Super Nate and His Trusty Sidekick

Ok first, let's talk about this drawing for a minute.  Isn't it amazing!!!  My cousins have a friend who is an amazing artist.  His name is Danny Beck and some of what he draws is "comic book style".  I think my cousin said that he has professionally drawn for World of Warcraft.  I guess they all decided that they wanted to see what Super Nate would look like on the cover of a comic book.  My cousin said that the artist wanted to try and draw Nate as he may see himself when he thinks of his alter-ego.  They presented Chris and I with a framed print of this, the other night.  What could I do but cry?!  It's so beautiful!  Softie Bear as his sidekick!  So brilliant!  I just had to post it for everyone to see.

Unfortunately, Nate is not seeing himself as so super right now.  I keep telling him how strong he is and he screams at me (in his high pitched scream that is used when he is really, really excited or really, really pissed off), "I AM NOT A STRONG BOY!!".  Ok...sometimes you just need your mommy.

His inner Super Nate is of course prevailing and he is improving.  Lou Lou stayed the night with Nate on Tuesday night so that I could have Christmas with my aunt, uncle and cousins and I told her that her job was to keep him fever free.  I got there on Wednesday morning and he had been fever free all night, had an ANC of 60 and had taken a bite of a cracker!  Hooray for Lou Lou!

This slow process is hard for me, because I just want him to be better yesterday.  I know it took him several weeks to get here and may take several weeks to recuperate.  The only problem is that he doesn't have several weeks until he is checked in for his stem cell transplant.  We haven't been given a date yet, but it will be soon and he needs to be as strong as possible.

He is skin and bones and has absolutely no desire to walk.  When I say no desire, I mean he throws himself to the ground and screams at the top of his lungs if you make him try.  We are working on it.  Right now, he can't leave his room so there really is no motivation to walk anywhere anyways.  I'm hoping being at home will give him motivation to get up and playing.

Yesterday, the doctor said that we would be here through the new year, because it would take them that long to get him off all of the antibiotics they have him on and to switch him from the TPN (IV nutrition) to the NG tube (feeding tube that goes from his nose to his stomach).  Really, I was devastated.  I try my hardest to stay positive and think positive and roll with the punches, but the thought of ringing in the new year here makes me sick to my stomach.  I know it's stupid and "it's just another day", but I can't shake this feeling in the pit of my stomach that it's a bad omen to start the new year in the hospital...even if, truly, I don't really believe in such things.  Dammit, he was here for Christmas, can't we get a break?!  I told her that we had really, really, really hoped to have him home Saturday.  She said she would see what she could do, but she wasn't making any promises.

This morning I woke to Nate screaming "BLOOD!!".  We both got to start our day with the pinching of two bloody noses...which we hate.  Kind of made for a cranky day.  His platelets were already on order, thank goodness.  We spent most of the day snuggled in the chair, watching various programs and dozing on and off.  Not too bad of a way to spend a day with your sweet baby boy, though I much more prefer chasing after him as he single handily destroys the house by playing with every toy in it.  We did get the great news that his ANC was 210!!!  I told the resident, "get us out of here by Saturday", as I waved my hand in front of her face Obi-Wan style.  Well, the force is strong with me.  If all goes as planned, we will be discharged on Saturday!  The anti-fungal was stopped today.  If he is fever free (so far, so good) they will stop the "big dog" antibiotic tomorrow.  If he remains fever free, they will stop the other two antibiotics and send him home with the oral antibiotic for c. diff. (the only infection that he actually tested positive for).

Then there is his nutrition.  He is so, so thin...scary thin.  He needs food.  He hasn't eaten in so long and his mouth is just now healing, so he is kind of scared to eat.  Every once in a while he will ask for something, but then decides against it.  Or, in a new turn of events, will chew the item and then spit it out.  I think his taste buds are all off too.  That happens with chemo.  He is also not drinking.  This is also probably due to the fact that he is getting all the fluid and nutrition his body needs right now through his IV.  He needs to be beefed up though, and we can't take a chance that he will get home and not eat or drink (though, we are hoping he will come home and pig out like normal), so they placed an NG tube today. They are currently building up his NG feeds and turning down his IV feeds.  At home, he will be given the chance to eat his meals, but if he doesn't we can give him formula.  At night he will get a drip while he is sleeping to make him extra beefy.  I was really hoping to avoid this tube, ever since we learned that it was a probability when he was diagnosed.  First, because he will hate it (and he does, he screamed like a banshee when it was placed and has pulled it out twice already).  Second, (I shouldn't be admitting this) I didn't want him to have another thing that made him "look sick".  Stupid and vain, I know, but it's the truth.  Now that it's in, I am very grateful for the stupid thing (though, Nate is not).  I'm happy knowing that Nate will be getting all the nutrition he so desperately needs in the coming weeks.  Always on a learning curve, we learned that insurance will not pay for the formula because they expect us to feed our own kid.  While I understand this logic, I don't know how much the formula costs but I bet it's a lot more than a PB&J, some grapes, yogurt and a cup of milk and I don't think they take coupons (yeah, laugh it up those who know me well).  Plus, last time I checked, we didn't have to pay for meals that we feed our kid...in the middle of the night.  You'd think they could pick up part of it.  Ah...insurance.  I am very grateful for our insurance though...it could be much, much worse.

So, that's my story for the day.  I am so thankful for the little strides Nate is making and I'm hoping for leaps and bounds once that ANC fully recovers and we are home.  I am so, so, so thankful that we should be home for New Years.  We found out today that kids under 12 will no longer be allowed at the hospital, unless they are a patient, until RSV season is over.  We knew this was coming and expected it to happen far before now.  So, I am also super thankful that Wes and Ellie were able to see Nate for a bit on Christmas.  I am also thankful for all of you.  Your kind, encouraging words and unending generosity help get me through the day sometimes.