Hello friends, day 2 in  room 4551 shands children's hospital Gainesville. As of this morning the Dr's are still working on a solution for Harley's multiple symptoms. 

As many of you know he was in nearly a month, home less than a week and then this:

Here's just a few of the main issues he has  had this past week ;

He's very tired, like nearly lethargic. His breathing is labored. He had swelling around his eyes and his stomach is more distended than it was a few weeks ago. 

They did labs and say that although many of his labs are irregular...they are "his average" irregular for the most part so we have to dig deeper. They will be repeated labs daily for now to see if anything changes.

The GI Dr's (Digestive system Dr's) feel that most of the solutions they have to offer would only be temporary fixes lasting only a few weeks before he would need them again. They express that some or most of his symptoms can be liver disease/ liver failure related. They may still do abdominal ultrasound or abdominal CT to see if there is anything else that might be going on.

Pulmonolary Dr's have also ordered another set of PFT'S test today or tomorrow sometime. He's doing extra breathing treatments again, and they might add oxygen for at nights.

The infectious disease Dr's are scheduled to swing by today or tomorrow to discuss if they have any concerns about side effects from any of his new or current medications. I currently have all of his meds written on a board on the wall....because I have been asked a bazillion questions about the medication schedule and prescriptions amounts. 

We have no idea how long we will be here this time yet but we are hoping to find out what can make this kiddo feel better.

Care packages and visitors are welcome!!!

Harley likes any of the following; lysol spray, BBQ Pringles, mountain dew, red powerade, watermelon, cheese pizza extra sauce from dominoes, milky way candy bar, thia tea with thia or teriyaki   chicken rice stir fry, lego, the waking dead, or anything to do with mushrooms or retro 80's stuff. 

Thank you all for your continued prayers and support throughout all of the medical stays we have had. It really means so much to our family.