My New Hand Splints!

Really cool, huh!?!

Pat-A-Cake, Pat-A-Cake, Baker's Man!

We're home...

After much debate by the doctors on Tuesday, we were sent home at 6:30 p.m.  Before being discharged they set Nicolas up with portable oxygen and the Respiratory Therapist trained me to pat his chest in certain areas to help break up the congestion.  Nicolas did fine on the way home and seems to be doing fine here at home.  If for any reason things seem worse we are to return to Riley.  Nicolas will stay on oxygen 24 hours a day for three weeks.  Then he has an appointment for an overnight sleep study at the Clarion North location.  That will tell us whether or not he still needs to be on oxygen and whether or not he needs his tonsils/adenoids taken out.  He might need them taken out because if he is floppy on the outside then he may be floppy on the inside and those may be obstructing his breathing.  We will find out the results at an appointment with the Pulmonologist on Monday following the sleep study. 

It is good to be home!

Love,

Felisa

Friday at Riley...

Well on Friday while we were visiting with our developmental Ped doctor she felt Nicolas' breathing seemed labored due to his congestion. After hooking him up to an oximeter (that measures the oxygen carried by the hemoglobin) we found out it was a little low. It should be between 98 and 100...He was dipping between 88 and 92. Our doctor felt we needed to go to the Riley emergency room for further investigation...i.e blood work, chest x-ray, urine test, throat culture, etc. Well the doctors there felt that we needed to stay overnight for observation and breathing treatments. Once checked into a private room. The doctors informed me that this is viral so we should stop giving the antibiotic and the steroid that was prescribed on Wednesday. He does not have RSV or pneumonia...but it is in his chest...and because Nicolas has difficulty moving it around (coughing, sneezing, swallowing) it could get worse. Colds (whether his immune system is good or not) are not going to be easy on Nicolas ever...and should not be overlooked. Since his oxygen was a little low they warned me that he may have to be put on oxygen...and if he does that would buy us another night at Riley. Well it wasn't 20 minutes after they said that and he was put on oxygen. So Garrett and Jake stayed home Friday...they went bowling and caught a movie (Mall Cop). My friend Sara came to visit and we ended up ordering Chinese together before she went home...On Saturday Jake and Garrett packed their bags and headed down to Indy to visit and stay the night. We played Monopoly, watched Kung Fu Panda, and had dinner before they went to the hotel to go swimming. They closed the pool down at 11 p.m. Then this morning they brought me breakfast and I went swimming with Garrett. This morning Nicolas was taken off oxygen but at 2:30 we found out we are going to stay another night. He had a few oxygen dips so they want to observe him longer off the oxygen to determine that when we go home tomorrow whether or not he will need oxygen at home. At 9 am tomorrow morning we will know if he does or doesn't...Riley will set that up for us. As for Jake and Garrett they just took off to try and catch the Big 10 Championship game...Garrett is pretty excited because Purdue is in it. Then they will be back in time for dinner with me...After that they will head home. Our nurses have been wonderful and we're hangin in there. Looking forward to going home tomorrow...but this hasn't been unbearable...We just want our little Nicolas to get better.

Love Always,

Felisa

More about our busy week...

Yesterday I took Nicolas into see Dr. O'Brien for an immunization and instead of getting one Nicolas walked out with an antibiotic and Prednisolon (steroid).  Nicolas always sounds congested but lately it has seemed worse and a couple of days ago we noticed that his secretions were starting to look yellowish.  So we asked Dr. O'Brien to take a look...and he did hear some fluid in his lungs.  Because of Nicolas' immune system and because he has difficultly moving that stuff around (i.e, coughing, sneezing, swallowing) Dr. O'Brien wanted to be aggressive with his treatment.  So we added a couple meds and breathing treatments every 4 hours.

Today at 2, Nicolas will be getting his cool new hand splints with resting pans.  I'll post a picture of them soon.  Later this evening Nicolas and I will be headed down to Indy AGAIN to spend the night at a hotel.  His first appointment is at 8:40 tomorrow and the last is at 11.  So I should be home before Garrett gets off the bus.

Nicolas seems to like staying at hotels...pretty comfortable...check out the picture!  It was taken during our stay on Monday.  Dad picked up PF Changs AND Cheesecake Factory...My man is SOOOOO good to me!  It was so yummy!  That night Nicolas was pretty congested so none of us slept very well....I think I woke up every two hours to suction his nose and throat.  The Dr. Walsh appointment went well.  We plan to make a post sometime next week with all the information from this weeks Riley visits...so watch for it.

Until then please keep us in your thoughts and prayers...especially little Nicolas...we hope he gets over this cold quickly!

Love always,

Felisa

This week...

