Hoping for an update from Cindyz...

[KellyBelle]

I think I'm probably not alone in wondering how Stephen is doing. I've been thinking about you for a few days, and find myself checking the site often.

Any progress Cindy? You and Stephen are in my thoughts daily.

Kelly

[Twinsmom]

Same here, Cindy.

[blakeswife]

Me too! I've been thinking of you all day!

Hope you both have had a great, restful day of healing!

Kathy

[SkiFletch]

Me3. Good luck Cindy and Stephen, we're all pullin for you two

[Nanette]

Hi Cindy,

Please know you and Stephen are in my thoughts and prayers.

Thinking of you both...
-Nanette

[clarabelle64]

I've been think of Stephen and Cindy all day today too....thoughts and prayers to you both...
Clarabelle

[Russian27]

I hope everything is going in the right direction (improvement) Cindy.

[Kathleen808]

I am thinking and praying for the two of you also. Hope things are improving for Stephen.

Aloha,
Kathleen

[Lee]

I too add my thoughts and prayers for Cindy and Stephen. Please update us when you can.

God be with you both.

Lee

[cindyz]

What can I say? You guys are amazing. Truly, truly some of the best people I've ever had the pleasure of talking to.

I think it's time for us to go home. I talked to the charge nurse here for quite some time - just she and I - and told her about Stephen's reluctance to use Hospice at this point. We talked about the option of home health care, and Stephen is on board. He's ready.

Stephen is so very swollen now, it's gotten much worse. His legs - from his thighs down- are about 4 times the normal size. An ultrasound was done to make sure there wasn't portal vein thrombosis, and a CT scan was also done around 6:00. No word from the ultrasound, but that was done this morning so I think if it was PVT then we would have heard by now. You can press your fingers into his legs and the indentations remain - like silly putty.

Stephen is getting another tap tomorrow for hopefully some relief and for diagnostic purposes – they want to see if the fluid is sterile or if it still has bacteria. We have a referral in place to speak to someone with Home Health Care, and hopefully that will go okay. I have heard very good things about Hospice but not much about experiences with home health. I hope It will be a positive move. I just need to get him home, in his surroundings, with our cats and birds and daughters and love and life. He hasn’t had a breath of fresh air in 10 days.

After his GI doc saw him today (this was the first time he had heard that Stephen was here), he said that he strongly felt like Stephen’s edema was from malnutrition. He said that his albumin levels were low and he wanted to put some sort of tube in Stephen’s nose and feed his large bowel directly. He’s very against TPN. He said anytime you can get food directly “in,” it’s so much better. I forgot the type of tube…a “Dof-Hop” or something like that. He can have this at home, so that won’t be a problem.

I was so very relieved to find someone who didn’t automatically say that Stephen’s swelling is all due to liver failure. Certainly, his bilirubin and jaundice are apparent signs of this, but honestly…intuitively – and of course I’m not a doctor- I think that the malnutrition comment was accurate and helpful. It’s thinking outside the box and I like that.

So I don’t know what to expect now, not sure how home health works, whether they’ll take him home in an ambulance, what to expect as far as how active the nurses will be In our home….all these questions. The one thing that I DO know is that it is absolutely the right decision to take my husband home now.

[kimmercans]

Wonderful to here from you! Getting Stephen home will make a world of difference for both of you! A chance to get a nights sleep without interuptions, better food, and no chance of hospital born infection. Home health is like anything else...kind of like in the hospital...a good nurse makes all the difference. So, if you are not happy with your first nurse assignee...request a change. Your nurse is your lifeline when using home health. Cindy, you are such an amazing advocate for Stephen...he is so fortunate to have you by his side!

Kim

[Ashlee H.]

I, along with everyone else today, has continued checking the site for your update. Glad Stephen is coming home and you can get out of that hospital environment. Sending positive thoughts your way.

Ashlee

[Nanette]

It's good to see you here, Cindy! It sounds like you have a plan and once you are home, it will bring you some normalcy to your lives. It always feels so much better to be in your own home surrounded by family, friends and furry friends.

Home health is a great way to go. Kim is right on the money. A good nurse will make a difference. And if you are not happy with her, request another one. It will be such a big help to you and Stephen.

Keep us posted on how Stephen's doing. I hope his swelling goes down soon.

Sending warm thoughts and prayers your way...
-Nanette

[karin]

cindy,
great news!! It will be so much better for him to be at home during this wonderful springtime!! Please tell him we are all thinking of him and post when you can!!

Luv and hugs,
Karin

[clarabelle64]

Dear Cindy
thank you for letting us know the latest news about Stephen. Once you have him back home, in familiar surroundings, with his family etc, things may settle down enough to show some improvement....sending love and support to you and yours
Clarabelle