who knows.  He has to be able to stay off oxygen, have no high fevers, and be eating.  Well, as of today the only one of those we have is no high fevers.

It's heartbreaking to see Colin this way.  He's the happiest boy ever.  Full of smiles.  I haven't seen him smile in days.  I said to Steve today I'm worried he won't ever smile again.  I'm worried that he will have taken a huge step back with the milestones we have reached at this point.  I worried about everything about him right now.

I'm ready to bust out of the place and get back home.  Now.

My poor baby in the ICU

Getting a breathing treatment.  One of his LEAST favorite things to do!



Visiting with Daddy

"Like my new quilt?  They gave it to me!  It was made by some volunteers and they give it to the sick kids.  I have used it the whole time I've been here!"

"My new home!  I broke out of ICU and I'm now on a regular floor!  They're getting my oxygen set up!"

How sad is this face??  His fever had just spiked, they just gave him some tylenol, and we had cool washcloths on him to see if it would cool him down.

On Thursday evening, one of Colin's more awake times.  He found his thumb!

One of the nurses cut Colin's nurses cut his "club" down so Colin can get to his thumb.  He likes having his hand a little more mobile now.



Hoping to be out of here soon.....

Yummy Yum Yum!

Last Friday we tried rice cereal for the first time with Colin.  He took to it right away!  We had a speech therapy evaluation and decided to give it a shot.
I was so proud of my big boy!  He didn't react to the strange texture of the cereal, or the spoon in his mouth.  She showed us some things we can do with the spoon in his mouth (pushing down on his tongue, placing the spoon sideways and pushing down on his lower job).  None of these things phased him.
A few times she said that so much of what Colin is doing is "typical" for his age!  LOVE  LOVE LOVE hearing that my baby is "typical!"  hehe  She loved that he sucks his thumb, and even chews it.  She loved that he's started to show an interest in holding his bottle (ok, so it's a tiny interest, and we have to encourage it!  hehe).  It went really well.

Love his messy cereal face!  My boy is getting so big!