Toni, I can only imagine what you are feeling right now. It's the NOT KNOWING that is so tramatic, at least in my opinion. I will say a special prayer tonight for Will. I can't tell you that you are overreacting because I would feel the same. I am a little concerned that he says he's fine when every indication (sleeping alot, wt loss, etc) indicates he is not fine. Can I suggest that on the way to Shands tomorrow you have a heart to heart with him? Let him know that no matter what he can always tell you anything. Reassure him that no matter what you can cope with anything-even bad news- if you know the truth. In my experience I have found that loved ones are reluctant to say how they really feel because it affects their immediate family so adversly. I would guess that he diminishes how he really feels so you won't be hurt or upset. This is a guess on my part because I don't know Will personally. Whatever the case may be do not feel guilty or bad. You are his mother and there is no love on this earth that compares to that. He is probably scared to hear what they have to say too. He needs to know that it is OK to be scared. Again, it's the NOT KNOWING that is so difficult.
Having gone thru so much with my mom, (Dr visits, labs, hospital stays, etc) I can tell from experience that sometimes its good news, sometimes bad news, and sometimes things are staus quo. No matter what-it's hard. We truly came to the point of acceptance. That was probably the hardest to take for me. Her deterioration was so quick that I really didn't have time to adjust emotionally. For myself, I deal much better with all the facts-good or bad. I guess that way I can set a plan of action. That's just me though.
You will say and do the right things Toni. I have evrey confidence in you. You are smart, well informed, and willing to do whatever is necessary. Go with your gut-time after time it has proven to be correct. Always trust your instincts. Kisses and hugs to you both.
"Dr's. changed their minds and instead of ultrasound they did CT."
Actually, this is a good thing, as a CT will show more of what's going on than an ultrasound. Yes, the nodule could be growing, though that's a small amount and possibly could have been measured incorrectly. I went from no tumor to a cancerous tumor taking up most of the rt. lobe of my liver in a year's time. And I'm still here. From what you've said, it sounds as though they are taking Will's case more seriously. Rather than being scared, be glad that he is getting tests, etc., to give the docs a better look at his problem. It's doubtful that Will is just going to keel over this week or this month. That must have been a draining trip and day at Shands. Make sure both of you get lots of rest this weekend! And thanks for checking in with the results of your trip!
"They don't even have his labs yet and Dr. sends us to a Transplant financial lady but, in same breath say's he's not at meld yet."
I nearly forgot to comment on this. There are some things that can be done in advance, and the financial review is one of them. Believe me, once testing for transplant is done and a match is found--things will go unbelievably fast! I got pre-registered last week for my upcoming surgery on the 14th. On the 12th, I will go to the hospital for an EKG, chest x-ray, and a pre-surgery consult. That way, when I go for surgery on the 14th, I can be prepped and poised to go right in without delay.
BTW, it's spelled varices. You were close. ;)
Post Edited (hep93) : 12/8/2007 12:16:56 AM (GMT-7)
Hi Toni, thanks for updating us. I thought about you two quite a bit yesterday. As for your question about the varices, they bleed when they rupture. Just because he has varices doesn't necessarily mean they will bleed out. My mom had them for years with no bleeding at all. Do you understand what varices are? If not then it would be easier for you to look it up on the web and get a full understanding so you will know what they are. They are doing the EGD to evaluate them. I worked for a short time in the endoscopy unit. EGD's are common proceedures and are done for several reasons not just varices. (In his case however that is why they are doing it). If he has not had this done before please reassure him that the proceedure does not take very long and he will be sedated before they do it. The most common sedation is called Versed. To me it is a miracle drug! I have had it for other proceedures myself. It is a sedative and amnesia medication. They give it thru the IV. There is seldom much of a hangover afterward and it makes you feel euphoric. It truly is a "I don't give a darn about anything" medicine. The EGD is an outpatient proceedure so when they have completed it they will take him to their recovery room. He will have his vital signs taken immediately in recovery and the drug starts wearing off very quickly. The nurse will get him to wake up a little then when they are done evaluating him they will have you come in to sit with him. They will NOT let him eat or drink anything for a couple hours. (that is because the tube they use for the EGD goes down the throat). However normally the patient goes home in about an hour after the proceedure. That includes their recovery time. For 24 hours they don't want him to operate any electrical machinery or drive a car. IT takes about that long for the Versed to completely exit from the body. He will go on the nods alot for several hours and sleep alot. That is normal. Unless things have changed that is how it works. I hope this helps a little.