What a difference a week makes

Good Thursday afternoon my friends,

I am sorry that it's been so long since my last update. My days go quickly with all the doctors, therapists, respiratory, x-ray, nurses, and the like coming and going in our room. I started this update Tuesday morning. Now it's Thursday afternoon. So much happening. Let's see if I can catch you up.

Daddy has not had a fever in quite some time. The only problem with his nose is the tube that goes down it into his stomach. He has tried to remove it multiple times. The feeding tube could not be inserted directly into his stomach and Dr Hartigan, his surgeon, said he would not open him back up just for that. There is a smaller feeding tube that can be inserted through his nose into his stomach if needed. He has developed a yeast infection on his tongue and doesn't want the medicine put on to clear it up. He will let the nurses do it sometimes. Yesterday I pried his mouth open for them to finish. Have instructed todays nurse to do the same. Speech therapy took him to radiology yesterday for a swallow test which he failed. He did not like the taste or consistancy of the barium they wanted him to swallow so he told them no. Today we are allowed to give him water on a small sponge on a stick. He wants the cup but is not allowed. We gave him the stick this morning and he threw it on the floor. I got very stern with him and told him that was not acceptable behavior. If he wanted water, he would do it my way or not get any. Later he accepted the stick a few times. His heart rate and BP are doing good. THE VENT IS GONE!!!!! He has been weaned down to 28% oxygen which is almost like breathing room air. The trach cuff was changed Tuesday morning to a smaller size and the cuff deflated. Respiratory put a Passy-Miur valve on his trach which allows him to talk and we can understand most of what he says. His kidneys are working just fine. Blood sugar is doing well. Finger sticks are now every 4 hours, instead of every hour or two, and the insulin IV is gone. But he does get the insulin shots which he does not like. Last week his bowels stopped working. The tube feedings were stopped and he was put back on TPA for nutrition. A CT scan showed no obstruction. Fortunately over the weekend they started working again. Tube feeding have not resumed yet. Yesterday a stool culture was done and last night his room became an isolation room - he now has C-diff, a type of bacterial infection that is contagious. We must now wash our hands and put on gowns and gloves to go into his room. Physical and occupational therapy are working with him. He is up in the cardiac chair at least once a day.

Now to today .... It has all happened very quickly but we believe daddy will be transfered to Specialty Hospital either today or in the morning. Specialty is a rehab hospital where he will be taught to swallow, eat, care for himself and get him walking again. I believe he will eventually go home and that the trach is not permanent and will be able to be removed. My step mother is reluctant for him to go, she worries that it's too soon. She is comfortable in our little "bubble" here at St Lukes. I told her it is time to get her and daddy our of the comfort zone so we can get him home.

Since my last update I have been spending a great deal of time in the room with daddy. He knows where he is but doesn't understand all that has happened or needs to happen before he can return home. He asks a lot of questions and is confused at times. It is difficult for some of my family to be stern and unwavering when daddy doesn't want to do what he is told. I have no problem being the bad guy and standing my ground. I want him out of hear as soon as possible and will do what it takes to push him along. Wayne did come down last week for 5 days. It was wonderful to spend so much time with him and still spend my days at the hospital. We got to see fireworks twice and spend some quality time together.

I am hoping once daddy is transfered, gets situated and starts all his therapies, I will be able to go home. Wayne and I talked about this today. Will have to wait and see. I may need to stay to be the strong push he needs to get him home. I am praying God will make that direction clear for me. I am weary but still sure I am right where I am suppose to be doing what I am suppose to do.

Please pray that this is the right time to be moving daddy and for peace for my family during this transition.

Praying for clear direction.