Saturday, June 13, 2009

Just forward my mail to Childrens

We got to the ER this morning at 9am. They did a chest xray and a swallow test. Gary did not like the swallow test. It was different from the last time. They strapped him down on a board and had him drink. You can cleary see the liquid going up into his nasal cavity. The silly radiologist doctors tried to tell me it was not related to the disease. I looked at them with one eyebrow raised and started firing questions. They tried to swim in the Lake of Confidence. They are lucky I am a God fearing patient woman LOL! Although the poor volunteer who escorted us got an earful when we headed back. Gary is having nothing by mouth. They are fearing he may aspirate on food or drink. A protection of his airway as been ordered which they implement with nothing by mouth. There is talk of putting a feeding tube in until Monday when the other departments open up. I am going to fight that if I can but if they have to they have to. He is begging for water which I can't give him. His overall weakness is increasing. It took them 4 times to get an IV in. I think the IV team is the only ones who should do it. His arms are so swollen. They said the trouble is finding a vain in all the subcutaneous fat. I can relate. They are going to pulse him again. Run yet another round of steroids to see if they can get his swallowing disfunction to improve. I don't agree. We just had one on THURSDAY. Bottom line they are going to have to come up with a new game plan here. The steroids helped his rash but his levels are still very much elevated. I am not going stand around and watch him get worse while they run the same ol thing. The last I heard is they are going to give him nutrition thru his IV but he will still be "hungry". We are starting to swap out his mouth with water at least. I have no idea when we will get to go home at this point. Now that this disease has made its way to his arms and now his swallowing, I can't help to think of whats next. What is next lungs and heart? Swords are drawn, commence with the battle. I would love to say bring it but I am not the one laying down in that bed not able to eat or drink or sit myself up. So don't bring it. Spare him.

1 comment:

  1. Oh, Erika! I'm so sorry for what your family is going through! I'm praying that God will heal Gary and that He will comfort and strengthen you in the ordeal that you are going through.
    "Grammy" of Savannah, age 4 DX JDM 2/09