Sunday, October 24, 2010

Week in the Hospital

2 x-rays
2 Fluoroscopic tests
1 Barium Swallow
1 Urinalysis
2 ultra sounds
1 heart echo
1 CT Scan
4 blood tests
3 neurologists
2 Surgeons
2 pediatricians
2 Geneticists
1 Nutritionist
2 lung specialists
and about 10 other doctors and residents

This was our last 2 weeks. On Tuesday Nate will undergo surgery and hopefully it will fix his breathing problem. Most of the time Nate thought it was the greatest adventure ever. He loved looking at all the machines and lights and the loved all the attention he got from the nurses doctors. Nate was the talk of the hospital. Lets take a look.

He had to be hooked up to oxygen for the first few days. He kept trying to pull the tube into his mouth and suck on it.


"I feel a draft". His little hospital gowns were pretty cute.

He finally got his IV out after 6 days of having it in. We had to cover his IV hand with a sock to keep him from chewing it off and after 5 days it smelled like death. Getting it off and giving him a bath was almost as good as being discharged.

Nate made sure to always to do his stretches before his tests to prevent injury. Didn't want to pull a Hammie.

Despite all the interrupted sleep, the tests, the poking and the prodding, Nate stayed cheerful and happy.

The Pediatric floor had a nice playroom that we visited whenever Nate was unhooked from the machines. Nate thought it was great fun.

Wednesday, October 13, 2010

Barium and Tears

Things have been happening and they have not been fun. Last Monday Nathaniel had his 6 month check up. By tomorrow Nate will have visited a doctor 3 times, seen 2 specialists and had 4 tests run on him. Nathaniel breathes very rapidly and in reverse. That is to say, when he breathes in his diaphragm moves upwards, and downwards when he breathes out. For those of you who did the coke bottle, lungs and diaphragm science fair project in elementary school, you know this is backwards.

Today he had to undergo a barium swallow and a second ultrasound test. He made it through the US test without a peep even though he had been fasting for 3 1/2 hours at that point. We arrived at the x-ray room and things got harder. Nate is a brave kid. I mean he really sucks it up and does what needs doing. Seriously, I saw him stare down a tiger once.

But bravery can only go so far. We laid him on the bed and everyone but me put on lead aprons. Only one parent could be present so I had to leave and watch (and hear) from the other room. I saw them lay little Nate down and watch them pull the machine over him while Annie held him down. Next they tried to feed him barium through a bottle, he refused. Atta boy Nate! This whole process had been inefficient and absurd at times so I was happy to see my boy spit that barium back out. Next they tried to squirt it into his mouth with a water dropper. He'd seen his cousin Sammy do this thousands of times so he knew the drill and swallowed a little. I watched the x-ray pictures and saw the barium trickle into his stomach. But it wasn't enough.

Finally they had to create a more diluted barium concoction that was sweeter and feed that to him. Nate accepted this offering, but just barely. They laid him back down on the table and pinned him down again. At this point I began to hear his crying. Not loud annoyed crying but moderate cries of sadness. Fed up of being held down, poked and prodded for over an hour he finally lost it. They finished up finally (after they stopped to chat with a doctor about a room scheduling conflict while Nate was in the middle of the process) and I was free to enter the room.

Nate lay on the bed and I went to pick him up. He was a picture of patheticness. He had barium all down his face and his hair was matted down from barium that had spilled and dried on a large portion of his head. Fresh tears made a line from his eyes to his ears. He had barium on his hands and his shoulders and his face and he was exhausted. There was Nathaniel in naught but his diapers covered in barium and tears.

But he is a brave kid. It takes a lot of poking and prodding before he starts to lose it. Even then you see his bottom lip push out and tears well up and he fights them back. He'll do that for another couple of minutes before he actually loses it. He is brave indeed. Seriously, I saw him smack Mike Tyson in the mouth once.

We still don't know what will happen with him or what his problem is but hopefully we'll know soon. Until then, here's Nate sitting.

Wednesday, October 6, 2010

October pics

Nate got 5 vaccinations 2 days ago and hasn't quite recovered. He's been pretty tired the last two days.

This is how he hides his earphones when he sits in the back of class.

Its his homemade eating poncho. His eating is very messy. When he eats it it really isn't any different than making a smoothie, but instead of using a lid to cover the blender so the smoothie doesn't fly everywhere he uses his face. Ergo, the poncho.

Oooooooo, scary! He wanted some Halloween pictures of him looking like a zombie/skeleton in his new PJs. Note the careful attention to detail as Nate made his hair look more zombie-ish.

Sunday, October 3, 2010


Some news. Nate turned six months this past week. 6 months! The only reason its not sad that he is growing so fast is because he isn't actually growing much at all. Nate still looks like he is 3 months old. We have a doctors appointment tomorrow and hopefully the doctor can shed some light on why he has only gained 3 or 4 pounds in 3 months or so. I think its somehow tied to his habit of not ever wanting to eat.

In other news I have found myself in the enviable position of having paid, temporary, part-time work. The details are not solid yet so I won't divulge too much other than to say it involves earning money. To be honest when he offered me the job I said yes shook the man's hand and left. I imagine he'll get back to me with the details.