Originally we were supposed to see Dr. Walsh on Friday the 13th, but due to a scheduling conflict they moved our appointment with him to Tuesday the 10th at 8 a.m.  Because this is so early Jake and I will head down to Indy Monday night.  We will be driving separate because Jake has an appointment early afternoon in Fort Wayne that he cannot miss...so he may need to head home without me if the appointment takes a while.   We are on a waiting list to get our other appointments on the 13th bumped up to Monday...but they're booked solid...SO if there is no cancellation it looks like we will head down to Riley again on Friday for the Developmental Peds and Opthamology appointments.  This week (starting Wednesday)  we will begin another round of immunizations for Nicolas.  We will go twice a week until caught up.  So far it is shaping up to be a busy week!  I'll let you know what we hear from Riley as soon as possible!

Love,

Felisa

What is the #1 rule of the universe?

DON'T PANIC!

Now let me tell you about our day...

Due to fog, Garrett had the day off of school.  So we got to spend the day together!  We worked out together this morning and then Garrett put his laundry away, took out the trash, fed the dog, and made his bed while I bathed, fed, and dressed Nicolas!  He was a great help this morning but this afternoon he really stepped up to the plate!

After we got cleaned up, we headed to the Angola Outlets to make a quick return.  I carried Nicolas into the store...because this was going to be brief... while waiting for the sales person to give me my receipt to sign i asked Garrett to hold Nicolas....which being the good brother that he is, he said, "sure!"  BUT the lady was taking longer than she should and Garrett started to get tired...Nicolas is quite heavy...so he had to hand him back to me.  During the exchange I felt a warm liquid start to ooze all over my hand.  I looked down and said, "close his button Garrett, it came open and is leaking"...But on further inspection realized it had come OUT....THE ENTIRE FEEDING TUBE HAD COME OUT!!!!!!  

My initial reaction....PANIC...

I laid him down and immediately tried to put it back in...which is impossible...

...because there is a water balloon on the end of the feeding tube which anchors it into the tummy... To put it back in you have to empty the water out of the balloon using a syringe...reinsert the feeding tube into Nicolas...then put the water back in....

Well at the moment...

My mind was going a mile a minute and yet all I remember is...

This isn't supposed to be OUT...It's supposed to be IN!

And all that was coming out of my mouth was...

O my gosh...O my gosh...O my gosh....O my gosh....O my gosh...

Then a women came over and said I'm a nurse...and I thought to myself, me too! (HA--not really)  Well everything clicked and I remembered I had everything I needed in the diaper bag which was in the car.  So I gave Garrett my keys and told him to go get the diaper bag.  He brought it in and the nurse held Nicolas down on the table while I reinserted the feeding tube.

After that...I bought Nicolas a new outfit...dressed him...cleaned up the very sour smelling formula that was all over their cash register area...

Said thanks and we walked out the door!

So #1 rule....DON'T PANIC!

And I must say...Garrett was amazing!  He didn't miss a beat...he was focused and calm!

I was shaking so bad that I could barely sign the receipt!

I'm so glad he was there with me!

What a day!

Pirate Party's!!!

The Meyers Family...

Reading my pirate book!

I buried treasure in my pocket!

Pirate Camden

The Baker Family...

Pirate Andrew and Pirate Jacob

Two Pirates wishing Nicolas a Happy Birthday!

-Uncle Joe and Aunt Lynne

The Stein Family...(Tom and Christy)

Pirate Tommy

Pirate Aaliyah

Hey Guys, 

Hope Nicolas had a Happy Birthday!  What a wonderful idea the birthday box was.  The kids loved the books and Tommy liked to dress up like a pirate.  We had Cassandra make the cupcakes which were good.  Tell Nicolas that we can't wait to see him and we love him lots and lots.

Love Tom and Christy and kids

The Leman Family...

Jack, Tim, Kimra (Ms. baby Leman in mommy's tummy) and William

We enjoyed pizza and a movie!

Cool Pirate Brothers!

Pirate Jack

Pirate William

The Brower Family...

Pirate Brielle and Pirate Jake

Yummy cupcakes!

To Nicolas

HAPPY 1ST BIRTHDAY NICOLAS!!!

We hope you had a great day and a wonderful 1st birthday.  We had a lot of fun celebrating here in Indy, but wish we could have spent it with you...next year :) We made cupcakes, lit a candle for you and made a wish that your second year is even better than your wonderful first.  We are so proud of you and the little man you have become.  You have been through a lot and have been quite the tropper.  You are so lucky to have such amazing parents and big brother that love you so much.  We love you so much too and can't wait to see you again.  Happy Birthday little pirate!!

From the Browers

Aunt Danae, Uncle Jake, and Pirate Brielle

More Pirate party pictures soon!