Discharge!

I woke up this morning, rubbed my eyes and looked at the clock...5am...fever time.  I jumped out of bed (hospital couch) and checked Nate's forehead...no fever!  I went back to bed for a couple hours and when we both woke up, I confirmed with the nurses...no fever!  Hooray, we are out of here!  We could have walked out of there first thing in the morning but we had to wait for the pharmacy to send up his pain medication to go home.  Jen walked over with the stroller to help me carry Nate's stuff back to the Ronald McDonald House...and we waited...and waited...and waited.  Dang pharmacy.  After several hours we decided to leave and come back later for the pain medicine.

We made it back to the Ronald McDonald House and ordered some lunch for delivery.  Nate ate nothing and as soon as we got back to our room he fell right asleep...he was just pooped.  We let him nap for a couple hours while we showered and I ran a few errands to find some snacks that Nate would eat and some rain gear (it has been raining all day today).

When Nate woke up we took him (ok...really we took Jen) back to the Toys R Us in Times Square.  We got some dinner at the Hard Rock Cafe and Nate ate half of a hot dog and a bit of a chocolate shake...more than he's eaten at a single meal, in a couple days.  He's still complaining of pain when it gets to be time for another dose of pain medication...which kills me.  I hate to see my little boy in pain...it just sucks.  I'm so thankful for a successful surgery and a fast recovery but sometimes it just gets to me that we have to be doing any of this.  I'm a little sad today...I think I'm just more than ready to come home.

Nate has a follow up appointment with the surgeon tomorrow morning.  I'm hoping we can get in and out of the visit quickly and hopefully it won't be raining and we can see a few more sights.  We have plane tickets heading home on Friday and I can't wait.

Post-op Day 2

Nate continues to do fantastic! He walked part way to the play room last night and played for a while.

Walking really hurts, so he is NOT happy to do it, but it's good for him so we smile and cheer him on. Part of the pain of walking right now is the chest tube. It really isn't draining anything anymore, and hasn't all day, so it should come out tomorrow. He was also able to start a full liquid diet yesterday afternoon, instead of just clear liquids which allowed him to drink his favorite drink of all time...milk!

 

 

Last night, he was talking on Skype to Grandma and Linde and they asked how he was feeling. He said, "My tummy hurts, I can't go home". Then he said, "My tummy got cut in half when I was sleeping". Oh my gosh!! The poor kid! Really, what must he think of all this?! We tried to explain what was going to happen, but he isn't even 3 yet, how could he possibly understand it.  I just hope he doesn't become afraid to go to sleep.  I already know it's going to be rough getting him to sleep in his own room when we get home, because he has had so many days now with me and/or Chris in the room with him.

Last night, he spiked another fever that never really went away.  They ended up starting him on an antibiotic.  I guess they usually give an antibiotic for 24 hours after surgery and never started Nate on one.  They also took some blood cultures but we haven't heard anything in regard to those yet.

This morning he got up and had a waffle, 3 cartons of milk, and a Gogurt.  I got him up and walking and he and I played in the play room for 2 hours while Daddy went back to the Ronald McDonald House and showered.  I kept asking him if he wanted to leave the play room and he didn't.  He was having too much fun.

Last night, before he was allowed to eat food, he requested McDonalds, after seeing a commercial.  The poor kid was probably thinking, "We've been staying at McDonald's house for several days now and the guy hasn't even given me a Happy Meal!"  So, Daddy brought him a Happy Meal for lunch.  He ate all his apples, one nugget, most of his milk and most of a Danimal smoothie.  He then requested more McDonalds for dinner (more McDonalds in one day then I usually let him eat in several months) and got a Baskin Robbins milk shake for dessert.

I know you wanted to know this, but Nate has also pooped a couple times today.  This is all great stuff when you're talking about being released from the hospital.  He has been fighting a little fever, since surgery and also a racing heart rate.  His heart rate runs a little on the high side normally, but it hasn't been under 150 since surgery, which is pretty high.  A high heart rate is usually due to pain (check), fever (check) or a fluid imbalance.  We've been trying to keep his pain and fever under control but the heart rate hasn't been dropping.  Right now, as I type this, I've been watching his heart rate drop.  It's now down to 126 and he doesn't feel warm to me at all (the nurse will come in soon to get the official temperature).  I also asked him if he wanted me to push his button (pain medicine button) before he went to bed and he said, "no".  I'm hoping this is all an indication the his fever is gone for good and his pain is subsiding a bit.

We walked to, and played in the play room again tonight, right before his milk shake and bed time.  He cried a lot on the way there, but barely complained on the way back.  Such a strong boy.  I'll check with the doctor in the morning to see how much longer they think they'll keep him.  Once the chest tube is out...he's eating, walking and pooping.  As long as the fever stays away, I can't imagine they'd need to keep him a whole lot longer.

New York, New York

I've been trying all night to upload pictures of Nate's early birthday party for a fun post, but I'm having no luck because the internet connection is so slow here.  So, I'll save that post for another day.

We arrived in New York, yesterday evening after a pretty uneventful plane flight (uneventful plane flights are a good thing).  We were picked up by a car service, courtesy of The Corporate Angel Network, another amazing organization that we have come to know through this journey.  Unfortunately, they were unable to locate a corporate flight for us but helped me change our 7 1/2 hour long flight with two stops to a 4 1/2 flight with no stops.  We flew into a different airport that was further away, so they offered to have a car service pick us up.  I didn't even know this was an option.  Really, all of these organizations are amazing!

Speaking of amazing organizations, The Ronald McDonald House here is incredible!  It is just like a hotel, but better, in my opinion.  We have a hotel sized room with two twin beds, a pull out couch and a private bathroom.  The house has a giant play room, a dining area that has several different, shared, fully stocked (plates, pots, utensils, etc.), gourmet style, kitchens and a beautiful family room area.  We have a mail box, a cabinet in our kitchen and a giant bin in the refrigerator and freezer to keep food.  They frequently have meals brought in from generous, outside groups.  The whole house is being beautifully decorated for Christmas and Nate was handed 2 new toys within seconds of walking in the door (we've been warned that at this time of year the kids can get a little spoiled, because lots of toys are brought in from outside organizations).  We are a short walking distance from the hospital, but the RMH also has a shuttle to the hospital available.

When we were given the tour, I held it together through the whole thing, but started bawling as soon as we got back to our room.  It's just so nice here!  In college I used to take collected pop can tops to The Ronald McDonald House in Tucson and one time I helped clean up after a family meal.  I remember pitying the families.  It was so sad to me that all those families had a sick child and had to be away from their home to get care for their child.  Are we really that family now?  I guess we are...and I'm so grateful to have the opportunity to travel with our son, to the best surgeon in the nation, and to have such a beautiful place to stay.

After our tour, some lovely friends picked us up and took us for a delicious BBQ dinner. Nate was a pretty good boy at dinner, but got a little wiggly at the end, so we headed home to get some sleep. We spent all day today at the hospital meeting with doctors...but that's a post for tomorrow because I need to get to bed. Goodnight from New York. I promise to write all about our meetings, tomorrow.