Thursday, October 11, 2012

My Theories

Here are my possibly theories on why Daniel will not drink from a bottle since his hip surgery.

I mean I should know right? 

Since I've been medically trained!  HA HA  NOT!

  • His throat is irritated from having the breathing tube shoved down his throat? Maybe it hit/pinched a nerve somewhere in the back of his throat?
  • He normally has a lot of spasticity in his body.  Because he is casted on his legs, his arms are more relaxed, he is not drooling....perhaps he used his tone to help him suck prior to surgery?
  • He had some possible seizures after surgery and perhaps he lost his ability to suck? (Everything else seems fine)
  • He had a very set way of sitting on my lap and drinking his bottle, now he cannot get into the right position so he is just refusing to eat?
  • The formula tastes different now because of the anesthesia? (suggest by another mom)
  •  He is just being a stubborn little boy and likes to stress me out? :)
He doesn't fit to well.

Out for a walk

practicing sitting up!

This honey bear and a gummy bear video gets him to drink.

At our new desk in the classroom!

Let me know what your theories are!

Monday, October 8, 2012

Two Weeks Post Hip Surgery

Ever do something for your child and midway through you have that thought of "Oh crap, maybe we did the wrong thing?" 

Yea? That was me the first week after Daniel's surgery.


I was scared to death. I kept it together until they took him to the actually surgery room and then I felt like I was going to barf. I cried. I'm big enough to admit that I didn't have my big girl panties on that morning. 

Yes, Daniel has had other procedures before but nothing where he has a tube shoved down his throat, or his hip sawed in half, where he has been knocked out for 3+ hours and came out in a SPICA cast from his chest down to both toes. 

We had a rough week after the surgery. The first couple of days Daniel was on Valium and Morphine every few hours. He was also on some medication to stop vomiting. 


If you know Daniel, you also know he does not have a g-tube and gets his nourishment from formula which he still drinks from a bottle. We have been able to keep him at a good weight without having to go the g-tube route. He is a stubborn, finicky eater. He likes to try everything but because of the weak muscles in his face he isn't able to chew up foods. If he is not sitting on my lap and in the right environment without distractions he will not drink his bottle. Its always been this way. 
Go ahead, say it "If he is hungry enough he'll eventually drink."
That is not the case with Daniel. He won't. Since his surgery, he hasn't. 
He will NOT drink from the bottle anymore. 
This poses a huge problem because he also cannot drink from a cup without losing a lot of liquid in the process. He also cannot suck from a straw. So for the past two weeks, I've been giving him Gatorade and any liquids he'll take from a syringe. Keeping track of how many ounces go in and how much comes out.

I can't figure it out.  I don't know why he has stopped.  Prior to surgery he'd drink an 8 -16 oz. bottle in 15 minutes.  Now, it takes all day to make sure he gets in at least  24 oz. of fluids.  I'm not kidding, my goal is an ounce an hour, 24 hrs. a day.  I've read that some kiddos appetites aren't so great after surgery, I've also read where some kids that have g-tube surgery stop taking everything by mouth.  But he had HIP SURGERY!  And we are sadly on our way if he doesn't start drinking soon, to another surgery for a feeding tube.  He is losing weight, which they say is normal for after hip surgery, we are keeping him hydrated, but eventually we will have to make the move for surgery.  Anyone else have any experience with kids refusing to eat?  Occasionally I'll get a few little bites of mashed potatoes, hummus, or creamed spinach into him, but not enough to make a difference.

Skin Breakdown

Daniel has super sensitive skin.  His record shows he has a tape allergy.  Well apparently while in surgery someone accidentally used the wrong stuff and perhaps tried to remove it with solution. We don't know for sure, because no one told us, but you can see the marks from tape, perhaps a tube taped in the spot to hold it.  So he has a "chemical type burn" on his ear.  After we got home from the hospital it blistered and got very swollen so a trip to our awesome pediatrician (she offered to come to the house!)  So now we are also on antibiotics and Silvadene cream for the burn.  

We also had to put moleskin around the top of his cast because it was rubbing on his back and sides causing more irritations.  Different ointment on those.  

Then we had our late night trip to ER because of a golf ball size knot on the base of his head/neck.  Five hours later and a CT scan...they say it was just an ingrown hair that festered and got swollen because he is laying on the back of his head more because of the casts.

I am happy to say that besides being tiring more quickly, being in a cast and not really eating well, Daniel is smiling and continuing to work on on his school work and upper body therapy.  

I am not regretting the surgery as much, but still have my moments! That could be because we are not able to travel, so we don't have a lot of occupy my mind.  We are starting back to a semi-normal schedule with school, home therapies and nurse visits. 
Daniel doesn't fit comfortably in the car and its a two man job to get him in, not something I can do on my own so no field trips!

Just want to say thank you to everyone who sent him Get Well cards, games, gifts and well wishes.  They are greatly appreciated. 

So anyone who has any ideas on getting him interested in eating again....please send them my way.
Thank you in advance.