Thursday, November 18, 2010

Can you say OVERWHELMED???

I am really super excited that the boys are getting ready to turn one and that Christmas is right around the corner.  But, at the same time I am feeling completely overwhelmed with what we have going on the rest of the year.  Let's count how many appointments we have:

4 with PT
5 with Easter Seals
1 MRI scan
1 post MRI follow up
2 Synagis shots
2 one year check ups
2 pre-op physicals
2 surgeries
2 post-op follow ups
and a partridge in a pear tree . . .

Not to mention, I have one appointment, Bubba has one, and my neice has two and will be starting weekly appointments.  So, that only adds on 10!!!  Has anyone done the math??  I have!!  That is 31 appointments in 43 days.  Thankfully, the Easter Seals appointments are at the house and all the boys appointments are paired up. This also doesn't include that fact that I am so stressed out I can barely move my neck.  I need to see a chiropractor.  Seriously.  Like, I need to have seen him yesterday.  Motrin and tylenol aren't helping one bit.  I am also working three days a week (but taking two off for their surgeries).

Go ahead, start the betting pool.  How long will it take for me to have a meltdown? 

And then we have the boys' birthday and the holidays.  We will be doing Thanksgiving at my mom's along with a family Christmas party the week before Christmas.  Christmas will be at my house since the boys' will be recovering from their surgery (I want to keep them close to their own beds).  I also have to plan and host their 1st birthday party.  But, since we are on serious RSV/cold/flu season lockdown, the party is being restricted to Bubba and my immediate families.  But, the party has to be planned (mostly done) and the house needs to be cleaned. 

Anyone want to reconsider their guess of when I will have my meltdown?  Anyone?

And, to add to the craziness, we are redoing our floors.  Since Colton is now a master army crawler (he is even starting to use his little legs to get him going), we have to pull up our carpet.  It's not safe - tack strips are exposed in the hallway.  So what are we doing??  We are pulling up the carpet and laying laminant flooring; yes, we are doing it ourselves.  Someone, please just shot me and put me out of my misery!!   The good news of this is that by the time the carpet is ripped up and the new floor is down, the house will be clean and ready for company!  :/ 

Maybe, I should look forward to the new year . . . uh oh!  Just checked the calender! 

2 with PT
5 with Easter Seals
2 with audiology
2 with opthamology
2 Synagis shots

And, they are trying to get Seanie into weekly PT.  That would add on 4 more PT appointments.  They are working one getting him in home PT, but if he can't get it, he needs to go to Fairfield for weekly PT.  The neice will have her weekly appointments too. 

Maybe I should take up drinking . . .

Wednesday, November 3, 2010

A Special Kind of Hell

Last Wednesday, Colton had a routine follow up with his neurosurgeon.  Well, it ended up being everything except routine!   His head measurement was up significantly.  He had jumped from the 10 %tile to the 50%tile, which was concerning.  But, now, his head had  grown even more!  The new measurement put him in the 90%tile!  Doc wanted an MRI immediately.  Nope, no MRI - they were fully booked.  He said ok, let's get him into a CT.  CT could fit him in right away, so off we ran over to CT.  When we got there, they took us right back.  We left CT knowing nothing.  We drove up the street to get some lunch (it was only 3pm already). While waiting in line at my most favorite place (Chipotle), the doc called my cell phone.  He had spoken to the pediatrician on duty at the hospital and was having Colton admitted for a shunt revision the next day! 

So, I called Bubba for him to pack a bag of everything Colton and I would need for the next few days.  I get my lunch and head back to the hospital.  By now, it's about 4pm and it's a hour wait until his room is ready.  Once his room is ready, we are taken to his room and greeted by a nurse.  She introduces herself and tells us that our nurse will be in soon.  Um, to me, soon doesn't mean 30 - 45 minutes!!!  That nurse introduces herself, tells me they don't have any of Colton's formula on the floor (and then stares at me like I sprouted a second head when I tell her the NICU has a huge stockpile of it!), tells me someone will come start an IV and draw some labs.  And, then she's gone.  Gone.  Gone.  Gone.  She never showed me how to work anything (no, she didn't know I was a Kaiser RN), tell me any special peds floor rules, offer me water, a blanket or a pillow.  N.O.T.H.I.N.G.

Bubba, Seanie and Amanda show up a few hours later.  They have clothes, tolietries, blankets, pillows and water for me!  YAY!!!!!     I tell them how things are going - the good and the bad, mostly the bad.  And, then Bubba asks, what would happen to Colton if you couldn't stay.  Um, well, he would be in him room ALONE.  If he cried, nobody would hear him.  If he screamed, nobody would hear him.  His room was actually across the hall from a nurses' station that was completely vacant - no lights on, no computers on, no supplies, nothing. 

Then there is the IV fiasco.  Multiple tries to get it in and then it blows within an hour.  Okay, I get it.  IVs don't alwys go right in and sometimes they blow.  But . . . . then lab comes in to draw his labs.  Thanks lab chickadee, YOU LEFT A FREAKING SHARP IN MY KID'S CRIB!!  It wasn't even capped!  Not to mention the rubberband you also left in there.  Second IV goes in his head.  This is a normal place to put an infant's IV.  But, I ask, won't the neuro want it some where else since he's having brain surgery???   She tells me nope, it's okay because it's on the other side of the head.  Next morning, doc comes in and wants to know why the IV is in his head.  I tell him.  He's mad.  He tells me they will use it to knock him out and then replace it before they proceed with the shunt revision.  I'm not shocked, but I am clearly annoyed with the nurse who put the IV in his head. 

Surgery goes well.  The catheter that goes from the shunt into the ventricle was clogged.  The shunt and the tubing into his abdomen were both functioning properly.  So, the doc just replaced the catheter.  Colton was taken to the PICU after his surgery.  As we were walking in the PICU someone asks if we are the Coats.  We nod, he says, GOOD!  We need you, he's awake and not happy!  So, we rush to his room to find him screaming and crying and thrashing about.  I look at Bubba and ask, "Is this how I am coming out of a general?"  He nods; I say, "Well, then, I would like to take this moment to apologize to everyone."   So, the nurses medicate him with about a half a dose of morphine.  No help.  Then, we try to give him some tylenol with codiene and juice.  He spits it all up.  Then some Zofran to help with any nausea.  Then some Ativan because he is clearly trying to go to sleep, but just can't let himself.  Nope, doesn't work.  Then a full dose of morphine.  Aaaaahhhhhh, good night, my sweet baby. 

The night was really uneventful.  At about 3pm the next day, a MRI showed the shunt was in the proper place and the ventricles were already shrinking.  We got our discharge papers and home we went.  But, once we got home, a long, long night began.  Colton began throwing up.  He wouldn't keep anything down.  We went back to giving him juice to see if that would stay down.  No such luck.  So, at mightnight, I call the advice and tell her I want the neurosurgeon paged so that I could talk to him.  No, she says, we need to bring Colton into the ED.   UGH!  Bubba and I rush around packing my bags to prepare for another few day stay in the hospital.  And, then, I have an idea.  I call my work and ask to speak to the pedi who is covering our nursery.  We talked about what is going on.  She told me that since Colton had never had straight juice, it might be too harsh on his system.  So, we mixed his bottles half juice/half water until we could get to the store in the morning to get some Pedialyte.   We also fed him a half an ounce every 15 - 30 minutes.  Oh, it was a long night.  Since I hadn't slept much in the hospital, Bubba stayed up most of the night feeding Colton.  The next day was long and trying, but Colton was slowing keeping more of his bottles down.  But, he would throw up his whole feeding if we gave him any formula.  We were giving him Tylenol every 6 hours or so. 

On Halloween morning, Colton woke up feeling much better but it took until the evening for him to keep down about 3 ounces of formula.  But Monday morning, he was eating full formula feeds.  Poor baby.  I think we jumped the gun bringing him homw Friday night.  He probably needed more Zofran to keep the nausea under control.  Both Bubba and I have a terrible time with post-operative nausea and vomiting.  For me, it can last up to three days.  For Bubba, he says it lasts 24 hours.  Um, no, Bubba, you will randomly vomit up to a week later!!!

So, how about some pictures from the hospital visit . . .

I'm just gonna eat this, okay?

Hit a button and milky bottles magically appear  :)

Preemie Prison

In pre-op

Lots of drugs on board . . . .

Vending machine dinner

Tuesday, November 2, 2010

Road Trip Photos :)

Amanda in Santa Nella - 1st stop - Starbucks!

Hungry Sock Monkeys

Buttonwillow Truck Stop

Mmmmm . . . . fries . . . .

I love me some fries! :)

Why is there a Busch in front of my hotel?!?!?!  NASCAR in Fontana

Seanie and Nana

Colton and Nana

Sunset from the Anaheim Hilton

Don't worry . . .  more photos to come . . . 

Trip to Nana's and Disneyland :)

Over Columbus Day weekend, I took some time off work and we took the boys and their cousin to southern California to see their Nana and visit Disneyland.  Nana is 86 years old and has lived in Fontana since I was born.  She doesn't travel very well so she hadn't even met the boys yet and it had been about 6 years since either Amanda or I had seen her!  Way too long, if you ask me. 

So, on Friday, when Amanda got out of school, we finished packing up the car and headed out of town. Almost immediately the boys fell alseep.  They didn't sleep the whole way down, which wouldn't have been good because then they wouldn't have slept that night.  With stops, it took us about 8 hours to get to Fontana.  By myself, I can make that trip in about 6 hours.  The boys waited to eat until we got to the bottom of the Grapevine.  We stopped for In N Out for food for us, milky bottles for the boys, and a bathroom break.  Well, when the food came, Colton immediately stuck his hand in the french fries.  He was going to have some of those fries no matter what anyone else was saying.  Sean wasn't interested in the fries until he saw that Colton was enjoying them.  So, we handed Sean a fry to see what he thought of them.  He liked them, but not nearly as much as his piggy brother.  :) 

 When we finally made it to the hotel in Fontana, Colton was not ready for bed.  Of course not, he had been sleeping in the car.  And, sharing the pack and play with Sean meant he thought it was PLAY TIME!  UGH.  I was up with him until 3 am.  Everyone else was sound asleep. 
We spent Saturday with Nana, Cheyenne, and Mark.  Everyone had a great time.  It was nice to catch up with everyone.  :)
On Sunday, we went to Disneyland.  Now, I know the boys are too young to enjoy Disneyland.  But, I'M NOT!!  I seriously love Disneyland.  I wish I could go once a month.   So, we had a great time in Disneyland and California Adventure.  The boys loved It's a Small World and Pirates of the Caribbean.  Neither of them were scared or cried.  Colton was completely facinated by Small World.  It was a long hot day.  We were in the parks for about 12 hours.  We even walked back to the hotel before Disney closed!  The next day was going to be the long drive home.